New month, new progress, new test results

Spider Web, Rockefeller Forest, Humboldt Redwoods State Park © a rainbow at night

I’m pleased to be writing that I’ve made many great strides in getting my life back on track over the last three weeks. I logged back into my Twitter account and began using it on a daily basis; participated in two “spoonie” meet-ups online, #SpoonieChat and #SCTweetFlix; am replying to some messages when my brain has readily-available thoughts on the topic; and have joined a sort-of spoonie/artist/support group/project, even if I only participate sporadically.

Other things haven’t changed so much. I have yet to open any e-mails, or even log-in to my account for that matter. And I’m still staying far away from the M.E. community and the Lyme disease community, i.e. anything to do with that style of advocacy or activism. I momentarily tried to look at how the Lyme community was fairing, but immediately saw memorial posts concerning a young woman’s suicide. I’m not psychologically prepared for that constant exposure again, as I think I’ve made very clear. I stepped into the M.E. community to test the waters, also, but that was equally a mistake.

Mostly, I’ve gained back a lot of personal power that I didn’t even realize I’d given away. I’m on a journey here, and no one has the right to tell me how far along, or at what point on their map, I should be at. I don’t even have the right to talk to myself that way. I’m also under somewhat less stress now that I’m no longer shouldering my family members through their own recoveries. I still have a lot of trouble communicating, particularly in person, but since being on antibiotics for two weeks, that has temporarily improved. In hindsight I wonder if all my temporary improvements in brain function were due to the antibiotics, or just this time.

Now that I’ve moved into the part of grieving where you can look back and see why you handled things the way you did, I realize that I didn’t do much honouring of the choices I made, even the unconscious ones. But I now have the opportunity to re-frame and integrate the experience, so I’m going to take it.

I honour the parts of myself that knew not make my drama everyone else’s responsibility. I honour the parts of myself that recognized I had to heal a little bit more first, or all my interactions would be coloured by distortions too thick to see through. I honour the parts of myself that knew I needed merciful stillness, not ruthless force, and I honour that which gave me permission to listen.

Whereas part of me assumed I’d be swallowed by deep regret over the time lost, friendships lost, and God knows what else once I finally got free, I very surprisingly feel gratitude. 

I’m grateful for even having had the opportunity to take that “time off” to recover. I’m grateful for all the fights I didn’t provoke out of my own pain, had I forced myself to socialize. (Although, in the state I was in, I can’t imagine I’d have been able to find the words for any argument, honestly.) I’m grateful for me being able to realize I was the one who was overburdened with grief, and that it wasn’t anyone else’s job to revolve their life around me to fix that. (Not that I would even do that, but I recently witnessed someone who was blaming an entire community for their own emotional suffering, to the point that they thought the community had to change to make them happy. It did make me think, “Damn, I may have trouble being around certain groups, but at least I realize this is a personal issue, and that no one owes me an apology for living their own life the way they’re entitled to do.”)

I’m still terrified that the day will come when I’ll wake up and everything will have changed without me knowing why, that I won’t be able to tolerate anything again, or another severe trigger or actual lived trauma will set me back months or years. Just as I fear that the next bad headache will be the start of another relapse. Just as someone with depression fears that that one day of sadness will turn into six months of crushing despair. The difference now is.. well, probably something neurological, as the antibiotics have shown me. But I’m no longer allowing that fear to stop me from participating in whatever ways I can choose to, while I’m able.

Thanks to meditation, I have long since found the place in myself that knows It’s not the feelings, nor the thoughts, but the One who is experiencing those things. That place in me is always still, no matter what. To be simplistic, that’s what we call “the lion’s roar” in Buddhism, the ultimate truth within us that causes all other noise to fall away, like beings from all four directions bow away from the sound of the mighty lion’s roar claiming its territory.

From my current perspective, I have two options. I can listen to the survivor’s guilt, the irrational shame, and ruin my life (or at least this stretch of it). Definitely allowed, but not recommended, and clearly unbeneficial. Or, while I’m healing, I can remember that the end point of treatment will be to eventually FEEL that those thoughts are untrue, as well as know that. But the way I see it, there’s zero reason for me to wait until I FEEL those things aren’t true before I start living better. I know the chaos is full of lies, regardless. I know they’re lies now, and I’ll know they’re lies after recovery. Why do I have to wait for my ever-so-fickle feelings to catch up with what I already know, when I can just start living that way, right now? Yes, I’ll still have the thoughts, and they’ll still feel true for the time being, but I know they’re not, and I’d rather have the thoughts while I’m attempting to put my life back together, than have the thoughts while I’m holed up in my house for months.

