Managing in a new home

Well, what a palaver moving home is when you are chronically ill eh?

It all started so many months ago with packing well in advance so that I could do a little bit each day during my paced daily activity. The pacing is such a crucial part of my pain management so I can’t go overdoing it as then I risk sending my nervous system back into it’s old amplifying ways. But then there’s all the viewings of potential houses, sometimes Magic Dude was at work and I had to drive myself to viewings and take pictures to show him. It all adds up and takes its toll. And it takes its toll for a long time afterwards. Trouble is it doesn’t stop there of course.

We tried to buy a place and had to pull out when we found out there were potential structural problems so we found ourselves back at square one again. Our buyer hung on (and on) (for months) and we eventually found another place, won the bid and then it took ages to actually get through all the paperwork and reach the incredibly stressful moving day. It was all so well organised by us to best manage my health issues but the handing over of the keys was out of our control. Our lovely removal guys were sat outside the new place for hoouurs waiting for us to call them and let them know that we’d finally been given the keys and were on our way. In the end it was so late in the day that they called in a couple of extra guys at no extra cost just to get unloaded in time. They were awesome. But yikes, what a day!

As I now have immune responses to loads of different things Magic Dude and I cracked on with my second paced activity of the day removing the bedroom carpet, under which was a layer of lino and under that was a layer of disintegrating black spongy stuff. It was a messy job so we wore facemasks and got on with filling up rubbish bags and cleaning the uncovered floorboards. Windows open to air it out. Mattress made up on the floor. Eeeeeevrything else shoved into the extension because we foolishly thought we’d be decorating everywhere pretty soon, haha. Silly us!

We have got loads done, though.

First things first… the health stuff:

New boiler because I need to be warm to help manage my pain levels.
– we were lucky to get a government grant via a local environmental charity and after taking some info'(including Magic Dude’s income) we were awarded an additional grant from one of the charity’s other schemes as well. The government ‘Green Deal’ has finished now but it’s always worth checking with any local teams or charities to see what’s available as they receive grants from elsewhere too. Your local council should know who in the area you could contact to ask about this stuff.

Boiler

Loft and wall cavity insulation for the same reason. If I’m not warm I’m in more pain. Simple as.
– we had the work done by energy company EDF as per advice from our local environment team. Many energy companies in the UK offer schemes like this but EDF are unusual in that they are the only one currently offering this service to disabled people who used to work. If you receive contribution-based disability benefits you are not included in many schemes available. Purportedly this is because contributions based disability ESA (for those of us who happened to have been able to work at some point in the past) is more than the income based version but for me personally the addition of about £3 doesn’t make enough of a difference for this to make sense. Yes, I know, whether we used to be more ‘able’ makes no difference to our current state of disability or the help we need now, but hey, the rules are created by non-disabled people and they are politicians who don’t get stuff. What can I say?!

Both these schemes for the boiler and the insulation were brilliant. I am so truly thankful for their assistance I have no words to describe it.

Security.
– also recommended to us by our local environment team was a charity called the Blue Lamp Trust which covers England & Wales. It’s a security charity of which many employees are ex-policeman and so they really know their stuff. They help a lot of domestic violence victims as well as disabled and elderly folk. I’m home alone and non-functional most of the time so I had highlighted a security concern and said I’d appreciate some input and advice. What I actually got was lots of really good security advice on all fronts and even more than that… including two new smoke alarms, a door chain, a door bolt, three different planned fire routes for us to get out in the event of a fire, tips on how to handle cold callers (in person and on the phone), he would have given us a carbon monoxide detector as well if we hadn’t have already gone and bought one, and even some tips for avoiding identity theft. In addition to all that he was an absolutely lovely chap who used to police our area so knew it really well and he didn’t even complain when I made him a bad cup of tea!

Blue Lamp Trust

So (for England and Wales) if you’re one of my fellow disabled or if you know anyone vulnerable (including victims of domestic violence) who would like to feel safer at home I can recommend contacting the Blue Lamp Trust through their Bobby Scheme.

Other than that it’s been typical do-er upper work!

We bought a place with the space I needed as I’m stuck at home unable to work. At the old house we had no space so if I wanted to try to do anything I lost most of my activity time to setting things up and then putting them all away again so I couldn’t actually get much done in between at all. Now we have more space so I can (eventually – once we get the boxes unpacked) set things up then just leave it where it is for next time. Reducing my set-up/put-away time and increasing my quality of life. Hurrah!

To get that space we had to get a do-er upper though. Houses ready to live in were too small and houses with space were in need of er, most things! So we bought a place that was well under our budget so we’d have some money to get it liveable, but we still couldn’t have done this without the help of the crucial grants. Thanks to the grants covering the boiler and insulation we had the money to get the dangerous old 1950s rubber wiring replaced throughout, get the two-level floor (with a steep ramp between the two where a wall had once been removed) amended to one level to stop me from tripping over it when I’m struggling with symptoms and a new kitchen (because we had to rip the very old one out to get the floor levelled).

