May is ALS awareness month. In honor of that, I thought I would share a story of what it’s like to live with ALS. True story.
Have you ever gone to a doctor’s appointment and been left waiting for what seemed like forever? Waiting so long that you began to wonder if they had forgotten about you? What am I asking? If you are reading this blog then chances are, you have or had a serious illness and, this has happened to you more than once in your many doctors appointments. If you rely on others for your caregiving, then know that at some point, you probably will be forgotten. Not on purpose, but it just happens. I’m not saying this to worry you, but so you can plan ahead, and perhaps prevent it from happening to you.
I was in the bathroom late one evening. Yes, on the toilet. After what seemed like forever , in fact 10 whole minutes (I have a clock right in front of the toilet), I yelled for my caregiver. No reply. I waited a couple of minutes and yelled again. Still no reply. Ok, so after 20 minutes I really started to get upset. Normally they would check to see if I needed anything after just a few minutes. I cannot get up on my own, so I am stuck waiting. After 30 minutes, I start to worry. Did they fall asleep? Maybe they fell down and got hurt? The scenarios start playing through my mind. My foot falls asleep, my butt is going numb, and it’s only been 40 minutes! I try yelling again. Nothing. I keep yelling. I yell for the dog. Nothing. Really? Not even the dog remembers I am stuck in there? Note to self; get a better dog. Maybe a Saint Bernard rescue type dog. Now I really start freaking out after 50 minutes of sitting on the toilet. I start trying to figure out when someone will be over next. My daughter is due over in 10 hours. Could I really sit there for 10 hours? After 1 hour and 5 minutes, the yelling paid off. My carer had fallen asleep, and finally woke up! Relief!
When, and if, you are ever forgotten, try not to freak out like I did. Maybe you can plan ahead to prevent it from happening. Maybe a clock in the bathroom isn’t such a good thing. Maybe I can try to finish up in the bathroom before midnight, when my carer is likely to be tired. Maybe I could train my body to go with someone else in the room (yeah, that’s not gonna happen)? You know, out of sight, out of mind! Maybe I can get that rescue dog, or maybe a helper monkey? Maybe someone could just find a freaking cure for ALS!