Thursday, October 3, 2024

“I Say I’m Just Fine, But I Don’t Feel Alright on the Inside”

I want to ask for your prayers, in light of recent circumstances.

Yesterday afternoon, I fell in the kitchen. I'm not entirely sure what caused me to fall, but I fell down, full body, on my left side. I immediately got up again and looked myself over. I knew I hadn't broken any bones and I felt no evidence of any strains or sprains. There seemed to be nothing more than just a few bumps and bruises. It wasn't the first time I've fallen, obviously – I have had a broad range of very peculiar mobility problems since the year 2002, but I haven't fallen in quite a while.


I've been very careful. I've been in the process of gradually trying to build up my strength by daily walks, trying to get a stride going. I bring my cane for assistance, but I find that sometimes, when I have a good stride going, I can do alright without it, and I tuck it under my arm. I don't take long walks, but I have been working on trying to strengthen my general mobility. So it was disappointing to fall in the kitchen yesterday. However, I felt fine. I should have remembered more clearly that a fall like that could blossom into other symptoms typical of my condition. I have most recently referred to this condition as “Long Lyme,” and indeed – in light of troubling cases of “Long COVID” that have emerged in recent years since the Pandemic – the medical profession in the United States seems more open to researching whether there might be enduring physical causes of what some have called “post-Lyme-syndrome.” There is, of course, lots of research showing that borrelia bacteria can remain in the body, and that they have their own protective mechanisms for evading the immune systems of at least some people. Then, of course, there is the fact that for years and years a significant percentage of Lyme patients have consistently complained about recurring and sometimes debilitating symptoms even after completing the standard course of antibiotic treatment.


But I digress. Let me return to “the fall.”


I should have taken it very easy (physically and mentally) for the remainder of the day. But instead, I “shook it all off” and continued with my day, mostly doing work in a sedentary position or laying on my bed surrounded by books and my usual gadgets. And then, at around six o'clock in the evening, I decided to go out for my walk. I had not noticed significant pain in any part of my body – by which I mean “no new pain”; just the same old, same old pain. 


And I am very much accustomed to pushing through pain, the normal kind of pain that comes from whatever residual abnormal factors remain from my health condition or have gradually arisen and increased with age. So I'm used to “pushing myself through” these usual aches and tiredness. I took a long walk, and pushed myself. I knew I was pushing myself, and I wanted to push myself. Usually, it's worth it.


But at the end, as I approached my house and began to slow down, I began to realize that I had pushed myself too far. Nevertheless, I still had things to do. I continued to slow down in order to regain balance in my body, and I drank plenty of water in order to make sure I was well-hydrated. 


Then I had a meeting on Zoom. During that meeting, I was sitting and feeling very, very uncomfortable. I was beginning to feel pain all through my body, but especially in the left thigh. Maybe I’d sprained something. But also, maybe I’d started to “relapse.” There’s always the possibility of triggering a “flare-up” of the Lyme disease bacteria that are presumably latent and inactive in my system, or triggering whatever-else-it-is-that-causes-renewed-symptoms (“Chronic Lyme,” “Post-Lyme,” “Long Lyme,” or maybe even a new infection from some recent tick bite I failed to notice — this is the Shenandoah Valley, after all). I’m used to periodic flare-ups, and I generally know how to get through them. But some flare-ups are more severe than others. .


This is what a big Lyme flare-up feels like: pain comes rolling down your body “like an avalanche,” as Avril Lavigne – the famous singer-songwriter “pop-punk-princess” and fellow Lyme sufferer – describes it in another of her poignant and compelling songs (“Avalanche”). This song dispenses with the unnecessary “emphatic-profanity” that Avril has used in too many of her songs since her third album (sorry, Avril, but it's too much, and it just projects vulgarity and anxiety – not the “tough-rock-chick” …ah, but this is another story for another time).


The pain was still predominantly in my leg. It was not the kind of pain that was going to make life unbearable. But it was enough pain to make me have a new source of discomfort. The fact is that I'm not very good at handling pain. I don't like pain, obviously. Who does? I am not very good at handling pain, especially acute localized pain.


I've had to slowly sort of manage the aches that are customary in my life and learn how to deal with them using various different “tricks”: Deep breathing and slow movement exercises (not Yoga or any particular system). Careful stretching and making sure I move around all through the day, taking Tylenol when I need it (in measured quantities) and some key supplements, as well as some of my other medications, which are also good for pain management. There is one firm rule: No Opioids Allowed! I had lots of those in the early 2000s, but when they had to raise the doses, I developed intolerable “side-effects” and had to stop them. Thus I was saved from the “Opioid Crisis” that the pharmaceutical industry recklessly foisted on my country’s population near the beginning of the 21st century. Dealing with the “side-effects” was wretched, but it took me out of the opioid-prescription-circus long before it spiraled out of control and caused so much suffering. I don’t know how it would have turned out for me, but I thank God that I was removed from that dangerous model of pain management. I would have been too weak and too stupid to handle it on my own.


But back to my present story of falling in my kitchen, and straining my left leg by trying to “walk it off,” and the concerns I have at present.


Last night it was difficult to find a position to sleep (or, I should say, it was more difficult than usual, for more precise reasons). Blah! There was a new and troubling experience of pain in my legs, primarily in my left upper thigh. It felt like a stretch pain, like I had stretched or strained a muscle, with maybe some interior bruising. (Meanwhile, the “avalanche” was rumbling —musculoskeletal pain was rising in both legs, the back, and both shoulders.)


Why would anybody want to analyze a strain on a blog post? It's kind of funny in a way, because it's like, okay, I stretched that muscle a little too much, and I got a strain. I have compresses, I have magnesium, vitamin C, etc. etc. But when you have “Long Lyme” disease, you can't ever just take it for granted that a strain is a strain, a fall is a fall, and that's it. You have to pay attention to how things are going over the course of the next week or two to see if other parts of your body are starting to act “strangely.


Very few people understand what this is like—this up-and-down disease combined with all my other problems, my OCD and depression. I felt like I was recuperating from the difficulties of the summer. Now I’ve got to start over. Other people express sympathy, but it’s only natural for them to think, “it can’t be that bad; he looks fine.” I’ve been dealing with this for over 20 years. What use is there in bothering other people about it? I get why Avril sings: “ask about me, I’m quick to change the subject” or “I say that I’m just fine, but I don’t feel alright on the inside…


So it's back to bed rest again (mostly laying on my right side), and trying to take shelter from any “avalanches” of pain. I hope I don't find myself singing, “I think I'm running from an avalanche, I think I'm running from an avalanche, I think I'm running from an avalanche…


Whoa-ho-ho, whoa-ho-”… NO!