I can’t give away my power to change the things I can. Because this is how I gave away my strength, by forgetting the immensity of power lying within all the tiny, monotonous choices that actually make or break your life. When I saw myself writing in my last post that I’d started to self-perpetuate my suffering, I knew I had to change that, or it was not going to end well. It also gave me a little hope, because I finally saw a piece of this that was within my control. If there was something I was doing to make this worse, then that also meant there was something I could do to make it better, simply by making a different choice. So I did, and here I am, three weeks later, continuing the momentum that sprung from me publishing that last post after six months of complete silence. That post took me three months. This one took me three weeks. That should say enough.

I don’t doubt I’ll still have “good days” and “bad days.” I’m trying to mitigate the chance of another “disappearance” a bit by taking Sundays offline, in hopes that, like so many other symptoms, if I just rest for a bit regardless of how I feel, I may be able to prevent whatever it is that builds up and make me cognitively shut down. I’m not sure if it’ll work, as I still have no idea what causes that, but I’m trying, damn it.


My latest tests results are equal parts disturbing and fantastic. Good news first?

My last homocysteine level before this one–which, in conjunction with a methylmalonic acid bloodtest, helps determines the rate of your folate metabolism, as well as suggest your risk of stroke and blood clots–was almost 30 (29.4). It’s supposed to be under 10.4 at the maximum, which means it was literally three times as high as it should ever be. Not great! Before my folate deficiency really kicked into gear, it was a lovely 7.2 umol/L. Well as of March, it’s all the way down to 15.8, which is basically only 5-points-above-normal. I’m almost cured of my folate deficiency!

Similarly, when I began treating these methylation problems, I could only tolerate a meager 100 mCg of methylfolate every 3 days. Now, I can tolerate a wonderful *500 mCg* every 3 days, and I’ll probably be able to increase that, soon. (As well as B12, of course, but I need more methylfolate than B12 at this point. I’ve found the hydroxo-cobalamin works much, much, much better than any other type, for me. So heads up: If you have the MTHFR C677TT homozygous polymorphisms, in addition to being homozygous–that is, having both/two copies–of COMT V158M, COMT H62H, *and* MAO-A R297R, like myself, you definitely want to take the hydroxocobalamin form of B12 and just save yourself the money and suffering of trying the other forms. Yes, it works even better than methyl-cobalamin.)

My cholesterol levels are also fantastic and I don’t know if I mentioned here yet, but I’m no longer pre-diabetic after a lot of dietery changes to help treat PCOS. No relapses, there, either!

Now the bad news, even though I don’t know how significant this is yet because I don’t see my neurologist until next week. First, I haven’t found the results of my intracranial pressure reading, or else they aren’t putting it on my online chart, so I don’t know what’s going on, there. I did however get the results of my spinal fluid analysis, and while my glucose is normal (I think?), my protein is normal (I think?), and my white blood cells appear normal (pretty sure?), there were two things that were present that were absolutely not supposed to be: Lots and lots of neutrophils, and blood. I know this could point to meningitis, but I’d like to think if that were the case, my doctor would have called, because that’s serious? So I hope there’s some other explanation. I refuse to Google anything and scare the hell out of myself over what could be going on. I’ll find out soon enough.

Also, while I know the results of my MRI must be in by now, they, too, have not yet posted to my online chart, so I don’t know the results. And honestly, with the wave of fear that overtook me while reading the CSF results, maybe that’s a good thing, in the event it does reveal something troubling.


The spinal tap itself went great, but the recovery was peculiar, and combined with missing my IVIG for two additional weeks, I was feeling beyond terrible. The most bizarre symptom was that I could not stand more than two minutes without severe shaking, all over; the kind of trembling that makes even your teeth chatter together. But I wasn’t cold! Luckily it resolved as soon as I lied back down, but that definitely wasn’t in the “this could happen afterwards” care sheet.

About a week after the lumbar puncture/several days after my eventual IVIG infusion, I had all the symptoms of fighting some type of infection, but without a fever. It was enough to make the room tilt and spin whenever I moved, have hot and cold sweats, cause ringing in my ears, and ultimately a severe headache toward the end, but no fever? Then I remembered, I rarely ever get a fever, no matter what is happening. So after several days of that hell, I said “screw it” and started my antibiotics. I immediately began feeling better, as quickly as the next day. I spoke with my immunologist and was given more antibiotics, and I moved my appointment up by two weeks so we can discuss why my immune system isn’t able to stop all these bizarre infections from happening these last six months, even with the IVIG. I’ll also ask about mold exposure, because that’s a real possibility that I haven’t forgotten about.

