Lately we’ve encountered some rough waters here at my place. I apologize for being behind on comments. I assure you I am working as much as possible to get caught up. Please never feel bad if it takes a few days, or even a week, for comments to be approved or replied to. I’m simply not always able to do the things I’d like here, although I do usually receive your comments one way or another shortly after they are posted, and they always make me smile.
That said, on to recent events. Right now, I am completely without pain medication. Because pills have absolutely no effect on me – and many other severe ME patients – due to digestive issues, and because my doctor isn’t quite ready to put me back on a morphine pump or something similar, our options for pain relief are rather limited. Two weeks ago I had a couple of really rough days. My pain was incredibly high, and my body responded with chills, shaking/trembling, a constant cold sweat, and many more unpleasant symptoms. There was really nothing to be done but suffer through it, so I did. I honestly felt like I was dying. I hadn’t felt quite that bad in some time, despite living with a daily pain level that never goes below an 8.5 (and that’s if I’m lucky). This is, of course, on the “ME pain scale,” where 10 is a level of pain where getting eaten alive by tigers literally could not hurt any worse. Not fun.
Eventually that phase passed, and I went back to “my normal,” although it took about a week to begin to recover from the extra strain placed on my body during those few days. Right around the time I was starting to come out of it, my doctor prescribed a new medication. This was a cream that supposedly treated pain and nausea, and was to be applied to the backs of my wrists every three hours. Shortly after the first application, I began experiencing an increase in my ever-present headache symptoms. After the second application, the headache turned into a full blown migraine and my nausea level began to rise. After the third application, my body had had enough. I threw up – twice in one hour – and became capable of nothing other than lying in my quiet room with my eyes closed, wishing the migraine would end and my stomach would settle. I immediately made the decision to stop all further applications of this medicine, but even so, it took my body all night and half of the next day to return to normal.
As luck would have it, later that evening I began experiencing a new pain in my lower left abdominal area. I had never felt this type of pain before, so wasn’t sure what to make of it. The area in question hurt constantly – even more so when I gently pressed down on it with my palms. As time went by, the pain worsened, eventually spreading to my lower left back – directly opposite the pain in my abdomen, and right next to a compressed disc in my spine. Seeing as it was a weekend, I didn’t want to bother the hospice nurse, so I put it off several hours. Eventually the pain became too much for me. I could barely breathe, much less speak, so I had my husband call hospice’s emergency line for me. Then I threw up.
To make a long story a bit shorter, I eventually realized my bowels had backed up. Thankfully we caught it before hospitalization was needed to fix the issue. Still, it took a lot of very painful effort to empty my bowels. Then, despite the humiliation of lying in my own waste, I begged my husband to wait to clean me because during the course of the effort needed to clear things, my back muscles had gone into a constant spasm, and I just couldn’t face the pain of laying on my right side so he could clean me. I am someone who has lived with multiple chronic back issues since childhood, so knotted and spasming muscles are nothing new to me, but this was a whole other level of back pain due to the fact that this was a severe spasm that refused to let up even a little for many hours. Eventually the hospice nurse showed up and insisted on cleaning me right away. Usually I would be mortified to have a total stranger clean up my waste, but this night in particular I was in far too much pain to care. In fact, I was barely aware of whatever she did. I simply focused on trying to make it through the pain of my spasming muscles combined with my increased ME pain.
The nurse did nothing to stop the spasms (although she did comment on how that whole area of my back was completely tight), choosing instead to give me a nausea medicine and a pain pill – both given rectally since my nausea was too bad to keep anything down, and pills don’t go through my stomach properly anyway. After she left, I asked my husband to apply some Chinese ointment to my back (this stuff really works – think of it as all natural Chinese Ben Gay, but more effective). Often, having my skin rubbed is enough to bring me close to tears, but this night I simply wanted the spasms to end. Unfortunately, the spasming continued throughout the night, until eventually my body was so exhausted I fell asleep. When I awoke, the spasm had stopped and my muscles were simply sore. I had two good days, then another day where my back muscles resumed spasming, causing horrible chills, nausea, and vomiting once again. Eventually it stopped again, although my body is still paying the price for that particular episode.
Needless to say, the past few weeks have felt like one bad hit after another. I have gotten a few pieces of good news, however. First, my mom landed a job here in town. While this job is way, way below her qualification level, she really wanted to be here to help with my needs, and was lucky to find any job at all in her field in this sized town. She starts in August, and her new hours will allow her to be here frequently while my husband is away at work. For many months, I have desperately needed a carer but been unable to afford one or to find any affordable programs to help us out. Because my husband’s schedule varies greatly, there will still be some days I will spend almost entirely alone. But there will also be other days where I only spend approximately two hours alone before my mom arrives to help out until hubby gets off work. Meanwhile, I have an aunt and uncle who live two floors up who recently heard about my dilemma with not being able to make it to the commode anymore. They came down and made a sincere offer to come help with “sanitary cleanup” when needed while my husband is at work. Because my uncle is disabled, they’re home most of the time, so this is a huge help! Between them, my husband, and soon, my mom, I may never be stuck lying in my own waste again! I still need to overcome my embarrassment at having various people clean me, but regardless of how I feel about that, this is really good news. Definitely a step in the right direction.
And on that happy note, I’ll close. Thank you for taking the time to join me on my journey here. It means so much knowing I’m not alone, and that I can help educate about this disease while meeting and making new friends along the way. You guys are the best!