Enjoy! Sorry about the forgetting to take my glasses off reflection thingy…
Love & Chats,
My, oh my. I have been ridiculously sore for the past three days. Ridiculous even for somebody who lives with CRPS and is accustomed to chronic pain. It’s weird though, I haven’t gotten upset at all. I don’t even feel the need to add a “yet” to the end of that sentence.
Perhaps I am still flying high on all of the lovely messages of support that I have received regarding my successful Sydney adventure… thanks so much for understanding how big of an achievement this was in my world!
Perhaps I am still sliding low on the pain of recovering from such an adventure. But… I don’t think so, not entirely.
By the end of last week, I was feeling much better. Much better than I’d felt at the start of the week and much better than I’d expected to feel a few days after being on an aeroplane. I felt capable of a little driving, grocery shopping and cooking, which are all great signposts on the way back from a flare. My hands were still giving me some visible grief, but no longer to a degree that I couldn’t work with.
On Friday, I had a Scenar session that actually made me feel a lot better. I’d also had a Feldenkrais session that day and was feeling super connected and back on my way to physical functioning. The Scenar session brought down the pain in my hands, considerably. A couple, if not a few pain points down. It was great! I was able to function for the rest of the day and cook and feel wonderful.
Saturday, however… Saturday was mean. I woke up in massive amounts of pain. Just…massive. Predominantly in my knees, then my hands, then my ankles, feet and elbows. My knees felt bizarre.
I’m very aware of what inflamed knees feel like. When I was about 15yo, I had a kind of “bout” of chronic pain in the form of knee issues. My knee caps didn’t fit into their grooves properly and my feet were rolling all wrong when I walked and the result was a lot of pain and swelling. This issue was eventually resolved over about 12mths through wearing orthotics and various physical therapies.
Did this prime my system for developing chronic pain later on? Maybe. Jury is still out on that one, but it theoretically makes sense to me…
Anyhoo…knee pain and me, we’re old frenemies.
This Saturday morning pain, this week, was like waking up with the ghost of those old knee issues. An angry ghost. A spiteful ghost. A ghost who has figured out that my system is primed for neuropathic pain now and mightn’t it just play with that a little while it’s in town…
The result of this is a sensation that feels like I have gigantic, swollen knees. Like, the size of volleyballs, that’s how big they feel. Like, a hundred times the size of female beach volleyball player’s uniforms, that’s how big.
It doesn’t feel like regular inflammation. It feels like burning inflammation. Hyper, hyper sensitive, burning inflammation. I can wiggle my fingers in the air around my knees and I swear I can feel them touching me. Touching me enough to hurt.
“My knees are super heroes!” I exclaimed, to my Prince, last night, “This is a super power, right? The most useless super power ever, but…still…super.”
Super, but kind of hard to stand on. This double whammy of a sensation that calls itself Inflamed Burning Bonanza is echoing in my ankles and those little joints in my feet. Also through my hands and elbows.
Whilst I am still recovering from my trip, in some ways, I am also thinking that this sudden onset, weird sensation flaring is probably also being influenced by the Scenar. It almost feels like my body just decided to overreact this time, as though it’s tired of the Scenar messing with it and just needs to throw a tantrum.
I don’t think this flare is a particularly good or bad sign, just a sign that things are happening and that my body currently interprets all change as an assault. I am still very hopeful that eventually my nervous system will recognise that Scenar is trying to help it and start to interpret the treatment in more helpful ways. After all, my system interpreted the treatment positively before reverting to its old habits, it can learn to do that for longer.
In the meantime though, I feel a little weird and lost. I have things to work on and I’ve been doing that slowly. I can concentrate a bit, but it’s not easy at this pain level, which is still ridiculously high but not at the worst it has been in the last 72 hours. I still have my pain management techniques; I’ve been practising Feldenkrais, stretching and soaking a lot to get through this time. My methods are less effective than they are at some other times, but still help a little to keep me grounded, focused and reduce the pain a smidgen, for a few moments.
This isn’t easy pain to manage, it bites my coping skills at every turn. I try not to bite back.
I’ve been keeping calm, reading a lot and reminding myself that this is temporary. Inconvenient, but temporary. Incredibly painful, but temporary.
I mustn’t forget, I used to be this incapacitated all of the time. Every day. For years. I’ve come a long way, I’m not about to give up yet.
Love & Patience,
My world is vague and confusing these days, much more so than I am used to. Where to start? Where to go? Where am I, even? I really don’t know.