During all of that mess I spent most of my time tweeting to pass the hours, and in the process befriended some great people. I tend to feel like an outcast on Twitter the longer I’m on there, so we’ll see how long I last on there this time.

Until next time,

 

Kit

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The Path of Least Disruption

“You don’t have time for perfect,” reminds Elizabeth Gilbert in her book, Big Magic.

I’m still alive. And one of the reasons I haven’t been around is because I knew when I returned, I’d inevitably hear about all the people who were not. That might sound a bit crazy, but, even when I’ve taken a month long break, anywhere from 3-6 people in our community will have died. With the winter stretch of the year always being the worst, I can only imagine who we’ve lost, now.

I don’t know how anyone is supposed to be okay with this. No one can possibly be okay when the only people they can truly connect with are those with similar diseases, and then to continually, year after year, watch all those people keep dying. Or otherwise become unable to communicate in a sort of living death, something that happens all too often in my communities. How do you not develop some type of complex around this? How do you deal with the constant stress of knowing that any time you go to make contact, there’s a 50/50 chance you’ll be knocked out by grief for weeks by the death of yet another friend? If anyone knows (and most do) what it’s like to live with a loved one as they’re dying, it’s the same fear you feel that the next time you enter the room, they will have already passed. That’s been my reality for years now, and I feel backlogged with grief. This can’t be healthy for anyone.

I’m 100% out of the loop with everyone. It’s as if I ran off to meditate in the remote forests of India for six months without telling anyone, and just got back. I haven’t been in a position to be anyone’s friend, as cold as that might sound. Or maybe it just sounds honest. There’s a family that needs me here; to coax them away from their fears by being their voice of reason, which is really just their own voice that they haven’t yet given themselves permission to hear; to nudge them towards seeking help, seeking God, and taking care of themselves; to fight for and protect the needs of the children, who might otherwise be overlooked; to show them the possibilities of loving life even when nothing goes the way they expect, or desire; and most importantly, to lead by example that you can face life exactly as it is; it might not feel great, and you will probably feel overwhelmed for large stretches of time, but it’s possible. The pain of facing the hardship of life is far, far, less than the destruction of a lifetime that comes from trying to avoid or ignore it. I’m so glad I’m able to be this person, still, for those in my immediate vicinity. But with the condition I’m in otherwise, it’s both the least and the most I can do. My cup is always full, and any spare “spoon” I pick up I try to use doing something I enjoy so I still want to keep living. So far so good.

"If you can sit quietly after difficult news; if in financial downturns you remain perfectly calm; if you can see your neighbors travel to fantastic places without a twinge of jealousy; if you can happily eat whatever is put on your plate; if you can fall asleep after a day of running around without a drink or a pill; if you can always find contentment just where you are: you are probably a dog." Jack Kornfield, A Lamp in the Darkness: Illuminating the Path Through Difficult Times (2011).

Of course, when I do feel happiness–which happens more often than my serious, direct style of writing here belies–I’m immediately courted by survivor’s guilt. I’ve come to accept those intrusive thoughts for what they are–mental lies–and try not to take them too seriously. I know they’re a sign I need help, which I plan to get, somehow. As I keep saying: I won’t abandon myself. I just wish it didn’t feel like I had to abandon so many others to get through my own life, at the moment. I might be pouring too much thought into that, but that’s just part of who I am.

Lately, most of my attempts at self-compassion immediately detour to shame and guilt. Only after meditation did I even notice this had been happening. One moment I was feeling gratitude that I was able to wake up and listen to music for an hour and meditate, the next I was thinking of children in war zones who can’t do that, and people with illness so severe they can’t listen to music, and my brain’s idea of logic was that somehow me being able to do those things makes me “bad”… Because of course, me feeling guilty over the things I enjoy will help other people feel better, you see. Sigh.

My succinct, “life lessons style of writing” was never something I planned to do, but the extremes of my life birthed it. What I’m going to try to do now, is to take my site back to old school journaling. If you like to read that type of thing, read it. If not, don’t. I’m still non-existent on e-mail and social media for right now. There are “good days” and “bad days,” good stretches and bad stretches.

