You know, I've dealt with this disease for 13 years and most of the time I deal with it okay-ish. About 6 or 7 years ago I remember falling and then I just stayed on the ground and cried - not for any broken bones or cuts and scrapes. When my husband frantically asked me what was wrong, I simply said, "I'm tired of it. I'm tired of all of it".
Without fail about once a year I go through a phase of being really, really fed up.
I don't want to put on a brave face. I don't want to smile and pretend I'm okay. I'm not. This situation is so fucked up. The day to day drudgery wears me down. Just maintaining and keeping my head above water is overwhelming.
- The never-ending list of upcoming doctor appointments
- Dragging myself to the gym twice a week and knowing that my legs are stronger but nothing improves
- Shoveling in a mouthful of medications and supplements
- The involuntary leg jerks that contort my whole body into an unattractive lurch and keep sleep just out of my reach
- Taking each step up to my front door with careful calculation and realizing we're going to need a ramp soon
- Simple acts like walking (read: dragging my feet) to the bathroom or getting a cup of coffee that require Herculean effort
- The shame that has accompanied all of the little losses over the years, things I used to be able to do but no longer can
- Growing my hair out for 3 years and watching clumps of it come out in my hair brush thanks to the new drug I'm taking (Aubagio)
- Saying no to things I want to do because I can't do them (too hot, too many steps, too tired to care).
Even going to a friend's house for dinner requires a choreographed routine of my husband carrying me up the stairs and then lugging my scooter inside where I hope to navigate around without nicking a door frame or bumping a bookcase. And then I fear spiral and realize that my husband won't be able to carry me around forever. It feels like it's never over and it can bury me if I'm not careful.
I have to allow myself to feel it all. Otherwise I risk sinking into a comfortable slump of denial. I don't remember how I used to move anymore. I get jealous. And I get so in "it" that I can't see past my own nose.
Then my husband, who is keen enough to see the road I'm going down says something so ridiculous and/or hilarious and/ot absurd that it snaps me right out of the wallowing and self pity I let myself fall into. Then he gives me the best hug - wraps me up in all of his warmth and strength. I start to feel like everything might be okay. Maybe?
I will barrel through it. I will go to the gym. I will eat dinner. I will watch tv. I will go to bed.
I will wake up and start it all over again tomorrow. And hope, always hope. It keeps spinning its wheels even when I'm not around to see it.