Guest blogger: “It is healthy to talk about what you are going through.”

I’m here to make another installment to my Life Lessons section, but this time, with the words of a very special guest blogger. And I don’t say very special because they are well-known, famous, or something like that. But they are, in my opinion, one of the most amazing people to exist. My dear friend–who has a birthday today, no less!–who has impacted my life in more ways than I could count, wrote this several days ago, and I thought it was way too important not to share (especially since they agreed to write something for you all sometime this year!).

I’m really tired of “not talking about your illness” equaling “being a stronger person.”  No.  It is healthy to talk about what you are going through. 

Illness is not something to be shoved away and ignored like it is dirty and shameful.  No.  Illness, disability, old age, and dying are a part of life.  It is natural.  It has been with us forever. 

Every single human being that has ever lived has dealt with it in some fashion.  Every single human being has died, or will die.  If they live long enough, those still among us will will watch a loved one die.  They will get older.  They will encounter disability in themselves or others.  They or somebody they love will get sick. 

For me, it would be unhealthy not to talk about something so inevitable and universal. 

I talk about my illness.  I am sure it makes some people uncomfortable and has driven some people away.  But it affects nearly all of my life right now, and I see no reason to pretend like it does not.

– the author of Black Cat Saturdays

 

No one should be made to feel like they have to deny a part of themselves or a crucial part of their life in order to win the affection and/or acceptance of another. As with anything in life, it’s all about balance. We have to find a middle ground between talking about what we are going through, honestly, and yet not being consumed by it. I know people on both extremes–those who never talk about it, and those who talk about absolutely nothing else. It is detrimental either way. The person who never talks about it–perhaps to keep people around, not make others uncomfortable, or stay in denial about their own circumstances–ends up feeling cheated, abandoned, and can lose self-respect. The person who talks about nothing else, forgets who they are entirely, and sees themselves only as “the person with such-and-such disease.”

But we are more than sick, or disabled, or terminally ill. We still exist, and we still have purpose and love to share. But in order to get to that place, we have to realize–and hopefully be accompanied by people who realize this, too–that we are also people who have to grieve in a healthy manner, who have to express ourselves as we go through this part of life, and it’s not our job to make sure everyone else stays comfortable while we do it.

As written above, we will all go through these things at some point. It’s just that we, who are already going through it, simply don’t have the time or extra energy to spend worrying about someone else’s opinion of how much we’re “allowed” to share before they feel inconvenienced…

a rainbow at night & black cat saturdays

I feel the need to share again: “The Silence of the Dying,” by the Sara Douglas.

Thoughts on Emily Collingridge, and being judged for our disabilities.

These two topics complement each other in an unexpected way.

First, the recent death of fellow M.E. sufferer 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.

There are many friends I have with 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… In 1995, as Professor Mark Loveless served as Medical Director of HIV/AIDS Programs at Oregon Health Sciences University, he said in his Congressional Briefing that someone with M.E. “feels effectively the same every day as an AIDS patient feels two weeks 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, knowing that if she got hospitalized it’d be the worst thing to happen… Then sure enough…

I don’t want that. I want to be home, wherever that might be by the time I’m at that stage in my life. Who knows, maybe they’ll have hospice options for people like us in the future?

My friends say that even when they were at their absolute sickest with Lyme, 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). It’s so hard to hear of someone enduring that for so long, to be on morphine from so much pain, and to not make it through… Had she not 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. Yes, she was young, but it is still a quarter-century’s worth of disease affecting her body even as it was still forming.

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) and a lot of people stabilize after that. Most stabilize after that, actually, into a moderate or mild affliction. It’s just this 30% that get it really, really bad, and it continues to progress over time; almost all the deaths occur from this group. Some never remit, but for the others, something usually triggers it again after the remission or semi-remission, but that could be anything from a year later to a decade later (like a cancer might stay gone for long lengths of time, or come back within months).

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, “Chronicling a very special way of life, that of someone living with M.E.,” instead of “severe M.E.” Even when I look outside, I can’t help but be reminded of the people who can’t… I remember a year ago, just wanting to be able to brush my teeth whilst standing up. And I have a chance to get better, still. I’ll be in the moderate group, if I can beat the Lyme disease into submission, and that would be good. (Well, not good, but, given my options…)

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 cruelty first hand.

It’s really not often I have to 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. I suppose that’s why being brought back to the reality that even once I get the Lyme subdued, that I’ll still have this terrible disease, has startled me so.

My niece, who I live with, has been sick with a viral-induced cough, and I’ve been thinking, at least it’s not like 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 again, Sophia Mirza, too, was striken into irreversible relapse by an ear infection. So there really is no such thing as a “better” virus when you have ME. Just the thought that if I were to catch something so miniscule…

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 paints:

“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 furious at this.

