Well! I bet you are as surprised as I am to be seeing another post on this account after I assured everyone I would no longer be writing here. But the thing about concrete is, sometimes it has to be demolished when you need to lay a stronger foundation for better things. And that’s what we’re looking at here, in many ways. I should have–I needed to–make this post literally months ago, but PTSD doesn’t just “play nice” because you suddenly need to make something happen!
Because of the difficult things I wrote about in my last post, I had a huge mental block telling me I didn’t deserve to ask for anyone’s help. This block was further cemented by the unfounded belief that, well, there are perhaps millions of people in my situation, so what makes me think I’m deserving of help at all, much less while they continue to suffer?
But not only is that another manifestation of survivor’s guilt, it’s another version of something else I was always told, which was, “There are people being abused so much worse than you, you think what you went through was bad?” Only now, I can argue back against those gaslighting tactics. Now, I know that I was only told it “wasn’t that bad” because
that’s what all abusers tell their victims, no matter what, and
it’s a control tactic used to prevent you from leaving, to prevent you from seeking help, and to prevent you from drawing negative attention to the person who actually deserves it: the abuser.
Most significantly, I can finally stand in my truth and state in my own defense:
If you’re being abused so horrendously, for so many years, that your own psyche starts to split into different parts and versions against your will just to survive your situation, then yes, yes it really was “that bad.”
What I need help with is paying for the costs of having to immediately pack up and move to an undisclosed location for my safety, completely on my own, without any help from anyone, after being isolated and controlled and abused for years by the very people who made me believe they were helping me.
It had to be done, but due to multi-faceted financial abuse on top of everything else (the number one reason victims can’t escape), I am currently in a financial hole I simply CANNOT dig myself out of without help. The crux of the matter is, I really don’t need much, but without this little bit of help, I will be barely surviving for the next 5-6 YEARS at the bare minimum, even if nothing else were to go wrong within that entire time frame… And we all know things don’t work that way!
Literally throughout my entire life, I’ve been outright harmed or threatened with harm for even acknowledging non-verbally that abuse was occurring. To do what I’ve been doing lately, actually speaking out loud? I’m undoing decades of brainwashing to make these statements, and even though I wish I could’ve completed this sooner, thereby getting assistance sooner, I have nothing but compassion for my brain’s dilemma in trying to overcome this. The Universe has helped me realize that asking for help actually doesn’t take away from others getting the help they deserve. God and His angels have helped me see that it’s okay to tell the truth about what I’ve been through, because not only will it help me heal, but it will help validate the struggles of other survivors and remind them that they, too, are allowed to speak. We’ve spent too long waiting for permission.
I understand that not everyone is going to be able to contribute, but when I did the math, I found that if everyone who follows my accounts donated even $3, I could meet my goal. Yes, seriously. That is IT. So before you decide that what you have left to donate isn’t enough to make a difference to me, please consider that. You just have to believe that what you have to offer, actually matters. Because it does.
And no matter what, please share the fundraiser link above, for two reasons:
(1) I don’t use a personal Facebook, because my abusers and their disgusting web of lies is all on show there. To see the same people who have tortured me and others, going online pretending to be kind and typing things like “hugs” and “smiles” to poor unsuspecting good people, just makes my skin crawl like nothing else. But GoFundMe says “Sharing your GoFundMe on Facebook can increase donations by 350%” so if you could please share it to yours on my behalf, that’d be wonderful. It’ll especially help me reach those who want to help support someone like me today, on May 12th, International Awareness Day for Chronic Immunological and Neurological Diseases. I know I’m not some organization, but I’m a real person with a real problem who also happens to have a very real solution. I will be directly benefiting from any donation!
Just by itself, even if you excluded all my other conditions, M.E. is an extremely disabling disease that has been proven time and time again to have the lowest quality of life of almost any chronic illness: “…[A]pproximately 15 times worse than cancer and two times worse than having a stroke,” a fact that I would never have believed possible if I hadn’t been struck with it myself. Frankly, that I got out at all is already its own miracle. But additionally,
(2) Your sharing this might put it across the path of someone else struggling silently in an abusive situation, inspiring them to keep fighting for their own freedom, or even just to put a name to what they’ve experienced.
There’s much more detail at the official fundraiser link if you want it, where I tried to explain things to all the people who haven’t been following my accounts for almost a decade.
If you’ve ever said to me, “I wish there was something I could do to help you,” this is your chance. Thank you if all you can do for now is read this, thank you endlessly if you donated any amount at all to help me restore my life, and no matter what, please, please, please share the fundraiser link: gofundme.com/kitwillthrive
This will not be a lighthearted post, but it has been a long time coming, as many of you have probably already suspected. The ole “I’m leaving this blog behind” announcement that’s been a couple years in the making, but of which I’ve only been certain I needed to make within the past six months or so.
For years, everyone has watched me say things like, I’ll post in this way, or that new way, or I’ll try this… But even though I have dozens of half-finished blurbs in my personal writing app (31 to be exact), most of what I’ve scribbled will never make it to the public eye. And I’m okay with that.
I imagined when I got back to a place where I wasn’t trapped in an isolated hell of cognitive confusion and anxiety, I would naturally gravitate back here, to the writing outlet and the people and the support groups that used to keep me going. Then I thought, maybe if I just quelled the desire to explain so much of my thought process, things might flow more easily to the page, while also being more digestible for my readers. Turns out, no, and furthermore, I love explaining my thought processes, and trying to make the breadth of my worldview smaller for some perceived idea of what my “audience” might be able to tolerate, is just another example of how I chronically shrink all that I am and all that I feel so as not to disturb the state of others.
When it comes down to it, as far as I can tell, I really have said everything I needed to say here. It is simply time to close this chapter.
Besides, the ultimate goal of any supportive community is that the members are supported so earnestly and wholly that they cease to require that facet of the community at all. It leaves room for those who still do, and makes room for those who will soon join.
Surely my own aging has a lot to do with things, too. The generation of people with myalgic encephalomyelitis who came before me are now slowly dying out, if not mostly already gone. And my own generation of people with M.E. are becoming less and less well-known; soon we’ll be entering into the years of early deaths, ourselves. Maybe no one will remember that we existed. Maybe no one will have learned from our plight or remember how hard we fought to help each other and society at large stay aware of the truth, believing wholeheartedly that to cure a disease you have to know which damned disease you’re actually studying. Maybe we will never get the help that we have always deserved from those with the most ability to give it, especially as the waters encompassing the ever-changing categorization of “chronic fatigue syndrome” become murkier year-by-year; especially as the knowledge of which disease M.E. actually is fades into history along with us. Because let’s face it:
There’s a reason people with myalgic encephalomyelitis die 25-30 years earlier than the rest of society, even if medicine doesn’t (or claims not to) understand why that is. People labeled with CFS probably do, too, because they cease to ever get diagnosed with whichever disease they actually had. And don’t even get me started on all the terminal diseases untreated Lyme bacteria will morph into! But my point is: For people like me, even if they cured this tomorrow, it would not undo decades of living with systemic disease. And a cure certainly would not save those who are already on their deathbeds.
But aging affects us all, and even as I aim to become more whole in spirit and healed in soul, it is the natural course of things for bodies to gradually lose functioning, and for bodies with diseases to lose it faster. It becomes more and more obvious each and every year that I am blessed to have, with each new diagnosis I acquire, that is not my job nor is it natural for me to keep going at the same pace I did when I first fell ill. Especially, especially at the expense of living this life that I fought like hell to still have. Most of you have no idea just how much, but read on to find out.
Combined with this realization is the trust I now have that the generations following us will make use of the information we’ve painstakingly provided for them, just as we made use of what our M.E. veterans left for us. I have more trust that the invention of social media has done something I could’ve never imagined when I first got sick, which is bring together all the people that the CDC and similar government agencies worldwide tried to silence, and give them a connected voice with which to Act Up during the years they are able. You can muddy the waters and call it whatever you want, but the fact remains that many people are going to get M.E. in the future, and many more are going to be put in the category of CFS or “ME/CFS.” And those people are going to talk, and demand to be studied.
To me, it’s simply a statistical improbability that the invention of the internet, the relative success of social media, and the tenacity of today’s youth should prevent the truth of things from ever becoming known, or prevent that cure. It might be too late for us but it will not be too late for those who follow, as long as those who are called to fight, answer that call. I answered that call when it was my time, and I need to look back at that and feel proud of what I’ve done and how much I contributed, instead of feeling I haven’t done enough.
I used to think there was something wrong with me for wanting to let this go. I used to look at those still holding on to the hopelessness and the anger and the dissatisfaction, and wonder why I wasn’t joining them, if I purported to care as much as I professed. It sounds ridiculous now, when I type it. And I used to respond to the guilt, when others claimed that because my writing was “so good” (even when it harmed me to produce it), or because I still had some cognitive ability intact (even when it wasn’t), or because my knowledge of our history was so extensive (because it was so much easier for people to expect me to do the learning and regurgitation of our info so others, usually others far more able-minded than myself, wouldn’t have to put forth the effort), that it was my main responsibility–in my own life!–to be their soldier. Of course this only refers to the extremists, which are present in all activism communities, but they were telling me and others like me, in so many words: We want what you’ve got, so do our bidding; Don’t deviate from the herd; You’re good at this, so you should be good at it for our sake; Continue on this way at any expense, because think of those who can’t continue at all; Tell our story, not yours.
Now I realize I may have gotten it backwards. They may still be caught in that place because they haven’t found a way to move forward, and I may be leaving because, I finally have.
I suppose there’s really nothing you can do or say in any situation like this, when anyone places their expectations on you to do something that isn’t actually your job, whether it’s an abusive family scapegoating you into taking responsibility for everyone’s problems so they don’t have to face their own shortcomings, or the social justice warriors bullying citizens into feeling personally responsible for the fate of millions while ignoring the larger role top-tier executives and businesses play, or the minorities of society being made to feel like their every action needs to speak for the whole, while society forgets they are just human beings like everyone else, with the same limits and the same needs.
Yes, as it happens more often than I’d wish to recall, I start out thinking I’m the oddball only to realize years later that I was actually responding in a very healthy and reasonable manner. Of course in the past, I’ve made those same mistakes from the other side of the fence, as a younger, more immature advocate. Don’t get me wrong; I’m not any better than anyone else. I just know different things now, and I have different strengths (and weaknesses), and my actual job, is to put that knowledge to use in my everyday life.
Here’s my question for you: What things are you doing, what are you still participating in that you might have actually outgrown?
Are there things you’re doing just because a lot of others in your community do them, but that don’t really resonate with you?
Are there people you tolerate because “the group” likes them, even when you see right through them AND the harm they cause?
Have you outgrown your community, but stay, remaining stifled because you don’t know what’s next for you, because at least where you are right now, you know the rules?
What are you doing in a particular way just because it’s always been done that way by others?
What are you doing just because it’s expected of you, when it goes against everything you think your life should be?
Stop participating in activities that stifle you. Don’t follow the herd when they jump off a cliff. Stop tolerating those people. Leave the places you’ve outgrown. Don’t stay in a situation that harms you just because someone expects you to play the supporting role to their center stage. Stop letting domineering personalities make you believe your most significant worth is how well your actions maintain their happiness. Know that it’s okay to move on, and know that you’re the one who gets to decide when.
It is my wish that every pair of eyes reading this right now will discover the full extent of their personal power to make any and all of those things happen.
In what I guess is my “send off” message, I encourage the same theme I’ve had going here for the past five or so years: If something in this post has prompted you to consider your life, let yourself consider it. More than anything, I want to help people see there are ways to do and to be what they want, and that maybe by witnessing someone do or become whatever those things are, that they find their own courage to do or be it, too. I feel very blessed that I’ve been able to do that with this particular blog over the past decade, and I plan on continuing to use my writing to empower.
Because I’m going to continue being who I am. I’m always going to be the advocate, I am always going to be the one who fights for those who can’t speak up and I am always going to be the one who speaks the truth, no matter which sphere I’m a part of at any given time, no matter which illness or injustice or imbalance I have to stand against. I will always be a little “too much” for some people and “not enough” of something for others. And I will always fight so ferociously for myself and others because of the depth of my love for us all.
Brace yourself for this next part if you’ve known me for a while, as it may come as a shock, and may also be triggering to those with PTSD, particularly Complex PTSD.
To state the bare facts: I have been traumatized and abused extensively in my lifetime, both in childhood and well into adulthood by sociopathic narcissists in my “family” of origin. I moved from here long ago, but was forced to move back to physically survive after I contracted several infections at once and became so ill that I was just barely evading organ failure at the worst of it. (Your organs start shutting down after your oxygen concentration dips below 80%, and mine was, well, exactly eighty percent.) But the only sane, truly loving, authentically compassionate person in my family died while I was still undergoing treatments. After that, my day-to-day existence became dependent upon “help” from these extremely abusive people.
Accepting help from a “narcopath” is the same as signing a contract with them ensuring they get full rights to abuse you in any way they want, with the hidden clause that you are not allowed to protest or they’ll systemically and immediately take all of that assistance away, usually in the order of most-critical-first so as to have the most impact.
