I never expected to keep writing about all this, but I got some good responses and quite honestly, it was pretty therapeutic, so i'll keep going.
So it's a random weekday and I was lying in bed around one in the afternoon, fatigued and with much of my right side numb. I know my dog is laying next to me, but I can't physically feel him. As I laid there, I started thinking that this wasn't what was supposed to happen in my life, was it? I'd attended lots of fantastic schools and done well and gone far in my career. I look back on life and I was super successful, at just about everything. If you were a person who maybe didn't catch a lot of breaks, you might have hated me. The thing is, I maintained all that even after getting MS, for a long time anyway. Sure, I'd have a relapse and miss some time from work and life but at the end of it, I'd be right back where I was. Sure, I was sick and i'd have some issues, but everything was still great.
Great until a little over a year ago, well, maybe a little more then that. Up until that point, when I had issues, they were all physical and all left just as they'd come. When I'd started my most recent job, I started noticing some issues. Cognitive issues. I didn't pay to much attention to them though. To me, it was the least technically advanced place I had worked, so it wasn't much of an issue. I'd say I was probably only about 60% of myself from a cognitive standpoint my entire time there. I had a lot of trouble remembering and using much of what I'd learned over the years but because of where I was, it didn't matter. Then one week, everything went to hell. Trouble walking, talking, typing, seeing, and lots of problems with my memory. I went into my boss and told him of the problems. I called in a few coworkers as well, to explain. They admitted that suddenly I hadn't seemed myself, things I had written recently, in no way looked like they were written by me. So i went home thinking this was a short relapse and I'd be back in the game soon. That was over a year ago.
A lot changes in a year, in that time, I went from successful Devin living in his own house, with a car, and having a great job to renting out the house and not really having a home of my own, to being not allowed to drive, and also not being allowed to work. I am on disability, social security disability. I was denied the long term plan I'd been paying into because of the good old pre-existing condition clause. I'm lucky to be at the high end of what this disability will pay but trust me, it's nothing like what I use to earn as a high level software engineer with ages of experience. All the times I bitched about work in my life, man, I take them all back. I'd kill to be able to sit at my desk and work again.
Reading copies of what the various doctors, physical therapists, and god knows who else submitted to disability is downright depressing. Even if you already know all of it, seeing it in writing is harsh. I'd heard countless stories from others with MS about how hard it is to get SS disability. That it was not geared to this disease. Most people have to reapply three times and even be seen by a judge. So it was also disheartening to me to get approved on the first try. Thankful yes but disheartening. Like not only are you a mess, you're really a mess bro!
So that is life now, and it's not at all where I expected to be. This will all be temporary, I hope. The good news is that since Ive started my current medication, I don't think i've gotten and worse. I haven't gotten any better either, but the point of the drug is to stop things from progressing, not cure them. Even if I don't get back to where I was, I know I'll adapt and still carve out a good life. Maybe even a better life then I would have because I'll have had some real life forming experiences. I still hope to even have a family some day, I think i've got lots of good knowledge to drop on some kids. Whatever happens, I'll still be successful, it's just that my definition of success has changed.
sorry for any rambling, i needed to stop and lay down twice while writing that.
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