It’s just more proof that you’re only allowed to be disabled and worth something at the same time, 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 tv 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 do things. 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, and the person I have been (and will be again, one day). People like Emily, when she became too ill to even eat on her own.

Finding that article all started because I was wondering if there was any way I could still do art with the M.E. besides just taking a very long time to complete things. So I googled muscular dystrophy, which, with its similar progressive muscle weakness, was the closest thing I could think of to M.E. that might have more 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, I’m just lazy and not strong enough in character!

It was infuriating, and the reason I wrote my “Media and Resilience” rant a long time ago. I really don’t take it as a compliment anymore when people say I’m “so strong” because I’m still doing something

Because what, when my M.E. gets to the point that I can only lie there and breathe, then I don’t matter anymore?

It’s just horrible being reminded that there are people out there who would look at you and think you, as a disabled human being, are inferior, weak, and lazy, for the sole reason of you existing without also inspiring them.

As fellow blogger and severe M.E. sufferer Laurel stated, Emily 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. She thought her causes important enough to spend her very valuable resources on them, but when she became unable to continuing doing in her last years, that did not, and does not, make her any less strong or determined.

Lastly, 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.

I’ve no idea what kind of conclusion statement would be appropriate for such an entry… Most of this post is a combination of things I’ve written in other places over the past week, that I edited to make into a blog post. So that so much needless sickness no longer occur, I hope that things change for us in the near future.

Somehow.

a rainbow at night

How I Forgave the Doctors That Called Me Crazy

Now, I’m not about to type some grand, philosophical debate about the necessity of forgiveness that will go over everyone’s head… Or at least, I hope it won’t turn into that.

This year I feel I’ve really evolved as a human being. A lot of my focus has been to get rid of the anger I’ve felt… Another major thing I finally let go this year, actually, was the resentment aimed at those who got to enjoy things I may never get to do. Ever. Sure, I couldn’t be angry at friends or family, that was easy enough, but put me in the room with a stranger who’s telling me about how they’re going to a party that night with all their friends, and… You get the idea.

I owe that in huge part to reading Toni Bernhard’s How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers, for actually giving me the tools to know how to do that–how to acknowledge those emotions without feeling I was a bad person for even having them, and focus on how much more wonderful it was that they did get to do those things, than it was that I could not. But I honestly don’t have any explanation for how I came upon the realization I’m about to share in this post, besides that my brain has apparently developed some kinder, more mature, more well-rounded ways of viewing things I’ve thought a thousand times before.

Probably close to 95-99% of people who have either Late Stage Lyme Disease or Myalgic Encephalomyelitis–or, if you’re like me, both–didn’t arrive at that diagnosis very easily. (As those are the main two diseases I have, they’re my focus, but feel free to apply this to whatever similar invisible illness with which you’re dealing/you’ve dealt.) No, it probably went something more like:

  1. Go to the doctor expecting a quick fix for unusually-persistent symptoms
  2. End up getting sent to every specialist known to medicine because primary physician has no idea what’s wrong with you
  3. Get called crazy by every single one of them when the tests either come back negative or don’t show anything significant enough to explain why you feel like you’re dying
  4. Possibly get prescribed the most strongly contraindicated “treatment” for your disease because no one knows what you really have, yet, which makes you immeasurably worse
  5. Get called crazy a few more times, and thus
  6. End up being evaluated by five psychiatrists who don’t find anything wrong with your mental state, or blame everything on a mental disorder that doesn’t actually cause anything you’re experiencing
  7. Finally get the correct diagnosis years later, through what seems like the most random series of events that ever played out in your life

Am I right?

All in all, the stage of acceptance known as “Anger” doesn’t really go away like some of the others. The resentment and anger at all the doctors who could have helped you sooner had any one of them just not been so determined to say it was “all in your head”; the anger at those who called you crazy and said there was nothing wrong with you when you actually had a progressive disease; the resentment at those who thought you were faking just because the tests were negative; the anger you experience all over again at remembering any and all of the horrible doctor visits where you were pleading for them to do something, anything, only to be told you just needed to get out more, and probably see a psychiatrist.

Trust me, I’ve been there. So when this sort-of-epiphany hit me, it was like a ten-year burden had been lifted off of me:

Did I truly, honestly think, that any one of those doctors who called me crazy, had any idea that I was actually suffering from a progressive neurological disease? Did I really believe that those people, those fellow human beings, somewhere inside knew that I was dying, and just decided to recommend exercise and antidepressants for the sheer fun of it?

If they had known that what a terrible disease the original version of “CFS” was–that it was myalgic encephalomyelitis, that it was made worse by exercise, that it was progressive in 25% of cases and fatal in roughly 1 of 20–would they have just told me to “get out more,” or “exercise more,” or “get back to work, you’ll be fine”?

