Wednesday, September 16, 2009

Musings of the day..

I'm not sure how I feel today.

In the past I've realized that by the last dosage of the solumedrol I'm usually feeling pretty good. That's not the case this time. I've come to the realization that some of these symptoms might be for the long term. This scares me.

I've come to acknowledge the fact that if these symptoms are now permanent for the rest of my life I will be forced to change my life in so many ways. I know that working might not be an option since the high doses of medication I'm on just to get me through the day make me so dizzy and hazy I'm no good to anyone (you should have seen me trying to do my homework earlier). I know that I will become a burden on everyone I love and hold dear. I may never be able to drive again, which, I can't even fathom that right now without feeling this horrible ache inside my stomach. I have to get real with myself. I've been in denial for so long and all it got me was a stiff wake-up call and a tumble in the office earlier where I couldn't get up without almost breaking something. I have to face the facts. I have MS, and it's a progressive disease and the fact that this is my second flare-up in a year is an indication that something is NOT right in my life. I just have to figure out what that is!

I'm stuck on the couch for right now. I really scared myself earlier when I fell and there was no one here to help me up. When I went to stand my legs were awkward and in the wrong position and I could have broken something, where would that have left me? I would have been stuck there, in pain (if I even felt it), on the floor, waiting for someone to notice that I didn't answer a phone call or I didn't answer an incoming text. This is my reality. This is something I have to come to terms with.

I'm not used to depending on other people. It's killing me. I have this urge to pick up and straighten up around here but every time I stand my legs sway and I'm forced back down into my seat. I can't deal with this. I never pictured at 26 I would be contemplating going out on disability, permanently, and looking into getting a Help Link System installed in my home (thankfully because Kel works for the company they said we could have it for free). I'm torn. I feel if I go out on disability I will forgo so much and Kel and I will have to scrape by for the rest of our lives. That's not fair. I also feel if I do that then there will be so many people who will be disappointed with me. You have to earn a living, you shouldn't live off the system. I don't want to be one of these fat lazy slobs sitting home on disability with no hopes for the future and no real indication of what they want to do with their life. This wasn't the plan. There is a monkey wrench shoved into the middle of it and I need to come up with an alternative solution.

There are two things I know for certain: I have to get counseling and I have to have a serious sit-down with someone who knows all about the way disability works and weigh all my options. As I said, there is a true chance here that I may never fully recover use of my legs, or they may surprise me but either way, I HAVE to be prepared! I wish there was a chance I could work from home, this way I could sit in my living room, a few feet from the bathroom and type, type, type in the comfort of my own Pjs and still be an asset to the company. If only, if only, it were that simple!

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