Ta-dah! Money gone! So now we’re on to good old fashioned home DIY (‘Do It Yourself’).

Gosh I’d love to sleep in a bed! And have somewhere to put my clothes. And not have eeeeeverything re-covered in dust each day! But we’re getting there. Albeit slowly.

Cooking in kitchen

Our kitchen after the floor had been levelled

It’s been nearly four months since we moved in. It’s great to no longer be cooking on the camping stove and I’m chuffed to not have to wash the dishes in the bath any more although I am still washing my hair in the kitchen sink when I can stand up long enough! The shed now has a roof (storage space to reduce the amount of crap in the house!) and we’ve re-purposed the old kitchen units to go in there. I’m pretty chuffed with how that plan came together. Poor Magic Dude was so terribly down about living in such a building site so I arranged a surprise for him – his bestest mate and my lovely bruv came round one day whilst he was at work and we sorted out most of the shed roof. I say ‘we’, but that’s pretty cheeky as I couldn’t do much of course.

He was in shock for several hours after he came home and found what had been happening in his absence but eventually he started nudging me from time to time and then grinning at me! I had hoped it would help him out of the doldrums but the effect was way bigger than that as he got really enthusiastic again and threw himself at the remaining shed jobs with gusto. It was flipping wonderful for us three to be able to help him so much with a plan so ‘simple’.

Shed roof

One very holey shed roof!

I say ‘simple’. None of us had done anything like that before. We researched it thoroughly and then kinda made it up as we went along. 😉

After much removing of carpets, fire-hazard ceiling tiles, wallpaper, filling of holes and cracks, sanding of well, everything… we are fiiinally about to be able to paint some base coats on a few walls. In fact Magic Dude is doing exactly that as I edit this and I want to go and see but can’t get up, waaah! I’ll get to see it later though. And we still have the dyeing and varnishing of the upstairs floorboards to do (another thoroughly researched but totally new endeavour)!

So we’re getting there.

Slowly.

And my pain levels are worse because anything extra throws them out. I work hard to pace my daily activity but have found it easy to get too involved and overdo my morning physio so I then do less for my evening physio to balance it out. This then means that I’m doing different activities to usual and training my body to be more flexible on how my daily activity is grouped when it really is much more sensible to only vary one thing at a time. Still, I’ve done pretty well restricting my activity to the crucial paced time per day overall during all this change, tradesmen noise and long list of stuff that needs doing.

Magic Dude has now driven me to a few Tai Chi classes whilst he’s been off work to try and help me normalise my paced activity a little more. I’m learning a new and challenging style (Chen) so that’s a good distraction to think about between paced physios. And when thinking isn’t distraction enough to help me cope with the pain I resort to immersing my senses in Lord of the Rings Online for a while.

Me, decorating

Sometimes I’m able to help out a bit during my daily paced physio time

So, I guess to sum up: I’ve moved home, I live in perpetual dust, I’m trying to convince my lower torso get involved in Chen style Tai Chi and I’m nearly out of the dangerous tunnels of Moria! 😉

xx

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

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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One of those weirdly surreal days

How do you react to being told that one of the UK’s top Tai Chi teams want you to join them *and* to compete as part of the team at the European Tai Chi Championships in Latvia in only a couple of months time?

I mean really? Whaaa?

My first emotion was one of excitement, but the shock soon set in! By the time I was halfway home my facial muscles had gone all slack, my eyes were wide in shocked disbelief and my mouth was gaping, I must have been a weird sight!

So, in my case the internal reaction seems to be.. ‘Whaa? Wooow! Really? Woah! I haven’t got my passport sorted yet!’

Quickly followed by… ‘I’ll need to take my wheelchair with me. I need the rest of the team to get their head round the reality of a Tai Chi competitor also needing a wheelchair some of the time even though they look ‘normal’ when they’re not using it. I hope they can get me a seat on the plane with plenty of leg-space. I wonder if the aeroplane people will lose the arm rests, maybe I should bungee them onto the wheelchair before they load it….’ etc etc. During which my fight or flight kicked in, because it does that over even the slightest raise in heart-rate (My fight-or-flight: “Your heart-rate has fractionally increased! Oh no, we’re all going to diiiieeeee”), and before I even reached home my autonomic flibbles meant that I also became rather nauseous. So I figured it was best to simply concentrate on careful breathing to calm my silly inner-wiring.

But the day was even more surreal than that, so instead of coming home and variously grinning and pondering my way through the afternoon, I instead had to come home and type up a potted medical history for the cardiologist who I was seeing that very afternoon.

