CRPS Awareness photo challenge: fear and coping

Today’s challenge is to post a quote which has helped me cope. This little gem of a quote is from the book ‘Dune’ by Frank Herbert.

Fear is the mind killer

It gives us a choice in the face of bad things. We don’t have to accept being flattened by our circumstances. Changing our response to fear gives us back some control. We can feel our emotions but we don’t have to be overwhelmed by them.
The kind of life changes that result from chronic ill health have been described as a kind of drowning.

This quote suggests we can get through this. And we can. 💜

x

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CRPS Awareness photo challenge: regained

Suzy's photo challenge, 2015, day 11

Something I never thought I’d do again.

A bit tricky for me as if I find I can’t do something any more I don’t think “that’s it, I’ll never do that again”, – I accept that I can’t do that for now but I don’t write everything off entirely. That would be a very defeatist approach which I avoid because that’s enough to make anyone prone to depression. Besides, this neuro condition is all about change. Some changes can be positive. So there’s nothing important that I’ve written off that it turns out I can now do again during physio time. Except for… grating cheese and rolling pastry!

Heh!

The important things that I had to accept as written off are few but sadly they still stand.

But at least I can grate cheese again, right?!

x

Yes I still exist (honest guv’)

Imagine my surprise when I realised I hadn’t written a blog post since the end of last year! Lawks! I’ve been writing drafts when I can but poor ole Betsy the laptop has usually (always) got too many browser tabs open to cope that well! How is it possible that time passes by so quickly these days?!

I have been posting on the Facebook page though of course. Just never seemed to get to complete a blog post. The main reason has been lack of Brain. It pops in now and again but it doesn’t hang around as long as it used to. So I realise I need to change my way of writing to accommodate this change because mostly it’s resulted in me not writing. And as writing has become a love of mine I have been getting twitchy!

As I’m in the UK I was initially dealing with the tail-end of the continuing coldness through the Winter. Always a toughie getting through to the Spring, eh? Pain levels are up, natural vitamin D intake is down, relentlessness is the name of the game and by the end of Winter (well deserving of it’s capital W) we are begging and pleading the weather to bring Spring to us so that we can start recovering.

Winter was actually pretty mild here, but that just means that I wasn’t at quite such an extreme of my wits end, y’know? Winter is *always* hard. Springtime rocks!

I’ve been having some more health issues and I’ll write more about that in due course, but initially it appeared like it was a crazy-arsed allergic reaction to anything / nothing / everything which lasted all the time / 4 random minutes at a time / stopped for a few hours then came back with a vengeance. It was pretty weird. And yes it became apparent that it was so bizarre that it was reminiscent of my respiration issues a few years ago, so I knew it was a systemic overload which had to be stopped. Hence.. more on that in a separate post.

In March I said “yes” to a concert because I figured how could I not? I mean, it was in Winchester Cathedral, maaan! Beautiful! I didn’t realise just how cold it would get in there or that I should’ve dressed for the outdoors to better manage my pain levels, but fortunately they had some doghouse sized radiators to cuddle up to! So yeah, I went and saw Anathema perform acoustically in a gorgeous cathedral. It was stunning. Truly fabulous.

There are a few cathedrals around the UK who raise some of their funds through events like this so if you get the chance… dress warm, take a cushion if you need one, and because it’s acoustic it’s not like you’re gonna get your head blown off by mega-speakers so the volume is more compatible with sensitive ears (though if you’re unsure I can recommend the noise-reduction earplugs as they reduce the volume without muffling the sound).

Winchester Cathedral acoustic concert, Anathema

How stunning is this?!

 

I’ve also had the wonderful experience of two fellow CRPSers travelling from their home countries to come and visit me in real-live-3D, wow! That will also be a separate post because it was so fabulous 😀

Two of my friends got married and Magic Dude and I attended the sci-fi wedding in Star Wars fancy dress. Which I made with my own fair hands, I might add! My sewing machine and I are no longer nemeses, we have made friends and now I wish I had more time during which I am more functional to make some clothes. I now have a new creative project with the sewing machine which I’ll post about soon, too.

And for anyone wondering… I am dressed as Jareal (after the make-up has come off and been re-applied a gazillion times X-) ) who I found out about by researching the comic characters, and Magic Dude is dressed as Plo Koon who was briefly in one of the prequels (very briefly – when asked about his choice of wedding costume he said something like “you see him in one of the spaceships for a moment and then he dies”).

And of course that same month we had the UK government election. Voters were at a loss who to opt for if they even voted at all, many didn’t. The ‘majority’ on our ‘first past the post’ system was a shock. The majority means the party who got the most votes, even though the people who voted for them are actually in the minority of the voting population. Even weirder, our system is set up for the main parties and to keep smaller parties at bay. So this means that votes for the Conservatives adds up to more MPs from their party than exactly the same number of votes would get for another party. I know. Don’t ask. It’s so out of date. Anyway the shock factor was massive. No-one expected the same government to be voted in again. Not even the government peeps themselves! Many of my disabled friends were in tears at the news – welfare cuts have been horrific here with the poorest and most vulnerable getting hit multiple times through different cuts. The new welfare ‘assessment’ process is causing mental health issues to the extent that there have been suicides as a result. Before getting re-elected the government promised a further £12billion welfare cuts so you can see why so many people were in tears. I seemed to last a while in shock until Magic Dude’s Dad said something blinkered and I burst into sobbing and couldn’t stop for some time. The UN is now running a second investigation into the state of human rights in the UK to expand on their earlier investigative report.

So yeah, now I’m an activist. As it turns out. Not just a health activist any more, but an activist for the poor and vulnerable generally. I can’t do much in my state of ill-health but there are petitions I can sign, ideas I can bounce, people I can help. Being chronically ill isn’t going to stop me from caring about others and doing what I can to help reduce the additional shitstorms coming their way. Takes up quite a bit of Brain Time of course, another reason I have been so absent from the blogging as usually May is the time of year when I would begin to manage to write a bit more.

