Musings on Chronic Illness and Disability

One year ago I was paralyzed by pain and severe sickness. I was in the throes of a severe status migraine a day in and day out 8-10 on the pain scale. I also had persistent aura, and my migraine associated vertigo was off the charts due to damage to my vestibular system by Meniere’s.

I absolutely could not work. Even if I had begged and bought a letter from a doctor stating I could return, my employer would not have accepted it (and I still work for them!). I was a liability. I couldn’t even cross the street by myself, I could not drive, at times I couldn’t make it across my own tiny townhouse.

I had no issues getting short term disability that spring, my long term benefits were only delayed by an incompetent medical records department. Once all my records were at the office of my disability insurer I was approved within a week.

This time last year I could not even type. I could not track this much with my eyes, and between the severe pain and persistent aura I had developed ataxia. I am an excellent typist, hell, I’m a programmer. I can type with my eyes closed. However, with the ataxia my fingers simply couldn’t do it. My fingers kept randomly hitting keys.

This time last year I was a ghost.

What I think a lot of people don’t understand is that when I returned to work I wasn’t all better. I wasn’t even close. My pain scores frequently peaked at an 8, with 9s thrown in here and there. The lowest my pain tended to get was a 5. I had retrained my balance through practicing walking throughout the months of November and December. In December I was instructed to not drive at all, but on the “good” days I did anyways just for practice and a taste of independence.

I still had vertigo with my auras which happened pretty much daily. Though I had stopped falling. I don’t think I have ever grinned as wide as I did at my second botox appointment in March when I was asked if I had any falls in the past 30 days and I got to say no.

Though I was still very very sick, and I still am. I don’t have to work, I could meet the disability criteria easily. I choose to work. I want to work for as long as I can.

With chronic illness I frequently ask myself when I will cry Uncle. Hopefully nothing new will go wrong with my body so when it does happen it will be me deciding that a condition that I have has gone far enough. In many of the potential scenarios I won’t be given the choice my Meniere’s could go supernova and stop responding to treatment. I could develop another intractable medically dangerous status migraine.

Or, I might just be suffering too much. That is the one that scares me, since it’s a line I don’t understand. I can tolerate pain, most of the time I can tolerate the severe fatigue, but there may come a day when I should stop and I won’t. Or I should stop, and I do, and I can’t get over the guilt.

So much of that comes from growing up sick. I always had to make it to my next destination despite whatever hell my body was putting me through. I’ve always taken that to extremes because suffering a lot was worth it, and no matter what I’d be suffering anyways.

For christ’s sake I took my SATs with a severe migraine cupping my left eye and that side of my head with my hand, and was sitting in a pool of my own blood, like there was a puddle under the chair too. Which met I was also doubled over with severe Endometriosis cramps. I got a 1280. When partway through section 1 my left eye became useless and the pain was crushing and screaming through my head and my abdomen it never struck me that I should stop. That I should call my parents and go home, because this sort of thing happened ALL the time.

The only difference was since I was at the SATs at a different school and couldn’t bring anything with me was that I had no way to deal with the blood. My regular teachers new the look of urgency and an impending biohazard and I would be excused so I could limp to the bathroom and deal with the carnage.

I have gotten to where I am now through brute force, and never paying the tab. I don’t regret it for a moment, but at this point I can’t push things as far.

I wanted to cry when I got home this evening and a friend was over, and then I was thankful I was laughing, getting a few borrowed moments to have joy. I wanted to cry again when my boyfriend said to me I was allowed to be a mess when I got home. That I got what needed to be done, done. If we want to use the spoon currency I am often in the negative when I’m getting home from work. A few hours of listlessness laying on the couch buys me the half spoon I need to take my medication and eat something.

And right now I am as good as I get.

My body reminds me daily that this isn’t likely a long term solution. I hope for a couple of years doing what I’m currently doing, and then I just won’t be able to anymore. I can savor the small things then.

My entire life I have been bartering with my body, and making it do things it doesn’t want to do. I’ve allowed myself a higher amount of suffering to have a career. It will in the end likely be a star that burned to brightly, but then burned out. Though I don’t care, at least I got that star into the sky.

We tend to shy away from pain, we are biologically programmed to avoid pain. However, I will be in pain anyways, so I prefer to fight against the dying of the light.

It is unlikely I will retire with gray hair after a 40 year career, but I want to extend the one I have for as long as I can. I am ok with losing so long as I fought for something.

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