If they had known that Lyme disease or Bartonella exists in the south–that it would lead to multiple sclerosis, that the tests are often negative even if you do have it, that I still needed long-term antibiotics based strictly on the clinical presentation–would they have told me there was no way I could have it, that it was harmless even if I did have it, or that it was “only fatal in people with AIDS” and that there was “no reason to treat”?

Absolutely not.

What kind of monsters did I think these people were? No one in their right mind, especially a doctor who has sworn to Do No Harm, would know the truth of a disease so destructive and still call their patient crazy. If someone was suspected of having MS, or HIV, or cancer, or a neurodegenerative disease, these physicians would have done everything they could to identify and fix the problem. If they had known what I was up against and what the right approach to treatment was, they would have done it.

But they didn’t know. And that wasn’t entirely their fault.

Sure, there are always some doctors who go in it for the money and don’t care that much one way or the other, but they are few and far between. And sure, a doctor who keeps up to date on the latest research and alternative therapies is going to be more open-minded when it comes to a rare case–such as my own doctor, who is actually using me to teach her interns. And we can’t forget that it’s not 100% the doctor’s responsibility to figure out what’s wrong with us based on absolutely nothing: We also have to be honest and not afraid to be our own advocates.

My LLMD says, The passive patient never gets better. (And that pretty much applies to anything in life: If you only sit and wait for life to bring you what you want, and take no initiative to help make that happen, you won’t get anything.) But when it comes down to it, there is a whole cluster of reasons to why most of the specialists we saw were completely incapable of giving us an accurate diagnosis, the biggest of which is lack of information. The reason we patients advocate so much is because in our hearts, we know that if someone else has the information we didn’t, they hopefully won’t have to wait so long to get accurately diagnosed and treated.

Now, there are some exceptions. There are doctors who know the facts and, because of legal reasons and public position, choose to turn and look away whenever one of “us” come their way. But that is also very, very rare. Most all of the dozens upon dozens of specialists had no idea what was wrong with me, what was wrong with you, and could only give us the best advice they knew, based upon what they thought was happening. In hindsight I really do understand how someone could think I needed psychological intervention, if they had no clue that my disease really did do all the things I was reporting.

You don’t throw a paralyzed child into a swimming pool (as happened to one internationally-recognized M.E. patient) to try to “snap them out of faking ill,” if you honestly believe they are sick–you do it if you honestly believe they are making it all up, because you have no knowledge of what M.E. actually does. If there is anyone to be upset with, it’s those in charge of spreading real facts about these crippling diseases, and who don’t do it; not the doctors who have been armed with information they believe to be true, who just so happen to be completely misinformed about what we have.

So I finally just stopped being angry at them for not doing what they weren’t even capable in the first place.

You may have heard before that, Forgiveness is letting go of the hope that the past could have been any different (a quote popularized by Oprah though she’s not who originally spoke it). And in my realization, I also let go of the thoughts that any of the doctors who had mistreated me out of their ignorance, could have ever treated me any differently based upon what they knew. If they knew better, they would have done better. I am now going to instead focus on how blessed I am to finally have my diagnoses, and be glad that I am one of the lucky ones who still had time left to begin treatment. I hope this can help some of my readers move past their anger, also, perhaps just a little more quickly than they would have, otherwise.

Be blessed in the New Year, and always!

a rainbow at night

Article: “Brain and body training treats ME, UK study says.” This is so horrible I cannot even fathom its existence.

It’s been a while since I had a good rant concerning the blurred lines of CFS and M.E. and how horrible it makes things for us… I should have known when I clicked on this article, my blood would start boiling. So I’m going to rant here, and get it out of my system.

Chronic Fatigue Syndrome, also known as ME, should be treated with a form of behavioural therapy or exercise, say British scientists.

Symptoms include severe tiredness, poor concentration and memory, muscle and joint pain and disturbed sleep.

This is not a disease, it’s most of the stressed out world right now. Tiredness and pain aren’t even necessary for an M.E. diagnosis, yet they remain a integral part in all the “CFS” madness. The main symptom of M.E. is “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, [one should] 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. [A. Melvin Ramsay, M.A., M.D. Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease (London, 1st ed. 1986, 2nd ed. 1988).] Clearly there is a problem when the one thing that exacerbates M.E. is being proposed as the cure for it!

The authors say cognitive behavioural and graded exercise therapies were the most successful, both at reducing fatigue and increasing physical function.

With cognitive behavioural therapy, 30% of patients returned to normal levels of fatigue and physical function.

In other words, 1/3 of the group probably had no illness at all.

“Worryingly, 34% reported that graded exercise therapy made them worse.” The authors suggest that poor advice, such as suggestions to just go to the gym, could be responsible for bad experiences with the exercise therapy.