So anyway that’s enough for the body to have to handle whilst still working through the months slowly recovering from Winter, right?

But I’ve also been doing my usual full-on overdoing it for one day in April and one day in June at Tai Chi tournaments. As you know it takes months for me to recover from Winter and weeks to recover from each tournament, so the overlap of tournament with Not Recovered From Winter Yet is substantial. But I do it because I am so limited and restricted every day that pushing myself for two days per year feels worth it because although the aftermath is horrific the memories last far longer. 🙂

The April tournament this year was not the usual nationals in Oxford but my first ever Europeans. (The Europeans were originally going to be held in Latvia and so this was a last minute alternative and much more viable for me to get to).

I performed the Sun Style 73 form which is not a flowery style so I have to show my understanding and skill levels in different subtle ways, so that was my challenge. I also performed the 42 form (a tournament form incorporating 5 different styles of Tai Chi) so performing two different things at one tournament was also my challenge. I was a bit awed that my teacher had put me in the advanced/open section whilst I am still officially at intermediate level, I guess that was also my challenge. Hey wait a minute? How many challenges am I fool enough to take on at once here?!

I was amazed that I ended up with a silver for my 42 form (with two lovely ladies from the Netherlands either side of me with gold and bronze) and a good score for my first ever tournament performance of Sun. But more fabulous was the fact that this was the first time that I’d been part of a larger team. We’ve only had a maximum of 3 of us there before, but this time we had a whole gaggle of us. Some in beginner, some in intermediate and some in the over 55s. Everybody in the team was supportive and encouraging to each other, and lots of fellow Tai Chi-ers there were positive towards us too. In fact I was so pleased to find out that my teacher had been told that her team were notable for their friendliness and positive attitudes. What a fabulous endorsement for her first event managing a larger team. 😀

Tai Chi, 2015, European silver

The next day I met up with my lovely teammate who also has chronic pain and was staying in the same hotel. We have travelled our Tai Chi paths alongside each other these past four-ish years and we have cheered on each other’s progression with such joy because it’s one heck of an achievement in the face of our respective health issues. I hobbled from bed to lift, and from lift to comfy chair in the hotel lobby. I sat in one chair with my feet up on a second, had my hot water bottle under my legs, blanket over the top, painkillers in my bag and he had been his usual sweetheart self and got the coffees before I got there. Several hours later we were still there nattering away. Movement was not very viable for either of us and it was great to be company for each other through the pain levels.

My lovely Magic Dude turned up later with the wheelchair so that he could get me out of the hotel room the following day. We went into Oxford town and I went camera crazy as I always do when I actually get out somewhere! It was really lovely to get to see the city this year. That wheelchair makes such a difference! 😀

Oxford, bicycles.jpg

Pictures obviously included bicycles (and many many grotesques and gargoyles on the old buildings)….

Oxford, Bodleian library

…the inspiration for Hogwarts main school hall in the films (Bodleian Library)…

Oxford, street pianist

…and a pianist on wheels who was super-prepared for any sudden change in the weather! Totally normal, nuthin to see here! (Actually his piano playing was gorgeous).

The weeks between the Europeans and the June Nationals whizzed by and I was not in great shape healthwise (starting the tournament day with the screaming ouchies in my left leg at a mean 8.5/10, boo!) but I managed to get the pain levels down a bit to perform in Sun Style at my intermediate level and got a good score considering I was racing through the 5-6 minute form to complete it within the required 4 minutes *and* I added in an extra move by accident, too! X-) Being able to get a decent score with Sun style was my aim. And extra wonderful was that my teammate (yes, that same friend) got the exact same score for his multiple-style 42 form and so we ended up on the podium together with joint silver, wow! I can’t tell you how awesome it felt to be standing there with my friend sharing that achievement after coming such a long way together in our journey to help our health situations. There really are no words to describe the singing glee in the soul but it was flipping wonderful! He’s put in phenomenal work to get where he is today using both physical and psychological tools to find the best pathway round the health stuff. If anyone deserved to be standing on that podium it was him, and I found myself standing on the same podium with him which felt so perfect that I wasn’t on a different podium or even a different level – we were on there together. Go Team!

I also entered the advanced/open section with the 42 form, managed to fluff it up in amazing style, made it look like it was meant to be that short honest guv’, and ended my performance somewhat (a lot) earlier than I should have, har! A good score considering the extent of my very silly error, and some wonderfully positive words from head judge Faye Yip telling me to come back next year because I have “potential”, yay!

Oh and no wonder my body has been so screwed because the classes that I use for physio’ include adaptive Kung Fu in which I have got my red sash and first level brown sash this year too. I’m not entirely sure how I managed to achieve those! Although the brown grading was during the heatwave and my legs were glad of it even if my nervous system wasn’t! My body needs more tiiiiiime, man!

And yet I posted on my personal Fbk wall the other day that it would be nice not to have to deal with people telling me that I am “lucky” to “not have to work” / “get to stay at home all day” because I get those sort of comments as a result of how people see me when I am out of the house i.e. looking ‘normal’ because I am doing my physio’. If only they could see me the rest of the day eh? Needing a wee and not being able to get to the loo in the adjacent room, wanting a cuppa and having to wait several hours til Magic Dude gets home and can make me one. Ah well, people just don’t get it eh?! 😛

And then we were getting the house ready to put up for sale. It sold at the end of July and we’ve been searching for our new home ever since. Not sure how much longer our buyers will hang in there but if they pull out it’ll sell straight away again. The market here at the moment for the main price bracket of £120-210k (your basic 2-3 bed homes with the usual squished space that we have in UK houses) is basically at about 15 buyers per house. Apparently we wouldn’t have the same extent of trouble if we had £210-250k. Oh if only eh?! Har, dream on!

