Recently, it has become much more difficult for me to use the commode. Even though it is just one step from my bed, attempting to use it under normal conditions involves extreme difficulty breathing, muscle weakness (due to cellular fatigue), shaking, and a constant battle to maintain consciousness. Nevertheless, I have been determined to continue using my commode, mostly because I haven’t wanted to face the other options. This changed last week.
One night last week, as I was laying in bed watching Netflix on my tablet, I suddenly had the odd feeling my bowels had released themselves. I wasn’t sure – there had been none of the usual warning signs – but still, the suspicion nagged at me, so I grudgingly made my way to the commode to check. Sure enough, my bowels had released themselves – all over the place! This isn’t easy to write about – I tend to feel embarrassed/humiliated over such issues – but it is part of ME, and documenting this illness is the primary purpose this blog exists. So share I will – even the most humiliating aspects.
Anyway, back to my night of horrors. My husband was asleep, so I woke him to discard my soiled garments for me. This is embarrassing in and of itself (“Here honey, take my poopy shorts and underpants and wash them for me, will you?”), but by now my husband is used to gross requests, so he didn’t make a huge deal of it. By the time he returned to the bedroom, I was in pretty bad shape, gasping for air, shaking violently, and on the edge of passing out. Lawrence (my husband) offered to help me further, but I’d had enough humiliation for one night. I was determined to clean myself, by myself. I began the tedious process of wiping once, then sitting back and gasping for air, clinging with all I had to consciousness, before finally feeling it somewhat safe to attempt to wipe again and repeat the process. Lawrence offered to help several more times, but each time I refused with a breathless grunt or quick shake of the head. Finally, I realized it would take me all night (and most of the next day) to get clean on my own – and that’s only if I didn’t pass out (a big if!). I asked for help.
Lawrence immediately came to my aid, spreading a towel out on the bed for me to lay on. At this point I could not stand on my own, so Lawrence had to half-carry me the few feet to my bed and help me get laid out correctly. He then proceeded to don some gloves and clean me up. After this, I asked him to bring me my pulse ox monitor to check my heart rate, since my heart had been going absolutely crazy this entire time. At this point, I’d been laying still for approximately 30 minutes, yet my heart rate was still bouncing between 160-170 bpm. I hate to think what it was when I was actually upright! After everything was finished, Lawrence helped me sit up on the edge of the bed so he could slip clean garments onto me. I could not remain upright on my own, so he had to hold me upright while slipping first one leg, then the other through the appropriate holes. He then stood me up and held me while he and I somehow managed to pull everything up where it needed to be. Then he placed me back in bed, tucked me in, and left me still shivering, breathing hard, and experiencing crazy heart stuff for quite some time as I struggled to recover.
This experience turned out to be the final straw. Combined with the extreme difficulty and risk factor involved in commode visits over the previous month or so, it forced me to realize it was time to look for other solutions. I contacted my hospice team, who brainstormed ideas. I cannot use a bedpan on my own, and since I am without a carer for approximately 11 hours most days, that simply wasn’t an option. The only thing left was adult diapers. I hate that term. “Diapers.” As if we don’t feel enough like babies without calling our undergarments diapers. Whatever name is used, this is now our solution. It’s not perfect. Sometimes it leaks – especially if I have to urinate more than once per change, but bed pads do a great job of absorbing any leakage so we don’t have to change sheets.
I’m not proud of this latest progression. I’m still extremely uncomfortable allowing myself to “go” in bed. But it does save valuable energy, and prevents the horrendous symptoms associated with my attempted use of the commode. I try to tell myself there’s nothing to be embarrassed about, that this is a normal progression of my disease, and I should simply accept it and move on. But there’s something inherently humiliating about asking your husband to change your diaper, to deal with the smells and messes, and to wipe you like a baby. It’s hard. But it’s ME. Hopefully this aspect will get easier with time. Until then, I’ll be here documenting the good, the bad, and the (very) ugly.
To all my fellow sufferers, hang in there! Despite the isolating nature of this illness, we’re all in this together. Hugs all around!