And in other words, only 1/3  had real potential of having the neurological disease Myalgic Encephalomyelitis, which is irrefutably made worse by graded exercise. Does anyone else notice that they don’t explore other options for why they got the results that agreed with their idea, yet when they find 34% were made worse by it, their first idea is to explain it away with something trivial like the patients getting “poor advice”? That’s just bad science.

The Association of Young People with ME welcomed the findings. It said it hoped that fears about graded exercise and CBT were laid to rest, and that the study needed to be repeated in children.

No one likes the AYME anymore since they took sides with the government, but, I cannot even express the amount this terrifies me. Just because you have a “CFS” diagnosis does NOT mean you have M.E.! Oh lord, those poor children! Exercise is the absolute, number one thing that you must avoid at the beginning of the disease! But because of studies like these, which group people who aren’t even sick, and people who are misdiagnosed with CFS (but who actually have things like thyroid disorders, cancers, and infections such as Lyme), with people who have classic M.E., the government uses these botched studies to propogate that this IS the treatment for “CFS/ME.” And then those children have their lives ruined by having the “treatments” forced on them, or else they are thrown into asylums for “refusing to get well” (this DOES still happen–it IS happening right NOW!), all because of things like this.

When people say it doesn’t matter, or wonder why I get so flustered when someone says “CFS” instead of M.E., or uses terms like “CFS/ME,” this is why. THIS IS WHY.

NICE (the National Institute for Health and Clinical Excellence) said the findings were in line with current recommendations.

There isn’t a single M.E. sufferer out there that agrees with them and their recommendations of not doing any needed medical testing, not supplying adequate pain relief, and using behavioral therapy and exercise to “cure” an often progressive disease of the muscles and brain.

Dr Fergus Macbeth, director of the centre for clinical practice at NICE, said: “We will now analyse the results of this important trial in more detail before making a final decision on whether there is a clinical need to update our guideline.”

Read as: “We will now add this to our arsenal of deluded CFS studies to prove we are right, so people can continue using them in court to force potentially fatal ‘treatments’ on M.E. sufferers.”

I will always be appalled at this. When will people wake up.

My rainbow is a little darker tonight.

a rainbow at night

Why I think the new Myalgic Encephalomyelitis International Consensus Criteria are not much better.

I’m sorry I haven’t posted with my IGeneX results, yet. But right now I feel like talking about the new International Consensus Criteria for Myalgic Encephalomyelitis. And no, I’m not one of those people who tries to find something wrong with everything. I just wanted one thing, and I didn’t find it…

First, none of this will make sense if you don’t understand this fact: Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (M.E.) are two distinct entities. If you look to the right of my blog, you’ll find this, which I’ll repost:

CDC agrees that M.E. is not the same as CFS:
“Various terms are often used interchangeably with CFS. CFS is the preferred term because it has an internationally accepted case definition that is used in research and clinical settings.

The name chronic fatigue and immune dysfunction syndrome (CFIDS) was introduced soon after CFS was defined; there is no case definition for CFIDS, and the name implies an understanding about the pathophysiology of CFS that does not currently exist.

Chronic active Epstein-Barr virus (EBV) infection (chronic mononucleosis) was thought to be the cause of CFS during the 1980s, and this association is now known to be rare.

However, post-infection fatigue syndromes have been associated with EBV and other infectious agents. 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 (CDC), US

This brings us two points:

  1. CFS has an internationally accepted case definition. This definition is based upon the symptom of fatigue without a known cause. All other neuroimmune symptoms are secondary and non-essential for diagnosis. So, if you have unexplained fatigue with sore throat and lymph nodes, headache, and post-exertional exhaustion, while another person has unexplained fatigue with poor sleep and memory, with muscle and joint pain, you both have the same illness as far as “CFS” is concerned, despite fatigue being the only thing you have in common.
  2. Myalgic encephalomyelitis also has a distinct case definition, accompanied by neurologic and muscular signs. The best definition for M.E. is Ramsay’s definition of 1986, which describes the key feature being “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.” He goes on to write, “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.” [A. Melvin Ramsay, M.A., M.D. Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease (London, 1st ed. 1986, 2nd ed. 1988).]

After several outbreaks of what was undoubtedly M.E., the CDC did a mediocre investigation (if you can call sending one person to collect a few blood samples then announcing “mass hysteria” an investigation) and invented this “new” syndrome of chronic fatigue. Over the past 30 years, it’s become a catch-all group for anyone suffering from fatigue for which no cause can be found, which includes anyone with undiagnosed cancer, hypothyroidism, depression, Lyme disease, myalgic encephalomyelitis, and various other physical and psychiatric disorders that have fatigue as a symptom. The only thing any of these people have in common, is that they are tired, and are very sick; some of them are dying due to misdiagnosis. In the most recent paper (which I’ll source a few paragraphs down), this is written:

“In a study of the Reeves empirical criteria [for CFS], Jason et al reported that 38% of patients diagnosed with Major Depressive Disorder were misclassified as having CFS and only 10% of patients identified as having CFS actually had ME.