We need some more space y’see. I moved into his one bedroom place and so nearly everything I own has been in the loft for the last 5 years. If one of us wants to do something creative there’s no space to set it up and leave it so most of my physio’ time is taken up with getting everything out and setting it up and then putting it all away again afterwards which doesn’t leave much time for whatever the activity in the middle was supposed to be (I want to get painting again). So yes we need a little more space but also….an enclosed garden. Currently we only have an open outdoor space between the house and the pavement out the front. Apart from how nice it would be to have some private space the main reason is (dahn-da-da-daaaaah…) we wanna get a dog! But the housing market is slowing down for chrimble so I’m expecting our buyers to pull out sometime soonish and that we’ll be re-selling in January when potential new homes start to show up in greater numbers.

So with fewer house viewings taking up my physio’s I finally have some time again, wheeee! Except for how that creative project I mentioned will now take over any available physio’ time. I look forward to sharing that when all the material has arrived. 🙂

Anyway, now you know I’m still here.

Phew! That was a heck of a catch-up!

Loves xx

Send in the clowns

Well here we are again. Well done people, you’ve traversed another year. Whatever you’ve been through this year, the ups, the downs, the wibbles, you’ve been awesome. You’ve hung in there and here you are now reading about my own little adventure new years eve.

I went out today to run some errands. It made me realise how long it’s been since I drove myself into town for a physio’. I was actually a bit nervous about going so far from the house on my own with no-one to meet there ‘just in case’. But it was a successful trip. The festive market has gone so there’s more pedestrian space, and the multitude of shoppers has thinned back down to a more usual amount so I didn’t have to wait in any long queues, hurrah!

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Christmas lights

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I bought some Christmas cards for next year (I know, organised eh?! hehe), a notebook for my upcoming free online course on medical neuroscience and some beer for Magic Dude to swig at midnight tonight to see in the new year with me. But I also grabbed some unexpected additions: some cute lights to hang from the mantle piece and a reindeer decoration for the Christmas tree. Oh, and obviously I needed a Batman biro with multiple colour options. And a glittery travel mug. Obviously. 😉

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New Years Eve buying

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Living with chronic illness does tend to be a bit of a circus at times so new years eve is often pretty hard for many of my fellow patients out there. We tend to find the laughs, silliness and smiles where we can but some times are harder than others. Which is why I want to share this…. I fell about laughing when I finally saw this following little ditty last night which may become my theme tune for 2015….

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Imagine leaving a doctors appointment where we’ve seen a practitioner particularly lacking in knowledge specific to our conditions – what a circus. What better to cheer us up than to sing quietly to ourselves as we leave…”dah-dah-daddle-uh-da-dah-dah Circus…”! By the time I get to the bit about polka-dots I expect I’ll be chuckling. We’re stronger than we think.

Sending best wishes for the new year to you all,

Love from me

x

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P.S. Here’s a version in multiple languages. Just because. 😉

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Inspiring addition

I was window-shopping online during a time of brainlessness and I spotted a cushion cover which made me feel inspired.

We are often told we “can’t” do things and we soo often feel that we “can’t”, especially as we have a tendency to compare our abilities with that of our former selves. Change over time happens to everyone and we are being rather unfair on ourselves by comparing the me-now with the me-in-the-past, and extra unfair by focusing on what we can do instead of who we are. Change happens to everyone in various ways. And yes our health changes can be pretty massive, but the way forward is helped enormously by the way we view things. Our reality involves our perception of it. And perception plays an extra big part for us when it comes to coping skills and finding the positives.

Being able to turn those “can’t”s around into “can”s is a truly fabulous feeling. And feeling inspired is often such a floaty-light moment of gloriousness where we rediscover our smile, our hope, our confidence, our determination. It is not to be underestimated or neglected.

So I bought that cushion cover for myself. Every time I looked at it online I felt inspired so bringing that inspiration into my home where I could see it every day seemed eminently sensible!

It arrived yesterday, having travelled all the way from Australia, thanks to a shop on eBay…

Inspirational cushion cover

And the monkey was a pressie from, and created by, one of my friends from school so he makes me smile too. He and the cushion are a pretty good pairing!
(Thank you Jaime, he’s been enjoying sitting on the chair by the window in the front room). 🙂

What inspires you?

Is there something you could move to a more prominent position so that you feel lifted when you most need it?

x

Totally Tubular (Dumbarse) Tuesday!

I just found this draft from last winter and decided to finish it off and share it.
As you’ll see… you’re not alone with the Silly Brain stuff, but more importantly this post is about change being the only certainty with these conditions and crucially.. change can go either way.

So Keep On Keeping On is definitely the way to go. Sometimes we can be surprised by some good changes. 😀

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Last winter:

I started the day like a boss dumbarse.

It seemed okay at first: Magic Dude got up for work at Stupid o’Clock and I actually went back to sleep. Sleep! Awesome!

When I awoke I was lying there thinking I should get up when there was a knock at the door. I made it downstairs and stared bleary-eyed and incomprehensibly at the woman on the doorstep. She’d come to read the electric meter. Fair enough. I then went to look at the time… Ohgoodgrief it’s 10am – 30 minutes to get ready and leave for Tai Chi, eeeeek!

Yes, it’s Totally Tubular Tuesday! Which means that I have two physio’s today, but that they’re cool physio’s that I’m super pleased to get to do – Tai Chi and adaptive Kung Fu.

So I managed to throw clothes on and and shove my contact lenses in. Ruuuuush!

Then I Iooked at the time again.

It was 9am.

Dumbarse!

So I carried on getting ready at a more leisurely pace. Today is the only dry day for a while so I had to hang some washing out. This is the worst day I could possibly have to do it on as I have both physio’s taken up with my classes, so it means that hanging washing is extra activity which is baaad news for the pain levels. And as it’s winter here the pain levels are already dreadful as the cold takes hold.

