Saturday, January 9, 2010

Too Personal

The lists in Listography started getting way too personal for a blog my mum or siblings might read, so I'll do lists as I think of them from now on.

The stupidest of MS symptoms have been acting up all day. Not the ones that make me fall down or leave me unable to move or stay awake. I lose all feeling in my right index finger whilst I am typing. I get a sharp, stabbing pain in my left cheek as I am filing. These are the kind of symptoms that remind me throughout the day that I’m not right and I never will be. Irritating rather than devastating, I just keep trudging.

Speaking of trudging, I have figured out that I bring foot drop on by trying to hurry or walk to fast. If I can just walk slow and steady I can go for much longer in both time and distance than I can if I am even trying to go a short distance by hurrying.

I’m trying to read, write and stitch every day. Most days I get two out of three, and sometimes just one, but it is really rare that I get all three done. With the vertigo caused by my vestibular problems I can't read on transit to work without the threat of motion sickness so all my want to do list has to wait until I get home from work.

I have a MUGA scan on Monday to have my annual check in after getting mitoxantrone (Novantrone). It has been known to cause heart problems so I have to get this scan every year for five years, unless I start showing symptoms of cardiac problems.

I go to my How to Deal with Injection Medication education class on the 20th. I see my neurologist on the 28th to get my Copaxone script, a pep talk and then head down the hall to Victoria the physiotherapist to learn some exercises to help with my vestibular problem.

February 1 is day one on Copaxone. I'm not sure how I feel about that yet. It's not real to me nor will it be until I'm confronted with the auto-injector on the evening of February 1.

I often wonder how many other people with stupid "But you look so good" MS (that is, the kind that doesn't keep other people from having expectations of you) feel like their lives have been complicated by more than just symptoms and/or disease progression. Shots, vitamins, shower stools, yoga, therapy, canes, drugs, research, low fat, gluten-free, blah, blah, blah.

I haven't had fun in weeks. I haven't had an absolute *Blast* in years. Between my disease, Joe's schooling and our brokeness for most of the past year it feels like it is impossible to have any kind of fun. Every time I try to plan for regular fun it doesn't seem to work out. I'm not sure it ever will.

1 comment:

  1. I am in an especially dark, bleak mood so I don't have anything at all positive to say but I thought that that fact might actually brighten your day since I'm always so pollyanna about ms.