Needless to say, it’s a very, very poor category to fall into when you’re sick and trying to cling to life. I’ll leave the conspiracy theories out of this, though nearly everyone has an opinion about how it came to happen that a deadly neuroimmune disease got classified as the same thing as a syndrome with “general unwellness and fatigue” as the main symptom. Ultimately, several “specialists” went into a room and decided upon the name of CFS for all the “new, unexplained” outbreaks (which they really did think was mass hysteria) even when knowing-virologists walked out, refusing to take part in classifying a viral-induced illness that was killing people as a “fatigue syndrome.” There’s much debate over if other pathogens can trigger M.E., but it usually has viral onset, and is contagious in the beginning stages. If you wish to know more, please see the links on the right of this blog.

Now, the real specialists we admire (no sarcasm there) have nearly succeeded in making a new, international definition for M.E…. You’d think I’d be happy (and I almost am), but they’ve completely left out the MAIN SYMPTOM, which is an abnormally delayed muscle recovery after doing trivial things.  The core symptom of M.E. is in the muscles. How is this new international definition any better, if this main symptom is not the focus?

If you ask me, people with chronic Lyme disease are still going to be misdiagnosed with this new definition, which still focuses on “physical and/or cognitive fatiguability in response to exertion.” It includes “neuroimmune exhaustion,” now, but did you know that Lyme disease also causes an immune system activation 24-48 hours after activity (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses, Joseph J. Burrascano Jr, MD. September 2008.)? I’d imagine other chronic infections can do this, too. In the new paper, they source the recent CFS study about spinal proteins which claims to distinguish CFS patients from “Post-treatment Lyme disease,” but the fact that they are even mentioning the phrase “Post-treatment Lyme disease” is horrifying, as such a category doesn’t exist: Ongoing infection (which has been proven) is the cause of so-called “post treatment” Lyme symptoms, and to not acknowledge this shows a huge misunderstanding on their part, which will be greatly detrimental to their efforts. You cannot afford to not understand something which shares so many symptoms with the disease you are studying, and also, how can you possibly quote a study that uses the same flawed definition of CFS you’re trying to protest, as a support for your paper?! That is a circular argument, and just.. completely unsound!!

Thanks to a link at THE NICEGUIDELINES BLOG, I’ve been able to view the full paper that was ultimately published in the Journal of Internal Medicine. I recommend you visit there and read the paper for yourself, but here is the proposed new definition, via photo:

All of that said, I really do think this new definition is a huge step in the right direction. We’ve all been begging for a new definition for years. I’m a big fan of the Nightingale definition, but it’s not commonly used. I believe the Canadian Consensus Criteria were developed in 2002? It’s been almost a decade since we’ve seen any new definition, and if it had to be anything, I’d surely choose this one over the mockery of “CFS/ME” definitions that exist in other countries, and “CFS” definition we have here in the United States. It will help eliminate some of the other misdiagnoses, especially of psychiatric origin. If THIS becomes the new “CFS,” it will make sense to use terms like “CFS/ME” and “ME/CFS”–while as of right now, as I’ve said many times before, that makes as much sense as saying “lung cancer/chronic cough sydnrome” or “HIV/chronic sinus infections.” In other words, none at all, and it’s extremely offensive to those who have it.

And at least the definition does focus more on the rapid loss of energy that occurs, physically, which does include the muscles… I just highly, highly dislike the “and/or cognitive fatiguability” part, which means you can still be included even if your muscles aren’t the part that’s weakened. Your brain isn’t going to be paralyzed; your muscles can and will, with continued use, if you have M.E., and that’s a major part of the diagnosis that needs to be considered, as Dr. Ramsay said back in 1986 before he died. I have a family member who becomes extremely mentally fatigued as the evening wears on, and would qualify as having M.E. (or this new term of “atypical M.E.”) if someone used these new international criteria–yet they in no way qualify as having the same disease I have. So I definitely see where this will be a problem in the future… But at least it’s a step, right? Comments are welcome.

a rainbow at night

ARTICLE: RCGP, aka the “Mrs. Simon Wessely” College tries to reclassify M.E. as CFS…again.

So once again the UK Psychiatrists are trying to get M.E. reclassified as “chronic fatigue syndrome.” They’re trying to get a neurological disease and a state of perpetual tiredness, to mean the same thing across all the world. They may as well be trying to reclassify lung cancer as chronic cough, or HIV/AIDS as chronic sinus infections. I wish I were just making this up.

Read more.

As if that weren’t enough, they also advise AGAINST testing for infections, so people who DO get diagnosed with this “CFS” category will never find out what their real problem is, which is sickening since most EVERYONE I know with Lyme disease got a diagnosis of CFS first. THEY EVEN RECOMMEND NOT TESTING FOR HIV!!!