But I did it. Hurrah! Washing hung outside. Breakfast eaten. Multiple tablets and supplements taken. Fluids imbibed. I even wrote christmas cards for my Tai Chi and Kung Fu classmates.

I got to Tai Chi on time. Or so I thought. I walked in and everyone had started already. I hate being late for anything. I can’t do the Chi Gung any more as this med’ doesn’t stabilise my ANS as well so I get too faint to Tai Chi if I do the Chi Gung. So I plonked myself down and did some stretches through the standing still bit, then I joined in for some Chi Gung arm movements whilst sitting down to reduce faintyness.

Then we all performed the Yang style 24 form together with the official music. I was trying to include the corrections I’ve been learning but my brain is always off after a bit of Chi Gung so it’s guaranteed to be sub-standard the first time!

Then I hurriedly swigged some weak tea from my flask and poured it down my tee-shirt. In front of my teacher. Awesome.

The rest of the lesson was dedicated to brushing up the Sun style 73 performance. Apparently I have claw hands today. *sigh* Blummin’ dystonia! My teacher was showing me how to smooth out one particular move. The correction is reeeaaally straight forward. I know it is. And yet I found that without the move beforehand I could not work out how to do even the basics of the move we were working on. That’s not too unusual for me, but then I found myself watching her show me the move several times in a row and I realised that I did not recognise the move at aaaall. I had no knowledge of what she was doing. I knew I did really, somewhere in my brain, but it’s the first time I’ve not been able to access something like that even when it’s happening in front of me. It was not an enjoyable CRPS Brain moment. 😦

you're always on way way to someplace more

But you know what? This is just part of that thing called Shit That Happens. So all I can do is acknowledge the brain anomaly and move on. No need to dwell on these things as it will make me sad. Move on. I’ll know the move another day.

So I practiced what I could so that I got some activity for my body during my allocated physio’/Do-Stuff time.

Then I got my christmas cards out and found that I’d brought some of the Tai Chi cards and some of the Kung Fu cards to the Tai Chi class. Ugh! Stoopid brain. It probably looked like I’d forgotten to write cards for some people. *sigh* Hopefully they know me better than that, though. 🙂

Then… gosh I’m so classy…I choked on my lemon barley water and coughed a lot, bringing my ‘happy christmas’ convos to an abrupt end. Waving goodbye to people I got outside and proceeded to do the whole whooping cough thing whilst bringing up scrummy mucus into my mouth. Yum.

This is all fairly typical for a Tuesday, I really struggle with the two classes in one day, but they are both important to me and I do them during my allocated physio’ time so they are not extra. (And usually there wouldn’t be washing to hang up).

So, off home for 6 hours of attempted recuperation with fluids, hot water bottle, cushions to prop me up, blanket etc, then on go the compression stockings again and back to the martial arts gym. Double checking the christmas cards before I left.

When I arrived home from Tai Chi I found that the washing had been rained on and was now sopping wet again. All in-keeping with the theme of the day I guess!

And yes I still went to my adaptive kung fu lesson. I made it through despite nearly passing out whilst standing still and holding a target up for someone else to practice kicks past. Standing still is blood-pooling-tastic eh?!

It may look like I'm doing nothing but

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Today:

Now that my teacher is back from the Tai Chi World Cup in Taiwan and has finished winning gold and silver medals for a while she has got stuck into running a new class which started today. And yes, I was there for the first of the new class which is all about strength and conditioning.

As any pain patients know – pacing is the key to a lower pain baseline, and as any hypermobile patients know – pacing is jolly useful but strengthening muscles to help reduce the bendiness is pretty awesomely handy.

So that’s what I’m working on: strength and conditioning the parts of my body that I a) need to improve for Tai Chi tournament purposes, b) which will reduce various hypermobility issues and c) which is all done within my daily paced physio’ time so that I can do so without exacerbating my pain baseline.

spoons

I wrote a while ago about how the med’ I’m taking to help stabilise my Autonomic Nervous System (ANS) issues somehow remained pretty crap until this Spring despite starting it in the Autumn before. I don’t know why that is but I certainly wasn’t complaining when I could not only join in with the Qi Gung in class again but I could even shut my eyes without immediately keeling over. Wow! What an improvement! The dystonia reduced in severity too. It’s always worth talking to your doc’ about any tweaks or alternatives because tiny changes in med’s can result in substantial improvements in our uber-sensitive bodies.

This year I’ve worked at the Tai Chi and covered some of the lessons as substitute teacher that I would usually attend as a student as part of my physio’ anyway. (A physio’ spent teaching gives me a different insight into my Tai Chi and is a whole other learning curve. And definitely a challenge)! I’ve also worked at the adaptive Kung Fu, trying to adapt as little as possible as it’s within my daily physio’ remit but there’s always odd little aspects that I need to be careful about (e.g. when my heart goes dysrhythmic, when I get faint and working round issues such as my degenerative hip joints).

But as you can see from my draft above that I wrote last Winter… I am doing better than I was last year in some rather important aspects.

set backs and come backs

Admittedly my proprioception still goes awol and my teacher has seen me pour drink down my top many times. Even as recently as Thursday in fact! Ah well. I still have all the same issues with my health, and many are worse because that’s just the way it is, but that doesn’t mean that I can’t make improvements in important ways. And it certainly shows that my determination to keep at the physio’ pacing keeps paying off endlessly.

So finding my draft from last Winter and re-reading it was a pretty good experience for me. If you journal you’re probably telling me through your computer screen that I should try journalling more often eh?! 🙂

My determined physio-ing and my med’s tweak have helped me to build up to working on stabilising the most hypermobile areas in my body. It would be awesome to experience less subluxation of my shoulders and sacrum, and if I can do the strength and conditioning exercises as a tougher physio’ each week then my ANS should be more relaxed about the lesser activity the rest of the week. Or at least that’s what I’m hoping based on my past experience.

