These days, when I read what normal people get done in a day, I am completely flabbergasted. Over the past couple of years I seem to have finally gotten a handle, for the most part, on how to live my life without causing my nerves to shut down. This is a huge accomplishment, given the state of my nerves and how long it took to figure out how not to tick them off on a regular basis. But living this way means I can’t do more than about 20 minutes of physical work at a time.
(I wrote that above paragraph a number of weeks ago, and then proceeded to get distracted and not finish the post. A number of crazy things have happened in the time since then, and I finally have time to write another blog post, but I love that title, and the opening paragraph worked as a setup to what I was wanting to write, so I’m gonna go with it…please bear with me, as I think this one is going to get long.)
I was going somewhere with that paragraph. I think I was going to say that I’d finally come to a sort of standoff with my neuropathy… I figured out how to give my nerves the insane amount of rest and disuse they require, and in turn they responded by not trying to murder me with pain on a regular basis, and they stopped shutting down randomly for weeks at a time.
As long as I lived in a constant state of awareness of what I was doing, how much, how long — avoiding certain things, measuring every movement, timing every event, what I was moving, doing, lifting, carrying, bending; as long as I took my meds on time, every time, took the extra doses when needed, and used the braces and the pain cream and the mobility aids and the splints at their proper times; and as long as I didn’t get sick, and the weather cooperated at least somewhat — then I was awarded with what looked, at least from the outside, like a fairly consistent and predictable set of abilities. This is something I haven’t had since I was young. Despite finding my ‘miracle drug’ combination (which I discovered years ago and which allowed me about 90% less pain and 80% more functionality than before I found it), and years worth of trying to find the balance, it had eluded me.
But very recently, I seem to have found that balance, and life is so very much better for it. But that balance leaves me in a place where I can’t do much, compared to everyone around me. I know that most people work nearly every day, or go to school, or both. Most adults take care of kids, or spouses, or parents, they’re involved in various social activities, they take care of their home, their yard, and so many other things.
I used to be able to do all these things, though sporadically. I got through school okay, though with many absences. I got through college at Ohio State okay, for the most part, until my hands atrophied and winter came. I gave up on school and managed to work full time at first, and then I dropped back to 38 hours, then to 36, losing about 2 hours every year or two, but still managing to get as much work done as everyone else. I would randomly fall asleep on the job, but I was good at my work and my employers always let me get by with it. At some point I had to give up on working a typical fulltime schedule, but I still worked as an independent consultant as long as I could keep a semblance of a schedule. Then the nerve entrapment in my right arm hit me out of nowhere and my world kind of fell out from under me.
I couldn’t use my arm consistently, and when you depend on your arms for ambulation, because your legs have been inconsistent at best, for years, it’s hard to wrap your mind around what to do. The entrapment came along with an entirely new type of debilitating pain as well, and it engendered a fear in me that I had never experienced before. Combine this new set of issues with more pain meds, bracing that didn’t work, therapy that made things worse, mounting bills, and a vocational rehabilitation department that said I was beyond hope of finding work I could still do, and I was forced to pickup and move cross-country, back to the one place I swore I would never return to. Sigh. In the process I also caused the folding of the company I was a partner in, and massive losses to former customers.
That was years ago, now. It took me another 6 years, or so, to finally come to this place I’m at now. My nerve entrapment turned out to be just another downturn in this stupid neuropathy of mine, I had to learn to deal with it in both arms eventually, though the right is much worse, for the fact that I use it so much more. But I finally learned how to get it under control as well, mostly.
But living this new life, while the sense of accomplishment at having finally found a ‘normal’ I seem to be able to maintain is great, it is incredibly exhausting. But the ability to have some consistency has finally given me the ability to take on some responsibility again, without an acute fear of letting people down, and I jumped at the chance for a Sunday night responsibility at church, which I’ve managed to maintain, missing only one week in the past couple of months. I’ve also gotten all the background checks required to take on some respite care for foster kids. It’s the type of thing where I will probably only be doing it a few days a month, but it’s something. And it feels great to be doing some ‘real work’ again, especially since it’s work that involves kids.
But each new thing I take on, of course, means something else will go neglected. I’ve always been quick to do for others first, and the result of the new responsibilities has been neglect of my personal and home care needs. Fixing this issue will most likely require dropping some things, but I haven’t quite figured out what yet.
And now we’ve come to what I was meaning to write about today.
Not long after writing that first paragraph above, I sprung an allergic reaction to one of the meds I’ve been on for nearly 15 years, and my world kind of fell apart for a while.
It was hard for me to accept the need for medications in the first place, so hard, in fact, that I still have quite a bit of trouble remembering to take them on a regular basis, despite the fact that my pain levels soar as soon as they wear off. I have a mental block of sorts, that tells me that I should be able to handle the pain on my own, I’ve made some progress in training myself to still take the meds anyway, but I still forget fairly often. One would think, then, that the prospect of having to go off of one of those medications would not be panic-inducing, but one would be wrong.
