I am leery of seeing EDS as a factor in everything. It’s an easy excuse that I don’t like employing. My genetic make-up has to form an integral part of my identity and I cannot see it as an external force that changes me in ways that I don’t want to change whether I want to or not. But when is it an excuse and when is it a factor and if it does play a role and I ignore it because I don’t want to make excuses, am I doing myself an favours? I think not.
Summer is the most difficult part of the year. I have allergies with the constant itching and sneezing which leads to eye rubbing which in turn subluxes eye lenses that are painless but very annoying as I can’t see usually for hours at at time and comes with the fear and risk of complications occurring. I’ve suffered temporary blindness as part of a migraine aura and I’d really like to not have it be permanent. It’s a rather frightening thought, multiplying an hour of dark into a lifetime of darkness. Sneezing inevitable leads to posterior nosebleeds that won’t stop bleeding until I’m throwing up blood and am dehydrated enough to start fainting whenever I stand up. Allergies and asthma ruins my breathing despite new meds and when I start coughing up pink frothy milkshake blood it’s the pain from dislocating my ribs in the process that really gets to me. Headaches become chronic and the trippy auras are scary, exhausting and claws at my resolve to stay calm and focused which is inevitably shattered when the headache from hell arrives and drives me crazy pretty quickly whilst I’m constantly throwing up until I’m just throwing up blood and lying on the bathroom floor sweaty and clammy and too exhausted to be worried any more. I get less than an hour’s sleep at a time and less than 3 a day and after weeks of insomnia I start to hallucinate, but at least that is not as scary as it once was now that I know it’s just sleep deprivation. And after a concussion, I sleep half-the day, trapped in nightmarish dreams that are part phantom and part-truth and sleeping is suddenly scarier than being awake.
My autonomic system goes haywire. Blood vessels dilate, my blood pressure plummets and my pulse is constantly hovering somewhere above 150 as my heart that doesn’t work as well as it should tries to increase the pressure by beating faster. I reside on an adrenaline high that’s like an eternal panic attack and no amount of deep breathing can make it stop as it’s physiological and I can’t think my blood volume higher or my veins smaller. I get dizzy alot. I try to remember to sit up slowly and stand up even slower but I don’t always remember and then it’s black and I wake up on the floor wondering what just happened. I bump into and break things more often than usual and am covered in large and rather painful bruises and fresh ones are added before old ones heal and so I wear jeans and long sleeves and polo-neck T-shirts when we go out so people don’t think funny thoughts. Between the walking into things and fainting spells, joints crumble and are more out of line than in. We run out of ice-packs despite having a freezer full because I’m dislocating half a dozen joints usually more than once every day and I’ve given up on not trying to walk on sprained ankles as the crutches turns my wrists, elbows and shoulders into mush and limiting damage seems like a good idea.Throwing up is bad for unstable jaws and dislocating your TMJ doesn’t help the headaches. Talking is difficult as my jaw hurts enough to make shaping words painful, my voice is hoarse and disappears at times and my throat is raw and starts bleeding again if I talk in long sentences and so I talk less.
My hearing deteriorates more than usual and I begin to turn on subtitles and relish watching foreign films and only use vent for raiding and only when Chris is raiding too so that he can recap and translate when I miss things. APD combined with some other hearing issues makes communication through anything other than text hard work and incredibly stressful. I live with my iPod glued to my ears which tend to give me rather horrendous earaches, but at least the sound abates the constant ringing and wooshing noise that gives me headaches and I can’t turn off because its in my head. Also, people tend to not try and talk to me which is much easier than trying to explain that I really have no idea what they’re trying to say and frankly, I’m cranky and couldn’t care less. It begins to feel as if the world is drifting further and further away from me as my eyes don’t work and my ears don’t work and my brain turns to mush and pain is like a constant wave washing over me turning everything upside down.
It’s the neurological symptoms that hurt the most though. Two weeks, three seizures and a couple of concussions later and my head is no longer where it should be. I’m inappropriately emotional. Chris asks me what I’d like from the supermarket and within minutes I’m curled up in a corner sobbing uncontrollable and inconsolable because I don’t know, I can’t remember, but I know enough to know that not being able to compile a shopping list of five items is a very big deal. I can’t concentrate, I keep zoning out into blank stares and ask the same questions over and over not realizing I’ve asked it before. I go round and round in logical loops and can’t seem to find a way out of the confusing emotional mesh that trapped me. I do know that it’s all very unlike me. Or is it? Have I become some overly emotional, illogical, lost thing that struggle helplessly in a trap? I try to think it through, figure it out, but the more I think the more confusing everything gets and the web gets woven thicker and thicker and I simply make it worse and worse.
I don’t like considering EDS stuff as a factor. I try to compartmentalize, shut all this into a closet in the back of my head and continue to do what I normally do. Being sick isn’t an excuse for erratic behaviour and emotional meltdowns. After weeks of pushing it to the back and ignoring it I was wide awake in the early morning hours thinking yet again ‘what the hell is wrong with me?’. It occurred that maybe leaving all of the above out of the picture because I shouldn’t let it affect me was not the smartest of things to do. It was 4 a.m and I was on the bathroom floor. Again. I had a nosebleed, again, that wouldn’t stop bleeding. I was throwing up blood for the third time that day and it’s sad and disgusting when you start to think ‘now is that the blood I just swallowed, is it from bleeding ulcers or is that a bit of my stomach?’ and then the breathing issues start and I cough up frothy strawberry milkshake blood and I think now that I know is from my lungs. The steady pulsing pain of a headache was present with a familiar throbbing, my pulse was racing, palms sweaty and my chest was starting to feel raw on the outside as my ribs were subluxing every time my chest muscles moved just a little. In between the bleeding I was putting sliding joints back – hip, SIJ, knees, ankles, shoulder, wrist, finger, neck, jaw and when my clavicle decided to dislocate completely when I pushed too hard on my shoulder, my resolve broke.
I can’t do the happy optimism, I can’t do the quiet contentment, I can’t be the person I’d like to be – all calm, collected and controlled all the time. I’m still angry because life isn’t fair and although I never thought it was or expected it to be, it’s not fair that I don’t get to be me all the time. I try to live most of my life despite being unwell and I work very hard not to have my life become all about what I’m not and what I can’t do, but two months into summer I’m too tired to try anymore. The cobwebs that are spinning traps with my thoughts and emotions aren’t of my own making. I have to find a way to live with it or despite it or past it, but I’m not a basket case because I’m being self-destructive, I’m a mess because the biochemistry in my brain got a little scrambled and it’s hard to find the balance afterwards.
Once I stop trying to overcome the obstacles as bravely as I feel I should, I realize that the Albert Camus quote “In the depth of winter I finally learned that there was in me an invincible summer” is still one of my favourites. I am so scared that I am not strong enough or brave enough or smart enough or resourceful enough to be able to create a happy and full life despite constant crises and setbacks that I try harder than I should to make everything work, sometimes in ways they were never intended to work. I try to be in control so much that I loose sight of the fact that control is not about controlling external forces, it’s about controlling how I feel and act. I will never have control over what happens to me, I will never be able to stop bad things from happening, but if I can crawl back to bed at sunrise and fall asleep contently whilst listening to Chris and the cat breathe after the desolate night I had just had, then all is well. In the end, there’s just the letting go.