Off to the hospital. Quick ECG as usual. Which was all fine and dandy, as usual.

The reason I’d been referred back to the cardio’s again was because my GP gave me a 24 hour ECG (called a ‘holter’ in some countries) and instead of my wiring saving the heart flippity-flappities for when I’m not all wired up and Borg-like it actually misbehaved at a time when it would be registered. But… instead of my heart going flippity-flappity it ‘paused’. For 46 seconds!

*sigh* Always something new, eh?! Ah well.

Anyway, the outcome from the appointment was that we really don’t know what my wiring is diddly-doing so I’m going to get called in to get set up with a 7-day ambulatory ECG sometime. Fortunately it should be before the European Tai Chi Championships. Yes, I checked! 😉

Just because the day is so darn weird anyway, why not do something out of the ordinary to be in-keeping with the theme?…

On my way out of the hospital I wandered past a clothes shop with ‘SALE’ in large, friendly letters ( 😉 ) and in the window was a dress that caught my eye. So I went in, tried it on, and blummin’ bought myself one. Yes, you read that right, I actually bought myself something that wasn’t ‘necessary’! It wasn’t supplements, or med’s, or compression stockings, it wasn’t even a Tai Chi seminar for extra physio’, it was a dress that I bought for myself simply because it’s pretty. Well it’s pretty *and* purple *and* paisley, so how could I resist?
dress from hospital
Though perhaps it says a lot about my life that I bought it inside a hospital! Hehe
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So, I’d been out of the house twice already that day – once to Tai Chi class (and the shocking news) and once to the hospital. But Tuesdays are called Totally Tubular Tuesdays in this house because I have two physio’ classes that day, yikes! I wasn’t sure if I’d make it to adaptive Kung Fu as well, but Wednesdays are always my rest and recovery day after my tough Tuesdays so yeah, I went anyway because I’m determined/stoopid (delete as appropriate)!
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It’s now been over a week since my teacher scored points for managing to render me speechless (not many people manage that! 😉 ). And the update is that the Championships have now been moved to the UK, so at least I don’t have a plane flight to deal with now, pheweee! That could have blown my pain right off the scale. It’s hard enough competing in the UK with my health conditions delivering their characteristic collection of aftermath problems, but at least I know what repercussions to expect from competing here.
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So I’m in ‘training’. Which actually means that when I have a Tai Chi class I practice with aims instead of ‘just’ practicing! Which I obviously need as I’ve been told that I had somehow turned one of the Chen style parts of the 42 form it into a “sexy salsa version”, oops! So yeah, plenty of work to be done whenever I can spare some physio’ time to practice! And what with the need to eat, wash etc there isn’t exactly oodles of physio’ time available to purloin, but you know I’ll do what I can, as always.
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I’ve said it before and I’ll say it again…. never, ever. ever cap your potential. Live in the moment, enjoy the shiny bits, and don’t ever assume that ill health means that we will live in a perpetual metaphorical downpour forever more. There are always moments to make us smile, however small. I do feel lucky in some ways. I certainly feel lucky to have ended up with such an awesome teacher. But I know that the grit and determination of my paced exercise over the years is down to me, and without it I would not have got to the same level of beneficial effects from that pacing today. I can safely say though that physio-ing at something I actually enjoy takes far less determination to keep at it! 😉
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Much love from the spaced-out blogger recovering from shock and cardiology! 😉
x
UPDATE:
The European Championships will now be held in the UK instead of Latvia. The change in venue has also meant a change in date as it will now be held in April 2015. Which means more time to get over the shock and to get some training in during my physio’s!
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Tai Chi and adaptive Kung Fu catch-up

During the time that I was away from the blog creating the FAQ I still kept up with my physio’ sessions of course. I have to as the pain still needs managing no matter what else is happening. In fact that has to come first for me to be able to do anything else anyway. So I kept up with the Tai Chi and was training for this year’s nationals in Oxford and London.

I also kept up with the adaptive Kung Fu taught by the same fabulously supportive teacher.

So I’ve had a few progressions to celebrate since I last posted about these physio’ focuses.