I vividly remember the first time I fought back against being abused after my last loving family member had passed away. What followed became a clear message of what lengths they’d go to show me just who had the power now, and that it was no longer me. I wanted to call the police, but I knew that drawing that much outside attention to what I was experiencing would only guarantee even worse verbal, emotional, financial, psychological, and indirect physical abuse in the short-term AND long-term, as punishment. As it turns out, I experienced more and more of all those things, anyway, as the years went on. Abuse doesn’t get better, only worse. If you can identify with any of this, start planning your leave.
Indirect physical abuse is a type of physical abuse where the abuser intends to cause you physical harm, while stopping short of actually hitting you because that would leave proof which could get them arrested. For example, stranding a wheelchair-bound person somewhere without their wheelchair, or purposefully triggering someone’s PTSD (or any other illness) with the intention of causing them visible anguish. There are those in my extended family who have even been thrown into comas when their psychopathic partners intentionally triggered them into violent asthma attacks in order to watch them suffer. These incidents are usually followed by short-lived “honeymoon” periods to prevent the victim from catching on and trying to leave, but the cycle of abuse wheel will always keep turning.
There is a massive element of psychological abuse inherent in indirect physical abuse, because the perpetrator can usually gaslight the victim and even witnesses, including legal authorities, into believing that the victim “did it all to themselves,” since there is no physical mark left behind to help prove the origin of the harm was the abuser. Even though they can spend years learning the victim’s triggers and weaknesses so as to use them as weapons later on, it is much more difficult to prove malicious intent, and the abuser is usually very careful to only show this side of themselves to their victim. It is the reason “house of horrors” regularly show up on the news with neighbors claiming the perpetrators appeared good as gold to the outside world. Because these types know what is right and what is wrong, and which facade they have to apply, and when, and in front of whom, in order to continue hiding in plain sight.
There are innumerable reasons why I was forced to stay in that situation for so many years, and I’ll just have to trust that my readers will take into consideration my intelligence and my ability to make sane decisions, even when choosing the lesser of two evils. They treated me this way, for as long as they did, because they knew they could get away with it given the circumstances. When the circumstances changed and I became stronger, both physically and mentally, the abuse worsened in an attempt to keep me subdued. They should all be in jail for the things they’ve done to me and others, and in fact some of them actually are, for different abuses. But I have finally escaped from them, all of them, and I have a new roof over my head in a much safer location (unfortunately I don’t own this one, but). I have money with which to eat and survive, and no one knows where I now live.
I haven’t escaped unscathed, but in general, I am much more sound of mind than I probably should be, given my experiences. I wish I knew definitively why that is, but from my perspective, I think I owe this in part to:
Looking at things for what they are, even when those things are horrible, something not everyone can do;
Spiritual practices, including prayer, meditation, an unshakable belief in some sort of Universal Higher Power, mindfulness, and my understanding of the bigger picture (i.e. I am not my body but the divine spirit within this body);
Learning everything I can about narcissistic abuse and toxic family dynamics to remind myself it’s not “just me,” especially when I begin to falter and make excuses for them; and even
My near-death experiences, which helped remind me of the beauty and preciousness of life, and that abusers are only a small part of this world who can never override all the wonder and joy to be had here for those who are looking. Try as they might to control the reality of others, inflict purposeful harm, and prevent their victims from experiencing or showing happiness, they cannot override the dominant, divine forces of this planet.
And who knows what else. Of course this has come with a ridiculous amount of survivor’s guilt about being able to see through the madness and escape while others still believe in and suffer from the abusers’ alternate versions of reality… Which is probably why the survivor’s guilt related to other things–surviving hurricanes, floods, and the same diseases that have killed so many friends–has affected me so severely: it’s cumulative.
If I’ve gained anything from this situation, it’s that I have found and intimately know the real inner me, that still, small voice that is my Highest Self, and I know this part of me is always, always, always okay, no matter what. I’ve talked to people who don’t even know that place inside them exists, and yet it is the only reason I have been able to survive my life. I have, however, exhausted the limits of what I can handle on my own, and now it’s time to get help. I need treatment, and because I don’t have to be around the very people who are the reason I need that treatment in the first place, I can finally go get it.
I get to build a new life that fosters even more healing from all I’ve had to endure, including the life-altering disease that is PTSD. And I know I can do that, because I’m not afraid of facing harsh truths, and throughout my life I have always taken whatever anyone intended for my harm and transmuted it into knowledge that helped me become more loving, more joyful, more compassionate, and more resilient. I see my beauty for their ashes, and I want to use this next phase of my life to help others find theirs.
“But I’ve got a job to do, too. Where I’m going, you can’t follow. What I’ve got to do, you can’t be any part of. …I’m no good at being noble, but it doesn’t take much to see that the problems of three little people don’t amount to a hill of beans in this crazy world. Someday you’ll understand that. … Here’s looking at you, kid.”
In case you missed it buried within my last post: I learned I do have multiple sclerosis. My neurologist said the official diagnosis as of right now is “Clinically Isolated Syndrome,” which can present with or without optic neuritis. Mine presented with, but I recovered well from that attack and my ophthalmologist confirmed there is no permanent damage to my optic nerves.
CIS and MS are the same disease process, but since MS literally means “multiple scars,” CIS is what you call the first episode, because there are a few people who never go on to develop another attack. But that wasn’t actually my first attack, or even my first documented attack. Because I refused to get a spinal tap at the time, the last lesion was attributed to “post-infectious demyelination” or “atypical MS.” They wanted to test my cerebrospinal fluid for Lyme antibodies at the same time as MS markers, and I couldn’t afford to risk a false-negative Lyme test, which my insurance could’ve used to deny coverage for my antibiotics. I have personally watched someone have their treatment revoked until they did additional spinal taps to prove the bacteria were there, and there was no way I was going to chance that happening to me, as horrendously ill as I already was.
I’ve had about five neurologists since 2008 because they keep moving, so my current neurologist is under the impression this is only my first attack, hence the CIS model. Most doctors rigidly hold the belief that neuroborreliosis (Lyme disease that has spread to the brain and spinal cord) and multiple sclerosis are not related, so my “official” diagnosis will change depending on which doctor I see and their level of understanding about my history. At any given time it’s one or more of the following:
Clinically isolated syndrome
Inflammatory disease of the central nervous system
Demyelinating disease of the spinal cord
Disease of nerves in arms, legs, hands, and feet (what even is this diagnosis?)
Without medication, I regularly and predictably relapse about twice a year, about 5 months apart. I think the reason for this is, when my immune system starts to run out of options against the accumulating spirochetes, I usually develop a bacterial infection and require a short course of antibiotics, and those antibiotics also beat the Lyme back into remission for about 4-5 months max. But then the bugs build back up again, and my immune system gets stressed again, and I can’t fight off another bacterial problem again, requiring another short course of antibiotics which tithe me over for another 5 months… And so on. Rinse and repeat for the past five years since stopping Lyme disease treatment in 2012.
It wasn’t always so much like clockwork, though, for many reasons but largely because since “the big relapse” in 2012, I’ve only been able to tolerate an infant’s dose of antibiotics for maybe two days before my brain felt like it would explode. That is, until this year’s miracle happened:
In March, I was able to complete a 10-day course of antibiotics with absolutely no problem, for the first time since The Big Relapse. So, coupled with my new diagnosis, I decided to brave Lyme disease treatment again.
Yes, you read that correctly. What I wrote here five years ago has finally come to fruition:
“My friends say I can always begin treatment later after I’ve rested a bit more, but this is the equivalent of waiting until a cancer is stage 3 or 4 to begin treating. The disease is advanced, it’s harder to kill, and the treatment will be that much worse. … But regardless, this may be my only option, and all I can do is hope that with more rest, I will be able to begin treatment again in the future, and be able to handle it.”
My God, to be typing these words… There have been a lot of tears this past week. Over all my suffering, over all the life lessons learned, over all the years it looked like I would never make it here because of the constantly relapsing infections, over all the miracles that took place just in time, every time, so that I evaded further damage, and that I’ve actually healed from much of the damage already sustained… But mainly, over the fact that I am now here, having survived it all physically and mentally, and in a position where I am able to do something about it.
I made it.
And I’m starting treatment again.
We’re going to push it back into remission ON PURPOSE with an ACTUAL TREATMENT PLAN and an ACTUAL DOCTOR, not just skate by on whatever antibiotics I end up on, hoping it’ll be enough to fend off MS for as long as possible. The diagnosis is here! Time is up!
I’m doing pulsed antibiotic therapy this time–please research if you haven’t heard of it–because it turns out this is the best way to handle late stage Lyme disease that anyone knows as of yet. Continuous antibiotics may be necessary at first, but it will eventually come time for maintenance dosing instead of sustained eradication, because while chronic Lyme disease cannot be cured, it can be managed.
And please don’t come at me with your “it CAN be cured!” comments: People can be functionally cured, where the bacterial load is so low that it cannot cause problems, but there is no known way to permanently cure late stage Lyme disease, yet. It goes up there with all the other infections your body just learns to adapt to and live with, but which can cause problems again if conditions arise, and that is okay.
I wish someone had told me this when I first got diagnosed, but we truly are so much more advanced as a society in our knowledge of “chronic Lyme” than we were 11 years ago when I got infected. Back then, biofilms in Lyme were just a hypothesis, as was the idea that antibiotics were causing the bacteria to hide instead of die, both of which are proven facts, today.
It’s actually a comfort to know that even the strongest of bodies cannot keep these spirochetes under complete control, because it keeps in perspective that this is not just “my” body’s failure, or “your” body’s failure, but it’s not even a failure at all: It is the natural course of this disease to relapse and remit, and it is not your fault. There is nothing you were supposed to have done to keep it from doing whatever it’s doing, what it already did, or what it’s trying to do. I repeat, it is not your fault that you still have Lyme disease, and again, late stage Lyme diseaseCAN be managed. Alright.
Now, according to this 700 patient survey, only 55% of people with Lyme-Induced Multiple Sclerosis get better with antibiotics once the disease has advanced to this level. However, I’ve beaten the odds many times before, so I’m just going to do what I can do for as long as I can do it. This online research has many limitations but it does mirror the general consensus I’ve heard throughout the years.
The reason for these hit-or-miss success levels is believed to be because killing the bacteria when they have already initiated an attack on your nervous system has the potential to further advance the disease instead of abating it, because when the bacteria die they cause an inflammatory reaction. Adding further inflammation, in the form of your immune system going in to clean up dead bugs, to an area that is already inflamed because the immune system is already active there, will make things temporarily worse. The $64,000 question is whether the brain will recover or is there so much infection that this additional inflammation caused by the dying bacteria will be just as bad if not worse than the inflammation caused by just letting the disease take its course.
People with tapeworms in their brain face a similar dilemma: Because a dead worm in your brain could trigger such a massive immune response to clean it up, many must simply live with the parasite latent in their brain instead of attempting to kill it, which could actually turn around and kill them, too. We need to realign our focus with living a good life, not becoming “bug free.” They are not mutually exclusive.
I couldn’t pulse antibiotics five years ago because treating bartonella was the priority, and you cannot do pulse therapy with bartonella bacteria present. They mutate far too quickly in their attempt to survive, and become resistant to the antibiotics used. Some antibiotics like Rifampin can lose their efficacy after just one break in treatment, rendering it permanently ineffective against the strains present. So, long story short, I needed continuous antibiotics for bartonella for about two years, with lots of complications, it still relapsed, and only starting IVIG two years later saved me. But before all the latter happened, I made it about six months on continuous Lyme-specific antibiotics–the same ones I’m on now–before I hit the infamous treatment wall and became too ill to tolerate absolutely anything. I.e. “The Big Relapse.”
(I feel like I repeat myself a lot here, but I know most people don’t have the time or energy to go back and read how I got here or why my treatment is taking/has taken this route. All that is available, though, if you’re interested–there’s a directory of categories and tags/content at the bottom of this site.)
We’ve no way of knowing how I’ll respond to things this time, but just based on how I responded to mere Amoxicillin at the beginning of this year, I think I stand a chance to respond favorably. I’m running out of time to do something here, regardless. According to my last MRI, there’s a potential “something” in the front part of my brain that they’re going to “watch.” I just did two spinal MRIs and should find out the results this week.
One amazing thing I learned, though–again, only by getting a copy of my MRI results–is that I have successfully REmyelinated! The biggest brain lesion from my first Lyme/MS attack is fully healed!! About a year or two ago, I suddenly realized I could walk in the dark again without falling over, which I hadn’t been able to do since my hospitalization around 2010/2011. I assumed my brain had found some way around this damage by using its innate plasticity (i.e. maybe it formed some new pathways to circumvent the lesion) but no! Even better! It HEALED!
I am so proud of my body and its resilience. It’s things like this that inspire and remind me that it’s not too late to heal, and that my body still prioritizes towards homeostasis and wellness.
I’ve finished my first pulse, and I already feel so much clearer in my head it’s ridiculous. I owe this entire post to those antibiotics. In fact the last several blog posts I published before this one were antibiotic-induced (haha), where I hadn’t been able to finish anything since they wore off. The only thing I managed to type for this post before starting treatment last Thursday was one paragraph that took me an hour and a half, that absolutely exhausted me and ultimately made such little sense I had to delete it altogether, anyway. But after antibiotics? I typed the entire draft of this post you’re reading, in one day. Another day was spent editing, and today I finished polishing it up to be scheduled for tomorrow morning. But go ahead and tell us, IDSA, how antibiotics don’t do anything for us, will you?
