Certainly a life changer... I was diagnosed with Multiple Sclerosis
a few months ago (09/00), and it's definitely not a pleasant experience
. Knowing that somewhere in that lump they call your brain
there's several spots that just don't work properly anymore is a horrible experience. The physical aspect of the disease
can be easy to deal with.. Shit, I'm a lazy ass
anyway, so sitting in a chair all day is fine by me, but when it comes to losing my cognitive
abilities, that's where I draw the line. I've noticed quite a bit of change in the last few months. I have great difficulty thinking in a linear
way, I find myself going off on tangents
and then completely forgetting how I got there. I find myself losing periods of time very frequently.. I will "wake
" from something, which could be anything from just turning around to driving somewhere, and not know how I got there or what I was meant to do once I arrived. I am 23 years old, a former drug addict
college kid, and now they've told me I cannot live the decadent lifestyle
I was so accustomed to. So be it. I quit smoking
, quit using, quit drinking
. I've discovered now that these things were my only passion in life, and I need to discover something else which gives me meaning
Surprisingly, being sober for this period of time has not cleared my mind as the doctors and I thought it would. Apparently the disease has done much more damage than the drugs could have, and this is somewhat of a paradox to me. I expected that all the awful things that would happen to me would be a consequence of my self-abuse. This sprouted from nothing... Completely out of my control. Unimaginable. I was immortal. Twenty-three, no worries except what i had done to myself.
My immune system is attacking its own nervous system for some ungodly reason.
At any rate, it's not fun, and I wouldn't wish this state on anyone.
Also, they honestly have no idea what causes this disease. It could be an immune system disorder, which is how they're treating it in my case. It could also be caused by a viral infection at a young age (linked to the immune disorder theory). It may (although there is not enough evidence to support this) be hereditary.
Until you're diagnosed with it, you honestly cannot imagine how little they know about this disease. Ten years ago they said they would have told me to leave and come back if I went numb again. Great.
Update: (02.20.01) Walking is a challenge now.. I think it's called spasticity... My legs jerk about and I trip over my toes, which is a very odd sensation. In any case, it's progressing and that SUCKS ASSHOLE. :)
Update: (07.16.01) Seem to be in remission at this point - medication (Copaxone) is definitely helping out. Been working out, getting in better shape I hope. Seem to be getting better. Who knows though - I backslide every week or so and get drunk. Awful.
Update: (12.25.01) Merry Christmas everyone, btw. :) Doing well so far... Losing balance slowly but surely, but hasn't stopped me from doing what I need to do. I've somewhat come to terms with the drinking and only do so about once a month which is helping my health. It's amazing that I never noticed how draining smoking, drinking and drugging were on the body until now. Feeling good at any rate.
Update: (05.11.02) Wow, haven't updated in a while. I've stopped taking the Copaxone - not for any substantial reason, but just on a whim. I have severe brain fog at all times - I lose my train of thought very easily and find it extremely difficult to focus on anything. Cognitive problems seem to be rising... That's not cool. I'm having more problems walking, but not too bad. Still drinking regularly, and you should see my entry on Alcoholism for input on that one. In any case, thanks.
Update: (09.15.02) Started back on Copaxone a couple months ago. I long for death at this point. This disease has caused me more grief in the past few months than I could've imagined. It's not much more severe, but the symptoms come much more regularly. Personal relationships have become difficult as my mind and body aren't working together anymore... I walk into walls, I think in circles, I feel like there's a big empty space in my mind where certain thoughts and emotions used to be. It's a very interesting feeling sometimes and I wish I could somehow "record" these sensations and allow other people to experience them. In any case, I see the end coming soon as I don't think I can bear this any longer. I see others in wheelchairs and people with worse afflictions and I pray that I could become them. "Why wasn't I struck down and made unable to walk/think/whatever? Why am I allowed to walk around like a stumbling circus freak?" Well, fuck this. Fuck you - fuck your health, your sickness, fuck your ideals, fuck your life, fuck your religion, your gods, fuck your loves, your hates, your joys, your griefs... Psyche is breaking down and I can't stand it anymore.
Update: (02.09.03) Exacerbation last week. The left side of my back and left arm went completely numb over the course of a few days. I didn't go to the doctor initially since there's really nothing they can do but shoot me full of steroids. Last Wednesday I was forced to go since I couldn't sit at work any longer, and yes, I did get pumped full of (1 gram) Solu-medrol through I.V.. I'm just finishing a course of oral Prednisone and am feeling like hammered DOG SHIT. Shakey, unable to think clearly, exhausted yet horribly wired. Talking to people is very difficult as I have to start my sentences over several times before I get the words right. At least I can still type though. I want to shut down, pack up and move into a cool, dark hole in the ground. Leave me out of this shit - I want nothing to do with it. Bah. Just very out of it at this point. Still numb.
Update: (10.01.10) I had completely forgotten about this site and my writeup here, but randomly Googling about this morning I stumbled on Everything2 again and here I am.
I graduated from A&M in 2006, and in late 2007 was working long hours (12-14/day 7 days/week) in a very stressful position at a somewhat psychotic company. The stress pushed me into an exacerbation and I began using a cane to walk as I fell down several times in the office and had to out myself because people thought I was drunk. I hadn't told them about the MS since, well, it was none of their fucking business.
I was in management and thus was allowed to work from home if needed, but even that became difficult as my legs continued to shut down. I became horribly depressed and lethargic, unable to get out of my apartment as I had to go down a set of stairs to reach the sidewalk. I laid in bed watching episodes of Lost (torture) until finally the checks from work ran out along with my bank account and I was served an eviction notice.
A concerned friend called my family and they came in to assist in moving my things back to my home town. I've been here since and have gotten more and more disabled as time goes on. I now use a walker or forearm crutches to get around, sometimes a wheelchair if needed.
In August I went to San Diego to get scanned for CCSVI, the newest area of research in MS, suggesting a vascular connection to the disease. After the scans I lost vision in my remaining eye, and have more difficulty walking, thinking, talking, etc. I must have become more sensitive to the contrast dye, so I will not go back for the "treatment" as it involves injecting me with more dye.
I have accepted my fate and welcome the inevitable shut down of my body with open arms. I am not suicidal, but when death comes it will be the release I've waited all these years for.
If you know someone with MS, hug them, and tell them you love them. I am now alone all day, every day. I am an elderly man at 32, waiting to die in his home, family mere minutes away but alone nonetheless. People run from what they fear, and I am that fear.