I sourced my very own purple, (yes I’m sticking with the purple!) Tai Chi ‘silks’ and when they arrived I was so chuffed to have my own set that I wanted to take a piccy of them to show you. On the very same day though I was awarded my green sash in adaptive Kung Fu so I was pretty overwhelmingly happy and took a photo’ of the two together…

TC silks & KF green sash

Each time the Tai Chi tournaments come around there’s something new about our performances. There is always additional detail and improvements which we’ve spent the last year working on, but this was also my first year competing at intermediate level (for those who’ve been learning Tai Chi for 2-5 years). I was bowled over to win a gold for my performance at each tournament again this year, plus there was the added surprise of being awarded joint bronze at London for overall intermediate as well. So yep, I’m pretty amazed at the outcomes, especially the London one because a) I had performed the 24 form at Oxford and only started learning the 42 form 8 weeks before London, and b) I had to wait all day before it was time for me to perform… by which time I was a mess! My brain was going, my Dysautonomia was playing up, I couldn’t think straight and basically felt downright dreadful. So I decided that if I managed to get through it without making any massive errors or falling over that I’d be happy. After all, I don’t so much compete with my Tai Chi peers as with my health. If I can kick the metaphorical arses of CRPS & Dysautonomia then I’m a happy bunny! So yeah, winning in that state was one heck of a shock! Maybe I’m alright at this Tai Chi thing! 😉

I know that it would be appropriate to have a piccy of me after performing at London as I collapsed in a sweaty heap the moment it was safe to do so, drank a bottle of water in one long gulping session, shovelled down some salty peanuts and then just sat there cross-legged with my head in my hands. Funnily enough poor Magic Dude was more concerned about me than he was about documenting the state I was in, we’ll make sure he gets his priorities right next time! 😉 So here’s an alternative but not-so-interesting piccy instead, x

TC medals 2014

Of course it’s been so long now that I’ve since graded again in adaptive Kung Fu. I am now the proud, and rather gobsmacked, owner of a blue sash! 🙂

KF blue sash

None of these achievements were things I aimed to attain. It’s all been a case of trying things because I want to, let’s face it… doing a physio’ that we actually enjoy or which makes us feel good about what we’ve achieved is well worth the effort just for that, let alone all the physical good that we do it for. And yes, don’t get me started on the extended Aftermath Pain from attending the tournaments! But it’s worth it. For kicking the arse of my health conditions… it’s so worth it!

I do push myself, but I do it within the knowledge of how to work pain management activity balanced with rest and recovery. Plus I pay attention to the feedback from my body and work from the adaptive point of view to keep me from plunging into any unnecessary mega-flares. That is where the ‘adaptive’ aspect is really important. There’s no sense in comparing myself with healthy classmates, I do what I can for my body and for my inner self.

Of course mega-flares are part and parcel of competing twice a year and whenever I dare to grade, but the psychological boost I gain from feeling like I’ve just stuck my fingers up and my tongue out at my health issues helps to get me through the flare,  which is finite, whereas the achievement will be with me for life.

Ah yes, I love Tai Chi!
I’ll be practicing it to whatever capacity I can, including (especially) when I’m crinkly and weathered! (I was gonna say “until I’m crinkly and ricketty” but I’m already sooo ricketty it didn’t really work, heh!)

I am amazed and so pleased that I have the chance to adapt the Kung Fu around my issues, and if I never get further than the blue sash I’ll still be thrilled. 🙂

P.S. My teacher is awesomeness! Thank-you teach’!

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To my wonderful readers out there: Do something you love, it doesn’t have to be much and it doesn’t have to be difficult, but never cap your potential. What we can achieve over time can be surprising, so allow yourself room to be pleasantly surprised.

x

Changing cars (with incidental comedy headrests)

As I mentioned in my last (AWOL-idays) post, my beloved car of 7.5 years started to keel over this year and I had to part with him in March. Parting with my lovely Logan (named from the letters on his numberplate) was strangely difficult. The first automatic gearbox car that I had to buy (and sell my manual First Car to do so) was difficult. I had not come to terms with my health changes back then  as it was during the long pre-diagnosis, chronic confusion stage, so I almost resented that car. But the car after that was Logan, and buying him was a choice, which makes all the difference.

He was, no he is: I was informed that Golfs don’t go for scrap where I traded him in because there’s always a market for them so, fingers crossed, he’s still out there somewhere. Anyway he is a black V reg VW Golf, so the boot was (no is) big enough for my wheelchair and he was (ohhh I give up!) not a bad looking dude. (A Mark 4, in case you’re wondering 😉 ). The bonus was that he was a 2.3 V5 engine so he had some very enjoyable ‘oomph’ too! *sigh* He was the main man in my life before I met Magic Dude, which sounds nuts, but you know… independence counts for a lot, me ‘n’ that car – we went places!

Magic Dude and I got a replacement car, of course. Not another Golf because even second-hand we just don’t have the funds.The new wheels is a Vauxhall Astra. The boot is big enough, he looks pretty smart, the engine is big enough (coz let’s face it, there’s less weight to move around than there is with an old VW) and the bonus is that he uses less petrol which is a relief for the wallet. I’m just not attached to ‘Krull’ yet, but time will sort that out!  And, well, y’know, I miss Logan! 😉

I have to say though… what a nightmare it is shopping for cars when there are health issues and restrictions!