Experiencing this phenomena again essentially confirms to me (1) how I was ever able to maintain this blog all those years ago, and (2) why I steadily and progressively lost the ability to write the longer I went without antibiotics, eventually getting to the point where I could only post when I’d taken an antibiotic or two, or when I’d scraped together one paragraph per month until I had something legible:
When the National Academy of Medicine (NAM, formerly the Institute of Medicine/IOM) released its recommendations for Systemic Exertion Intolerance Disease (SEID) as a replacement for “ME/CFS,” I saw a lot of people spreading this myth: That “post exertional malaise” (PEM) is what differentiates myalgic encephalomyelitis (M.E.) from other illnesses. This is not true, nor is this what’s explained in the NAM’s report. At most, the report says that the presence of PEMhelpsdistinguish it from other conditions, while it is what best distinguishes “ME/CFS” from idiopathic chronic fatigue. PEM alone is not specific to M.E., Chronic fatigue syndrome (CFS), or SEID, just like unrefreshing sleep is not specific to any one disease.Continue reading “The Parts of ME: Does “Post Exertional Malaise (PEM)” exist in other diseases?”→
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Today is International Awareness Day for Chronic Immunological and Neurological Diseases. Feel free to share this page or download the graphic and share iton social media with friends, family, and your circles. Like most diseases, people never hear of this one until it happens to them or someone they love, but facts about classic M.E. have effectively been buried beneath 30 years of misinformation. Many have lived with these diagnoses for years and never heard any of this before! It doesn’t have to be like this.
I’m hoping people diagnosed with CFS (or diagnosed with “ME” but by using CFS criteria, which happens often in places like the UK) will read this, think twice about how exactly they got their diagnosis, and begin looking for the real cause of their symptoms with a doctor’s help. Or, if they do unfortunately meet the criteria for M.E., they will learn what they’re really up against, how to manage this disease appropriately, and might even be able to find specialists to help with specific symptoms. Learning that you have the real M.E. also gives you the opportunity to slow disease progression with things like mitochondrial support, immunoglobulin replacement therapy, treatment for secondary infections, and energy management such as pacing and switching, in contrast to forced exercise most recommend. Repeated episodes of paralysis can cause additional permanent damage to the muscles; those unaware they have M.E. wouldn’t know this.
Just remember: Whatever your symptoms, whatever your diagnosis, all of us in this community understand your suffering and want the best for each other. If you’ve had a long day of advocating, here’s some very good news, and your invitation to rest.
Throughout this series, but especially in this part, I only ask you to remain open. But what does that mean? To quote Thich Nhat Hanh: “Usually when we hear or read something new, we just compare it to our own ideas. If it is the same, we accept it and say it is correct; if it is not, we say it is incorrect. In either case, we learn nothing.” So by being open, we agree to allow the information in and integrate it with the use of our intelligence instead of thoughtless reaction.
So much of the M.E. vs CFS debate is clearly a matter of perspective.
If you’ve been offhandedly diagnosed with myalgic encephalomyelitis (M.E.) or diagnosed with chronic fatigue syndrome (CFS), there’s a good chance you tend to to speak with those in the community who also have your symptoms. It’s easy to reinforce your own version of things when there’s nothing to challenge it; if everyone around is just like you, who wouldn’t feel right? You generally support research efforts into “ME/CFS” because you feel confident this research will actually help you and others, so your main advocacy cry is “More funding!”
But hold on…
Would you still feel just as confident that research being done on your illness was ACTUALLY being done on YOUR illness if all the people you talked to didn’t have your symptoms? Or would that make you wonder which disease researchers were ACTUALLY studying/what group of people the studies were ACTUALLY helping?
To quote a friend: “Before you jump on the bandwagon and decide that this is just a silly name war, consider the implications.”
What if everyone you talked to with your illness said they actually weren’t very fatigued and could exercise five times a week? Your thoughts are probably the same as what an M.E. patient thinks when we hear of someone getting an M.E. diagnosis (1) without getting sick after a virus, (2) without having any neurological damage, and (3) without experiencing any exertion-induced muscular fatigue and/or pain (with subsequent exertion-induced paralysis): How can they have a disease without any of the core manifestations of that disease?
Or, what if your version of CFS were suddenly renamed to “idiopathic rash disease” just because a lot of people with CFS get rashes? Over time, your disabling fatigue, post-exertional malaise, pain–none of it is required anymore for this new diagnosis, BUT! It’s now called “CFS/Idiopathic Rash Disease.” You might ask, but Kit, if none of the symptoms for CFS are required for Idiopathic Rash Disease, why on earth was it ever combined? Well, because the Idiopathic Rash group advocated so strongly that the illnesses should be combined–after all, even though they have little in common now, it did originallystart as a type of CFS, right?–that it ultimately becomes known internationally as “CFS/Idiopathic Rash Disease.” This looked like a good thing to the thousands of people who had no idea what “real CFS” was, so there wasn’t much protest from society at large…even though this combination further muddled everything (especially research!) by combining what used to be called CFS–your disabling fatigue, pain, sleep problems, etc.–with a new category that the government invented to study unexplained rashes.
Meanwhile, CFS advocates are feeling increasingly helpless that the majority of their patient group is being replaced with something that only barely describes their condition–your condition!–pleading, “This rash disease used to be called CFS, because we all had excruciating fatigue and post-exertional sickness! What is left to study our illness if all research is going towards unexplained rashes that could be caused by a million different things? Some of us are dying!” Incredulously, the people diagnosed with Idiopathic Rash Disease truly think they have the same illness as you, as classic CFS, even though they didn’t need nor have any of your symptoms for diagnosis.
How do you suppose research on “CFS/Idiopathic Rash Disease” will actually study people like you, now, when classic CFS is being buried year after year by more and more people who just want answers to their rashes…? And truly, they deserve those answers, don’t you think? You wouldn’t want to deny them their own research just because the government made a nonsensical decision to replace CFS with a focus on this new rash disease. But nonetheless, both groups are synonymous with each other, now, and across the globe people are starting to forget that CFS was once its own category, with its own symptoms that had nothing to do with idiopathic rash.
One day, you realize thirty years have passed, and all the new patients being diagnosed with “CFS/Idiopathic Rash Disease” don’t evenremember when CFS was its own illness anymore. Funny thing is, everyone is quick to remember the part where Idiopathic Rash Disease started because of some CFS patients with rashes, but no one seems to remember that that’s where their similarities ended. You’re no closer to science figuring out what’s wrong with you, nor is anyone with Idiopathic Rash Disease any closer to finding out what’s really causing their symptoms. In fact, these new, uninformed patients are now yelling at you, an original CFS patient, claiming none of this even matters. Why are you so caught up on a name? Idiopathic Rash Disease is the same as CFS because it was created from CFS patients. And if no one likes the name of “idiopathic rash disease” maybe we’ll just petition the government to call this “CFS” again–that would help everyone, right, if we just took all these random rash patients and said they have CFS?
Hopefully that scenario upset you. Hopefully it made your head spin to think that anything so nonsensical and unscientific could ever happen. Maybe you’re even outraged and ready to end this hypothetical situation…
But this is exactly what happened to people with classic M.E. when CFS was invented. CFS was created to study “chronic fatigue of undetermined cause” and as the years have passed it’s morphed into a hybrid that still doesn’t describe any one condition. And it is not the fault of the CFS patient (or “ME/CFS” patient) that they’ve been so misinformed by the people they thought they could trust, or that those in power leave out major details when discussing ME and CFS history. But if it were you, if you REALLY WERE being replaced and forgotten in favor of a new illness that doesn’t describe your disease, wouldn’t you want someone to speak up for you?
So why do people look at us like we’re doing something wrong by reminding everyone that chronic fatigue syndrome is not M.E.? I quote again: “Before you jump on the bandwagon and decide that this is just a silly name war, consider the implications.”
Luckily, the illness defined by Ramsay et al. called myalgic encephalomyelitis is not that easy to get. But
we all got sick after a virus;
we all have measurable neurological damage; and
we all have a very distinctive muscle pathology, a sign that was described by multiple doctors who all came to the same conclusion without having any communication with each other: “Muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME of mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.” (Quote by Dr. Melvin Ramsay, although all M.E. experts explain this same phenomenon in their own way)
And finally, none of us are being studied at all unless we piggyback into research with other illnesses. People with classic M.E. have been forgotten, and this has been worsened irrevocably by (1) fighting to have ME and CFS combined into “ME/CFS” without fully understanding what this does to us or how much it further harms everyone, as well as (2) efforts to rename CFS to M.E., which is entirely illogical. Several recent polls have revealed that patients prefer the name M.E. because it sounds more legitimate, even though most people diagnosed with CFS–and even people diagnosed with ME without thorough inspection–do not actually have classic ME.
It makes no sense to rename CFS (and SEID) to “M.E.” withoutalso changing the diagnostic criteria to actually reflect M.E.: This is not 1988, the CFS bucket no longer contains just people with my illness, or just people with your illness, but dozens of misdiagnoses combined under one label. So why on earth would we rename one condition to another condition that it isn’t? I think the only thing these poll results prove is just how misinformed our community really is about our history, which is a major reason I’m writing this series. (I also left a comment to that post.)
So what’s my point in all this?
People who do get this infectious neurological disease–classic M.E. as it was defined before being unduly influenced by CFS and psychiatry–deserve to be and should be studied on their own, NOT forced to share the diagnosis and subsequently the research opportunities with other illnesses, all because a mistake was made thirty years ago. It’s not about the name itself as much as what the name used to stand for: I don’t care if we start calling it Egg Disease, as long as it actually describes and studies us, and only us! Until we consistently group people like us together and study them, we will never know what is causing this illness or how to relieve the suffering of people who move into the chronic, incurable, relapse-remitting or progressive forms.
All of these outbreaks didn’t just just magically stop occurring when CFS was invented. M.E. outbreaks are still happening even though the epidemics are no longer being recorded or studied. Cort Johnson wrote that Dr. Byron Hyde mentioned having “reports of over sixty” M.E. outbreaks from just 1988 to 2003, which were “no longer figured in the literature” and “were not given any mention in the ICC” (International Consensus Criteria). This should horrify people, and yet…
So please tell me how people with classic M.E. are supposed to be okay with what’s happened. Please tell me how research on people who became gradually fatigued is supposed to help people who all got sick after a virus. Please tell me how research on people who are chronically fatigued is supposed to help people whose breathing muscles are so weak many must sleep propped up or suffer from hypoxia; who exhibit clinical heart failure after exertion; who can’t write without risking arm paralysis; who can’t get up from the lying position using their back and abdominal muscles (which used to be such a prominent feature at the onset it was almost a diagnostic sign). And please tell me how giving people a diagnosis of M.E. without requiring the core manifestations, without checking for bacterial infections like Lyme disease, or even without giving them an MRI, is supposed to result in anything other than continued disaster (for us and the integrity of research).
If you want to pretend none of this is true–that you didn’t read any of this, that infectious M.E. doesn’t still exist–you won’t run into any shortages of other places to go. There are countless patient groups for you to join that will say none of this matters because it’s not THEIR symptoms that are being ignored. You’ll still have those options… But I ask you to contemplate having your disabling condition replaced by idiopathic rashes, like we’ve had our disabling condition replaced by idiopathic fatigue. After reading this, you are aware that we still exist and that M.E. epidemics are still quietly occurring. Don’t forget us.
All of that said, I do think we’re too far gone to erase CFS or SEID, despite some claiming it is the only way forward. I do not think it is the only way, nor do I think it’s even plausible. In reality, while we’re fighting for change, people are going to be misdiagnosed with CFS (and SEID, if it’s implemented)…including thousands of people with M.E. This is terrible because it diagnoses us too late for intervention, doesn’t give us the treatment advice we need in time, and doesn’t allow us to partake in research that applies specifically to us. But not all “ME/CFS” research has been fruitless. Some researchers select specific subsets–such as focusing on post-viral acute-onset cases while at the same time selecting patients who meet the Canadian Consensus Criteria, the only criteria that specifically require muscle fatigue–and we do get somewhere. That is exactly how the recent “robust evidence” paper selected their patient group, and it most likely included many patients with actual M.E. because of it; to that effect, the results actually match historical knowledge about ME in several ways. I also personally hypothesize that if SEID inadvertently catches a greater number of people with M.E., coupled with increased funding, this may one day force science to separate us into our own group yet again, if we repeatedly show abnormalities that others CFS subsets cannot reproduce… But I’ll have to explain all that in a later post, as this one is getting uncomfortably long.
Lastly, consider this:
There are thousands of rare diseases that will never be studied or researched. I think sometimes we get lost in the idea that it’s others’ jobs to fix us instead of our job to continue living our lives as best as possible. It’s wonderful that we’ve created a system to study diseases and relieve suffering, even if those systems get it very, very wrong sometimes. But M.E. has existed for centuries and will continue to do so, no matter what people call it, no matter how many people try to say we don’t exist. So listen to me:
I believe you. I’m sorry we’re on this particular journey together. And it is my most sincere wish that you not only discover the truth about this disease to the extent that it will help you (the books by our experts are some of the most validating things you’ll ever read) but that you’ll also do everything you can to increase your quality of life while you’re here, because you do matter. Dare to find enjoyment in your life, even if it’s difficult, because your life isn’t over just because you or a loved one got sick. In the mean time, we have to help each other, and I hope to do my part by not letting the truth die out. If you are also a person with classic M.E. or their carer, I invite you to share your story with the world, as well.