“Needing to isolate has to do with us, the sufferers. Pushing you out of [life is a] way to have some control over what is going on… We can’t handle the shit going on with us when people are always present, adding little things to the swarm going on in our heads. Sometimes it’s just too much and having people around, especially the ones we really love, it adds to overload. We get feelings of insecurity, worthlessness, and don’t want to put that on others. Being in a relationship with someone with PTSD means understanding a sufferers need to isolate, and all the other shit that comes along with it.”

via user “silver.” on MyPTSD support forum

With a few exceptions, this level of distance from others has been the case for me basically all of 2016 and thus far this year, after a period of extreme acute stress in late 2015; the straw that broke the camel’s back and turned my solitude into survival. When I read that bit above, it’s spot-on about how the presence of people, even people we like, somehow adds “little things to the swarm” of mental overload. Just asking me a question can cause my thought process to short-circuit, but it’s impossible to describe why. I know how I feel inside, and what I think inside, but getting that across is another thing entirely. It reminds me of a certain interview with Whitney Dafoe before he became 100% bedbound, where he said he wished sometimes he could just be around his loved ones without them talking to him, if they could just let him be around them without actually interacting, he’d enjoy that very much. I enjoy that immensely, as well, but it’s nearly impossible to experience unless you’re with another Buddhist or on a silent retreat somewhere.

Last Spring I got to thinking I was just in a rut, so while having a good spurt, decided to force myself to socialize in the event it might help. But while I enjoyed myself at the time, it backfired spectacularly. Even that which I actually want to do, accumulates into a ticking time-bomb of how long I last before I need weeks of isolation to counteract it. This has been worsening for years, and after the flood… I just don’t know.

Louisiana Flood Damage Debris Pile, Before Pick-Up © a rainbow at night, 2016

It’s taken me years to realize that what I’m doing is a response to something else that’s happening internally, that I’m not just choosing to do this because I feel like being alone. I do enjoy being alone, and I will always make the best of things even if I can only tolerate my own company. As I read somewhere and found quite truthful, sometimes the fight to fit in becomes worse than the illness. But enjoying solitude is not the same as wanting to socialize and engage with your community, and care for the friendships you’ve cultivated, and in fact even knowing you need to socialize because isolation begets all sorts of awful things, but then being completely cognitively stunned by the first response you’re required to generate. I don’t know what’s happened, I don’t know why this is so much more difficult than other mental tasks or why it affects me so profoundly, but whatever this is, it is very clear to me now that it isn’t just some preference. And I have to stop beating myself up about it. I can’t be the only person who goes through this. In fact, I know I’m not.

The gist of it is: Sometimes interacting makes me worse, but sometimes I can handle it, and there is unfortunately zero difference in how it feels to me at the time, so absolutely no warning I can give if a disappearance is about to happen. It’s like trying to predict when my OCD or stuttering will suddenly worsen. Or like asking someone with RA or Lupus or MS when their next flare-up is due. It just doesn’t work that way.

Because of this, I’ve noticed it’s started to become self-perpetuated, also. There have been times when I wanted to finally reach out, only to then stop myself because I feared so much being unable to continue the momentum; that I’d just end up disappearing again. It’s my way of trying to minimize the damage of suddenly disappearing around people I thought I could keep contact with. I don’t want to hurt anyone, but this is all so unpredictable, so that feels inevitable. As one person said, “Who the hell wants to be around a touchy individual who tends to disappear off the map for reasons most people cannot fathom?”

© a rainbow at night

When I write this, and really look at it, I find compassion for myself in dealing with multiple, multiple diseases–of brain, of body, of thought–that make isolation my current reality. Being in stillness was, and can be, very therapeutic. I can find acceptance for where I am, and others tell me I’m some sort of inspiration for finding a way to enjoy life despite all of this, but I still end up thinking about my inability to be what others want, or need, or deserve. On top of it all, maybe I’m also grieving yet again for the loss of my former self, this time the person I used to be just a few years ago, who was able to engage with the world. Everyone I met, even strangers, would tell me that they could somehow feel my love for life when they were around me. And now…

More to say about my brain, so switching gears. Sort of.

Opportunistic infections are something I’ve been dealing with constantly since the flood. Skin infections, fungal infections, follicle infections, eye infections, repeated ear infections, repeated sinus infections, gastrointestinal infection from probiotics because I accidentally ate yogurt more than once… Then my seasonal winter relapse, followed immediately by a major health discovery that I’ll have to talk about on a different day.