When is someone else going to step in for us? If this happened with some other disease the entire world would be in uproar. Spread the word.

“So to answer your question, the main characteristic of M.E., the abnormally delayed muscle recovery after doing trivial things, is essential in any M.E. research, just like a broken bone is essential if you do research into broken bones. If you do research into broken bones with people who don’t have a broken bone, but say they do, then your research is obviously seriously flawed to put it mildly.” (link)

a rainbow at night

Lyme flare recap, pictures, and a small rant

I’ve decided to do things a bit differently this post. I’ve been planning this entry for four days, but I’ve been so severely confused and disorganized that it’s been a huge struggle! I did manage to scrape together some random notes for a private entry on Monday, so I can use those to help me. Several things to say this time around, but first thing’s first, considering the entire reason I have this blog: Symptom recap.

This has been the lightest Lyme flare I have had in months. I was not bedbound! I barely had any dystonia and I had no cardiac involvement whatsoever! I did get parkinsonism. But the main feature has been extreme cognitive dysfunction (brainfog, if you will). My eyes dance over words instead of reading them, my brain hasn’t been able to form sentences in the right order, and my memory is on temporary hiatus. I’ve also had moderate-severe fatigue, which was expected. I’ve fallen asleep numerous times during the day, and the fact that my sleeping has been so disorganized at night does not help. There’s been more difficulty breathing, and my herxing has been worse, which I seem to recall happening last month around this time as well? I did have a day or two where I was extremely thirsty, but I don’t know if it was infection-related borderline dehydration or Zoloft-related cottonmouth… And I had several “headache bursts” from the 19th-20th; it eventually stuck on Monday, and moved to my neck, so I needed Lortab and ibuprofen. My back was hurting, specifically my upper back (another Lyme trend–it used to be my lower spine, but more recently it likes to affect my upper spine), and I also had the strange arm numbness phenomenon that happens, with certain severe headaches. Monday night was severe as far as the dysautonomia is concerned; my tongue was completely numb, and my face tingled. I was also anxious, which tends to happen when the vagus nerve is being.. out of line. Sometimes when I digest, it can feel like an anxiety attack without the anxiety, if one can imagine that sort of thing.

Otherwise,I’ve been seeing things more often (again), starting at least around the 17th. There was a possible bartonella flare on the 19th-20th: I had a ton of shin pain, and moderate amount of foot pain. However, my legs were also sore in general, so I’m unsure if this cluster of symptoms was bart-related or just activity-related. That said, I also had the moodswings, the muscle spasms, and the frontal headache, so…

Being in the sunlight for five minutes on Monday started a systemic reaction that lasted all night, even with ibuprofen. It’s not arthritis or joint pain, but it makes it difficult to bend my joints, because it feels like something is tearing. My joints are warm to the touch. Does anyone else get that? It’s funny, because it’s a Lupus-like symptom, but I happen to be one of the people with (multiple!) negative ANA results! I find that ironic in a world where it seems like everyone with Lyme gets a positive ANA at one point or another.

Also, I’ve had tinnitus for a month now…at least, that I’ve noticed. There is always some type of white noise in my surroundings, and I’ve noticed for the past month that whenever it’s truly quiet, my ears are ringing constantly. They of course started doing strange things when I started the Zithro, and there were those couple of weeks when my equilibrium was completely off, so I’m assuming there’s some inner ear component to this illness. Who knows, I’ve always struggled with ear infections. It was even an ear infection that made the M.E. relape, as well as caused scarring from the persisting inflammation; truly, who knows! But I hope it’s not permanent!

I saw my primary physician on Monday, which is why I left the house. She was very glad to see the treatments are finally working for me; even she was starting to wonder whether they’d be worth it. She was pleased with the combination of medications I was on, also. She said Rifampin added to other antibiotics can increase the effects of those other antibiotics, so even a small dose is still like a superdrug. Makes perfect sense to me, and helps solidify all the things I’ve “heard” about Rifampin increasing the effects of other antibiotics: It’s true!

Now, would anyone like to see a few photos for a change? First off, about three weeks ago an “anonymous” friend mailed me a Giant Microbes plush of Lyme disease. I took a picture of him! (And eventually found out the friend.)

Then the day before, another friend mailed me a box of assorted presents, including a belated sugarfree Easter bunny! There was also origami (cranes in a box and one dragon), a gorgeous necklace, more sugarfree chocolate, soothing scented candles, and.. baby spirochetes!!


Aren’t they just adorable? I unraveled the one at the top to sling around a bit, ha! What I didnt include in the picture are the new notecards (complete with rainbow-esque case), but that’s because I was too busy using them to keep myself organized!

