Wednesday, June 9, 2010

Different and the same

I'm returning to work post-shoulder surgery. I started half-time from home, then the last 2 weeks half time going into work for 2 of the days. Next week I'm back full-time. I think it's scary somehow - how am I going to do that? My feet are swollen and I spend a good bit of each day sticking them up in the air. Going to work takes a lot of work for me, and I'm used to returning home exhausted. At work I have a routine where I get up at least 5 times a day and "walk the Beth" - so I walk with my walker. Earlier this week I was at work wondering how I was going to do that - perhaps not quite ready. It could be something is happening with my MS right now - strange things are happening with my legs and I'm tired.

Today I sent a quick email to a friend who works in another building, just to say hi. We both have disabilities, but we never talk about those. We always greet each other with smiles. We have fooled even each other into thinking we're always the happiest people on earth!

His email back to me was that work was ok. But (this goes with his disability which is something with a malformed ankle/foot) every step he takes when walking is very painful. I shared with him I had surgery. He then went further because he has had multiple surgeries. He said that when he gets home at night, he is totally exhausted. Unfortunately, he lives alone and doesn't have the support system that I do. But - the same - we are both totally exhausted, in a large part due to our disabilities. And going through the day, if we see each other, we smile like there is no exhaustion! We save it for home.

Next week (good timing Beth - do this right when going back to work), I'm on a panel at a Traumatic Brain Injury (TBI) conference on employment. We have this set of general questions on working with a disability, and I'm trying to think of what to say. Now why is someone with MS on a panel for TBI? There's crossover - fatigue is huge. Wow - it seems it's huge across the board for disability. I talked with someone just before my surgery who was a co-presenter with me for something else on employment for people with disabilities. And we started talking about ... fatigue!

I'm going to be sharing my experiences of employment. I want to encourage, but I want to be honest. Right now, although I can be busy, I'm in a great spot. I'm respected. But it hasn't always been like this. I've experienced discrimination at work. Tell someone I have MS and it opens a whole big can of worms. Assumptions are made that my brain doesn't work. Fatigue is totally missed - it's not discussed. I say I'm tired and the other person says they are too. I get that. Everyone is tired. I'm REALLY tired - I hope I make it through the day. I may be calling my doctor that day because I am tired from MS attacking my body and I'm about to go on steroids. Or it could be a bad day. The other person doesn't know.

What I learned today was that fatigue may be the biggest thing in common for people with disabilities. If each step causes my friend pain, that's exhausting. If another friend with a spinal cord injury has to go on an extra errand, getting the wheelchair in and out of the car causes fatigue. And for me, it's MS underlying almost anything I do that causes fatigue.

And how do we get through this? I suppose it's different for everyone, but maybe I should ask, because maybe it's similar. For me a big part of it is faith. This is hard to explain, so perhaps I'll just leave it there. I believe I am helped in good or bad times, by the presence of God.

Thanks be to God for being there as those of us with different disabilities can learn that in some ways, we are the same.

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