Right now, I’m being worked up for multiple sclerosis, and/or increased intracranial pressure (aka intracranial hypertension), or both, or who knows what. Two doctors have confirmed my optic nerves are very pale and not getting adequate blood flow (suspected papilledema). My neurologist thinks this is because the pressure around my brain is.. well, pressing on things, and causing a significant amount of my symptoms. Yesterday I got a shit ton of bloodwork to make sure my kidneys can handle upcoming tests, then I’ll be getting another MRI with contrast, and an infrared-assisted lumbar puncture (spinal tap), both next week.

Much of the time I can literally feel a pressure in my eyes. Then with my ever-present headaches, the vision problems, worsening dizziness, tinnitus, and photosensitivity, alongside my significant changes in personality and cognitive decline, intracranial hypertension seems a given at this point. If confirmed, it will then boil down to why is it happening. There are endless suspects. I wonder if the IVIG may have either initiated this, or worsened something already in progress, because a lot of the changes I’ve experienced started immediately after that. Not that I’m complaining, because even if it did contribute to this, without the IVIG I would not have beaten the bartonellosis, or even be here to talk about this. I also wonder if the Lyme disease has any role, because while I haven’t had the symptoms I used to associate with it, these things currently happening are pretty much exactly what happens in late stage neuroborreliosis, which still, no ones knows whether or not is curable. You’d think it’d be as easy as checking for bacteria in my cerebrospinal fluid, but system-wide, borrelia prefer body tissue to hanging around in fluids where they’re more vulnerable. It’s almost impossible to tell what’s caused what, at this stage. And who knows, it may be something entirely new.

"I am scared. I'm scared that I don't know how many more good days I'll have. I'm scared of what this illness means, and I'm scared of what I know it can do to my life and my body. I'm scared that I'm not spending enough time with my family, I'm scared that I'm not telling the people that I love what I have to say and what they need to hear. I'm scared that I'm not living my life to its full potential. I'm scared that at any given moment my health could take a drastic turn in any direction that it wants to, and that it's out of my control. But no matter what happens to me, I know that my fears are because I care, my fears are because I still have good things in my life. I'm scared because things matter, so maybe it's not so bad after all." By @mrswelches

As for multiple sclerosis, I already meet all criteria for it, alongside a significant predisposition to developing it, so an official diagnosis could be imminent… But again I wonder how one would differentiate that from everything I already have going on? We shall see. But until the results are in, my IVIG infusions are on hold, because the possibility that an immune response to the blood product or a reaction to the intravenous fluids could worsen the pressure in my skull is too risky, not to mention getting others’ antibodies infused into me could alter my own test results. And “you have to do another spinal tap” is not something I ever want to hear.

I’m not going to say I’ll keep posting, because I’m not sure that I will, even if I want to. I won’t say I’ll try to get back to replying to comments and emails, because even though I want to, I’m not sure that will happen. I just know that I’m here, I’m posting right now after a huge effort to accomplish this, and despite 1000% evidence to the contrary, I still expect good things to happen in the future. Until next time…

Kit

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

[ estimated reading time: 2 minutes 24 seconds ]

I’m here to make another installment to my Life Lessons section, but this time, with the words of a guest blogger:

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 late Sara Douglas.

Fireflies, Coyote Arias and Friendships Adrift (via My CFS Life)

I’ve been struggling a lot again lately with feeling marooned. In my spirituality, I am increasingly aware that I am intended to live differently, and that it is both grace and blessing. That doesn’t make it easy – this feeling of being left behind.

As I stand here at the edge of my world, on my shore, friendships drift into the distance. Caught by other currents, destined for other ways of life and sailing for distant lands I can barely remember exist; they embrace lives I cannot have and for which I often ache. Ever greater expanses separate us and though their signal flares can sometimes yet be seen, I cannot quell all pangs of sadness as I stand with my feet planted in the shifting sands of my shore.

I look over my shoulder at this place where I stand, there is great beauty here and much to be discovered, but it comes at a price and I get so weary of paying. Sometimes supply ships come to my shore, my happiness to be among them mixed with challenge to my peace. They bring things I need and also tales of larger life that can be hard to hear, fanning the ember of longing into dangerous flame. One ship’s crew, a frequent visitor in the past, asked me how I manage here and when I said “I pray and God helps me” they left with laughter. Oh well, they asked and what was I to do, lie? I did not preach, only answered a simple truth.

Some of the ships arrive less and less frequently, more fulfilled at busier ports of call. Some, I suspect, will not return, and though difficult to accept – it may be for the best. I can do nothing to change it anyway. Read More

via My CFS Life