Now I know why people with ALS have to avoid colds. Wow. In the daytime it’s a normal awful cold for the most part, punctuating with bouts of wheezing, choking and gagging. Night time is another story. Sheer misery. I’m barely able to breathe, I get winded rolling over in bed ( which takes me some time anyway to be fair) and I get stuff caught in my throat that makes me gag and not be able to breathe at all. Very scary.
First Mac then Kathy pointed out that an email we had gotten from Mary whose husband Brian had ALS (see blog entitled Brian’s Song) said immediately call the doctor at the first sign of a cold. This was of course the one instruction I didn’t follow since I didn’t get the email til AFTER the first sign and I’m very literal. Just kidding. I just hate calling doctors is the thing.
The upshot is I called Dallas, the research nurse in charge of the lithium study I’m on and now I have a plan of action now and I’m doing better- had a decent sleep and no wheezing/choking until morning. Big improvement. As winter comes, the prime directive seems to be stay warm and germ free. Kathy and I were already scheming about clothing that is both warm and easy for someone to help me with in the bathroom since staying germ free means drinking lots of fluids means peeing a lot means lots of muscle power for my accomplices. We came up with skirts with thigh high socks – easy to negotiate yet a little saucy for the naughty cripple in the know. Don’t suggest crotchless panties, please – after all I might catch a draft!
So one of the things I like about being single ( I like almost everything actually) is that if you have a husband, other men don’t help you fix shit because they think your husband can do it which would in my case have been ever so faulty of an assumption. On Friday Jon Evans noticed that the brake and the wheel on my wheelchair weren’t lining up just right. I had noticed this too but ignored it. Upshot is I was about a day away from losing a wheel, which was narrowly averted by his eagle eye and mechanical skills. I whip around pretty fast in that chair so loosing a wheel could have been ugly.
In the meantime I have Wendy’s husband Barry selling my beloved Miata, installing off-set hinges on doors and fixing a loose threshold made looser by my reckless driving. It’s like when you go out of town and they give you an upgrade at the rent-a-car place and you’re driving around in a vastly superior vehicle to your own at home AND you don’t have to take care of it since it belongs to someone else. Rent-a-Man!
I officiated another wedding today and think I would have made it through had the wedding started only half an hour late rather than one and a half hours late. I thought that only happened in romantic comedies. What doesn’t happen in those movies is your minister doesn’t call in a pinch hitter because she can’t be understood. That’s what happened. As I can’t drain the mucus it pools up so I am virtually unintelligible. Luckily Sofia ( who jumped in to pinch-sing at the last wedding when I broke down crying in the middle of the tune) read the service until the point where I could talk again. She also took me home and got me out of my dress which she did at the last wedding too. The next wedding I’m supposed to officiate assuming I can is hers so we need to find a new Sofia before then.
If I ever get a cold again, I’m going hunting with Dick Cheney.