I just read a quote from a PALS (person with ALS): "ALS hates happy"….I have been trying to keep a PMA (positive mental attitude) but I think I'm losing the fight. The past month and a half I've taken a downward slope in my progression….nothing NEW, just "the same, but worse." What makes it harder is that there are some things that would make my quality of life much better but I can't afford them. Now, I'm not talking things like a vacation (although that would certainly give me something to look forward to and WOULD increase my quality of life…although I'd rather just be able to go back to WORK!). I'm on oxygen at night now in addition to my AVAPS (non-invasive ventilator). I had hoped it would help me sleep better, but no such luck. Sleeping with a mask on is hard anyway (as any FEMALE with a CPAP will attest…I think men can sleep anywhere under any circumstances, so they don't count). Having the mask tethering you to a gizmo is a pain. Having the tether be 1" corrugated tubing (that isn't comfortable to lay any body-part on) is less-than-pleasant. Now add the fact that my joints and neck hurt…and turning over or moving in bed is hard. What that all adds up to is my sleep SUCKS. Meds aren't even working anymore. I'm more tired that I should be, and I was tired enough to begin with. I try to nap every day but that just takes more "life" out of life. I need an adjustable bed that has memory foam so that I can comfortably stay on my back in one position all night.
We need a vehicle that is suitable for all of us. We have been given a cargo van converted with a wheelchair lift, but Christopher cannot safely ride in it. After checking with several dealers and body shops we've been told that there is nothing that can be done to remedy the situation. All I want to be able to do is go out with my son!
It is bad enough having ALS and being without a spouse-caregiver, but life is getting really difficult and discouraging. Other PALS (persons with ALS) complain that they "spend all their retirement" on ALS-related expenses. I'm growing less sympathetic to that complaint. I'd gladly spend any retirement I have to be able to enjoy the time I have left. I have no retirement to spend.
If I sound like I'm having a complain-a-thon, I am. I've been stoic as long as I can. I am angry about having ALS and angrier that I am STUCK staring at my walls all day long. This is NOT a LIFE.
I apologize for the negativity. I'd love nothing better than to be able to work harder to meet the needs of my family…"pick up an extra shift" as it were. What would you do if you were in my situation? ALS hates "happy"………..