Reader-land, if you are squeamish or don’t like TMI, then skip this post seriously, I’m about to share one of the most horrible things about ALS.
I don’t know if it is because we are in construction, or if the walk is too far. I do know that the all liquid diet is not helping. But, frankly, I peed myself. Several times.
Let’s put it into context. I sit, all day. Naturally, this allows for a certain leeway in getting to the loo. If I sit, I can wait. If I get walking though, I gotta GO. So, the all liquid diet means I am hydrated, at least. But if I wait too long, all bets are off. This is what happened to me this week. I waited too long and couldn’t hold it. But in the morning, I may have been lying in bed for nine hours, and I can’t get up myself. So mornings are difficult. Panicky, even. Add in that I am slowly losing control of my muscles due to ALS and yeah, that’s the situation. I no longer have an iron bladder that can sit through a high-stress night shift!
Let me also comment how terrible this is for Mel. Holy cow, she’s got to walk me around, then clean up the mess, then clean me up, generally by a shower, and then take care of everything else around the house. I will never, ever, ever, say that ALS is harder on the patient. Those left behind, the able-bodied ones, are the true warriors and heroes. They pick up both roles and add in the nursing role. I just have to sit here. I feel so guilty, for what I put Mel through, and I know she loves me. And we have carpet!
What recourse now do I have? Well, I am not going to wear diapers yet. There are lines that I will not cross, and right now I draw the line at diapers! Not yet, anyway.
So how are we going to mitigate this new development in the ALS progression? I have a few ideas…
I’m not sure I could maintain fluid pressure to get this to the toilet….
Ok well I’m not going to tell you what solution we come up with. You’ll have to wait. Ha. You probably don’t want to know anyway.
Mel and I joke about having the Benjamin Button disease, so this scene from Mitty just fit perfectly!