Wednesday, August 22, 2012

Why I don't work (a traditional job)

Now this is a subject persons with MS don't like to talk about. If they do, it is definitely not a comfortable one. In my case, sad but true, I left the "workforce" at age 42. One day I could keep up and work and the next day I could not.

How does this happen?? It happened quickly in my experience. Please remember that so many of us have huge anxieties that accompany everything else going on, i.e. symptoms, confusion, changes etc. etc. So keeping this in mind this is basically what happened. 

I was at a point in my life when I thought I  could overcome all the adversity. I worked in a bookstore during a period when I had not yet gone to graduate school in 2001. This was also when I was on the interferon therapy. The bookstore was calm and actually fun. I could stand for long periods, ring up sales, answer the phone and look up books on the computer -- sometimes simultaneously. Normal? At that point I thought so. 

Small changes happened, not all noticeable and not all big.

Then a job with an attorney for almost five and a half years. I wonder if things would have been different in a more pressured work environment. Her office was chaotic but small and manageable. I was given enough "space" to think about my life after working there.

 I was still on interferon treatment. Had a list of side effects that kept growing.

Next, I found what I thought would be a life long career -- occupational therapy. I was an excited 35 year old. Of course I would work with persons with disabilities -- probably anticipating my own physical disability to come. I didn't just decide to go to a university in my state or somewhere nearby, I went all the way to St. Louis. There it was hot, very hot. We all know that MS and heat do not mix.

I continued interferon treatment which became harder and harder. My blood pressure kept rising but I kept taking medication. So now I was very anxious and medicated with something that caused serious side effects plus blood pressure medication side effects. The MS was continuing at its own pace. Here I was in a new place, with stars in my eyes and an extremely hard curriculum to add to the mix. I finished my clinical work three years after most other people in my class had. I finally got my master's in a field that I never practiced.

I was a mess. At that point I honestly couldn't even think. I tried working at another job, got away from occupational therapy and could not hold my own. I even used my scooter to conserve my energy which caused other problems. I was always "in the way".  I started making mistakes -- big ones. If someone distracted me I could not return to what I was doing. I started having concentration problems, easily distracted, problems shifting my tasks  and of course, always anxious. Employers don't have patience for this sort of thing, no matter how much we plead Americans with Disabilities Act (ADA)! You are quietly eliminated -- as was I.

Cognition or thinking skills are always affected in someone with MS. Even though verbal fluency is most often not affected. Now how cruel is that when you can't always function in given situations but you can out-talk someone or seem really smart?

So, now with the physical challenges and mental challenges in certain environments, I have resorted to doing things I enjoy without outside pressure. I use my occupational therapy education to make my own life easier -- chosen my own adaptive equipment, energy conservation tips and tricks, needs regarding accessibility, educate others about this debacle called MS etc.

I have not been on interferon since 2005 and do not battle side effects along with my other battles. Actually, I feel quite well now. Life is slower, more to my liking and definitely more my own pace. I stay in shape, watch my diet -- strictly low fat without processed anything. No heavy medications. Anxiety is built in to most of us with and without MS but I know that and deal with it as best as I can.

One thing from my occupational therapy education that I remember very well is that human occupation is not only about working a "traditional" job it is also your everyday roles. I am a daughter, partner, sister, aunt -- these are also my "occupations" and therefore as important as working what others call a "real" job!

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