I’ll keep on keeping on anyway. Winter is not quite setting in here yet, the changes in weather are wreaking havoc with us Painies, and when Winter finally sets in our pain levels will rocket even more. So I need to be on top of my physio’ schedule to make it through to Spring with as few setbacks as possible. I don’t know where I’m headed so it’s all about doing the best I can for my health. I guess I’ll just follow whatever path turns up under my feet. And if I go backwards that’s all par for the course, it’s just setting me up for another comeback, right?

Feeling determined!

look at how far you've come, rather than how far there is to go

x

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The Elusive Spoon

This is written for Dysautonomia Awareness month and is spoon related as a result of Christine Miserando’s well known “Spoon Theory“. This is a bit of a day with a CRPS & Dysautonomia patient…

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Oh no, really? Morning already? How did that happen?! I mean it’s not like I got any actual quality sleep or anything! Ugh!

Scrunching her eyes up and contracting her muscles to pull herself back under the covers Elsie tried to come to terms with the time.

Yep. There’s no getting around it. It’s definitely morning and if I don’t get up I’m gonna be pushed for time.

Flopping the covers back she raised herself up slowly then waited for the spots of light to stop dancing in front of her eyes before attempting a full upright position.

Scooping up a pile of cutlery next to the bed, and then returning one to the bedside cabinet, she reached for her mobile phone to check the time. 9.30am.

Oh no, I’ve only got an hour!

A brief look of panic crossed her face before being replaced with one of intense determination.

“Right!”

Pushing herself up to standing she moved stiffly across the bedroom, being very careful to step overly widely around the corner of the bed.

No bruise that time. Hah!

Slowly becoming a little less bent over as she walked to the bathroom, she piled the cutlery on the windowsill as she reached for the toothbrush.

With clean teeth, washed body, brushed hair and an empty bladder she made her way back to the bedroom. A little more alert and minty fresh than before. A small pile of cutlery now also sat on the bathroom windowsill but the remainder was clutched in one hand and got deposited on the bed as she found underwear, tracksuit bottoms, a couple of layers and her handbag. After dressing she placed a couple more pieces of cutlery on the bedside cabinet, before stuffing the rest in her bag with the mobile phone and heading off downstairs.

How am I doing timewise? Checking her phone again. Pretty good. Still time for a proper breakfast. On went the kettle, into the microwave went the porridge, and she started counting out supplements, vitamins and medications into a pretty coloured shot glass. Tea made, porridge mixed with scrummy cinnamon, tablets collected together, hot water bottle made… all went into the living room and she turned the TV on for company before collapsing on the sofa.

Placing the hot water bottle under her legs and pulling a nearby blanket over them she grimaced a little but only for a moment. Then that look of determination returned again. Reaching for her bag she removed some of the cutlery, placing it on the table.

Hmmmm, this bag’s getting light already.

Half an hour later and once again standing upright, Elsie makes a soft drink to put into the bag along with a bag of ginger, half a bag of salted pumpkin seeds kept shut with a metal stationery clip, and her collapsed practice sword.

“Trainers! Can’t be forgetting them now, can I?”

I wonder if my neighbours can hear me talking to myself? Hehe
Coat, bag, keys, flask, mobile, trainers, insoles…. yep I think I’m ready.

Reaching into her bag she removed several items of cutlery and left them on the coffee table before locking up the house and settling into the car for the short journey into the outskirts of town.

As she pulled up into the car park at the industrial estate there was a single piece of cutlery lying on the passenger seat. After finding no parking spaces and all the disabled bays taken she had to use a space outside on the main road to walk from. Before leaving the car she placed her disabled parking badge on the dashboard and a second spoon next to the first and then walked to a business unit where she greeted classmates and teacher and started industriously putting on her trainers and doing some stretches that have a tendency to make other people’s eyes water. But that’s hypermobility for you!

After 15 minutes of calming Chi Gong she felt more separate from any stresses and strains but had to drink some of her lemon squash to try and reduce her body’s urge to faint. Some glugs of fluid later and the class were moving in time to the music for the Yang style 24 form of Tai Chi. It’s the form often seen practiced around the world and it felt good to go through the moves together as a group and to feel the body responding to what was being asked of it. The familiar moves being reined in by Elsie so that she doesn’t topple over as often nearly happens early in a lesson.

Good thing the teacher knows about me or I’d have a list of corrections as long as my arm!

While the others were chatting about the moves they’d just worked through, Elsie quickly ate some ginger to try to reduce the nausea, had another couple of swigs of fluid to try to reduce the faintyness and then she expanded her practice sword to it’s full length to start some individual work. The class numbers were small today and there was a little more space to wave the sword around!

It felt good to work through the sword moves she knew so far, but after some corrections from the teacher the fluidity and meaning of the moves increased and it felt great! No, it felt awesome! How wonderful to be upright and moving with purpose. She knew the moves could look beautiful if she worked at it hard enough, so while the lesson lasted she went over and over and over… just getting the moves more clearly etched into her head and into her ‘muscle memory’ for an even better foundation to work on. Fantastic!

When she returned home she found that getting out of the car was already difficult. Walking as well as she could she went indoors to put the kettle on again. The pain was already rising. She could not stand long enough to make any food for a midday lunch so she grabbed a banana and a protein flapjack. With hot water bottle and a cup of tea she returned to her spot under the blanket and this time she lay down flat to try to help her body recover from the near-fainting that had come on.

Reaching for her bag she removed several pieces of cutlery and looked at what she had left. One piece for everything she did. Starting with a finite number she had to lose a spoon for every move she made. One for getting to the bathroom. One for getting washed. One for getting dressed. They go down in number so fast it makes her days very tricky. Carefully placing her remaining spoons on top of her bag she figured she might have enough to get ready for bed later, but not enough to get any food.

Sighing she lay back and waited for the heat of the hot water bottle to help her muscles relax a little, for the pain levels to reduce a little from the high levels to something a little less screamy.

She knew she’d not be able to move for several hours.

