If CRPS was an animal….. (tee hee)

If CRPS and it’s comorbidities were an animal, it would be big. It would have claws. And it would be dissociated from reality.

The animal doesn’t get a name. That would make it more solid, more ‘real’. It’s an ‘it’, a ‘thingamajig’, a ‘wossname’, a ‘doobree’. Besides, it has a tendency to change and morph over time.

The critter means well, but gets it wrong. A lot! It galumphs around trying to be useful but doesn’t listen properly and never double checks what it’s being told. It just grins in it’s despairingly cross-eyed, boggled brained manner and clatters it’s uncut claws across the shiny floors, totally unaware that it’s leaving huge great marks that we then have to try and smooth out.

Training it is a slow process. It’s not all here and easily distracted. It has a tendency to just keep ‘being’ in a little world of it’s own. Scattering sticky slobber as it skitters about the place.

Living with a huge critter that is dangerously built, but well-meaning in a miss-the-point, thick-as-two-short-planks kinda way is, well, it’s tiring. It’s wearing. Truly exhausting. And with it’s tendency to hiccup and burp it’s flaming breath at the most inopportune moments, no kennel will take it in, not even for a weekend break.

Keeping it’s attention on what you’re trying to say to it is tricky.. one shiny thing in the distance and it’s off again! So it takes constant work to keep grabbing it’s attention, distracting it from the shiny things, endlessly saying “Ooh look what’s that just here? Isn’t it interesting? Isn’t it pretty? Lets keep very still and quiet so we don’t disturb it…”        *sigh*

I’ve had my critter for many years and it’s improved a bit on the stuff I’ve been trying to teach it over a long period. Endless repetition and routine seems to help it develop a different habit, rather than listen to any reasoning I tried. But it develops new bad behaviours if something catches it’s interest, and then I have a new challenge once more. So I’m constantly having to do my research and learn about the incorrect behaviours to figure out ways to put them right, or at least improve them enough to reduce the hiccup and skittering damage!

Becoming a critter handler is… a surprise! It’s not a choice. It’s just something that happens in life to some of us, and they’re so big and unruly that we have to learn fast or flounder in the enthusiastic slobber. Ick! Most of us flounder for a while – going from a life with no critter… to a life with a huge galumphing critter is, er, well, it’s a bit of a shock to say the least. But like any other animal, it’s less about shouting at it, and more about working out how to make it listen and learn. Which is relentlessly hard work in extreme cases like this one, but worth it for the small successes as the gains are actually pretty large.

CRPS critter

Dear older me…

Hello me, twenty years older me (well done chick!),

Hope you’re doing okay today and that the pain levels are not too bad.

I’m writing to you from 2013, it’s April the 6th where I am on our timeline. Just one day until the Tai Chi tournament, eek! You know how it turned out, of course, where it leads (if anywhere), what broader meaning it has for my life. You’ve already walked that bit of the slow path, and I’m just embarking upon it. At the moment it’s all unknowns and possibilities to me. I can only imagine where it may take me, what it may teach me, how I could grow from such an opportunity of experience. I hope it still makes you smile looking back. We really enjoy those moments of ability between the many hours of pain and other symptoms, eh? Hope you’ve got some piccies to remember it by.

You’ll also know what happened after the masters dissertation: how long it took me to recover to be able to write the paper for open access, whether it made any difference at all, whether it helped people, whether it sparked further research and whether I got to do any more research. You know that at this point in time you were wishing a university would fund you in a flexible part-time home-based PhD. And I’m further back along your timeline wondering what might transpire from the investigations into local universities. Did you get to speak at the conference, by the way? Hope it went well if you did. I’m much better with my nerves than I used to be, but perhaps by now you’re even better. Bertram caused us to learn some pretty hoopy skills, huh?!

Bertram the Hungry Bear!https://elleandtheautognome.wordpress.com/2012/02/23/the-hungry-bear-that-lurks-in-my-coat-cupboard/

Bertram the Hungry Bear!

Funny really, I get to write to you in my future and all I’m writing about is the events during this very tough month! That must seem so limited to you, it’s just memories to you and yet they’re everything to me right now.

You might remember the concerns about this month. Too much mega-important stuff in one month. Concerns about the effects on health, on disability benefits, on my future ability to function with this progressive disease. By the way, did the DWP ever update their list of health conditions to include CRPS in a more modern multi-systemic understanding? It’s ridiculous how I’m about to be assessed by people with no knowledge of my condition and their official reference is only an understanding of the condition which is at least 19 years old! I’m scared of what’s happening. If this reaches you then I am glad you made it through the stress without the health losing the fight by itself. And if it doesn’t, then to whoever is reading this (is that you, Magic Dude? If it is, I love you, xx) know that I did my best to live every day with a smile, I always had a full heart, and I try to keep progressing overall even when the new symptoms keep adding to my load. I reckon I’m too stubborn to keel over though, so I think you’re me. Twenty years older me. Reading this with more knowledge, more experience, more symptoms and hopefully not any bitterness. I hope you can still feel the love, it’s what keeps me going now. The love of beautiful souls I know, and more that I meet along the way. Bitterness doesn’t get a look in when we’re full of love for the sunshine, the cups of tea, the good souls we know and meet as well as the various achievements along the way. It’s sneaky, it defeats the negatives in life by coming at them sideways and nudging them clean out of the way. It makes me chuckle ;-D

I’m hoping that you still find simple joys in life to make you smile. I know you’re creakier than I am now, that’s a given even despite the specific health issues that we have. But I know you’ll have continued to determinedly do some physio-ing, maybe you’ve even got better at Tai Chi and taken it places. Keep working at it, the Tai Chi and Qi Gong can keep you going, keep our nervous system calm and doesn’t it feel good to be able to do it?!

So what’s happening, chick? What are your current projects? Yes, I know you’ll have something on the go. Even if you’re housebound you’ll find some way to be useful during the functional-ish bits of your day. How’s the online stuff going? (Bet you’re still addicted to the computer window-on-the-world! 😉  ). How’re the nieces doing? (Bet you’ve still got their kiddy drawings stashed away and kept safe, you hoarder, you! tee hee). Hope you’ve had lots of fun with them growing up, being an Aunty is so special. Give my love to the twenty years hence version of Magic Dude, xx

Anyway girl, keep kicking arse, okay? You’re nearly 58 years young, and there’s plenty you can still experience and achieve even with the health restrictions. Keep being you, keep loving the world, keep acting daft and keep chuckling. I love you for being you, for being honest and for sharing your heart. Don’t lose that coz it makes you who you are and keeps you going. Keep battling girl, keep smiling, sending lots  of love and a big hug from the past. Oh and Magic Dude says “do you fancy a cup of tea?” 😉