There’s been a topic detour… It’s Saturday evening and I got comfortable after the long process of showering. Right before I started typing I had a severe mid/upper back cramp. Not my back injury pain. This was all ALS. First I felt like I couldn’t breath in air easily. That’s not uncommon so I put on my easy nasal mask and pushed the button to turn on my ventilator. Usually I can get control and start breathing easy with the ventilator within a few breaths, but not this time. Even though my vent numbers showed I was taking in air it didn’t feel like it, so I was gasping, and started going back and forth breathing through my mouth (which this mask doesn’t cover) and nose. This through me all off and I felt like I was hyperventilating. tingly feeling in fingers. My back muscles were still cramped and tight making any movement hard. I couldn’t even use my strongest muscles to help stay in any position. So I just let my body slide down in the bed. Tony was sitting next to me, asking what’s wrong. But talking wasn’t easy. in my breathy voice I got it across to him that I needed him to sit in my transfer chair and hold the weight of my head. He figured it out, stayed with me as I’m making small weird movements with my weak arms. I wouldn’t say completely uncontrollable movements but, I didn’t feel like not letting them do what they wanted was an option if that makes sense. Probably not to many people. Finally as he held the weight of my head my back started to release from it’s spastic state. So this is what my blog post turned into tonight. I’ve been having a lot of spasticity lately but this was severe. A similar back thing has happened in the night before. sometimes wrapping around to the front. This happens when I end up completely flat on my back, and especially if I’m not using my ventilator. I wake from a sleep and can’t take a breath in because the movement hurts my back that bad. I have to try and wake Tony with my hand and that’s not easy because that takes these muscles. He has become a light sleeper and has figured out a way to move me when this happens because every way hurts. The best thing has been for him to slide his hand under my back muscle then slow and easy help me sit up and get on vent. This is so scary to me. I’m afraid it’s my actual breathing muscles/diaphragm being affected. I’m just gonna stop about it now. I hate you ALS!
Tomorrow I’m going to eat with family. This will be the first time going in this house in a wheelchair. the only other house or place at all I’ve been to in a wheelchair is my Mother’s home and out to a restaurant. Both are wheelchair accessible. My Mother has a ramp because she takes care of her sister who’s in a wheelchair. Since the point of not being able to use my rollator, I just stay in the car when we leave for a house viewing. I’m nervous about tomorrow. Ther’s five or six stairs either way you go to get in this house. I thought of not going, but Mom insists. I just feel uncomfortable. There will be non-direct family there and I feel like special accommodations will be made for me. I mean like eating in a different area than I usually do. What if I need to piss? I know I’ll be surrounded by people who care about me and strangely that makes it seem all worse. I don’t want them feeling uncomfortable. Things just seem to have sped up on me. I went months getting around with my rollator, and maybe somebody walking up and down stairs with me for extra support. This is a huge change, and I’m scared.
I think dehydration played a part in what happened a bit ago. I used to drink 7 bottled waters a day. I went down to five after my activity level dropped. For over a week now I haven’t made one bottle most days. One, I’m starting to have difficulty getting it down. Seems to want to stay in throat, and I don’t want to choke. Two, it means less trips the the restroom. I’m setting my goal back to 3 bottles a day. Bottles, shit I’m regressing to an infant. No it’s not time for that now!
Look, I don’t even know if I’ve made sense, and tonight I don’t care. This post was all for me.
Until next time, I wish everyone well
This article was written by April