Good thing I forced myself to the bathroom already or I’d be dying for a wee by now!

Resigning herself to the hours of pain ahead she smiled to herself.

An hour ago I was doing sword Tai Chi! What an achievement!

She grinned and adjusted the position of her legs. Then turned on the laptop to see how her fellow patients were doing that day. Her brain was not up to much at all, but at least she could say hi and check everyone was okay.

She settled in for the long haul. Distraction would help pass the recovery time. Then it would be time to physio’ again. That’s when she would decide what to do about not being able to get food. Maybe one of those vitamin powdered drinks, she could possibly mix that with milk before running out of spoons entirely and ending up in a mega-flare.

We’ll see. That’s later. This is now. And right now I’m chuffed that I learnt more in my physio’ class today.

***

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Spoons are more than cutlery to us ‘Spoonies’, they are our metaphorical spoons that help to describe our medically induced limitations to others. We try to make spoons last longer, try to get the most value out of each one that we can. We desperately wish we had more of them to be able to function a little more during each day and often send virtual spoons to each other in solidarity for our daily challenges. Sometimes we ‘borrow’ spoons from the next day, a kind of advance on spoons that we will severely pay for later in health repercussions.

The 'Ishishara Spoon' created for one of Jasper Fford's books

The ‘Ishishara Spoon’ created for one of Jasper Fford’s books

Picture source – no longer available but it was a challenge on Jasper Fford’s Facebook page to use various images. He was intrigued to find out what we might use them for!
You can still see this artwork on his webbie here though. 🙂

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 x

National Poetry Day in the UK

The Now

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I’m having a transition

I don’t feel quite right

It’s not bad

It’s just…

The full extent is not yet in sight

 .

I’ve tried to put it into words

But they only show the edge

The words are right

The truth is there

But I can’t see past the ledge

So

What I think is happening

Is only half the tale

Or less maybe –

I just don’t know how deep the scale

 .

I think I’ve passed another milestone

Or I can feel it by the way

I yearn to peek

And see what’s what

But a day still lasts a day

 .

I cannot rush to find out

I can only live each day

The Now

That’s when I like to be

No peering in the grey

 .

This trembling within myself

Has not yet reached my brain

The body knows

But I do not

And

I must not entertain

Speculations

That might not help

They are not my realm

The Now is home

The Now is mine

And I am at the Helm

.

x

Interpreting new medical information

How do we find reliable information and not freak out when given a new diagnosis?For those of us with multi-systemic conditions new diagnoses are pretty much par for the course, but our laid back attitude to new conditions is won from experience.

Weirder still is how we also have to deal with no clear diagnosis as this often means the continuation of confusion in the medical practitioners working with us.

This year I’ve experienced both!

I’ve been to see the UK’s top autonomic dude and been told I have POTSy stuff going on but not enough to be diagnosed with POTS. This is confirmation of autonomic dysfunction and how in my body it is also wreaking extra havoc with near-fainting (near syncope). Not that less specialist practitioners really know what to do with ‘autonomic dysfunction’ or what array of ‘interestingness’ that can result in.

I’ve also been to see one of the team at the UK’s top department for hypermobility and been told that I have partial hypermobility. After all my years working hard on my legs (for example I no longer have to work my kneecaps until they loudly *bang* back into place)! I am still very hypermobile in my core, though. This explains why even my breastbone has been subluxing in recent months. (Subluxing is a patient shorthand for sub-luxation which is when joints pop out and back into place, it’s a partial dislocation rather than full-on dislocation/luxation). So I received some instructions to get referred to physio’ rather than any diagnosis which would be clear to other medical practitioners.

Frustratingly the hypermobility expert noted that she didn’t see any signs of CRPS in my skin at all. I wrote to her asking for this to be amended in her report as although a CRPS expert would know that whether any ‘signs’ of CRPS are present or not at any given moment in time has no bearing on whether that patient has CRPS or not, she sadly did not deign to a) respond or b) amend her report. So her report effectively includes what looks like a query over my CRPS diagnosis which only experts would realise was unfounded and any other medical practitioner would actually take that questioning of the diagnosis on board. *sigh*

The latest info’ arrived long after the hypermobility appointment as a result of an x-ray which was requested by the expert to ascertain whether I had shallow hips. I’m going to use the resulting letter to show how I choose to filter search information online.

First rule of searching online: searching individual terms is handy for a clearer understanding. I don’t want to find lots of vaguely or potentially related information, I would have no idea whether what I was reading would be related to my personal situation or not, so first of all I only want to find the exact meaning for my body.

Second rule: use a reliable source with a clear explanation. Once again.. I want a direct translation, not a load of vaguely related gumph that might not even relate to my own personal situation. So no wikipedia, no tangents into something that includes the terms I’m searching, simply a good medical dictionary or medically grounded information website.

So, here’s the info’ from the consultant’s letter..

Letter, hip x-ray, part 3

 

Essentially I want to translate this key bit of a sentence:

“…minor dysplastic changes with minor degenerative changes in her hips.”

First of all – note that “minor” is used in both cases. Long-term chronically ill folk usually don’t panic anyway, I mean, what’s the point right? I wrote a post a while ago about the time I visited a cardio’ doc’ and he said he could think of nothing that would make my permanent near-fainting anywhere near bearable or functional except for a pacemaker. Even in a situation like that it’s a case of allowing the emotions to pass and then getting back to life. We don’t do our thinking when we’re emotional because we recognise (from that bumpy old road of experience) that our thinking is pretty poor under those circumstances. It’s just the way the human body works so don’t worry about that happening, it’s just the way it is. And anyone with autonomic issues knows that when the ‘fight or flight’ kicks in then we’re not to even bother thinking at all, coz that mechanism means we don’t have full access to our higher functions anyway. So, even if you receive a shock diagnosis…. allow yourself time to calm your nervous system down. Stop, sit, have a cuppa and don’t try to figure out what it might ‘mean’ because our brain is not equipped to do that until we get calm again.