These are not fun meds to take. One messes with my cognition, and seems to have caused some sort of rare water/sodium related disorder that has wreaked havoc with various body systems of mine, and I’m seeing my second specialist now to try to figure that out. The second, I’ve had a vague notion over the years that it’s slowly eroding my iq (though that could be pure paranoia). The third, seems to have recently started messing with my heart, and I just saw a doctor a couple of weeks ago that wants me to try switching to an alternative.
So I imagine it seems silly to people, having heard me complain about these meds, while still extolling their necessity, for me to panic when I find I’m allergic to one, but I depend on all three of these, in different ways, for this state of normalcy I’ve finally managed to reach. And having just recently achieved that, having them all three, at once, suddenly be in jeopardy, sent me into a type of panic I’m not sure I’ve experienced before. Especially when it became fairly clear that the one I was allergic to was the one of the 3 I didn’t have any documented problems with yet, a muscle relaxant for which I was under the impression I had already tried all alternatives for, with miserable results.
So, in any case, after several weeks of dropping doses, steroids, allergy meds, panic, various doctors appointments, various calls to specialists, and getting punted back and forth between various nurse practitioners, the reaction is still not under control. I have, however, switched to a new muscle relaxant, because as it turns out, there was one I hadn’t tried yet. I was not looking forward to the switch, because historically I do not react well to muscle relaxants, and you always have to give them a week or two, while enduring ridiculous side effects, before a doctor will agree with you that it’s just not going to work. This time, however, I have been pleasantly surprised.
I’m still itchy, though not nearly as much as before, and I’m hoping it’s just that the allergic reaction to the old muscle relaxant is still lingering. If it doesn’t go away, I’ll be left with an impossible situation, in which we don’t know whether it was one of the other meds I was allergic to after all, I’m allergic to the new muscle relaxant as well, or I’ve developed an inexplicable allergy to something else that’s consistently in my environment, even though nothing has changed.
My state of panic has subsided, and been replaced with a constant threat of going completely insane for no other reason than that prolonged full-body itchiness is impossible to ignore or come to terms with.
IF the itchiness does in fact go away soon, I may actually end up in a better state than that in which I started. But I’m loathe to say that: when you’ve been hit as many times as I have, hope is a scary thing.
I’ve been on this new muscle relaxant for 4 or 5 days now, though. So far I’ve seen no real side effects, except for a strange kind of lingering achiness in my forearms and hands, which may be attributed to the way I’ve been using them, and testing them for spacticity/tremor since switching meds. My normal requirement for at least 10 hours of sleep seems to have evaporated… I’ve been running on near exactly 8 hours of sleep per night, with one 45 minute nap, one day. I’ve forgotten a dose of this new med twice in that time (I know, pathetic), and both times I’ve been rewarded with severe pain and a most awful return of all the symptoms it’s meant to help, which has subsided within a couple hours of taking it again.
All in all, it’s looking like this new muscle relaxant will be better than the old one. Though it’s far too early to officially make that call, it’s been long enough to say that at least it wasn’t a horrible switch, and I’m okay on it, at least for now.
Amidst all of this panic and fear and mess of the allergic reaction, my niece and her man were hit from behind by a truck that was probably going near 100 mph, while riding a motorcycle, without helmets, and were both thrown. My niece had her back fractured in 5 places (miraculously, there was no spinal cord injury!!), lost a kidney (after enduring a surgery that was attempting to save it), bruised the other, and sustained a concussion and various cuts and scrapes. Her fiance broke his wrist so badly it took them days to find a specialist to surgically set it, and may or may not have had a concussion (he said no but everyone else said yes, lol). The other driver did not make it, as he took out a light pole and slammed through the wall of a building after hitting them.
I cannot convey to you how much it sucks to be stuck dealing with something as ridiculous as a med switch because of an allergy, when one’s niece is rushed to the hospital for this type of emergency situation. I was incapable of going to visit her in the hospital, but the reason seemed so very much less than adequate. I finally did go visit her the day she got released, but I was pushing it, as I had only had a few doses of the new muscle relaxant and really had no business driving that far unaccompanied… but I just couldn’t make myself wait any longer. Thank God they are both recovering okay, though their pain levels are through the roof and it will be a very long recovery.
I’m glad I got to go visit, finally, and I’m glad the change in meds seems to be working out… by the grace of God perhaps this change will end up being a good thing… I just hope this itchiness stops before I lose what’s left of my mind. Please keep my niece, Emy, and Brandon in your prayers. They will both be out of work for a while, and you know how fun it is to deal with insurance companies, hospital bills and creditors while trying to heal from major injuries.