“What is ME like?” submission – category “caregiver”
(This blog post is being written by Fern (they/them).)
I can’t survive without a caregiver.
I have Severe ME/CFS. I spend 98% of my time lying in bed or sitting with my feet up. When I get up, I can only do a little bit before I have to lie down again.
Going to the bathroom exhausts me.
I can’t survive without a caregiver, but I still am only depending on volunteers. I’ve been fighting for years now to get a caregiver paid by the government. I can see the end – I’m approved for 36 hours a week, and I know who I want to hire. But it’s been a long road.
Even though I obviously need a caregiver, the supports I’ve found are woefully insufficient. I have had to become a recruiter, on my own, for the caregiver agency that approved me for hours. I have had to advocate for myself and use my very limited energy to fight for help. I have had to watch my health decline as I went months and then years without adequate care.
I am both excited and nervous to receive proper care. One of the things I need help with is toileting. Because going to the bathroom exhausts me, I’m going to try out bedpans. Maybe that can help me avoid some PEM.
Another thing I need help with is bathing. I don’t know if I’ll be able to get through/tolerate a whole bath. Honestly, I’m just hoping I can get my hair washed at least once a week. My head has been so itchy for so long.
One thing I’m only excited for (not nervous) is food. Right now, I mostly only eat microwaveable things that a volunteer prepares for me on the days that they’re over. I’m excited to eat meals that are not microwaved! I’m excited to eat burritos, salmon, ravioli, and biscuits.
Another thing I’m only excited about is wheelchair walks. I get taken on walks occasionally now, but it would really help me to go on walks every day (excluding when I’m in PEM). I love being in nature. I love seeing the trees and breathing the fresh air. I love seeing squirrels darting around. I can occasionally go on a short walk with my rollator/rolling walker on my own, but I can go out much more consistently (and for longer) with help.
And finally, I’m excited to BRUSH MY TEETH. I can’t usually do this on my own. It takes a lot of energy to get to the sink AND then do brushing motions for the recommended time. (When I do manage to do it on my own, I manage about 20 seconds.) I need someone to bring the supplies to me, including a cup, then bring the supplies back and wash the cup out. I’m concerned about my teeth!
I hope I get a paid caregiver very soon.