“If you destroy the record, you destroy the truth.
I’ve learned in my adult life that the will to silence the truth is always and everywhere as strong as the truth itself. So it is a necessary fight we will always be in: those of us who struggle to understand our common truths, and those who try to erase them. …
All so precious and fragile. Don’t let anyone tell you that the truth can’t disappear. If I believe in anything, rather than God, it’s that I am part of something that goes all the way back to Antigone, and that whatever speaks the truth of our hearts can only make us stronger. Can only give us the power to counter the hate and bigotry and heal this addled world.
Just remember: You are not alone.”
(Paul Monette, “Last Watch of the Night: Essays Too Personal and Otherwise.”)
It takes a long time for me to integrate new information.
And as anyone in the ME community knows, we’ve had a ton of that since February. Instead of blindly powering through, waiting has given me a month to gather facts, opinions, and input from our advocacy leaders, my trusted friends, and even the IOM committee members. The best way for me to write and for you to read (that is, if you want) is to break it into parts.
Please note that each post will be able to stand on its own: Don’t fret about having to remember plot-lines from week to week; this is not a story. This is definitely. not. a story.
All right. Fasten your seat-belts, gather your friends, because here we go. It’s time to make some sense out of all this.
The Problem with M.E.-only Advocacy, and How SEID May Help
Does encephalomyelitis really exist in Myalgic Encephalomyelitis (ME)?
The ICC or CCC as an M.E. definition: Are we promoting bad science?
Why do we advocate?
Note: Some of these might be combined or further segregated as I go along.
Let’s begin by clearing something up: How did we get here? The confusion between M.E. and similar states has always been a point of controversy. Today’s over-inclusion involves M.E. vs Any other disease with chronic fatigue; before CFS, the over-inclusion was of M.E. vs. Any other disease with chronic post-viral fatigue. These illnesses have also always been thought by many to be purely psychological in origin…along with 95% of all other ailments, because that’s just what people did back then. (Hysterical wandering uterus, anyone?)
But why hasn’t M.E. moved forward with all the others, especially after decades of documented outbreaks and with so much research proving it’s an acquired disease of non-mental origin?
The major denial of M.E. in both the US and UK has stemmed from people with too much power failing to examine a single patient.
McEvedy and Beard–both psychiatrists*–wrote their deplorable 1970 re-analysis of the 1955 Royal Free epidemic without doing a physical examination on a single patient, basing their feedback on data which they decided could just as easily have been hysteria…not out of some moral obligation to scrutinize data, but because McEvedy was a psychiatry student who needed an easy paper to write for his PhD. Professor Hooper writes of this:
“McEvedy stated that he did not examine any patients and undertook only the most cursory examination of medical records. This was a source of great distress to Melvin Ramsay who carried out the first meticulous study of the Royal Free outbreak. The outcome of McEvedy’s work has been described by one of the ME/CFS charities as “the psychiatric fallacy”.” (1)
Dr. Hyde writes of his personal visit with McEvedy in 1988:
“Why had he written up the Free Hospital epidemics as hysteria without any careful exploration of the basis of his thesis? I asked.
While over in the US, it is well-known that the CDC did the exact same thing:
In response to several 1980s M.E. outbreaks, CDC investigators looked only at patient charts–NOT actual patients–and returned to their offices to make jokes about our presumed “hysteria.” It wasn’t until the doctors attempting to manage these outbreaks took over $200,000 of their own money to pay for MRIs, that they found their patients had brain lesions indistinguishable from those found in people with AIDS; because these findings were not seen in ALL patients, they were not taken seriously, despite being consistent with myalgic encephalomyelitis. In 1988, the CDC christened the continuing outbreaks as a new illness–chronic fatigue syndrome (CFS)–effectively because three M.E. experts left the committee early due to a lack of patient information and the remaining committee’s preoccupation with Epstein-Barr Syndrome. (2)
From the criteria that developed to study CFS (which was only intended “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause“), we have helped cultivate an old mess that still exists today: Thousands of people diagnosed with everything under the sun, whose illness is being called myalgic encephalomyelitis. This includes thousands who don’t meet even a single criterion for what was actually M.E. before the invention of CFS or the watered down post-CFS model of ME that exists in many countries today.
As you can see, this is the reason some diagnosed with CFS do have M.E., and the reason much research does still apply to M.E. even if the titles “CFS” or “ME/CFS” are used. The trick lies in checking the methodology: If patients were selected using the ICC or CCC (especially in addition to another criteria), there’s an excellent chance the results could apply to classic ME. If they were selected to meet certain additional M.E.-like criteria, such as a post-viral onset, even better. But if patients only had to meet one CFS criteria (or something equally nonsensical, such as the UK’s “NICE guidelines for CFS/ME”), proceed with caution, because this may mean the only thing the participants had in common was “a fatiguing illness.”
“Even if the truth is buried for centuries, it will eventually come out and thrive.” (Burmese Proverb)
(P.S. – I thought I should finally publish a Facebook page so I can be engaged with the wonderful groups and people there, and also share things that are both too long for my twitter and too short for blog posts. Watch it for updates of new posts, things relevant to Myalgic Encephalomyelitis and related diseases, Lyme Disease and related content, Buddhism and spirituality (theists and non-theists welcome), Mindfulness and other meditations, coping, advocacy, and more. You CAN post to the page, but things will be moderated–checked by me for inappropriate content before they go public–to keep it a safe place: Differing opinions are NOT seen as confrontational, just don’t talk down to others. :) Thank you for your “Like”!)
I recently witnessed this exchange that took place across several days, about what all too often happens when people try to educate others on this matter. Brooke and her friends have graciously allowed me to post their conversation on why people resist this truth so fervently, as a guide for all of our understanding.
(She would post it on her own blog, but now lacks the cognitive flexibility to organize and edit as I’ve been blessed to accomplish here over the past week. I’ve edited the quotations only to clarify the intended meaning and combat the effects of cognitive disability.)
“All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident.” Arthur Schopenhauer, German philosopher
Renee Roszkowski: “Just got called ‘disrespectful’ for trying to educate on the fact that M.E. and CFS are not the same thing and the term ME/CFS is not really a good term.”
Brooke: “I’m sorry to hear that. Unfortunately, it’s not too uncommon for (some) people diagnosed with CFS to get upset when people try to explain the difference. I can understand: They go so long not knowing what’s wrong with them, being judged, told it’s all in their heads, etc, and then a doctor finally gives them a diagnosis frequently linked together with a very real, fairly well-understood, officially recognized neurological disorder, so they want to cling to that. Being told they may not have M.E. (and most likely don’t), puts them back in the position of, “Well, then what’s wrong with me?” And that’s difficult to accept.
It’s hard for those diagnosed with CFS to accept that they *don’t* actually have a diagnosed illness, yet; that all they have is a diagnosis that says doctors don’t know what their diagnosis is; that it’s not a single, treatable illness able to be researched like so many have been led to believe. (It was never intended for CFS to be its own disease; it was intended to “to provide a rational basis for evaluating patients who have chronic fatigue of undetermined cause.” ¹). Finding out that they need to go back to pushing doctors to do whatever tests are necessary to find their *true* diagnosis can be extremely disheartening. …
It’s just difficult to help people get past the initial frustration or fear-induced reaction of disbelief, and help them move on to the idea of, “Hey, if I don’t actually have M.E., there’s a decent chance whatever I *do* have has at least some level of treatment available–maybe even a cure.” It’s difficult to go back to pushing for answers, but it is oh-so-worth-it for those who finally find them, and find some level of relief from their symptoms!“
Renee: “I can totally understand, having been diagnosed with CFS, but actually having Chronic Epstein-Barr Virus, endometriosis, probable POTS (not yet diagnosed but I meet the diagnostic criteria), and potentially having a thyroid disorder, ALL of which have fatigue as a major symptom. I totally understand.”
Brooke: “Yeah, a lot of people diagnosed with CFS also have other diagnoses, which is kind of crazy if those other diagnoses can explain their fatigue, because a requirement for a CFS diagnosis is that your fatigue is not explained by any other illness ² (again differing from M.E., which, like any other neurological illness, you can have even if you also have other conditions causing similar symptoms). Why do doctors diagnose people with CFS if their symptoms are explained by other (testable) conditions? Not only is that medically incorrect/[completely against the criteria for diagnosis], it just doesn’t make sense to me. Diagnosing these individuals with CFS [when other conditions explain their symptoms] then saying it’s the same as M.E., is like doctors issuing a statement that everybody with a condition that causes any form of fatigue will now also be diagnosed with cancer.“
Jennifer Phillips: “What people mean is too often not what actually gets heard. ‘CFS is not a real diagnosis’ can all too easily get heard as ‘CFS is not a real disease and you’re making up how sick you are.’
You need to approach it like this:
“You probably know that CFS captures a lot of different diseases that doctors just don’t know how to diagnose, right? People with CFS are sick, but not all in the same way. But M.E. has a distinct diagnosis and known cause. So if you’ve been diagnosed with CFS, you may or may not have M.E., depending on if the doctors have done these diagnostic tests or not. If you don’t have neurological problems, you probably do not have ME. This does not mean you are not sick, but that the knowledge about M.E. likely can’t help you and chances are your doctors need to keep figuring out what your CFS really is from.“
Brooke: “That’s generally how I approach it when explaining to people who don’t already know all this stuff. I’m a bit more blunt (or rather, I just don’t take the time/energy to be extra careful in wording) with people who I know already get it and have the same views, but I agree, when educating you do have to be careful not to come across as saying the person is not sick. Most people diagnosed with CFS have heard that too much in their lives, and will be quick to get defensive–I know, because at one point I, too, was (mis)diagnosed with CFS. The vast majority of people with CFS don’t have M.E., so in a way I ‘lucked out’ once I had the CFS diagnosis, in that it wasn’t too hard to find the accurate diagnosis from there (with the proper tests to correctly diagnose it). But I do think most people with CFS have at least one physical illness of some kind. Even for those whose illness is psychiatric, that’s nothing to look down on. (For example, one study found over 30% of individuals with Major Depression were misdiagnosed with CFS: “Findings indicated that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition.” ³) There are often very real chemical/physical causes behind mental illness, too. They simply need to find the truth, whatever their true diagnosis is, so they can look for appropriate treatments.”
Renee: “I told them that I have CFS and a friend with ME, so I don’t think I sounded dismissive.”
Brooke: “One of the issues I see all too often is that many CFS patients actually *don’t know* that CFS includes people with lots of different illnesses. They’ve actually been told by their doctors and others that CFS is one single illness (“otherwise, why/how would anyone research it?”) and that “it” is synonymous with ME. They think that as long as you have unexplained fatigue lasting six months or longer, you have ME. Getting people to understand that (1) there is no single “it” when it comes to CFS, (2) that ME is something *entirely* different (most M.E. patients don’t even list “feeling fatigued” as a major symptom; our fatigue is at a cellular level and can contribute to the transient paralysis many of us experience), and (3) that *every* diagnosis of CFS is a misdiagnosis [because CFS is not a single disease but a diagnosis given when you have unexplainedfatigue, nowadays particularly when you have unexplained fatigue with a post-exertional crash] – that can be a real challenge.”
Jennifer: “Which is why I phrase that point up front, as something they either know or don’t know, *not* something open to debate or telling them what to believe. Like you said, that confusion is why you want to educate people.”
Richard Heckart: “A closed mind is worse than an empty one. That’s my new saying from now on. Pass it on.”
To additionally put this in perspective for you:
It’d be like if the government suddenly stopped diagnosing Multiple Sclerosis and started calling all new cases “Weak Leg Syndrome,”deciding that the primary symptom of this new syndrome is weak legs. Eventually it gets dubbed “MS/Weak Leg Syndrome.” And now they’re saying that all you have to do to help weak leg syndrome is exercise because some people got better that way; they think other people simply have weak legs because they’re too depressed to move. Oh, and because MS = Weak Leg Syndrome now, no one ever gets diagnosed with actual MS anymore, so people with actual MS never get the correct life-saving treatment, therefore everyone who actually has Multiple Sclerosis, dies. Sounds crazy, right? Can you see this actually happening with any other well-known disease like this? Not at all. But that’s what happened to people with classic ME.
I hope people understand we are not just trying to nag you, or get validation for “our special disease” while leaving out everyone else. This isn’t a club anyone wants to be in. Everyone is suffering because of this international confusion. And because you can’t reliably study anything that isn’t clearly defined, no matter how many times they rename it or move around the same criteria, CFS still won’t be its own disease. There was no need to ever create CFIDS/CFS/SEID when the illness occurring in the 1980s epidemics already had diagnostic criteria, it already had a known cause, and it already had a name: Myalgic Encephalomyelitis. But instead of continuing to use it, the government created something entirely different, and all government-funded research on people with classic M.E. abruptly stopped.
