It’s been a rough day. When I woke up I felt like I needed to get my mask on right away, I needed air. Because of the full face masks leaking, I’ve been wearing my nasal mask only, even at night. It keeps a great seal and It’s very easy to take on and off. I usually have it on most of the night before going to sleep and take it off after I’ve slept a little. Some days I feel like I need it right away when I wake and some days I don’t. Today I did, but there was a problem.
First I had sticky mucus in the back of my throat that felt like it could seal it closed. Add to that my nose was congested, but it was hard to blow anything out when I felt like I needed to breath in, and it felt like the congestion was sliding down to the back of my throat. It was different from what little experience I’ve had with post nasal drip.
I felt like if I put on my nasal mask it would push more mucus to the back of my throat. Tony helped me in my chair to the sink where I tried to cough up this sticky mucus and blow my nose. It wasn’t easy blowing out when I strongly felt the need to take a good breath in. After a little panic and a lot of tissue, I felt I had enough out to put my mask on. Halfway through the first inhale some mucus does come from my sinuses and stops right at my throat. I pulled the mask down and did get that out quickly fairly easy. It wasn’t as sticky. After that, I put my mask on and I’ve been OK since. No sticky mucus and I’ve used my vent as needed throughout the day as usual. But this experience really scared me and I’ve been anxious all day. Now I’m more scared than ever to catch a cold. I haven’t in years. Knock on wood.
I feel pretty sure this has to do with my big reduction of fluid intake. I know there is a suction device that helps with mucus. For some reason I’ve always thought they were used more when you have a problem with excess saliva, and I have the complete opposite problem, even when I was guzzling water.
This is ALS for you. As soon as you get settled in to a change, you’re hit with another one. I’m still not fully used to that fact I can’t walk.
Tony put a healthy shake together for me today that tasted great and was easier to swallow. I’ve been told from the beginning water would get harder for me. We’re both going to try to keep me better hydrated. Hopefully it’s something I have more time before it’s a constant problem.
Come on ALS, you sorry Mother Fucker! At least let me have a day to have energy enough to enjoy a shoe shopping day for the first time in over a year. Aren’t you busy enough with all these new fasciculations you’ve been adding to me? No, they don’t hurt physically, but I know exactly what they mean? I hate you ALS!
Some of my regular readers are probably happy to see this blog post about half the length of the others. I’m fatigued, irritable and I’m cramping from typing. I may take a break from blogging to give the website some attention soon.
If you have any questions or have something you’d like for me to add to the site, please use the contact page and I’ll get back to you as soon as I can.
Until next time, take care,
This article was written by April