All sorts of issues and problems along the way which were mostly expected e.g. more pain from bits of activity here and there at different garages instead of my usual length of paced activity, more pain from the amount of sitting as a passenger being driven to and from different garages, plus the brain loss from the required increased thinking and discussion, and the headrest induced migraine issues which I have to work around in looking at potential cars, but the two new things I learnt were…

a) never guesstimate boot size, some of them have TARDIS properties and the wheelchair can fit in when it really didn’t look like it would from the outside.

b) I can never ever own a certain-make-of-car (not sure whether I can mention which one!) because their headrests are really hilariously stupid and I would have a permanent migraine as a result (I started getting a migraine just minutes into the test-drive of a, er, car of that make, the headrests are that bad for my neck)!

Here I am in the old Golf. The headrest does lean forwards a bit but it somehow worked well enough to be able to rest my head back. Plus the headrest could be tipped backwards and forwards to suit. I still used a soft cushion to support the neck vertebrae during longer journeys (damaged in a whiplash injury which caused the onset of my migraines), but it was viable.

Car headrests, Golf

We had found one of the certain-make-of-car which was ideal for our needs and had very low mileage. So to try to figure out if we could make the headrests viable I bought some from a car junkyard and took them apart to see if they could be reshaped without the mega-lump and re-covered without losing the safety aspects. The answer to that route of questioning was a resounding no. Here’s a pic’ of the other headrests in the Golf car seat before I took them to the dump to dispose of them! (And nope, they are no better when attached to the appropriate seats). They basically push my lower neck vertebrae forward so that I can’t lean back in the chair and have my head up straight.

Car headrests, Focus1

I mean, really?

And nope, different heights helped in no way at all. The front has a massive lump that sticks out far ahead of the seat itself, who sits like that? You’d have to be a mega-sloucher to  do so. We even tried turning the headrest the other way round because it was the only way I could survive the test-drive. I had to tense up a lot as the headrest slopes away backwards when it’s the wrong way round so the choice was to stare at my legs and get an instant migraine or to sit forward / turn the headrest round and support my own head on my faulty neck.

Here’s a sideview of the headrest. I mean, whaaa?

Car headrests, Focus2

But I had a good think about it and figured that it was probably to suit these guys…

P1050195 (2)

😉 x

 

What I did on my AWOL-idays

Goodness me, I’ve missed being here! But where did I go?

Last Spring a Tai Chi mag’ asked for articles and I offered to write one about how much Tai Chi has helped me with my health issues. The tricky part was that they didn’t reply until this Winter, and you know how much pain we’re in through Winter, right? Yeouch! So I had to concentrate on writing the article as I was having far less Brain Time to write. The trouble began when I was subsequently asked a few extra questions and instead of them being practical health questions they were more about my experience and motivations…. and then my brain fell out.

The end! Eek!

I still don’t have much brain, but that’s hardly surprising coz I’ve actually been doing rather a lot while I’ve been missing my blog.

In the UK we have a cliche of the homework title that we were all had to write for when we were young children at school: “What I did on my holidays”, but as I’ve been awol I guess it’s “What I did on my awolidays”. Here’s what’s happened since I last got to write to you…

I spent a lot of time creating a CRPS FAQ for a support group that I admin’ in, and yes – it is to be uploaded here too. Most of it is now transferred to the weblog so I’ll be able to post it here soon, x

My beloved car, my companion for 7.5 years, started to keel over and I had to part with him. The Magic Dude and I have bought another but it’s not the saaaaaame!

I had lots of dentist appointments after losing an old crown from a molar tooth.

I had a haircut. That counts as ‘news’, right?! 😉

I finally got to go to a graduation ceremony for my MSc that I completed with my own CRPS research last year. The Open University do a good graduation ceremony 😀
P.S. I wore high heels across the stage… take that CRPS! Mwoohaaahaaa! Of course my wheelchair was nearby for the rest of the day, but, y’know, rawr!

I finally got to go and visit Stone Henge. Woot! As I now live on the south coast of the UK it wasn’t that far to travel and the wheelchair allowed ambling around the visitor centre and going for a cup of tea afterwards too.

Stone Henge

I went to see Giant Steve 2 at the cinema! (That’s Captain America 2, of course 😉 ). Although it was on the same day as the trip to Stone Henge (what was I thinking? Doh!) so I spent the whole time trying not to pass out!

Near-syncope at cinema

Not doing a very good job at guarding Magic Dude’s popcorn, eh?!

I finally got to start the salt tablets to see if they’d help the near-syncope at all as it’s been getting worse all year so far (more on that to come in a later post).

Lots and lots and lots of Tai Chi practice during physio’-time and in-my-head practice to strengthen those neural Tai-Chi-ing connections when I was able to do so. This was in preparation for one local and two national tournaments.

