Murphy’s Law And Disability: The Week From Hell
I don’t often write posts like this. Usually things have an activist slant. Or they’re more general. Or even when they deal with me personally, I’m writing it after I’ve already mostly figured it out and have some advice to offer. Normally I save stuff where I’ve got no clue and I’m reeling for dreamwidth (and other venues that I talk about personal things at).
But sometimes, those small, insular zones aren’t really enough. Sometimes something ridiculous happens and you have the widen the net because now you need advice, or support or just knowing someone else is going through the same thing. Because now you’re grasping and scared and you feel completely screwed. It’s one of those times for me now.
It’s been a rough week.
Some background for the uninitiated. I am a poly individual in a V shape relationship. I’m on one of the V ends. My partner (a nonbinary trans person, hence the pronoun “they”) is the V tip. The other part of the V is long distance and has been somewhat hard to contact lately (nothing I’m going into detail on or even know enough to speak on, that’s their business.) so it’s just been us two handling life lately. My partner and I, we both have disabilities in different zones. I have fairly severe Attention Deficit Disorder, steadily worsening problems with badly fallen arches, semi chronic back pain (possibly caused by this arches, the doctors, back when I could afford them were somewhat clueless on the cause of my back problems), past trauma that impacts my mental state (no clue if I have PTSD or something similar), possible Seasonal Affective Disorder (and no money for a sunlamp) and I have been getting consistently more frequent serious migraines (yanno, the kind that literally put you out of commission for 6 hours and have auras the day before that put one fairly close to out of commission). My bodily dissonance as a trans woman isn’t something I’d call a disability, but it certainly drops an extra bit of fuckery on top of the pile. My partner has a massive chronic pain thing going on (diagnosed fibro but it might be Ehlers-Danlos syndrome instead), they have schizotypal personality disorder (with the psychosis component), trigger finger, IBS (like mine), lactose intolerance and also may be dealing with something akin to PTSD (as well as migraines here and there). They’ve also got bodily dissonance that fluxes and changes. I’m not going into as much detail for them because I don’t experience things on their end and I’m not the best to talk about what they go through.
Normally, we get by. We get by pretty well. Provided we stick with the diet restrictions, usually we just switch off when one is a bit more able to get things done than the other. Chores basically go to whomever is in less pain at the time, or in less of a bad mental state or who can actually do them reliably without issue (like me defocusing and being unable to even read a recipe because I can’t keep on it). Usually even when the chronic shit we deal with is flaring the other one is just dealing with the baseline of the chronic shit for them, and the other disabilities coming up are all spread out over time.
Not this week though.
This week was the perfect storm of flare ups, semi chronic appearances and stress induced aggravations of all of the various things we deal with on a regular basis. While my partner fought off a pain flare, struggling just to walk, I was nailed with a “Richter 7″ migraine. Auras the day before so severe (nausea, nearly threw up in the supermarket, disorientation, hallucinations, shakiness and weakness) that they rivaled the loss of functionality I faced when the full tilt migraine hit (I couldn’t even operate a phone or make coherent sentences the pain was so intense) the next day, heralded by my more normal blind spots and colored swirl vision aura. The hits did not stop. Each of us got these coordinated flare ups that all happened at the absolute worst possible time that just drained us of even more of the already tiny reserves of spoons we both had left. For the first time in my life, I actually had to drag a chair into the kitchenette area to cook because I couldn’t stay standing for long enough to do anything to make a meal, before the migraine pitched me over from the pain. My partner had to clean dishes with heavy bursts of pain from trigger finger and the EDS/fibro all over because I couldn’t stop crying and shaking when I tried to do them myself (the seasonal depression has seriously wrecked me this week, I’m not sure how I’m gonna get through winter classes when they start).
And those were just the things that we dragged ourselves painfully to finish. Endurance resources ran out more often than not and shit just didn’t get done. Dishes piled high, meals were delayed as long as possible because neither of us could manage to make them and neither of us would allow the other one to put themselves through the ridiculous pain, misery and/or trial by fire to make food. Health vetos weren’t terribly useful since we were both doing so badly that the other could easily make a case to veto the first’s self sacrificial attempt to protect the second’s health and so on. The worst part of all this was how, pushing ourselves way past the point that we ever should, just cuz these things needed to get done, meant that we burned out quickly, had to rest or fell apart and then the other one would have to take up the torch and do the exact same thing. The shit cycle only really ended today (mostly, as in today was when my partner health vetoed my washing the dishes because I started crying uncontrollably in the middle of doing so) or at the least, has lowered in its fucked oscillations enough that we can both breathe a little again and maybe take some time to recover.
Things like this, where Murphy’s Law plays havoc on our lives with our disabilities, really really stresses the hell out of me. Times like this where we’re both in so much pain that neither of us have the spoons to comfort or help the other are times when the frustration with my own disabilities mounts to its highest point. I hate that someone I love is in pain and I can’t even hold them or hug them because moving makes me feel like I’m gonna throw up and that my head is in a vice, and if that blindfold falls off, light will slice into my eyes like daggers so I can’t even see them to hug them. I hate that they feel guilty and broken (similar to how I feel) due to their own pain and disabilities because I’m hurting and they hate watching me hurt when they can’t help. It’s a whole other kind of pain, different from the unrelenting headcrush of a migraine, the dull ache of depression, (presumably different from) the slashing pain of joints falling apart or the stress of not being able to walk and wondering if this flare is a sign of more permanent loss of mobility. Sitting on the chair, horrified, wondering if it was going to be a permanent fixture for cooking still doesn’t compare to watching someone I love hold me in their arms, trying to comfort me, while tears of pain are in the corners of their eyes from their own disabilities. I imagine it’s much the same for them when I try to hold back those tears of pain while holding them close.
Times like this drain me. They drain me so deeply and completely. And they are not rare. Not common but still not rare. I wish they would never happen at all. It’s hard knowing too, that a lot of people will read this post and go, “good god, that’s awful, I can’t imagine being in that situation” and being completely unable to relate. These people don’t realize or don’t grasp that this is our life. That sometimes you just want to curl in a corner and disappear because it’s so goddamn hard and you have no idea how you’re gonna get through the next hour. That sometimes you have to only think to the next task that you have to finish because if you think about how many things lie between you and getting home where you can collapse and finally rest (like a car ride, it’s terrifying hell on earth driving while in a major migraine aura), you’ll never be able to finish anything and will never get home. That sometimes you grit your teeth through the pain, wipe away the tears and do something that’ll take a few days to recover from, because someone you love would go through the same horrible thing if you didn’t do those things.
That is life for us. That’s what we deal with. Sometimes it’s as bad as this. Other times it’s easier. But through it all, especially during times like this, I really have to wonder how the hell I live through it. How anyone does. Because I know there’s other folk out there experiencing the same or worse.
Sometimes I just need someone to tell me it’ll all be okay, even when we know that it’s anything but.
Writing this is cleansing though. Letting it all out. My frustration, my stupid really wrong self loathing for not being able to handle this stuff better, how draining these perfect storms and Murphy’s Law explodefests are. I needed to get this out. Needed to tell someone, anyone that yeah, sometimes it’s all way too much and we survive by pure will, luck and just fighting for every goddamn step towards getting a break. And yeah, that’s not some unusual, abnormal tragedy. That’s life for me with disabilities in a relationship where you both have disabilities. Just needed to get it out.
I’m gonna go lay down now and try to recover a little more.
Filed under: personal | 10 Comments
Tags: disability, family, medical, PWD, relationships