I think I've said in a previous post that I'm lucky enough to not really experience dislocations.
Well...I was wrong! And I think I've been doing it a while.
I always thought a dislocation would be a dramatic event. Screams, loud pops, searing pain. I mean, when you see it happen on tv there's all sorts of drama and excitement, ambulances are called and grown men are reduced to tears.
My experience has been really rather anticlimactic.
Take this for example, I had my weekly session of Pilates on Monday as usual. I was feeling rough so my teacher told me to be particularly aware of my body and to feed back to her what was happening. I always start the session rolling a prickly ball under my feet and as I was doing it I noticed my big toe and side of my foot was quite sore, not agonising but noticeably painful. I would usually have just brushed this off as my usual pains but I told my teacher who suggested we have a look. Lo and behold my toe was dislocated. No trauma, no loud noises and significantly less pain than i was expecting. We strapped it up and I got on with the session. Not a big deal really.
Except it is. I mean, toes definitely shouldn't just dislocate (nor any other part of your body for that matter). Over the past few months I've become much more aware of my body and what is happening. I don't think these dislocations are new, I just don't think I had any idea that was what was happening before.
It might sound weird but there was something kind of comforting about my toe dislocating in front of someone else. I think people tend to think of you as a bit of a drama queen if you say "I think my shoulder just came out" and they didn't actually see it happening. To be honest I have sometimes wondered if I was just imagining it all. Even the closest people in my life have questioned me when I've said that I think something has dislocated, suggesting that it might just be a cramp or something.
I'm not trying to have a go at them at all, but show how with a condition that is so under-understood it is difficult to even know what is happening in your body, let alone how to treat it! I've felt the pain of dislocation before but just not even known to look for it.
To me it's a really positive step that I can now recognise a subluxation (partial dislocation) or dislocation. I can finally understand what is going on, and with understanding comes the ability to do something about it. Kinesiology tape, supports and even tight clothing are all tools in my kit bag now. I am finally learning how to help myself. Yesterday my body was all over the place but I knew how to support my joints in order to be able to get around without falling over and to minimise the pain. I mean, it still wasn't easy going but not long ago I wouldn't have been able to get about at all. I still have days that I can't get out, but I'm trying to ensure they become less and less.
I'm now really looking at what kind of wheelchair I want to get. Sadly I can't use the NHS manual chair I've been offered as it is just too heavy and clunky for me to manoeuvre either easily or safely. I think I'd like a manual chair. They are lighter (I couldn't actually get an electric one in and out of my car) and would also encourage me to be more active than an electric one would. What i would really really like to get are power assisted wheels for a lightweight manual chair, but sadly you are looking at quite a few thousand pounds there and my budget just doesn't stretch that far.
It's funny because my symptoms are actually scarier than ever, I mean nobody should see parts of their body just move out of place for no apparent reason, but I'm so much happier than I've been in a very long time.
Did I tell you I've already booked a holiday for June? I can't frigging wait!!! I'm going away with my lovely friend for a week to a quiet Cretan beach. We plan to sit, sunbathe and eat for a week. I cannot even begin to describe how excited I am! The place we are going to has the most amazing reviews and grows it's own organic food and produces it's own wine and olive oil...it literally sounds like my dream! I'd like to have my new wheels by then I think, that seems like a reasonable time scale.
I guess I should say why i am writing all these positive posts recently.
If I'm totally honest with you I feel like I've spent the last five or six years trapped inside a cocoon and now I've finally been able to break free. I know that mighty sound a bit wanky and dramatic but it's the only way I can adequately describe it. I want anybody out there who suffers from any kind of disability, who is in the throws of depression or other mental distress to know that it can get better. I'm not saying you are doing anything wrong right now if it's not getting better because every day you are fighting a war and you are a superhero. Every day you wake up and have to battle it is a day you have won, because you are still waking up. You are still going.
I can't tell you the magical solution to getting better. It's a cliche but everybody has to find their own way out of their hole, but there is hope, there can be a way out. You won't be fixed, but you can be better.
I still get very anxious at times, I still have mood swings and have down days. But in general I now wake up and see an opportunity. I feel pain and know that the severity will pass eventually, even if I have to remind of that myself now and again.
As much as I'm writing this for others, I'm also doing this for myself. I am fairly certain I will have flare ups and feel like I'm losing my mind again in the future. I'm sure I'll have weeks where my anxiety levels rocket again and I struggle to leave the house, but I want something for that future me to come back and hold on to. Something that might give me that little glimmer of hope that I'll have it under control again. Because if I can do it once, I can damn well do it again if I have to.
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