Everything Is Temporary

Dear Audy,

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,
Caf

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  • 4 thoughts on “Everything Is Temporary

    1. Della

      Dear girl, I’m so sorry! I hate that you are struggling so badly right now! Hang in there! What you are going through makes my sunburn (which caused some flaring in my arm and face) seem fairly minor. I can really relate to the brain fog, though I’m not sure I’ve ever had it take shape. That part is really interesting. Makes me wonder if a brain scan of the area would show anything…. Just a thinking out loud.

      1. Hayley Cafarella Post author

        Thanks, Della! The shaped fog has thankfully cleared up, but it was very strange. Probably just my overactive imagination attempting to make sense of things – I’m back to regular vague fog now 😛 I’d often like to see my brain under and FMRI when it starts to do strange things, I’d love to know what shows up! I hope that you are doing well, sending big hugs 😀 xoxo

    2. Emmie Dark

      Hang in there! I am fascinated with the way you picture the inside of your brain looking. I have never spent any time thinking about that, but I guess you have been forced to pay a lot more attention to your body and mind than most of us have ever had to. Is there a way to shine some light on the fog? To blow some sunshine its way and eat away at the edges? Regardless, hope it lifts soon.

      1. Hayley Cafarella Post author

        Hehe, it’s a weird thing to think about! I do, all the time, can’t seem to understand things that I can’t visualise. I like the shining light idea, I shall try that! The fog is back to regular vagueness now. I figure I could use some visualisation meditation and so I have been iTunes shopping for new guided tracks. Sometimes spending money makes me rehab better… Yay! xx

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