One of the most difficult things to do is to explain how you are feeling to someone else when you have no point of commonality.
When I tell someone my feet hurt - how can anyone else know what that means? Hell, I can't figure it out myself, how can anyone else work it out?
I've been reading as much as I can about peripheral neuropathy*, and inevitably they have diagrams showing the affected portion of the body coloured in shades of orange/red/yellow. Based on the most common way most people who have this condition explain it - that it 'burns'. So the diagram isn't wrong. It's just...inadequate.
Trying to let my spouse know how it feels, I've used a number of descriptions. To begin with, I told him it felt like I'd sat on my foot for too long, put the nerves to 'sleep' and it felt like they were 'waking up'. But they never 'wake' - they just continue to tingle, twinge, *burn*. To a lesser or greater extent, throughout the day.
I've been living with this...hell...for over 5 years now. I gotta tell ya, it's about to drive me to drink. Or something.
Various things have been suggested, and I have faithfully followed all of them. For a while one would help - a bit. Then it would get worse - again.
I had been taking gabapentin, largely to combat the SI nerve pain from the spinal column trapped in a disc. But this foot stuff...was different. Eventually it stopped responding to the gabapentin, and I begged for something - anything - else that was not a narcotic. I can't take those. I wound up on Dilaudid (artificial opioid) for a few years, until that simply didn't touch the pain I was feeling.
Eventually a pain specialist diagnosed peripheral neuropathy, and suggested Lidocaine cream, which helped. Some. I was told that Alpha Lipoic helped, so I got some of that, and it did help. Some.
Another pain specialist suggested Red Light Laser Therapy, Which also helped. Some. But ultimately, the pain was preventing me from sleeping - the pain was way worse at night than during the day. I started taking a nerve blocker, and had some relief from the nerve pain, but began experiencing excruciating muscle pain in my hips, glutes, and then down into the thighs, to the point I could barely walk. We changed nerve blockers. Same result. It took over a year to go through all of the options, during which time I also fell and had a brain bleed.
And the pain never really went away. The brain bleed was the shit cherry on top.
In desperation I tried topical ketamine. Which helped. But my pain doctor suggested I wasn't getting enough relief and I should try an infusion. So I did.
Which sort of helped, but not as much as I'd hoped. But being off the nerve blockers meant I saw some improvement on the muscle pain (hoping to increase that.)
The infusion hasn't kicked in properly - yet. And may not. I am poised on the brink of finding something that might actually help, or exhausting all potential treatments.
Because what I am finding out is that my body is experiencing multiple 'failures' in the way it works.
It was suggested I was not absorbing vitamin B. I did the lab tests, and oh hey, look at that - I can't properly absorb vitamin B 12 - and poorly access two other of the B vitamins. I'm now taking a different formula of a multiple vitamin B supplement - not a pain treatment (yet) - but a way to potentially heal the damage (some, at least) that has been done to the protective sheath of the nerves, causing the nerves to spark out of control, causing pain, inflammation and damaging the muscles that they are going to or running through.
On Dec. 27 I added another supplement that says that it is also needed for the nerves to get proper 'nourishment' and to help them heal.
Again, not a quick fix. I've been taking the Alpha Lipoic, but perhaps the 'wrong' kind. I need to dig deeper and find out more.
In the meantime, I was made aware of the level of anxiety I have been living with and that it might be a good idea to deal with some of the trauma I have been living with. So Wednesday I will have my first appointment with a counsellor.
I am beginning 2026 the way I mean to go on: try to heal this broken/bruised body, live a life with less pain and more 'comfort'. I have noticed that it doesn't seem to matter if I weave or not, so I will try to weave for an hour a day if I can manage that. At least get the dopamine/endorphin hit daily.
I will finish getting my studio re-arranged, then get back to the warp interrupted by the holidays and trying to clean up my studio, complete the article I started and then got stalled on.
In the meantime the next issue of WEFT continues it's way through the process. Yes, I have another article in that issue, and frankly I am very pleased with that one. I had fought my way out of the initial brain fog of the brain bleed, and for the first time since I fell, started to see a bit of light at the end of the recovery tunnel. I have no idea how much more I can - or will - improve. But with the unwavering support of my alpha reader and the technical team at WEFT - well, I hope to continue to exploring how to construct cloth and hone one's knowledge and skills in weaving.
I didn't die on Aug. 28, 2024. Guess I'm still here for a while longer. Might as well keep doing what I love to do, amirite?
*peripheral neuropathy is a condition that afflicts a large number of people, generally progressing to worse levels of pain and disability as the person ages. There are common risk factors, primarily diabetes, but also other medical conditions up to and including being treated for cancer by a chemo cocktail that contains Vincristine. Which I had. I had also some damage to my feet by practicing ballet, not just as a child, but as an adult student. Plus some other things that may be causing trouble, the solution to what I'm dealing with its not straight forward and may never result in a 'cure'. But as one of my health care team pointed out - if I don't try something, I will never know if it will help. So I keep trying...
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