All sorts of doctors appointments for blood tests, blood pressure monitors, discussion after I ended up in Accident & Emergency (ER) one day and chasing up a nightmare referral to a local cardiologist (which still isn’t sorted). So you know, the usual!

I taught my first class of Tai Chi! Wow! My teacher was unavailable for a week so the two classes that I usually attend anyway as part of my physio’ became ones where I physio’d by teaching instead. Cor, who’d have thought eh? 🙂

I found that I have had so very horrifyingly little Brain Time that I turned to gaming in the last few weeks of the run-up to the last national tournament to let my brain and body wind down together. Magic Dude has had to replace his old laptop and he’s now got a sparkly newfangled one so we decided to finally try out the online Lord of the Rings game. 😀

I went to a concert – Seasick Steve, and he was aaaawesoooome! It was stoopid timing with the tournament stuff, but he really was ace and I really am stubborn!

Concert, Seasick Steve

I’ve spent the last few days away as poor ole Magic Dude hasn’t had any time off work for so many months (except to drive me to and from appointments and the tournaments) and I’ve been struggling with pain and near-syncope highs of 9s for many weeks now. So we got away, we saw Things, and we did Stuff.

And, in true ill-person style, I am now trying to recover from the few days that we spent away!

And now I’m back and have a huuuuge amount of things I want to do and there’s never enough time to do it all in. At least, there’s never enough time where my brain is working well enough and my pain levels are low enough to do all of the things I want to do, but you know I’ll try anyway!

More to come soon,

Hellos and hugs and bestest wishes from me,

x

A quick, easy and bargain way to make a difference

Hiya, it’s that time of year when we actually send communications in a tangible 3D kinda way, and whether we receive posted messages from loved ones for Christmas, Hanukkah, Kwanzaa, Zonghi, Pancha Ganapati, Winter Solstice or any other of many heart-warming celebrations at this time of year… we all have to put stamps on anything we post.

So I’ve grabbed a glass vase from the kitchen and started collecting used stamps from any mail I receive. Various charities accept used stamps to help them to raise money, and it’s a great way that we can help without having to raid our already stressed-out bank accounts.

I just started writing some cards out yesterday, so to my friends.. when you receive them, hang onto that stamp I sent and forward it to a charity that you would like to help.

I’ve also started receiving some cards too (plenty of people out there seem to be way more organised than I am)! So I’ve started collecting used stamps and this is how far I’ve got at the moment….

Used stamps 1

I will be sending mine to the Hypermobility Syndromes Association (HMSA) in the UK. They are very proactive and so I feel it’s a fabulous cause to support. If anyone else wants to send to the same cause, they accept all stamps (whether from the UK or abroad) and the address to send them off to is:

Hypermobility Stamp Appeal
PO Box 264
IM99 1UR

I’ve decided that my stamp-collecting vase is going to sit there all year, now. It’s just such an easy way to help to make a difference 😀

Hope you’re all doing okay through various adverse weather conditions at the moment,

Lots of love from me,

x

Festive physio’ stole all my spoons!

I’ve spent some of my physio’ activity time decorating tree #1….

Xmas tree 1, 2013

Aaand tree #2 aka Treebeard (who has surprisingly made friends with Emo Spiderman)….

Xmas tree 2 (Treebeard), 2013

Of course, after using up available activity time other things tend to pile up a bit….

Tea bag pile

Tee hee

Merry December peeps, may you be cosy and smiley 🙂

x

(Spoon ref’)

An informal international network of CRPS patients

When we find ourselves diagnosed with something we’ve never heard of and our doctor seems to be unable to clearly explain what on earth it is, what do we do? Many of us turn to the internet, but health information online is of variable quality, and even more so when research bounds onwards in new understandings whilst many websites are not updated with this new information.

So what do we do then? Who out there has heard of the condition and has some clue about symptoms, prognosis, the whys and wherefores? How many of us actually get to see a specialist in CRPS? I was diagnosed by a very good limb-reconstruction specialist, and I’ve seen some general pain management teams, but never a CRPS specialist.

Another reason we may look online is for someone, anyone, who understands what we are going through, who can reassure us that we’re okay, that’s it’s not ‘all in our heads‘, and that the sorts of stresses and strains which we are experiencing are common for other patients too.

Tai Chi holding planet earth, the world

Of course the nature of the internet means that geographical boundaries no longer restrict who we meet or how far good information can be shared. There is effectively an informal international support network of CRPS patients all helping and supporting each other. And for those of us who find the right groups for our needs and temperament, and the most useful pages with correct contemporary medical information, the effects on us can be positively life-changing.

The impact that this has is that a large number of patients internationally who were previously often isolated and looking for information…. now have access to regular contact and support, and can find research, discuss aspects of the condition, talk about potential treatments and indeed anything that they wish to talk about.

This is one heck of a turnaraound for patient experience.

