I feel like I've been a total whine baby lately. So I would like to take this moment to apologize, especially to my co-workers. I try extremely hard to not whine about my symptoms, but sometimes they definitely get the better of me. This week has been one of those weeks for sure. Typically, unless you are my husband, you won't see me cry or hear me moan and complain about having MS. I do sometimes (like today) use this blog as a way to vent, but even this is pretty rare.
To be honest, my husband would probably say that I don't really cry or bitch to him either, but he knows me well enough to know when I'm feeling scared or sad or just frustrated about life with MS. The problem is that I just say "My leg hurts" or "I'm exhausted today". What I don't say is that after I have worked, taken care of Mason, cooked dinner, cleaned up after dinner, done the dishes, packed Mason's lunch for tomorrow, etc. I barely have the energy in my legs to fell like I can walk downstairs to play with Mason until bath and bed time. Sometimes it really feels like my legs won't carry me anymore. These are the things I don't say, mainly because a) what good does it do and b) no one really understands anyway.
So, yea, I'm tired. I've been working on this, experimenting with different things to try and improve my fatigue. Provigil (an expensive prescription medication) doesn't really help much. I've been taking a B-6 complex for the past month and a half, which seems to help a little. I take a lot of naps, but sometimes this actually seems to make things worse because I get overheated during my nap and wake up worse than I was before. I've been sleeping that extra 20 minutes or so I usually have to spend straightening my hair in the mornings and letting it be curly. I sit in front of a fan at work a lot, and always have ice water or an ice pack near by. And in the past couple of weeks I have actually broken down and let myself use my handicapped parking placard. These all seem like little things, but I'm learning that the little things are what seem to make the biggest differences. This is what I need to realize, and accept as my new normal.
My neurologist just prescribed Ampyra, which is a new medication that is supposed to improve walking in MS patients. I don't have the typical problems that he would normally prescribe it for, according to the neurologist, but he feels like because I'm stubborn and "not that bad" (my words being fed back to me) I push it and end up doing too much. It's an ordeal to get the meds, so I haven't started yet (they're mail order pharmacy only) but we'll see. It doesn't help everyone, but I'm going to give it about a 6-8 week trial. The Catch-22 with it is that I'm almost afraid it will work TOO well and when I go back to Chicago my EDSS will have gone back down. I know this seems weird, who wouldn't want their EDSS to go down, right? The thing is, I know it's only a temporary fix, and it certainly isn't taking care of the actual problem. If my EDSS is the same as it was in December, I have the chance to receive a stem cell transplant which is the only thing right now showing any promise of curing and reversing MS. (I absolutely do not buy into the CCSVI thing, and no neurologist, radiologist or neurosurgeon I know and trust does either)
I am very much a quit your bitching and fix it kind of person, and not just with myself, but with everyone around me as well. I guess this is one of the biggest reasons MS is so hard for me to get my head wrapped around. I can't fix it, but I can ALWAYS find plenty of things to bitch about when it comes to MS! But I feel guilty bitching, I know so many people have it so much worse than I do, with things worse than MS. I see people on a daily basis who are dying of cancer, or who are taking care of their dying child, parent or spouse. I also see people on a daily basis who are so incredibly bitter about their fight, and I NEVER want to be that person. I strive everyday to make freaking lemonade out of the batch of lemons life has dealt me. The worst thing anyone has every said to me about having MS was right after I was first diagnosed, and it has stuck with me. It was horrifying, and I was so angry. A nurse at work was going on and on about neurological stuff, and MS came up. She told me she'd rather have cancer than MS because at least with cancer there's the promise of death. I still hold to my original feeling when I heard this, that I would rather not die...but I do kind of understand the sentiment a little better now. What I think she meant is at least with cancer there's an answer, a prognosis, a treatment...basically, a plan. With MS there is none of that. Just questions, doubts, and the unknown.
So, back to my original point of this post. I'm sorry for being a whine baby lately.
