We’ve all seen the hash tag #becauseMS. Things like this exist because they’re so fucking true. I’ve been having a problem with my left hand where it curls up almost making a claw rendering it useless. So I did what any reasonable person would do – I made an appointment at my physiatrist’s office to have it looked at. Of course this means leaving my house taking public transportation for the disabled called Access. They require a two-hour window on either side of the appointment time for pick up. My regular daily caregiver wasn’t working today and her replacement is notoriously late. I had been worried about missing the bus but the reason I missed my appointment are more ridiculous than that.
I hadn’t pooped yesterday which is very strange for me. I was so focused on the fact that I had to try to poop and there was nobody here to help me go that I completely forgot about my doctor appointment. The short story is that my late caregiver was indeed too late for my appointment and when she finally got here I finally got my ass on the toilet and barely went at all. The hash tag #becauseMS popped into my head just now because it explains this entire fucked up day. How was I so obsessed with not pooping that I forgot my doctor appointment? Because MS. Why did I barely poop at all once she finally got here? Because MS. Why am I so certain I won’t be able to poop any more today even though I should have to? Because MS.
Why do my legs randomly move of their own volition but not when I try with all my heart to make them move? Because MS. Why is my body in so much pain all of the time that I require a 2pm pain pill every day just to make it through the rest of the day? Because MS.
Yesterday was shower day except it wasn’t because my primary caregiver was late she had her own troubles that made her very late so shower day had to be put on hold. Late starts haunt me. Not being in control of my own schedule means dirty Bethy since I only shower once a week. Even the best caregivers are human and have human bodies that need taking care of to make them ready for the job of taking care of me. There’s lifting of heavy limbs, pushing me around on my sit-to-stand lift, pulling the lift vest on to my body which takes back muscle exertion – in short, it’s a physical job that takes a toll on the body. Even the best caregivers get sick and need a break which means my needs get put on the back burner. Once again #becauseMS.
MS isn’t a part-time gig. It has you in its grasp 100% of the time. You’d think I would be used to it by now nearly 10 years in but I’m not. I don’t think I ever will get used to it. #becauseMS.
Source: bethybrightanddark.com