So yes, back to looking at how to decipher medical info’, which we only do when we’re feeling calm…

“Minor” sounds positive, “degenerative” can sound scary. It would be quite natural to skip past the “minor” and focus on the “degenerative” but it’s unhelpful and inaccurate to do so. Once we allow our emotional response to choose the focal point then our imaginations start getting involved. Our imaginations are amazing things, that’s why some of the scariest horror films are the ones that don’t show you what is actually happening to a character at the time – because it’s way scarier to let our our imaginations do what they do. So leave the imagination out of it. We simply want facts. Just a translation. Keep focused on that because it is key to dealing with medical information in a manner which is most helpful to our health (both mental/emotional and long-term physical).

The initial question is: “what does dysplastic mean?”

We can type “dysplastic” into our search engine, but then we also have to remember that we need a reliable source with a straight-forward translation in medical terms so adding the words “medical dictionary” or “medical terminology” or something like that might help us. But even then the search will still find case studies, specific types of dysplasia, maybe even hip dysplasia which sounds so appropriate that it would be tempting to follow one of those links, but I just want a meaning for “dysplastic”. That’s all. I don’t want to read stuff which may be medically relevant to the subject but not actually relevant to my health or my body.
I can read around the subject after I have a basic understanding.

It is important to notice here that the information that we choose not to explore is at least as important as the information that we do choose to read. Restricting our initial reading reduces that chance of reading things which don’t actually directly relate to us and which might make us worry unecessarily. Choosing to look after our mental health and emotions at this stage is as important as finding out how to look after the physical health issue we are looking into. We deserve to be able to work through new information in a manner which is informative without adding extra layers of potential distress.

So I ignored pretty much everything that the search brought up because it wasn’t specific enough. What I did take on board was that it is a very vague term. “Dysplasia” bascially means that something is not entirely ‘normal’. It simply means that there is a standardised ‘norm’ for things and we do not fit that norm exactly. So in that letter I’ve basically been told that there are changes which have resulted in my hips no longer being described as ‘normal’. That is all I need to know at this stage – it is vague, and my hips are just different. But vague is better than wrong, so my careful filtering out of lots of info’ has done it’s job…

Many of the links included references to moles and cancer, imagine what could have been taken away from a search on “dysplastic” if I hadn’t been so determined to simply find a translation. Anyone in this situation could have started worrying that the changes are really scary, it would have been all too easy to make assumptions about what that letter meant, about what’s happening inside the body, what it might mean to future health etc. So yep, translation only – avoid all round-the-subject information until you are sure what exactly has been reported about your own personal body.

So, “minor dysplastic changes” meant that my hips had developed something different from the norm. The next bit says there’s some minor degenerative changes, too. But that’s it. There is no other info’ there to make it any clearer. And when you live with a complex condition where many possibilities exist then there’s no point worrying about anything unecessarily. Whatever is, just is. So all I want is some more info’ to clarify what I’m dealing with because key to working with this is to know what I’m working with, of course!

So I asked my GP for more information. She’s used to me asking for more info’ and she knows that I ask simply because I want to understand how to do the best I can for my long-term health. I live in the now, but that doesn’t mean that I don’t look after my body for my future.

The extra info’ the GP gave me is from the radiologist and is less of a potential emotional minefield as it simply requires translations of terms for parts of the body…

Letter, hip x-ray, part 2

The “femoral heads” are simply the top of the thigh bone (femur), and “acetabula” is the rounded bit of the hip joint that is part of the pelvis (plural of acetabulum so it refers to both hips in this case). Simple searches can uncover this information as long as you continue to refuse to get led astray. ‘Just the facts, ma’am, just the facts!’

“There is minor uncovering of the femoral heads but the
acetabula appear well formed”

So, interestingly my hip joint is not too small, which is what usually happens with dysplastic hips (see how easy it would have been to read information which is relevant to the words used, and even to the condition in general, but incorrect for my own body). So as the tops of the thigh bones are not fully covered by the joint sockets then I guess they must be too big, or is that another assumption?! See how easy it is! As my fabulous fellow blogger Isy Aweigh pointed out it could alternatively be as a result of my ligaments being too stretchy to keep things where they should be (totally viable in my partially hypermobile body), or it could be that I have a strangely chunky amount of cartilage in the mix, or even a mix of all three of these things. I don’t know because the information doesn’t specify. Whatever it is, whether it is a result of the changes over time, or whether the changes are something else and I’ve always had abnormal femurs/ligaments/cartilage is not something which is explained here. So that is unknown because you can’t assume anything when it comes to your health! Though the hypermobility expert has interpreted them as “dysplastic changes” in her letter so maybe she was privvy to more information than the GP and I, or maybe she made an assumption, who knows?!

The last bit of the radiologist report reads:

“Minor degenerative change noted with some sclerosis. Joint space is preserved.”

It doesn’t answer the questions I would have as a non-medically trained patient… ‘degenerative change to which bit?’ Don’t be afraid to ask your GP to explain things to you. And don’t be afraid to ask them to get more information from the expert in question if the issues are not fully explained.

In this case my GP translates the radiologist’s report as the tops of my thigh bones having the degenerative issues and my joint sockets as being a-ok. My wonderful nurse friend has also said that if it doesn’t specify where the degeneration is then it means that it’s in the joint space (which includes the cartilage and the ends of the bits of the bones that help to form the joint), but as patients there’s not really any way we’d have of knowing so asking medical practitioners for more information can be very helpful.

Whereas a quick search on “sclerosis” wasn’t actually very helpful. *sigh* The various links advise that it is a thickening or hardening of tissue and then go off on various different specifics which may not relate to my personal situation. Once again the handy Nurse Isy crops up to advise that sclerosis is basically scarring – tissue that has been damaged and repaired, but the repairing tissue is different to the original tissue, it’s thicker and denser – hence the thickening and hardening effect.