Heart ornament

An ornament on my mantlepiece from one of my beloved international friends, x

I have met some awesome fellow CRPSers who admin’ in support groups, raise awareness, blog and info’-share as advocates for fellow patients. The slower speed we have to work at owing to our health issues never detracts from my excitement at the potential though. How can I not be excited? – I am part of an informal network of CRPS patients who have professional skills in nursing, pharmacology, occupational therapy, alternative medicine (which is especially important to patients allergic to mainstream medicine), nutrition, research, writing, psychology, counselling, ohhhh my goodness this network of awesome and beautiful-souled people is an absolute treasure trove!

We gravitated towards one another because we recognise each other as determined information-gathering/sharing advocates. There’s no formalities here, we’re just people who got to know each other, liked what we found in each other and we often come together to help others.

Some of the people in the network work hard at raising awareness, sometimes that is through social media, or wider media, or through creating and selling awareness jewellery. Others in the network blog and maintain websites. Some carry out research, and others support that research (sending another moment of thanks to my super-coder, who is a CRPS carer, and to my fab’ coding and statistics advisor 🙂 ). Pretty much all of us are involved in admin’ support alongside the other things we do.

One day I might even dare to go purple, too!

Pause for a moment to remember that these people are so terribly chronically ill, with multiple issues across various systems in their bodies. They often are unable to work because they cannot guarantee being able to work at any given time on any given day. So all this wonderful work they do to help others is done around immense pain and often additional challenging issues such as fainting, severe nausea, the understated brain fog (which one of my friends refers to as full-on London brain smog when it gets so bad that we can’t function!) and this means that it can only be done as and when the body allows. Which isn’t very much. So the amount of time that they battle through the symptoms to even just be there for others says a lot about how much it means to them to be able to help fellow patients.

These are truly awesome people.

And they just so happen to be from all over the world.

Here we are, all over the world but in contact at the click of a button. Magic!

Modern technology, including the rather handy online translating applications, renders geographical distance a mere annoyance. In fact it’s not so much the network of advocacy which is affected, because that works amazingly across time zones, across language barriers, across cultures and more. No it’s really just the fact that we can’t all meet up for teas, coffees and a face-to-face natter that really bugs us about the geographical distance!

The world appears to have shrunk since I met you all! Other countries now feel like they’re ‘just over there’ instead of a whole world away! It’s a wonderful feeling that we are all coming together like this. My own personal world is very much better for you all being in it. Thank-you, x

The love, the gratitude, the admiration, the respect that I feel for these amazing people is something that lifts me on those days where the health issues are more challenging than usual. They’re out there. Kicking CRPS arse! Making a difference to other patients around the world. And when they’re facing a flare-up day they know that I’m still out there doing what I can, too.

The international aspect is a positive boon as the varying time zones (plus all of us who can’t get to sleep!) means that there’s always people out there.. 24 hours a day, 7 days a week, who support, share information and answer questions – who do whatever they can to help fellow patients online.

International post, my initial network

My initial mini network of international friends. We still get together for natters on Skype and regularly communicate in group chats online, these are some of my bestest buds 🙂

Initially I was just me doing what I could to help others. Then I met some fellow patients doing the same and I became part of a group of friends doing what we could to be useful. And as time passes the connections naturally build up. We meet other admin’s during our admin’ roles, we come across other bloggers and awareness raisers when we join in with various photo or writing challenges… and so the network keeps growing. Think of all the little networks, and imagine each network having someone who meets an advocate from another informal network… they get to know each other, and maybe some others in each of their networks do to, and before we know it the network has extended.

I adore the advocates I’ve met, we have the same goal in our heart: to help others. That one thing says a lot about our personalities.. so it’s not surprising that we help each other rather than butting heads! This isn’t business, this is heart, and morals, and ethics, and love. And that crosses international divides without missing a beat. The common denominator is helping others, it’s about being human, about caring. And that steps past any differences that we might have in geographical location, or culture, or the type of healthcare system we have in our country, or even language.

Our hearts are aligned, and we put our heads together to be as helpful as we can.

Every one is a lovely caring soul who I am honoured to know.