Also, the card has a Yorkie sticker on it. That’s because I have a yorkshire terrier/maltese mix (technically a Yorktese), named Muffin. My family has been taking care of her for the most part until just recently, when, with my improvement, I’ve been able to be more of a dog mommy to my own dog. She’s still growing her hair, but here is a recent picture of her!

It took so long to get a good shot of her–I eventually had to put the camera on the ground!

If you rememeber me briefly mentioning Zoya Nail Polish in my first video post, I believe I was wearing Yummy. I recently applied it again (just one coat, though) and thought I’d share. I’d like to start encorporating more of my “real life” in this blog (things that don’t revolve around symptoms and disease advocacy) as hopefully, with my improvement, I’ll have more of that to share.

There’s still a health-related hook, though. The main reason I love Zoya–beside the fact that they are free of dangerous chemicals, particularly camphor, whose toxicity can be inhaled–is that the application lasts so long. No more chipping in just a day or two, ladies (and the occasional fellow); with Zoya I can use two quick coats and have it last all week. It’s become a ritual of mine that helps brighten my mood and my self esteem. If I cannot do it myself, a family member will help me, but every Friday night I redo my nails, as I briefly mentioned long ago in my How to Deal with a Bad Day post. :)

And one last thing. As a fair warning, please do not send me e-mails telling me how you do not “believe” in M.E., or chronic Lyme disease, or whathaveyou. I’ll simply block you, like I’ve had to do once already this week. (What a  coincidence–or not–that someone found my blog this week by searching for “myalgic encephalomyelitis why no one believes my pain.”) It’s bad enough that I can’t talk to people with Lyme disease without them doubting that M.E. exists, and that I can’t talk to people with M.E. without them doubting that chronic Lyme disease exists. They BOTH exist. I had one, then I got the other; I am your proof. Do you have any idea how hard it is to get support in either of those communitities? And for that, I blame the CDC, for literally CREATING the category of “CFS,” so that people are forever being misdiagnosed with this catch-all syndrome instead of their real ailment, whether it’s M.E. or Lyme or cancer or whathaveyou. Like a friend said: If I had HIV, would people question that I couldn’t have HIV because I had Lyme, or vice-versa? No. They understand that they are distinct, both disastrous, and you can have them both. You treat them, and you do the best you can.

I’ve given everyone lots of accurate information about both M.E. and Lyme disease through the links on the right side of this blog. Please make use of them before contacting me about such offensive matters.

Until next time!

a rainbow at night

I’m allowed to have some enjoyment in life.

I do have a facebook. And today, I watched movies on television practically all day. I can’t remember the last time I did such a thing. It’s very draining for me to watch movies, but commercials help as I can mute and rest every 10-15 minutes to avoid overstimulating my nervous system, so today, that’s what I did! And so I mentioned this on facebook, about me having a lazy movie-watching day.

Someone replied with “I wish I could have a lazy Saturday.”

I deleted the comment immediately.

Now, I know this person, and I know they didn’t mean anything upsetting by it… On the same note, I highly doubt they thought it through, making a comment like that to someone who is.. well, me. But it severely struck a nerve with me, for this and every other time someone has ever said something to the effect of “well I wish I could just do [insert something that people usually find relaxing] instead of [whatever hard "real life" thing they're doing].”

And I do understand it’s a normal first thought reaction from someone who is very busy with this “real life.” I hope to soon have a “real life” of my own. But you just don’t say that to people who are chronically ill and disabled, especially with a so-called “invisible” illness, i.e., the diseases that no one could tell you had unless you told them.

It brings up our entire history of getting accusatory looks and people making snide, judgmental remarks, which all aim to imply, You can only do “sick people” things, because real sick people don’t have any fun. The same looks that say, You have to prove to us that you are actually ill by acting ill; the ones that say, You’re not allowed to be anything but miserable because if you really felt so bad then you’d show it; and the looks and words and hints of ableist elitism when someone sees us buying a movie instead of a bottle of medicine, a chocolate bar instead of a salad, a CD instead of something “medically necessary,” or spending any small amount on something for us instead of putting it into savings, because clearly it’s just an abomination that we should have any enjoyment out of life, that we should try to hang on to some of the things we used to love, right?

It brings up all the doctors giving us strange looks when we still manage to laugh; people in parking lots giving us dirty stares because we park in the handicapped spaces but don’t looked “disabled enough”; the government literally spying on us during our “good days” when we’re out, and using that to argue a case that we must no longer be disabled and our payments need to be stopped.

It brings up everything that we’ve suffered through from others over the years, that constantly try to strenghten the divide between the sick “us” and the healthy “them”, and seeks to affirm the following: You are different, we are not the same, so be what I expect you to be.

So no, don’t say you wish you had what I have, or were doing what I was doing, or that you could trade.

