Today dawned sunny and warmer. It’s 43 degrees right now and some of our two feet of snow will melt quite a bit today. But alas, the weatherman expects a hard refreeze overnight, so who knows what tomorrow will look like. Schools are closed in Fairfax County once again today, but I did see the mailman out on his rounds when I came home from water aerobics this morning. Yay! I don’t even really like getting mail, but it’s one more little bit of normalcy to look forward to. I should go out and see if I can shovel out the area around the mailboxes. And who knows, maybe we’ll actually get trash pickup on Friday. Yep, cabin fever has officially set in here: trash and mail are exciting.
Oh, late-breaking news: FCPS has cancelled school for the rest of the week. Now, what was I saying about needing some normal? I watched actor Jamie-Lynn Sigler’s interview on Today this morning. She just went public with her MS diagnosis, and I really respect her. She kept it secret for about 15 years like me. At my most recent job, I didn’t disclose my disease status until I had to use a stick to help me to walk after a bad experience when I started Tecfidera. I’m sure it’s a good drug; just not good for me. I had spent about 3 months in physical therapy and when my doctor switched me to Tecfidera, I lost all I had gained in gait, mobility, etc., in four days. That’s right, 4 days! I felt worse than I had in 15 years’ of living with MS; just really terrible overall. It’s taken a long time to come back from that medication misadventure, but it really brings home for me just why the practice of medicine is called an art. Trial and error is a big part of medical practice. I’ve never even been tempted to look at the med school exams, but I would think that the more nimble a potential med student, the better future doctor. Hmm, I’ll have to ask my husband’s niece if she has found that to be true. She just finished med school in Morocco.
It would be nice if all humans reacted in a predictable, static way to illnesses and medicines, but we don’t. And multiple sclerosis is notoriously individualized. In my 15+ years with MS, I have yet to meet anyone who has the same experience as I have had. Symptoms, disease progression, response to medications, even day-to-day function is different across patients. So no predictability seems to be the only predictable thing about MS. No wonder I’m sitting here wishing for some normal.
Other bloggers’ work that I’ve read today touched on “invisible illnesses” and the doubt of others upon hearing of someone’s experience with an “invisible” illness. I also read something where a pregnant woman (not showing yet) asked a man to give up his seat on public transit. This man ranted about wanting her to prove she’s pregnant. Ummm, sir, did you want a gynecological exam on the train? Because this woman probably feels worse at this “invisible” stage of pregnancy than she will when she is six months’ in and looks like she swallowed a basketball.
But MS is something like this. I don’t look sick, but some days, my fatigue is so bad that just walking inside from the garage feels something like I imagine mountain climbing feels like: difficult some days, unimaginable some other days, and damn near impossible on still other days. I am happy when I read something where an MSer has described–accurately in my estimation–what MS fatigue feels like. The idea of a whole other level of tired being just an average day to that person was like someone just illuminated a dark corner of my world for me. In fact, I asked my family to read the person’s description so that maybe they would understand what I feel like on an average day. On the one hand, I really want everyone to understand what it feels like to have MS; on the other hand, I hope my loved ones never have to understand what it feels like.
Be well.
BuildingABetterMe 