June 13, 2010

So, how does one know? Work and MS...

I've fought hard, filled out many forms, suffered life-threatening papercuts, and taken on the role of a disabled, can't work person.
Always, in the back of my mind, despite blinding fatigue, pain, leg spasms, cog fog, etc., I've felt a bit of a fraud.  After all, I don't need a cane all the time. I'm not confused all the time. I don't sleep ALL the time (though it often feels that way). I've only had maybe three flare-ups in the past 6 months.
So I commit to volunteer things, needing a purpose.  And then I often can't do them thanks to the fatigue...
But would I be able to do them for pay? That's the question. Or would I swiftly descend into the mad state I was in before leaving work, where, exhausted and stressed from trying to cope, I became hyperemotional and inappropriate?
Of course, there were issues there.  One was an employee, a doctor, who abused me every day, verbally. He even sent his patients in to abuse me. The ones that survived his care.  He was a rotten doctor and a bitter man, and he made my head spin with all that he pulled.  I wanted to fire him. But who fires a doctor, when they are scarce? Add a stressful job and high expectations by myself and my boss, and life was pretty tense.
Could I survive a "regular" job? Could I even get a regular job, after being off for a year on LTD? Would I endanger my LTD by trying?
My head is spinning.
I can't help but think that some people manage to work on less brain power than I have on an average day, even with my MS. And the constant pain I have - well, it's been around for years. I'm used to it, and it's only occasionally it grabs me by the gut and makes me cry out. The fatigue?  Well, there ARE meds for that.
But MS is a progressive disease. I've already noticed that my legs are much more spastic than they were a year, two years ago. They cramp when I stretch 'em, and I don't like walking, though I wish I could. It scares me to head out when I know the return journey will likely be pain laden and torturous.
But should I live my life afraid of what may happen?  Or should I push through and devil take the hindmost?
I have a neuro appointment in 2 weeks to evaluate my latest MRI, which I hope will give some explanation as to the increasing spasms in my legs and numbness in my nethers. I'd like to say I may get some guidance there, but I dunno. Neurologists aren't the cuddly type, and will likely not have much to contribute.


Muffie said...

I haven't been part of the work force for two years, and I still get the thoughts you express. I question myself daily -- could I work again? Would I be able to handle a job that may not be as demanding (I was a school principal)? Would anyone really hire me once they see the disability? I struggle with these issues all the time, and my neuro merely says, "Well, if you feel up to it..."
Hope you get some answers.

Walter Busse said...

IMHO, the vast majority of working people survive on about half the brain power you've displayed in my presence.
But brain power does not constitute emotional strength, else I would have slain my personal dragons a long time ago. Make the best decision you can with the data at hand, and I and a number of others will cheer you on.
Sorry, I know you wanted an answer. This encouragement crap is the best I can do. : )

Have Myelin? said...

I have the same exact thoughts every day and it makes me so tired, I end up taking a nap.

You are right, most working people use half the brain power you've got. (including Congress, LOL)

See...typing that out required thinking so now I need a nap! LOL.