If you get diagnosed with CFS but don’t meet the diagnosis for the original illness (M.E.), it means you have something else that your doctors haven’t yet identified, ranging from the potentially treatable to the potentially fatal. So please continue to educate yourselves, *and* your doctors, because they are not omnipotent gods incapable of mistakes. There are also things you can do to slow down the progression of M.E., if you do indeed have it. And last but not least, don’t think that just because you have Post-Exertional Malaise (PEM), that you automatically have ME, because post-exertional malaise does exist in other diseases.
I have a friend in the UK who’s been diagnosed with “ME/CFS” for several years without having ever been given an MRI. But yet she’s in a wheelchair, getting worse, and shows several defining symptoms of MS.
Maybe she just has Weak Leg Syndrome and needs to walk it off…
♥arainbow at night
Resources for M.E. and CFS
Ongoing Series: The Parts of M.E. on a rainbow at night:
The misdiagnosis of CFS“None of the definitions of CFS defines M.E., so what do they define? What does a diagnosis of CFS actually mean? Why is every diagnosis of CFS merely a MISdiagnosis?”
If You Mean M.E., Just Say M.E.!“ME G93.3 is listed under neurological diseases. CFS R53.82 is listed under Symptoms, Signs and abnormal clinical and laboratory findings, not elsewhere classified. So the ICD-10-CM officially states that ME and CFS are two separate diseases, classified in two different categories, each mutually exclusive of each other.”
CDC Toolkit: Diagnosis and Management of CFS“The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.”
Articles by Professor Malcolm Hooper “The term BENIGN MYALGIC ENCEPHALOMYELITIS was first introduced in the UK in 1956… The word ‘benign’ was used because it was thought at the time that the disorder was not fatal (as poliomyelitis could be, with which it had some similarity), but it was quickly realised by clinicians that ME was not a benign condition, as it has such high morbidity… By 1988 clinicians had stopped using the word ‘benign’ and referred to it as ME, the first to do so being Dr Ramsay. However, the ICD still uses the term ‘benign’ in its classification.”
Note: Because of thirty years of confusion, some information labeled under CFS may be relevant to M.E., since some researchers use additional characteristics and biomarkers to select for different subsets of patients; for example, selecting the most severely affected (which through no coincidence tend to be those with M.E., often due to years of being told to exercise when this leads to disease progression and premature death), those with an acute viral onset, and those who met diagnostic criteria which required muscle fatigue on exertion. Likewise, not all information labelled “M.E.” is actually referring to the specific disease of myalgic encephalomyelitis, and may only be borrowing the name while in fact the data therein describe general CFS or “ME/CFS.”
(2) The IOM recommended on Tuesday, February 10, 2015, that this requirement be lifted, but please bear in mind this has not yet been implemented by the CDC or become customary for doctors; diagnoses of CFS are still and have always been made on the basis of unexplained fatigue, whereby any other diagnosis is supposed to disqualify you from having CFS, because CFS is a diagnosis of exclusion, i.e., not a specific illness but a category people are put in when doctors cannot explain your fatigue and other symptoms, even if your symptom of fatigue is post-exertional fatigue.
Today’s post comes to you with a mix of emotions. Hope. Grief. Joy. Bittersweet, if there were ever a scenario in which to feel it.
Erica Verrillo e-mailed me last week to share some important news. For this year’s awareness day on May 12th, there will be a demonstration at HHS headquarters in San Francisco to raise awareness of myalgic encephalomyelitis. The information reads as follows:
JOIN US IN SAN FRANCISCO ON MAY 12!!
On Monday, May 12th from noon-1PM there will be a gathering at HHS headquarters at the Federal Building (90 Seventh Street)
“30 Years of Neglect”
30 years ago the town of Incline Village, Nevada was struck with myalgic encephalomyeltitis (ME), a neurological disease that HHS derisively named “chronic fatigue syndrome.” Since then, over a million people have been struck – worldwide, between 17- 20 million. In one quarter of the cases – 250,000 people in the US – ME leaves its victims bedbound. And, it kills.
HOW MANY MORE MUST DIE?
What has HHS done in the past 30 years to prevent the spread of this disease?
Absolutely nothing. HHS has stood by while over a million people have fallen.
· HHS has failed to fund research
· HHS has failed to provide accurate information to physicians
· HHS has actively lobbied against patient interests
Please join us at the Federal Building on 90 7th Street on May 12th noon – 1PM!
To draw attention to the fact that ME not only disables but can kill its victims, we will be displaying a line of empty wheelchairs with pictures of people who have died of ME, and we will read their obituaries.
Afterwards, we will go to McKesson Plaza to take our message to Dianne Feinstein. (5 blocks from Federal Building – there is a bus stop close by.)
This will be a peaceful demonstration. (We have a permit.) For your convenience, there is a bathroom in the café next to the Federal Building.
If people were diagnosed from the onset and their doctors knew that enforced rest could mean the difference between a possible remission or mild form of the disease, or permanent damage and eventual death, how many lives could be saved from this disease that still has no cure or treatment?
People with M.E. are at a great disadvantage when it comes to rallying–we’re usually too sick to do it. Rarely is there a grace period between falling ill and disease progression–every stage of M.E. is a disabling level of illness, or else we’d have raised a much larger fuss by now. But if we have weeks of planning in advance, some might be able to make it.
“The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.” (Centers for Disease Control and Prevention, USA, 2011)
Ever since then, government funded research into M.E. completely stopped, and everything is now poured into the world’s new definition of CFS, or some perceived mixture of both under “ME/CFS.” Because of this, research gets no where, no cause or cure can be found (how could it?), leaving scientists to think it’s all in our heads; sick children are taken from their families and into mental asylum because doctors think this “new version of M.E.” is purely psychological. And fibromyalgia may accompany M.E. just like it may accompany any other illness that damages the nervous system, but it is not ME. Worst of all, the exercise recommended for patients of “Chronic Fatigue Syndrome” and Fibromyalgia can kill or cause permanent damage to those with ME.
We need to get this information out there, but how can we if we’re too sick to be noticed? So please, share this information so more people can have a chance to show up, and let’s try to make a statement. Maybe we’ll make the news.
Brooke hosts this very new blog, intimately sharing her experience as a person with myalgic encephalomyelitis (M.E.) who is currently in hospice care, or, more bluntly put, expected to die from the disease within six months.* That is her current situation, but she is also a person who loves dogs, languages, poetry, nature, and music. Regarding those interests, I feel like I just wrote an explanation about myself! I’ve enjoyed her few new posts ranging from recaps of who she is and has been, facts about the disease, and how hospice care can be of real benefit. I feel she has a valuable perspective and I expect however many entries to follow will continue to be enlightening and authentic. I also admire her idea to start something new when some might raise the idea of it being “too late”–her choice to express herself is testament that we are always, always evolving. In the entry I’ve chosen to reblog here, she explains the huge detriment of calling Myalgic Encephalomyelitis “Chronic Fatigue Syndrome,” the harm it has caused patients, and how that ever came to happen.
♥arainbow at night
“ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as ‘MECFS,’ ‘CFS/ME,’ etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.
“Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. The name Myalgic Encephalomyelitis means ‘muscle pain and inflammation of the brain and spinal cord.’ It’s a perfect fit. In 1969, the World Health Organization (WHO) recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease.
Then the US got involved. In the 1980s, there was a breakout of ME in the Lake Tahoe area. The US sent a couple people to investigate. These individuals refused to meet with any patients, look at blood samples, or do anything productive. … There was not one single experienced ME expert on this panel. Rather than call the illness by the name already recognized by the WHO, the US came up with the name Chronic Fatigue Syndrome. This is where the two names became linked. “Read more
* ETA, Feb 2016: This didn’t happen and Brooke is still with us–not necessarily “fortunately,” if you know what an excruciating disease this is–because the final stages of M.E. do take years, which both her and her doctor were aware of at the time. However, she at least was able to enjoy six months of supremely attentive hospice care, which is more than 99% of people with M.E. ever receive, even though countless need it. Her doctor remains an integral part of her care to this day, including home visits, as she obviously cannot as much as leave her bed, much less her house, to go see one.
What made me even more motivated to do all of this is a situation I’m in with my pain management doctor. Words can’t express how thankful I am for his help, but the office is crowded, and sometimes they are more interested in swiftness than quality time. You’d think adequate communication was fairly important when discussing things such as burning away your nerves as a type of “treatment”?
The conversation has always been, We’ll try to numb the nerve, then if it works, we’ll burn it.Never once was I asked how I’d feel about this, or if I wanted to do it. So much so, that I nearly forgot to contemplate it, myself!
Because of the side effects I got just from the “trial” shot, doing something semi-permanent like radiofrequency ablation–or radio frequency nerve lesioning as it’s also called–would probably result in the same bizarre side effects, only forever: Never being able to recognize myself in the mirror, and never being able to keep my balance even with my eyes OPEN.
Does that sound AT ALL how I want to spend what could be my last stretch of life able to truly function? NO. I still don’t know why those odd side-effects accompanied my injection, but that’s what happened.
They were very willing to work with me when I discussed how I absolutely cannot have the steroids that usually accompany the nerve block/make it last longer, but I’ve still had a lot of anxiety about discussing how I don’t want to obliterate one of my nerves in an attempt at “relief.” That’s the exact opposite of what I view as self-care and treating my body kindly. But I don’t want to seem like I’m not wanting to help myself, something everyone with chronic illness has been accused of at least once but more likely a dozen times.
I also don’t want to come across as just wanting pills and nothing else, and get some unwanted reputation as a pill-seeker. As much as pain management advocacy groups make it sound like everyone has the right to pain control, I’m sorry, but being mislabeled still happens. A lot. Part of the reason it took me so long to seek pain management in the first place is because in the past I was always denied at the ER: They didn’t believe me and unjustly assumed I was only there for drugs because my conditions (Fibromyalgia, at the time) were so poorly understood. I know my anxiety has stemmed from all this, because what if my current doctors also don’t understand? But I’m at the point now where I’m too frustrated with the fact that my opinion over what I want to do with my body was never even requested, so they will either understand, or I’ll have to find a new clinic. We have to talk about how I do not want to do that to my body.
My point in this two-part entry, is this:
You don’t have to do what’s “expected” of you, when it comes to your health. Whether that concerns end of life care, medical treatments, or prescription options: If you want them, and you think they’re worth the risk–and they all have risks–then try to get them. But don’t feel pressured to get them just because someone else thinks it’s right, because your doctor thinks it’s right, or because other people wish they could have it, if it’s not really what YOU want for YOUR body and YOUR life.
For a long time I even felt guilt over turning down my Lyme etc. treatment because there are people who want to get treatment, that can’t… But that doesn’t do anyone any good at all. It doesn’t make sense to kill myself with antibiotics just because someone else wishes they had any antibiotics at all.
And don’t forget to consider what it means for you in the long run. Many people want to stay around for as long as possible, no matter what the cost; for their children, spouse, best friend, others who need them, without stopping to think of how those emotionally-charged decisions are actually going to affect their life. It’s worth the extra thought.
Are they still getting “you” if your attempts to stay alive rob you of your body and mind? Is it in the best interest of your values and morals? And are your morals and values in your best interest?
At what point is prolonging your being alive with the aid of modern medicine only going to promote your suffering?
There’s every possibility that I could be involved in some unexpected incident–a car crash, ANOTHER tree trying to land on me for a THIRD time, an abrupt, rapidly-progressive infection that takes me out overnight–but those aren’t the most likely situations. The only thing that makes sense for someone in my situation is to plan for some type of gradual decline.
I’ve had a living will for years, but someone’s situation recently made me wonder if what I had written down was specific enough to fully protect me. Living wills only cover you if two or more physicians declare your case terminal. If you want someone to express your wishes in the event you cannot communicate for yourself but aren’t yet deemed terminal, you need to declare someone your medical power of attorney. Not your power of attourney, but your medical power of attourney.You can also include in writing what you want just like a living will, and that’s a very kind thing to do for your family so they can have physical proof of your wishes.
This is especially important to me right now because it hit me that doctors just aren’t used to dealing with cases like mine. I’ve seen that time and time again over the years. Most physicians I’ve seen can’t even understand how I dehydrate so quickly. Too many times, I’ve even been told my symptoms are “impossible,” yet here I am. That doesn’t give me much hope for other situations, so if I want the best help in the event I’m unable to speak for myself–a situation which can and does happen to people with both severe M.E. and Lyme disease–I have to include specific instructions and appoint a Medical Power of Attorney.
In my current condition, where even half a child’s dose of the most basic antibiotic causes me immense suffering, I need to check the “no antibiotics” box, in the event my doctor wanted to try them in some optimistic attempt to save my life. The hospital won’t understand the consequences of someone like me going through something like that, but I do. For instance, I recently had to take ONE olive leaf extract capsule to quell the a relapsing h. pylori flare up, and ever since, my head has felt like it’s going to implode, even more than usual. That’s not even a prescription antibiotic! These extreme inflammatory reactions–herxheimer reactions–actually hospitalized me for five days in 2011, and that’s when I was able to tolerate treatment!