Knowing that the joint space is still good is great news as it means that the bones are not grinding on each other, which would involve further issues to be looked at if they were.

As it turns out, I’ve been taking high strength glucosamine with chondroitin for, oooh, about 12ish years now I guess, maybe more. It’s a good combi’ for cartilage repair (not regrowth) and even repair to some small fissures which can occur in the ends of the bones at the joints; or at least that’s what the research said years ago! It’s still said to sometimes help with joint pain anyway. So who knows… maybe that’s part of the reason the issues are still noted as “minor”. Either way, it’s been no bad thing for my body to keep taking the combo’, which is rather nice to know. 🙂

So, if this was your medical info’ would you be champing at the bit to find out more yet? Okay, okay!

Now that we’ve checked out the terms one by one and got a clearer understanding of the basic issues as they relate to the specific patient’s body, let’s see what wider reading on the degenerative issue can tell us…

A search on “degenerative hip joint” basically brings up Degenerative Joint Disease and advises that it is also known as Osteoarthritis. Oh. Right. That seems pretty clear then! Except it’s not – it turns out that they are not the same thing in diagnostic terms at all, and each have very specific criteria which at this early stage I would not meet. So I had figured that I had early onset osteoarthritis, and yet it was not the case at all. I am predisposed towards it yes, I have early signs of hip degeneration yes, but at this moment in time I am a patient experiencing issues with my hips, but I am not a patient with a diagnosable hip condition. Again, another example of how tricky it is to find truly accurate and reliable information online, and another whopping great example of how important it is not to over-interpret what we find. Keep it specific to you and your body, don’t expand the information to broader health issues because they may have nothing to do with your current situation.

I would always advise the same filtering system to be in place when you search anything on the internet, especially anything health related because the impact of false or even just tangential info’ can be so problematic for our understanding and current health as well as how we are to assess any changes to our lifestyle for long-term health.

Rule of thumb: look for a medically sound website which is not pushing one aspect or another. We want to know what works, or not. Not what sells. Remember… ‘Just the facts, ma’am!’, and just relating to your body.

I found a link when I originally searched which noted all sorts of different treatments from cortisol injections to surgery, and I loved the information in that link because it was also noted that many of the treatments enabled a short-term improvement at the expense of worse long-term issues. I immediately knew that I’d not be opting for any of those and that my existing approach of exercise (including strengthening), good nutrition, and medical/fitness support on hand if I need it would be my way of working with this development. I have just searched again and haven’t found that link. That just goes to show why our self-imposed filter system is so important in these kinds of searches.

As far as me having hip problems goes, it’s no biggie. Many people get joint issues developing from middle-age onwards regardless of any pre-existing health issues. I’m just starting somewhat earlier that’s all. And it’s not like I don’t know how to manage pain, or how important both physio-exercise and recuperation-rest is. So this is easy to take in my metaphorical stride (even though I’ve been stuck on the sofa for several hours recovering and resting after my morning physio’ earlier today, I can still metaphorically stride, right? 😉 )!

But my letter that I’m using as an example could easily have been perceived as scarier. In fact this example could have been scarier simply by handling the learning process differently and failing to filter out the excess of information which may not even be relevant.

So if you’re going to search medical info’ (and I recognise any ‘expert patient’ is going to do that at some point because we’re the centre of our health web and need to know what’s what).. be aware of the importance of how to search medical information, and of the importance of keeping the info’ specific to your body. Most especially be aware of the huge importance of how to filter out the less reliable information and that which is less specific to your body. And never forget to allow yourself time for the emotions first – medical searches are not helpful when we’re feeling emotional in any way. Allow yourself time first, then if you’re going to search for something only do so when you are feeling calm because that means that our brain is in a better state to filter and work through the information accordingly.

And finally, there is a footnote in the letter from the expert, did you notice it?

Letter, hip x-ray, part 3

“Should she continue to have significant problems despite that a referral
to a local orthopaedic surgeon is advisable.”

Would it have worried you?

Remember: this is a footnote for my Doctor. It is not a note for me to worry about. If I go to her at some point in the future to report worsening hip problems it simply gives her a pre-set starting point instead of a new round of referrals to ascertain where it is best to send me first. That’s all. And in addition it also confirms that I’m doing the right things, which is always great to know.

Hoping this helps a little bit,

From your friendly blogger who, medically speaking, might actually be… quite hip?! 😉
(I know, *groan* right? Sorry).

(Not sorry, really. Hehe).

x

Poem of the sunshine heart

I was doing something else on the laptop when some words started linking together in my head, so I opened up a blank page and this is what happened… 🙂

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Today my body doesn’t like me but I’m not surprised
There’s lows with this condition but I know there will be highs
I did too much yesterday and that was down to me
I went to class *and* hospital because I like Tai Chi

So today I will be resting lots with laptop and no frown
My ‘pacing’ will be well controlled to calm my system down
My ANS will slowly calm, my pain will be less shouty
It’s hard to work around this stuff, but I’m feeling mighty

We may be pushed to limits but we’ve found out who we are
The inner oomph is revving and it’s gonna take me far
I won’t quit, I won’t give up, life is to be lived
I’ll grab the opportunities so I don’t end up miffed

My old lady years are far away but I’m already creaky
I pace myself, manage pain, and basically be sneaky
I may be quite severely ill, but that’s not stopping me
I’ll live my life and love the world, be all that I can be

In every day there’s shiny things to make me laugh and smile
The smallest things are worth so much I always pause awhile
To grab that special moment, make it last, to make a note
A shaft of sunlight, cup of tea, a dancing lit dust mote

There’s more to life than who I was, than what I used to see
Life progresses and we grow, the beauty is all free

I started believing in myself,
.                                           opened mind and heart
And all the love was out there, waiting.
.                                                            The ‘end’ was but a start

x

Elle and the Auto Gnome, sunlight through autumn branches

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