Tuesday, December 8, 2009

A wedding.......but still in bed the rest of the time

The wedding and related festivities were wonderful. Luckily, my body cooperated when it had to. Of course, we knew not to expect very much of it. We even had a pillow so I could lie on the floor at the restaurant.

Since then, my body has continued on low. I often wear the same pajamas for 5 days straight. I only leave the house about once a week (and even that seems like way too much). I spend basically all of my time in bed or on the couch. My body is really failing. I'm just grateful for days that the pain stays at a 7 or below. But many days, it goes higher.

It's hard to really comprehend how long I've been sick. Luckily, I'm too sick and tired to really think about all of the lost time. Still, looking back, it seems that my functioning has decreased a lot this year, meaning I was more functional before. It's hard to even remember that time. Time goes by so very slowly. That's why the wait for surgery (hopefully this spring) is so difficult.

I would write more, but there hasn't been much to say. My only medical update is: STILL WAITING!

I still have the constant headache and constant joint pain, both of which get worse when I try to get out of bed. The fatigue varies in intensity from day to day, but is still ever-present. I also have extra headaches, that feel like pressure in the head or sometimes ice-picks digging into my skull.

A frequent symptom bothering me lately is severe hypersensitivity. This is when my skin is so sensitive that my clothes hurt. My body feels too hot and too cold all at once. And I can't get comfortable no matter what I do. I also feel that my spine is being compressed like an accordion. When I feel like this, the only option is sedation. Any other existence is unbearable.

My mom was away today, so my grandparents came to spend time with me, which was really nice, even though, as always, I provide no entertainment. This bed-bound life is very boring. Especially when even talking takes too much energy.

The only reason I have the energy to type right now is that it's late at night. Computer usage is now limited to high-energy times. That's how low it's gotten.

Okay, headache is an 8.5 tonight. OUCH. I haven't been sleeping well, but I guess I'll try. If nothing else, the room will be dark and silent...just the way I like it.