And if I’m unable to communicate, at what point will I think it’s no longer worth it to continuously visit the emergency room for IV fluids? When things got bad in previous years, I was going every two months, via ambulance, because the dehydration was so sudden and so severe. Right now I’m okay with that assistance because I’m still functional and it helps me bounce back. But at what point would I have to say, “This is just too much, it’s only prolonging my suffering; no more fluids, just keep me comfortable“…?
What about breathing assistance? I like the nasal oxygen, but I’m against any ventilators or breathing machines.
And I know I don’t want to live off of a feeding tube, if I’m otherwise completely incapacitated. To me, that is when it’s time to let nature take its course. People with severe M.E. are faced with this particular decision often. Many concede to a feeding tube in hopes of getting better later, or because they’re still able to participate in life in some accommodated way which makes it worth it to them to stay around. But I wouldn’t see a point, if I had so much else going on. Plus you have to add my Lyme disease to this… I think I’ve been through enough.
The only reason myalgic encephalomyelitis doesn’t kill more than it already does is the availability of life support measures. Otherwise, there would be many more people–all or almost all from the 25% severely affected group–dying of wasting syndrome, dehydration, inadequate oxygenation of the major organs, and infection.
And what about a DNR/Do Not Resuscitate? If/When my heart were to go into life-threatening arrhythmia, do I want them to try to “help” me? Right now, I say yes. But later on, I might want to sign forms telling emergency dispatchers to not electrocute me or break my rips trying to “revive” me.
There’s no way I can predict right now when I’ll decide enough is enough–these decisions can’t be made overnight–but I do know when I reach the point of not being able to communicate with my loved ones, that will probably be the breaking point.
I do not want to continue past the point that I cannot communicate, being kept alive only by machines and tubes, and I don’t think it’s even natural to want that, when the body is obviously trying to pass on in a way that would actually limit the suffering involved, if only we’d get out of its way.
We should all think about these things, whether severely ill or not, to help relieve the burden on our families when that time comes.
“The suggestion that modern western medicine can and has made life easier is countered with the fact that sometimes, it can prolong life too far, and then allows more suffering than was necessary. It is up to each person to decide what’s enough.” *
Earlier this month I found out I had another new diagnosis, another piece to my chronic illness puzzle.
I found a doctor with experience in the area, and spent three weeks gathering the past 18 months of my medical records and filling out their extensive forms.
And this afternoon, I shredded all of it.
I found out I do, indeed, have the MTHFR gene mutation genetic polymorphism. Two of them, two copies of the C677T mutation, or MTHFR 677 TT, put another way (homozygous). This is not the worst case scenario, which would be one C677T and one A1298C polymorphism. What it does mean–as far as I can tell–is that while people with only one copy of the C677T polymorphism might have mild problems or generally do just fine, people with two copies are at a higher risk for the associated diseases. And it’s a reason why I cannot detox properly. Maybe the reason.
At the biological level, it means my body has trouble converting folic acid–the synthetic, unnatural, manmade form of Folate/B9–into a form that I can use. And because properly converting folic acid is what allows you to properly convert B12 to use, I have trouble there, too. (Or at least, I’m supposed to…?) So because these polymorphisms cause my body to be less efficient, I don’t make enough methylfolate. But you need methylfolate to use folic acid, and you also need methylfolate to use B12 (that is, to convert the common manmade-B12, cyanocobalamin, into the body’s natural, useable-B12, methylcobalamin).
Depending upon how much you randomly know, you may have noticed that says I cannot convert the forms of Folate and B12 that are added to everything, including 99% of vitamin supplements: Folic acid and Cyanocobalamin. They’re in everything because people are supposed to be able to convert them and use them. But I can’t do that very well, so if I consume things that have these, such as in vitamins or enriched foods, I am going to have a build-up of these unusable-to-me forms of vitamins, while never getting adequate amounts of the ones I can use.
This is why taking a multivitamin makes me sick. Even when I was taking my B-complex, I always had to chop them into pieces and only take them a few times per week to avoid sickness. Now, FINALLY, I know why this happens!!
“Folic Acid is Not Methylfolate
“Synthetic folic acid does not exist in the human body. It is found in vitamins, and thanks to the FDA’s wisdom, in enriched flour-based foods (yet another reason to shun flour!). Multiple enzymatic steps are necessary to convert folic acid into its active form beginning with dihydrofolate reductase in the gut. Individuals with gene variants, but specifically homozygous C677 should avoid folic acid because of the concern for limited breakdown and subsequent accumulation of this man-made agent. One study has implicated folic acid in suppression of important immune factors called natural killer cells.”
All of this is supposed to mean I should have elevated levels of some things and low levels of various other things floating around because I can’t convert them properly… And these excess levels can cause all sorts of problems. But, according to my recent bloodwork–particularly the homocysteine–everything is within normal limits. It’s kind of astonishing, really.
To say I’m appreciative of my body finding ways around this, and making me crave food that would give me what I need, is an understatement. Go body, go! I will help you.
You know what medication makes this worse? Bactrim. This probably helps explain why my liver was fine until I needed Bactrim to finish killing off the bartonella infection. Should I need it again in the future, I will know to take milk thistle or something similar, to offset the effects, BEFORE my body gets too stressed…
And that’s pretty much how I’m going to approach this entire thing. I’m going to learn about it slowly and do what I can do offset the effects–symptom management, palliative care–and let my body continue doing what it can for as long as it can. I may do further research into mild supplementation, but mainly, my outlook is that this is another quirk I get the OPPORTUNITY to manage. Of course I reserve the right to change my mind at any time, but:
I am not going to go into “treatment mode.”
And it took several weeks of lamentation for me to really understand I had that choice, and that it wouldn’t be the same as suicide. As one person put it,
“The media constantly bangs on about how to live. . . They tell you how to preserve your body surgically and chemically so you look younger, slimmer, healthier. Why? Nature is perfect in herself. Every season is beautiful.“
To be suicidal is to want to die and take actions to facilitate it. But I want to live. It just so happens that humans are subject to disease and death, and if I continue on the path which I have for the past almost-thirteen years, I will not be able to enjoy my life, the only one I have.
I am going through a whirlwind of emotions with this, and if you think you’re able, you can take the ride with me.
I don’t think I’ve ever been so scared, or happy, in my entire life. To be continued…
♥arainbow at night
PostScript: I’ve been doing a lot of photography lately in honour of Jeremiah Katches‘ passing, so I’ll be posting some of my pictures at the bottom of my posts. This may be a temporary thing or ongoing (much like life, really), but here you go:
It occurred to me one day several months ago that I’ve never stopped to answer a question people may have, the same question I often wonder about others in my situation: When I talk about being in pain, what am I actually talking about?
In my case I’m talking about severe head pain, and what some call “malaise,” but… Malaise is what you call it when you are sick and you feel “off,” and unwell, and basically.. gross. It’s also a term you can use for having something as simple as a cold or as insufferable as end-stage AIDS, much like a fever has drastically varying levels of severity.
In “malaise” standards, what I feel is like my immune system is fighting to save my life but it may or may not actually take me down with it. Most types of pain are usually localized, or at least, if it’s everywhere it’s an identifiable ache. This? Maybe I should invent a new term.
Deathlymalaise. Yeah that sounds about right.
What happens in my newly coined “deathlymalaise” (feel free to use that), is this:
I always have “the” headache with it, the one I’ll discuss in a moment.
I have a low-grade fever, and I alternate rapidly–or maybe there is only the sensation of rapid cycling–between uncomfortably warm and sweaty, and clammy, cold, with freezing and numb extremities. It’s like when you have the flu and every five minutes you’re either tossing the blankets across the room or clambering to collect anything made of fabric and burrito yourself in it. My GP says this is my immune system. Apparently it’s trying to figure out what to do with itself.
I feel dizzy and there is often a “buzzing” sensation, but whether it’s nerves sending wrong signals or my vascular system trying to sustain normal circulation, is anyone’s guess.
My lymph nodes, particularly the axillary and cervical nodes (under your arms, and around your neck), have a constant, dull ache, and get stabbing sensations.
I get muscle spasms in my neck, back, and all around my abdomen in general, that are so sudden and severe I usually end up screaming.
I feel a burning sensation in the nerves in my face, as if they were on fire from the inside-out. I think it comes from the same inflammation responsible for my headache. The trigeminal neuralgia is thus usually activated and I have to stop myself from clawing at my face–that wouldn’t help much, now would it?
I feel as if I’m going to vomit, but I won’t let that happen–I take Zofran as necessary.
My joints–moreso on my left–swell and get stiff, difficult to bend or move.
There is substantial fatigue during these “bursts” of deathlymalaise, but sitting or–more appropriately–lying in one place is usually not an option because this is the kind of suffering that, on the pain scale, would be at the level that it interferes with your every thought.
I’m a complete and utter wreck. And please remember, this list is only covering the malaise part of the illness, something that has been very prominent since The Big Relapse. It’s not medication withdrawal, because these symptoms are part of the reason I started taking anything to begin with, and it’s not herxing. It’s just disease. It makes me uncomfortable to even type that, but it is what it is. I can’t sugarcoat something like this.
” ‘Malaise has probably occurred in every [ME epidemic] described in the literature.’ Malaise is accentuated in the Initial Stage and it recurs for as long as the disease process exists. Malaise is almost impossible to describe. It is often referred to as the pain and discomfort that one has during the acute phase of an influenza. However, it is not always the same. The patient feels terrible, feels as though he is about to die.“
“It particularly injures the sensory and dulls the cognitive abilities of the brain. The pain seems to originate everywhere, both on and within the chest and abdominal areas, head and extremities. The rapid muscle and brain fatigue that is normal in [M.E.] becomes accentuated.”
As you can see, what I described when I first posted this in 2013 is almost exactly what Dr. Hyde wrote; I was absolutely floored when I read it, and honestly, most of the book is like this: full of specific, uncanny validation about all the quirky things that occur in this disease. If you have M.E. I highly suggest you buy it while it’s still available.
Some of the other things I wrote are very specific of Lyme disease, such as the burning in my face where the infection damaged multiple nerves, and the “buzzing” sensation, which many Lymies describe as, it’s like you’re sitting atop the hood of a car while it’s running.[/ETA]
I usually feel aghast–but almost in awe–at the reality that a person could possibly feel so horrendous, and helpless at the thought that a hospital–the place you’re raised thinking can always help you during any health crisis–cannot do anything, because there is nothing to stop what’s happening. How do you explain to someone how terrible all that feels, with the word “malaise”?
Several of my friends who also live with Lyme & Company admit to feeling this, some even writing letters or notes to loved ones during the worst “episodes” because they think surely something must be about to go very, very wrong for the human body to give out all these warning signals.
They usually say, “I feel like I’m dying.”
We really do.
The progression of my headaches has been a monster all its own. Their onset began with occipital neuralgia four months after my tick bite, almost seven years ago. Bartonella came with its own, mostly frontal-oriented headaches; I don’t have those any more. But almost without fail, I have had a particularly severe headache for 4-5 consecutive days every four weeks since the Lyme invaded my nervous system. Now, that exacerbation happens about every two weeks, thanks to the Mycoplasma (or at least, I assume).
I used to requite prescription-strength medications for breakthrough pain only a few times a year for the attacks of occipital neuralgia. As things steadily progressed (especially within the past two years), I went from needing them an average of 1-3 days per month, to having 3-week-long bouts of unrelenting head pain which alternated with 3-pain-free weeks, seemingly for no reason. Now, since my relapse in October, I’ve needed them every single day except 1-3 days per month. I guess all of this is why needing them so much frightened me: I wondered–and still wonder–if there is no turning back from this point. Regardless…
This head pain is a throbbing sensation at the back of my head, the base of my skull and down into my neck. I wouldn’t outright call it occipital neuralgia, because my attacks of O.N. are even more severe and almost completely untreatable. But otherwise, it’s just like them. Baby neuralgias? They even exhibit the so-called “ram’s horn pattern,” and the top of my head often goes numb, and I am sensitive to anything touching my scalp. There is no sensitivity to sound, but extreme sensitivity to light. I get bursts of nausea. Since vasculitis has been such a major feature of this relapse, these “headaches” may have some vascular component.
As of right now, later this month my pain management doctor wants to try a shot in my neck. I’m uncertain is he intends a nerve block for O.N. or another route, but since this has gone on so long, it’s time to try something new.
There’s not really a pretty way to close this article. But when I talk about being in pain, to all of this is what I refer.
This is a survey of sorts that went around several years back, obviously before I ever made this site. It’s still going around, so I’ve updated some of my old answers in response to more recent developments, and decided to put it here. :) Feel free to fill out this survey for your own blog! (The blank form is at the link.)
The illness I live with is: primarily Myalgic encephalomyelitis (M.E.) and Borrelia burgdorferi (Lyme disease), complicated by additional infections for which I have tested positive: Bartonella quintana, Bartonella henselae, andMycoplasma pneumoniae. There is no cure for M.E., and because of immunodeficiencies and extremely delayed diagnosis, I have late stage neuroborreliosis. I finished treatment for bartonellosis, but the disease is prone to relapse, and by mid-2013, it did.
I was diagnosed with it in the year: 2002 for M.E.; 2009 for the rest.
But I had symptoms since: 2000-2002 for M.E.; 2006 for Lyme disease; and 2008 for the rest.