Don’t say things like, “I wish your relaxation was all I had to worry about,” unless you really think being unable to function due to disabling illness 95% of your waking hours that is every so often intervened by short moments of reprieve where you’re actually able to enjoy yourself, sounds like your idea of a vacation.

a rainbow at night

Still waiting…

Times like this when I wonder if my treatment has stalled out, or if I’m just being impatient.

I think the breathing episodes from yesterday could have been the result of redirected blood flow to my intestines, even though I didn’t eat a lot. I had a small episode of breathlessness about two hours after last night’s Rifampin, and again two hours after today’s. The culprit was dysautonomia, which has been getting more irritable since this last Lyme flare started, as I mentioned here in reference to the numbness rearing up again. After the digestion stopped, things went back to normal again. I can’t say for sure that’s what happened for three hours yesterday, but it’s worthy of note, regardless. My limbs went numb, and I had physical symptoms of anxiety without the mental anxiety; typical of “the episodes.” It’s like I’m herxing worse, for some strange reason.

Today I’ve been in another limbo. The entire day has been a back-and-forth of “I feel okay” to “I feel horrible.” I wish it would just pick one so I know how to react. This instability is maddening. Right now I’m in one of the bad parts, and my evening headache has arrived so I’m on more Lortab. I need to add ibuprofen because the other one alone does not relieve inflammation and therefore doesn’t do much. My eyes hurt and are sensitive. My neck hurts. It’s been hurting a lot recently, actually. It now pains me to look downward, and I can’t past a certain point, which I noticed today. I halfway wonder if I’m dealing with subclinical meningitis. I mean, if it can happen in syphilis (A chronic subclinical meningitis (meningismus) is sometimes associated with syphilis)… There’s no telling what goes on inside you when you have at least three infections in your brain and spinal cord. (Ironically, the next few lines after that quote talk about offering Rifampin as a treatment…! The book is about the hidden connection of AIDS and syphilis; in modern days, we’re dealing with the same retrovirus + spirochete combination, except now, it’s XMRV and Lyme.)

It feels like I go through stages with the headaches, as well? Honestly, the strange patterns these diseases take. I go through a spell where I barely have any headaches, and then I go through a few weeks where I get them daily. And back and forth.

You know what I don’t feel the need to do anymore? To say I’m thankful. To remind people that even though I’m frustrated, I do appreciate the things I have. I used to care too much of what people thought, and that if I took a moment to explain why I was distraught, someone might take the wrong way and just act like one of my doctors or ill-advised family members and respond with, “You just need a better attitude! Think of the positive!” Well, I no longer feel the need to explain that I always do that, even on the days that I’m frustrated. If I can gain any lesson from days like this, I’ll take that one.

a rainbow at night

Frustrated rambling: I simply feel sick.

I want to write but I’m not even sure how to start. My brain is not in a good-enoguh place ot make much sense. I’m frustrated. And I can’t tell how much of this is just my mood or real, honest frustration.

This is the kind of post I wuld keep to myself, but… I think it’s important to post so that others who see my blog don’t feel so alone. Hey, we all feel this way. So I’ll make it public.

First off, yesterday I felt.. really good! It was just a simple not-sick feeling that is pretty rare. I had enough energy to take a bath in the middle o the day. :) But I was also really, really moody, and I had a lot of random derealization. I don’t know why I bother to say “I’ve lost track of my bartonella flares” because every time I announce it, it’s like they hear me, and remind me. I was irrationally angry (and this was after finding peace with whatever issues had actually been on my mind!) and volatile for no good reason. My feet really hurt, particularly my right one. I had stabbing head pains. But no fever yesterday!

Perhaps I’ve been spoiled by how well I’ve been feeling. I felt really good when I recovered from the hospital in March. Then I entered three weeks of feeling horrid in April… Then I came out of it by May. Then the end of May come around and I started to feel horrid again.

Yesterday wast he end of my Lyme flare; my headache was compeltely gone and again, I felt good. Today has been the opposite. I was so out of breath for about three hours. It was scary. It wasn’t “air hunger.” If I had my oxygen I would have used it, and I think I needed it, because I fell asleep like I used to a long time ago when I was unware of the infections an dI couldn’t stay awake so I’d slip into this involuntary semi-coma because of my O2 levels dropping. Trying to move only made me further out of breath. I had not taken anything unusual, nor eaten a big meal. When I woke up, the “spell” had passed, and I’m not having nay trouble breathing otherwise. I’ve no idea what it was. It started at about 3pm and lasted until I woke up at 6pm. I’ve been in bed all day, too generally out of breath to stay upright.

I just hate being in this limbo and not knowing why, because then it becomes impossibel to figure out if it’s something I’m doing or something inward that I have no control over. I supposed the best I can do is just to do whatever I can correctly, and chalk the rest up to my body being my body… Perhaps I just got a little too excited with my last improvements, that things were going to keep being like that. I don’ tknow, maybe they still will…