It’s been several weeks since I began Scenar treatments. The experience has been rocky so far, however hopefully these setbacks are just necessary obstacles on the path to healing. The fact that my body is reacting is a good thing, even if those reactions are temporarily unpleasant. I have had some positive reactions and periods of pain reduction also, it’s not all bad.
I am currently dealing with feeling like a total stranger in my body. There is a lot of twitching to contend with and pain flares seem unrelated to their usual triggers. I am twitching more the more tired or weak I become, which also brings more pain, but it’s rather hard to tell whether the pain is a side effect of the extra pulses zooming about my body from the Scenar, or a run on effect from the twitching itself. A side effect of a side effect, that would make perfect sense in my body.
The hardest part of coping right now is the painbrain. I can hardly think at all. Concentration difficulties make everything difficult. It’s so much harder to manage things that I can’t quite understand or plan for. Right now, that’s basically everything.
The strangest thing happened after my most recent treatment, last Friday. The aim of the session was to help settle some of the twitching and concentration problems. I had started to feel a bit better within minutes of the session and felt like I could think a little more clearly as the day progressed. I also had a reduction in the twitches.
Despite enjoying the return of some thoughts, my mind still felt murky and as though the more I tried to concentrate, the less it was possible. Easy tasks, those were easier, but difficult things were seemingly far more difficult.
As the days have passed I have come to the realisation that the murkiness in my mind actually seems to have a murky shape. It’s as though I have most of my brain there, as I would normally picture it, but there is a blackness masking a section on the left side, at the front. If you divided my brain into quadrants, then the quadrant behind my left eye would just be a black cloud. I don’t know what this represents, or means, or if it’s just my brain attempting to create perception in a confused state. All I know is that things feel different in there and for some reason this is the most obvious description that I can give.
The pain has been on the rise since last night, despite my attempts to halt it’s growth yesterday. I am experiencing some CRPS symptoms that I don’t suffer from as regularly as I did in the early days. Much burning, regional joint pain, puffy skin, discolouration and increased sensitivity. These are the sort of flares that I had managed down to a minimum before commencing this new treatment.
I just really hope that what’s going on here is some sort of rewind. Like, my nervous system doesn’t know how to heal and so it’s peeling back layer after layer of the malfunction that has plagued me since 2006. I went through plenty of discomfort when I first started Feldenkrais and as it’s all brain training, I have a lot of faith that this is what’s happening.
It’s really hard to figure out what I am capable of right now. Many of the things that I regularly do to keep on track are impossible on more days than during my most recent recollection of normal. What I am now does not feel normal, even if it has been persisting for over a month.
I can’t rely on my ability to cook at the moment, it’s a sporadically possible task. This is frustrating me more than anything because my health starts to dive when I can’t keep on top of my diet and end up eating “sometimes” food more times than some. It’s a downward spiral. Before this recent spat of flaring, I could plan meals for the week and generally get through preparing most of them. Currently, I’m lucky to get through cooking on one day and be able to repeat such a feat within the week. I really miss the control that I had built up, all I can do now is what I can do, when I can do it. It’s kind of hard to make plans of any kind when in this position.
I have been terrible at communicating of late. It’s hard to communicate what I don’t quite understand yet. I don’t know how Scenar will play out for me, I don’t know how many dips there will be, I don’t know whether the outcome will be as positive as I’m hoping for. It’s a lot of stuff not to know and I just have to keep hoping.
Just have to manage the condition that I find myself in each day and keep hoping.
I miss being able to make plans and socialise. I had built up a lot of tactics for getting out and about despite CRPS, but those tactics only work when I am at a minimum level of functioning and that minimum level is way above my current one.
I miss being able to work on things that help me to feel productive and projects that I’d love to have running for Chronic Pain Australia that I simply haven’t been able to do. It’s hard not to feel like a failure, so I have to just keep reminding myself that everything is temporary and that I will recover from this.
Sometimes these symptoms feel like a hangover, in the sense that I did this too myself (agreed to try Scenar) and must bear the pain without complaint. This is a bit irrational, would I prefer to not try the treatment that might temporarily hurt but could potentially give me a future with far less pain? No. I don’t think I would. It’s just really hard to process thoughts right now.
This is a rough patch, this Winter, but it will lead to Spring. I am not very well right now, but I will be. I might even be better than I was before and that’s the light that I try to keep in focus when things get particularly tough. Everything is temporary.
Love & Patience,