The biggest adjustment I’ve had to make is: putting forth a conscious effort to consider how every little thing I do (or don’t do) will affect me longterm. This is the crux of being a spoonie.
Most people assume: that either none of these illnesses exist at all, or that they have no potential to go chronic or cause the level of disability I experience. Oh, don’t mind me, I’m just dying from something you don’t even believe in, that makes perfect sense…!?
The hardest part about mornings are: dealing with the surge of pain I feel from lack of medication overnight; making sure I don’t pass out; stabilizing my autonomic nervous system.
My favorite medical TV show is: Monsters Inside Me.
A gadget I couldn’t live without is: my smartphone!
The hardest part about nights are: sometimes my headaches are worse by then.
Each day I take ___24___ pills & vitamins.
Regarding alternative treatments I: have been helped more by herbs and specific supplements than any pharmaceutical drug, as far as the M.E. is concerned; but without the drugs for Lyme disease and the infections I picked up, I doubt I’d be typing this right now.
If I had to choose between an invisible illness or visible I would choose: invisible, because I’m not a fan of attention and I like the option of blending in. Using mobility aids like canes, wheelchairs, and mobility scooters has brought me to the visible spectrum, and I still prefer invisible, with that in mind. But I really don’t have to choose, I guess–I’ve been both!
Regarding working and career: I think this blog is the closest I get to working. We’re all here on earth to grow our souls, and it just so happens my soul decided I could best learn through the experience of sickness. As a wise woman once said, there was never a version of this life for me where I wouldn’t have been sick. I.e., this is what I have to work with! Every day I do the best I can for my body so that my soul can continue its journey here.
People would be surprised to know: just how sick I get AFTER they see/visit with me, because my worsening can be delayed by 24 hours or more; that phone conversations give me a fever; that continuous typing or texting can lead me to muscle paralysis.
The hardest thing to accept about my new reality has been: that the odds are, statistically, against me.
Something I never thought I could do with my illness that I did was: travel across the country during nine days of feeling miraculously better (though it still ended with me in the ER) to accomplish my bucket list dream of visiting San Francisco, watching the sun set into the Pacific ocean, and seeing the majestic Redwoods in the Avenue of the Giants. Also, helping so many people with the words I share. At the time of my first editing this post, my site had exactly 26,000 page views. Now on my third edit (2014), it has had over 72,000… How is that even possible? I’m in awe. Thank you for letting me into your life.
The commercials about my illness: are non-existent, which is almost good, because most common information about them is completely false and I’d rather people have no knowledge and come to me with questions, than to have a falsely constructed preconceived idea and think they already know everything because “the television said so.”
Some things I really miss doing since I was diagnosed are: driving; getting lost in a drawing; walking normally/significant distances; laughing without consequences; visiting loved ones without having to plan for it a week or more in advance; being spontaneous…
It was really hard to have to give up: my independence.
A new hobby I have taken up since my diagnosis is: watching concerts on DVD; reading shorter things like articles and magazines; audiobooks; public blogging; painting; zentangles.
If I could have one day of feeling normal again I would: RUN. FREAKING. EVERYWHERE.
My illness has taught me: patience; acceptance; mindfulness; the importance of perspective; compassion; that I am more than what I can do for others; that I am more than what I “do,” period.
Want to know a secret? One thing people say that gets under my skin is: when people attempt to relate by comparing situations that in absolutely no way are similar to living with severe illness. You don’t see me claiming to know “just what it’s like” to lose a child, do you?
But I love it when people: know how to fight for what they want; I respect that.
My favorite motto, scripture, quote that gets me through tough times is: “It is the greatest mistake of all to do nothing because you can do only little; do what you can.” (Sydney Smith) “When nature moves swiftly, it destroys.” (David Bate) “Smile, breathe, and go slowly.” (Thich Nhat Hanh)
“But He said to me, ‘My grace is sufficient for you, for My power is made perfect in weakness.” (2 Cor 12:9)
I can deal with anything as long as I remember that whatever I need on any given day, it will be available to me. I believe the Universe looks out for us, and that there will always be enough, until there isn’t. Like Thich Nhat Hanh says, when conditions are sufficient, things manifest; when conditions are not sufficient, these manifestations withdraw.
When someone is diagnosed I’d like to tell them:that their life isn’t over. And to properly educate themselves about the illness. As far as M.E.: Do not listen to anyone that says you “just need more exercise” because that one mistake can change the course of the entire disease. As for Lyme: If someone even mentions the phrase “post lyme syndrome,” claims you can’t have it because the test was negative/you didn’t have the rash, or claims that your symptoms must be something else just because you’ve already had the standard one month of antibiotics, get as far away from them as possible, order an IGeneX kit, and find an educated Lyme-literate physician.
Something that has surprised me about living with an illness is: (1) how many people there are who want to blame YOU for being sick, because the thought of anything happening outside of their control terrifies them; (2) how many people abandon you when you get worse, for much the same reason; but also (3) how much some people are truly willing to help, and (4) how your closest friends will find a way to keep in touch with you.
The nicest thing someone did for me when I wasn’t feeling well was: not blame me for the disease worsening; cook dinner for me; bring me back food from a restaurant: clean my house; spend hours drawing things for me; mail me CDs and letters and tea without any expectations that I’d reply (because often I can’t); insert many more things here, because I’ve been truly, truly blessed with support.
I’m involved with Invisible Illness Week because: I think filling out this survey will help others feel less alone.
The fact that you read this list makes me feel: like someone cares.
Find out more about Invisible Illness Awareness Week at their website. In particular, you can sign up for their updates to receive a free chronic illness e-book on “263 ways to do more than ‘just get by'”! I’ve browsed through it and it has a little bit of something for everyone.
…Or bartonella. Or mycoplasma. Or similar infections that are commonly found in the same tick that carries Lyme disease. Unless you’re like me and you happen to get them from other sources like fleas, because you’re immunocompromised and collect infections like some people collect stamps.
I’m not sure which is the true culprit. I know I started getting occipital neuralgia about four months after my tick bite, so that is definitely Lyme disease-related, but I haven’t had an attack of that in a long time; I think it’s been a year?
My serious cranial nerve involvement began when I got Bell’s Palsy immediately after contracting mycoplasma pneumoniae, an infection that usually causes “walking pneumonia” but has been known since the 1970s to also wreak havoc elsewhere, like the nervous system. It can cause just about everything that Lyme disease can, and persist even after treatment by mimicking the body’s own cells. My right eye twitched and my face drooped. I’ve mostly recovered, but some of the damage is permanent. Then my left eye began twitching and it got damaged. That is also permanent. It was all downhill from there as far as nerve damage goes, but I’m here to talk about the ones in my face.
I began treating with Rifampin and Doxycycline in January 2011, and all hell broke loose: That’s when the autonomic neuropathy made itself apparent, culminating in its diagnosis a few months later. I can’t coordinate how it all fits together, but I know my vagus nerve became damaged, my trigeminal nerve got involved somewhere, the Bell’s palsy is a factor (i.e., damage to the seventh cranial nerve, literally called “the facial nerve”), and my migraines are connected.
When the autonomic mayhem landed me in the hospital, I would try to eat something, get an “episode” where my vagus nerve would trigger all sorts of things it wasn’t supposed to, and I’d get a migraine. I got so many migraines I had to be on Topamax for almost a year. Now these days, instead of my nervous system having a meltdown, I’ll sometimes get facial pain when I start digesting, again triggering migraine-like pain on the right side of my face until the digestion stops. This can happen even if I haven’t eaten, but the act of eating can apparently be a huge trigger for trigeminal neuralgia; more on that horror story, below. But how did they all end up triggering each other?
The trigeminal nerve is implemented in migraines and facial pain.
The facial nerve can also be implemented in facial pain (ha, no kidding!), and the tongue numbness I get.
Episodes of trigeminal neuralgia can involve the trigeminal nerve and the facial nerve simultaneously.
And the vagus nerve–as it pertains to this post–is responsible for digestion-related reflexes…
But again, how did it come to be that my vagal reflexes got connected to my trigeminal response, in ways they previously were not? All I know for sure is one or more of these infections attacked my cranial nerves, and I’m left with odd, painful remnants as my body has attempted to heal.
After my last post, the “tension-headache-thing-that-wasn’t-quite-a-tension-headache”-thing went away and was replaced with the worst episode of trigeminal neuralgia I’ve had to date. Perhaps the tension-like pain was a precursor? (A Lymie friend on Twitter mentioned that she often gets headaches or migraines before her trigeminal neuralgia attacks, too.)
The best way I can think to describe what happened is that, I ate a bowl of crunchy cereal, and immediately after it felt like my teeth were going to explode. It’s one of those things where, if someone else told me the level of pain they were in, I would swear they were exaggerating because how is that possible? My other attacks have been similar–extremely severe, extremely sudden pain that makes you start shaking from its intensity–but it’s never lasted quite this long.
I remember a long time ago writing about another unusual headache, something that acted like “an ice pick headache that keeps on going.” In hindsight, that headache that felt like someone stabbed me in the forehead may have been an episode of trigeminal neuralgia, too. :\ It certainly sounds like it, from what I wrote.
I hate how deceptive it can be, when it starts to fade away only to attack you suddenly again. It took several days to completely go away and stop fading in and out. I have moments of unexplained facial pain daily, anyway, but nothing so severe as that. For my usual, spontaneous facial pain–the kind that is often tied to my digestion for some unexplained reason–butalbital is a huge help. It’s a huge help in my neuropathic pain in general, actually, even though I’ve never heard of anyone else using it for that. Half a tablet of Fioricet (or Bucet, which is the same as Fioricet but without the caffeine; most doctors don’t even know it exists) and that kind of nerve pain is usually gone.
Like occipital neuralgia, nothing much helps trigeminal neuralgia, or at least nothing that my system can tolerate. (Things like carbamazepine are completely out of the question for me.) That night, I was already on hydrocodone and ibuprofen, but had to take twice as much as I usually need, and it still only dulled it enough so that I wasn’t shaking. I couldn’t lie down and put any pressure on my skull until it began to ease.
The gratitude I had for being able to take those pain relievers cannot be put into words. And I’m still trying to wrap my head around the fact that something can hurt that much, and that I went through it. If you’d have told me two years ago I’d be going through something that would make my face feel like I was being stabbed and my teeth as if they were going to explode out of my skull at any moment, I’d have called you crazy.
I feel so much for people who have to go through TN, especially if they have no idea what is causing it. At least I know what is causing mine.
If you do need to be properly evaluated for Lyme disease–and unless you’ve specifically seen a Lyme Literate Medical Doctor or LLMD, you probably do–you can read this and call IGeneX to order a testing kit for your doctor. Igenex has an accuracy rate of 95% and tests for all possible reactive bands, unlike standard testing which only checks you for the most common thirteen and produces a staggering rate of false-negatives. Additionally, you may watch Under Our Skin, an excellent documentary film containing people with illnesses like Fibromyalgia, Chronic Fatigue Syndrome, Multiple Sclerosis, Parkinson’s, and ALS, who found out Lyme disease was the cause of their symptoms; most recovered. (Not in the US or want more help? Click here.)
♥arainbow at night
(Postscript: This is not related to TN, but with this month’s Lyme flare up, I had my old parkinsonism symptoms of slow movements and “freezing” while walking. It’s been a few months since I’ve had those, and they definitely caught me by surprise, especially with how slow my hands were functioning. Those of us with Lyme disease know how startling it can be when you’re doing (relatively) “okay” then suddenly your body thinks it has succumbed to Parkinson’s overnight! Luckily, as usual, it only lasted a few days and I am all right, now.)
The most important thing to report this time is that my random cough continued to be persistent and began to worsen, so I saw my primary physician who says I now have asthma. (Well, asthmatic bronchitis–two in one, aren’t I lucky!) If I were to assume this to be infection and/or herxing related, I would say this:
Since I’m fighting Mycoplasma pneumoniae, a bacterium that usually causes pneumonia (but also loves to attack your nervous system), my best guess is that treating this beast has caused a lot of herxing/die-off/inflammation in my lungs, where it’s most likely been hiding out, at least partially. And said die-off may be causing the inflammation that’s triggering this asthmatic response… I mean, it can’t be any coincidence that as soon as I start trying to kill the pathogen that has caused lung problems for me in the past, I get inflammation in my lungs. Right?
But if that’s not it, then I have genetics to thank. I’m going to go with “will hopefully go away as I treat Mycoplasma” theory until it proves itself otherwise. At least I’m not having any trouble breathing. I just have this cough, which, after three days on Dulera (which is literally just my Nasonex in an inhalable form…mixed with formoterol), I’m much, much better. :)
I’m convinced I had PANDAS (PANS) as a child; it just wasn’t a diagnose-able condition back then. If so, then I definitely still have it, because my body has clearly reacted the same way as an adult. This might sound like baseless self-diagnosis but this will make sense as I’ll discuss further below.
It stands for “Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections,” and is basically what it sounds like: An autoimmune response to strep that causes damage to the brain, primarily resulting in neuropsychiatric illness like obsessive-compulsive disorder and tic-disorders like Tourette’s Syndrome. (PANS refers to “pediatric acute-onset neuropsychiatric syndrome,” the same as PANDAS but without being caused specifically by streptococci.) In the “My Story” section, I ponder over whether or not something triggered my childhood-onset disorders of OCD and Tourette’s Syndrome, whether that might have been a brush with tick-borne infection, or something similar. After realizing there is an actual condition that does exactly this, it all makes too much sense:
my primary immunodeficiency disease makes me extremely susceptible to infections (especially Strep)
a history of autoimmune responses to things (like vaccinations)
the fact that both my OCD and Tourette’s were acute-onset
those conditions flare up whenever I get additional infections, especially bacterial
“Although the word ‘pediatric’ is in both names, it is surmised that the disease is not merely a childhood one. . . The encephalitic-type illness is brought on by an infection, resulting in antibodies that barrage the basal ganglia. … Once the autoimmune system is damaged, any germs can trigger a PANS flare.”
So, an autoimmune disease that responds to infection by attacking your own brain, instead. I was practically a walking target to get myalgic encephalomyelitis in the future, wasn’t I? :\
On that note, I have to state the obvious, that Mycoplasma and Strep are very similar in this respect: They usually cause upper respiratory infection, but in the immunocompromised, they can wreak havoc everywhere, especially the nervous system. You know what happened to me when I got both Bartonella and Mycoplasma a month apart from each other in 2008? My Tourette’s syndrome and stuttering flared up so bad I could barely talk for three months. I also got extremely paranoid, showing clear neuropsychiatric involvement. Additionally, that’s when my movement disorder began worsening. I had the beginnings of the dystonia since getting Lyme disease (even though I didn’t know I’d gotten Lyme, yet), but after those two infections, things progressed very quickly. (The Tourette’s and stuttering eventually died back down, though they love to pop up at random, especially when I’m under emotional or physical stress.)
Treating Bartonella helped the dystonia symptoms A LOT…a lot a lot. But the thing is, the antibiotics that treat Bartonella are the same antibiotics that treat Mycoplasma (or at least the ones I was on, except for Bactrim), so I have no idea of knowing which infection is responsible for it. It’s not gone yet (as evidenced by my oromandibular dystonia showing itself more lately), but the worst parts of it stopped progressing after a year on Rifampin (with other antibiotics).
This is one of the reasons I can’t type up a post explaining my Bartonella experience and treatment: Because even though I can pinpoint a lot of which symptoms were caused by Bartonella–especially the ones that recurred every 5-7 days–I have absolutely no way of knowing exactly which infection caused what, specifically in regards to my dystonia and other related movement disorders. Because I got those infections a month apart from each other, and I treated them both at the same time. I can type about my theories, but I can’t put a bunch of information out there that people are going to read, without being sure. All I have are correlations, and patterns, which I happen to have a talent at spotting.
Two years ago I hypothesized that Mycoplasma (which I easily tested positive for on the first try, unlike the others which I had to coax out with speciality labs) was going to play a much larger role in my health issues than I had at first assumed… I had no idea how right that would be.
[ETA 2017: It’s been 5 years since this post and Mycoplasma pneumoniae has now been recognized to be a determining factor in the diagnosis of PANS, which all these additional years of disease and severe psychiatric relapse have unequivocally proven me to have.]
“The association of mycoplasma with diseases like arthritis and chronic fatigue syndrome, which has been implicated with a response of the body’s immune system against its own components, is consistent with the growth and behavior of mycoplasma. The absence of a conventional cell wall allows mycobacteria to penetrate into the white blood cells of the immune system. Because some mycoplasma will exist free of the blood cells and because the bacteria are capable of slow growth in the body, the immune system will detect and respond to a mycobacterial infection. But this response is generally futile. The bacteria hidden inside the white blood cells will not be killed. The immune components instead might begin to attack other antigens of the host that are similar in three-dimensional structure to the mycobacterial antigens. Because mycoplasma infections can become chronic, damage to the body over an extended time and the stress produced on the immune system may allow other microorganisms to establish infections.
“Strategies to eliminate mycoplasma infections are now centering on the strengthening of the immune system, and long-term antibiotic use (e.g., months or years). Even so, it is still unclear whether antibiotics are truly effective on mycoplasma bacteria. Mycoplasma can alter the chemical composition of the surface each time a bacterium divides. Thus, there may be no constant target for an antibiotic.”
Mycoplasma Infections via Encyclopedia.com World of Microbiology and Immunology | 2003, The Gale Group Inc.
If anyone has any experience or information they want to share with me about PANS/PANDAS or similar things triggering OCD and Tourette’s Syndrome, feel free to comment or contact me.
♥arainbow at night
Updated December 2015 to add helpful links about PANS/PANDAS
Updated May 2017 to add more helpful links and confirm diagnosis
I was going to concoct a more drawn-out post explaining why I’m not participating in any of the awareness campaigns of May concerning my illnesses…but then I came upon the realization that I don’t owe anyone justification for my actions–or “wise inaction,” as it were–and I am comforted by the knowledge that many other people are feeling the same way.
For those who can advocate–and I do it at random, it definitely has its purpose, particularly in our government to let them know we’re still here–that is more than fine. If it gives you purpose, and belonging, and you feel pulled toward it, then do so.
For others like myself, I feel my entire life is an advocacy campaign. I don’t need a month, or a day: I get 365 days, 7 days a week, 24 hours a day, of this is what this disease does.
Pay attention to how I got this, and how hard it is for me to get my health back, so you can avoid it. Know that I was just like you, once. Know that I didn’t think it could’ve happened to me, either. That’s the biggest advocacy I can do.
Talking about Lyme disease or myalgic encephalomyelitis every second of every day for a month and nothing coming of it–because people who have their minds made up are NOT willing to hear anything else–is not going to help me OR anyone else, at all. I am not my disease. I am not Lyme disease, or mycoplasma, or myalgic encephalomyelitis, or autonomic neuropathy, or dystonia. They’re just things that have passed into my life to help shape and change it into something else. That’s all.
I’ve spent the past decade as an advocate, and I think I’ve done my part. In my absence there will be others. I personally think people learn more if you’re not yelling at them in desperation, but that might just be my personal experience. I’ve been blessed to help several people find out they had Lyme disease, for example, and it had nothing to do with advocacy. You can’t force the information on anyone: If they want to know, they will seek. And if they’re interested, I am here.
So instead of advocacy, myself and several, several others are focusing instead on what makes us feel normal.
Sure, our every waking moment may be imposed upon by symptoms and dysfunction, but that is not all we are. No matter how sick I’ve ever gotten, nor how sick I will ever be, there’s always more to me than an illness. This blog has been my health diary, yes, but I don’t want anyone to get the idea that this is all I am or all I do. I have friends and family and pets and hobbies and interests just like anyone else. And I am an artist. Not because the title makes me feel important, but because at my core, that’s how I express myself, it’s who I become when my physical limitations allow.
“Every job is a self-portrait of the person who did it. Autograph your work with excellence.”
So, there will be no post specifically about my conditions (although I did finish the “What is M.E.?” section a while back). It’s time to cultivate the parts of my life that inspire and enhance, that make me feel human and normal, not advertise what makes my life a living hell for the other 90% of the day, mostly to people who already know what I go through, anyway. And I’m so glad to know I’m not alone in this.
These two topics complement each other in an unexpected way.
First, the recent death of fellow myalgic encephalomyelitis sufferer (or person with M.E., if you prefer) Emily Collingridge has shaken me, and I’m ready to be honest about why. Usually I would skip this part and post the conclusion of my thoughts, but it’d probably be therapeutic for myself and for those reading (whoever you are) to read a different part of the process.
I have many friends with either M.E. or what is supposedly M.E., that have never known the level of sick that even I have, much less something like what Emily endured in her final years. And that’s good, really! But it’s scary to think that this could be me, because of my susceptibility to this level of sickness. (And goodness knows not anytime soon, because she had the illness twenty-four years and I’m just at ten, but…) It’s not even the death itself, but the way it happens.
Most illnesses so severe will take you out quicker than this. There aren’t many that drag on and on in such a way… Professor Mark Loveless served as Medical Director of HIV/AIDS Programs at Oregon Health Sciences University, and in 1995 he said in his Congressional Briefing that someone with M.E. “feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” It broke my heart to hear of her suffering so much, for so long, and, just like Sophia, with her knowing that if she got hospitalized it’d be the worst possible thing to happen… Then sure enough…
I wonder if they’ll have hospice options for people like us in the future.
My “Lymie” friends say that even when they were at their absolute sickest with Lyme disease, they could still listen to music softly or watch television with sunglasses on, and they can’t imagine being that ill and suffering that much, not being able to do anything whatsoever. I can’t imagine it, either. I was only like that for a short amount of time, my symptoms being exacerbated by the trauma of those additional infections, and it just sucks all the happiness out of you; being unable to listen to music, in my case, was particularly difficult. How do you cope with the pain of hearing someone with the same disease as you–your sister or brother in this struggle–enduring that for so long, to be on morphine from so much pain, only to not make it through?
Had she not had the illness for twenty-four years, she likely would have been able to bounce back to a less-afflicted state of sickness as she previously had; as many do, going in and out of the severity levels. When you get it young, like Emily did, like I did (though certainly not as young as six years old), you usually do experience a remission; most, at around four years after the onset. A lot of people stabilize after that. Most stabilize after that, actually, into a moderate or mild affliction. It’s just this 25-30% that get it really, really bad, and it continues to progress over time; almost all the deaths occur from this group.
The thing is, I started this blog with severe M.E.–my condition having been worsened by secondary infections–and I was very privileged a couple of months ago to remove the “severe” classification from my blog description: from“Chronicling a very special way of life, that of someone living with severe M.E.,” to “living with M.E.” I remember a year ago, just wanting to be able to brush my teeth whilst standing up. Now I have a chance to get better still than I already have, but if I even so much as look outside, I can’t help but be reminded of all the people who can’t even do that, due to this disease. There’s certainly some degree of survivor’s guilt, here.
In my day to day life, it’s not often I have to really think of the M.E. anymore, because the things I do to keep it in check are just routine, after all this time. Really, fighting the Lyme disease is my focus and takes up most of my energy, but after hearing of this, it brought me back to the reality that even once I get the Lyme subdued, I’ll still have this terrible, terrible, disease.
My niece, who I live with, has been sick with a viral-induced cough, and I’ve been thinking, at least it’s not the flu (which would hospitalize me) so it wouldn’t be that serious if I did accidentally catch it… But then I remembered that it was a viral ear infection that ultimately made my M.E. relapse five years ago. And it was a viral ear infection that also sent Sophia Mirza into irreversible relapse, all the way to her death. So there really is no such thing as a “better” virus when you have ME. On top of it all, there’s now the paranoia of living with an immunodeficiency disease, and the anxiety of knowing the consequences if I were to catch something so minuscule…
It was a lot of triggers at once.
And it came at a particularly awkward time, after reading an article about a woman with muscular dystrophy who has found a way to enjoy painting, despite the muscle weakness:
“With her condition, most people would just be vegetating, watching TV, enjoying checks from the state. But she does a lot of work. She stays strong.”
I was exasperated with anger.
It’s just another example of how you’re only allowed to be a “worthy” disabled person if you still do things. If you can’t, if you’re really, really sick, then you’re just “vegetating and watching tv and enjoy checks from the state.” Nevermind that we need those “checks from the state” to survive, or that watching television might be the only relief we have from the every day, nonstop suffering…
People don’t want to hear of the severely disabled. They only want to hear of people who are disabled “and yet still.” They don’t want to hear of people who are bedbound to the point of being unable to do anything at all but exist, like so many people I know; like the person I have been and will be again one day; like Emily, when she became too ill to even eat on her own.
I found that article because I was wondering if there were any tricks to navigating muscle weakness that might allow me to still do artwork, besides just taking an excruciating amount of time to complete things. With its similar progressive muscle weakness, muscular dystrophy was the closest thing to myalgic encephalomyelitis I could think of that might have information out there about how to manage it while being an artist.
Then I find an article whose interviewer says that if I can’t do it, if I can’t “and yet still,” I’m just lazy and not strong enough in character!?
Because what, when my M.E. gets to the point that I can only lie there and breathe, then I don’t matter anymore? Am I still strong if I cannot do? Are we not still worthy? It’s awful being reminded–and now, of all times–that there are people out there who think you, as a human being living with a disability, are inferior,weak, and lazy, for the sole reason that you dare to exist without also inspiring them.
As fellow blogger and severe M.E. sufferer Laurel stated in her post, “In Memory of Emily,” she embodied “strength, spirit and determination–all of which she continued to demonstrate to the very end,” and which was not determined by how much she did.
She did do a lot when she was physically able, even though it took so much out of her. There were causes she thought important enough to spend her very valuable resources on, but when she became unable to continuing doingin her last years, that did not make her any less strong or determined.
I never knew Emily personally, though I was a big fan of her her book for sufferers of severe myalgic encephalomyelitis, and linked to it here several times. It is an indispensable aid to those forced to navigate these unstable waters, one that could have only come from someone who knew its unpredictability and devastation first hand.
In closing, I would ask you to take the time to read Emily’s Appeal, which she wrote over the course of several weeks while she was still able. Additionally, Emily’s story, from her own words, can be found here.