And if you think gentle souls can’t be determined then think again, because this is a network of CRPS survivors, many for more than a decade already, so we’re more like a group of cupcake baking, fairy-winged terminators! 😉

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Other bloggers in the network posting today, too…

Yes this very day, the 22nd November 2013 🙂 , some of the bloggers in this informal international network are also writing a blog post on the same theme and we’re all posting to our blogs on the same day. 😀 As each of them post their own articles online I shall add the links below for you. As we are in various time zones and working round health stuff the links will become available at different times so I’ll keep popping in to add more links as they become available, x

Union Jack cup and saucer, full

Representing my fellow patients in the unofficial UK branch 😉

And rather than leave this post solely with UK input from me… there are some quotes below from some wonderful CRPS patients in other countries who wrote a bit to be included in this post between their high pain levels and all the usual deadlines and pressures of everyday life – thank-you to everyone listed below, x 🙂

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Other blog posts on the same theme being posted today…

Sylvie in Belgium: Blog SDRC International: des amis merveilleux et des patients experts / CRPS international blog post : wonderful friends and experts patients
Written in both French *and* English, how amazing is this lady?! 😀

Lili in Canada: Love Knows No Bounds

Jo in the UK: CRPS Awareness Month International Blog Post, A Community of Angels 

Christa in the USA: Support of International Community: Why Do We Need It? 
Christa, with RSD/CRPS Doesn’t Own Me, has also teamed up with the RSDSA this CRPS awareness month to raise awareness and also to raise funds for USA patients in need of financial assistance with daily needs, medical equipment and medical costs via the RSDSA Patient Assistance Fund in Honor of Brad Jenkins

Isy in the USA: International group post: Love is portable 

Sarah in the USA: currently multi-tasking, like the superhero that she is, having a Tilt Table Test today. Rest up hon, hope the results are helpful, xx

Suzanne in the USA: Dancing Through The Fire… AND… You’re Gonna Hear “US” Roar! *an International Affair*
Suzy is also raising money for American RSD Hope, for every dollar donated your name goes into a raffle to win her handcrafted CRPS awareness bracelet. You can see more on her Facebook page and her website
And here’s the wonderful American Sign Language accompaniment to Katy Perry’s song that Suzy referred to in her blog post:

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We may well ‘network blog’ on the same day like this again because we all enjoyed getting together to plan this trial run (by the way, we co-ordinated through Facebook, just in case you’re on there 😉 ), so if you’re a CRPS blogger and fancy joining in just drop one of us a line 😀

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Some input from CRPS friends outside the UK:

“Having CRPS can be very isolating, and when you are living in a small populated country like Iceland that can be isolating too. And when you have a rare disease in a small populated country you are not going to meet many people with same disease that you can share your experience with. So meeting people all over the world online and making wonderful friends has really made this CRPS struggle worth it all. My friends all have different experiences, have had different treatments and can share their experience and knowledge. When you are having a hard time then nothing is better than a Skype meeting with friends or a chat on Facebook. Different background, different culture, different country and different treatment can only bring more to the table and give you good advice. I don´t know where I would be at the moment without the social network, it has been the most helpful thing in my CRPS battle, at times more helpful than any doctor, making my battle bearable and it has kept me going.”

.                                                                                             – Jona, Iceland

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“To be part of CRPS groups on the Internet is really helpful for me. After I got diagnosed the doctors here left me alone. No explanations, no help, nothing. Then met all this CRPS warriors online. They helped me through the first time which was really rough. And I know without them I’ve never could have done it. I had so many questions and they’ve been there for me till now. We’re a group. We’re there for each other. I love it. Whenever I need someone who really does understand me I can go to the group and talk to them. They know what I’m going through. I got my stepfamily who are supporting me but they don’t know what I’m going through because they are not experiencing it. But these warriors, they know it. They’re in it too. When I’m talking about my blackouts, my flares. They know what I’m talking about. I don’t have to explain everything. And I met wonderful people there. Even my best friend! I love her! I visited her. Which was wonderful. It showed me that I’m still able to travel even though I payed a big price for it afterwards. But all these friends I met there….I don’t want to miss any of them ever again! I’m not alone anymore!”

                                                                                              –  Noei, Switzerland

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“I am a Scottish woman, who has lived in The Netherlands for 14 years now. I have two amazing little girls, 7 and 8 years old. I am married to an amazing Dutch man (for 13 years now).

October 2010 at work a colleague pulled my chair for under my bottom. Which caused the tendon in my wrist to become detached. I had surgery soon after. However RSD/CRPS had already started.

I have RSD/CRPS type 2 – I have severe nerve damage from the elbow down to my finger tips in my right arm. The nerve damage caused my arm to decompose in 9 areas and has also caused me to spend 12.5 weeks in hospital in 2013 so far. This has an emotional effect on the whole family and friends.

RSD/CRPS is an everyday struggle I have never had pain below a 6/10 in 3 years. This is also due to the fact that I have rebound effect with almost all medicine for RSD/CRPS. I forget most things, I have lists all around my home for nearly everything, I used to have an amazing memory. I have at one point this year spent 2-3 months crying daily, not due to pain but grief over the loss of my life.

Around January 2013 my husband knew I needed more than my own friends and family and pain doctors, I needed to find others with RSD/CRPS who could understand me. I joined an online support group via Facebook, I can say with all honesty the group on one occasion saved my life and on countless occasions help me through the hard times caused by pain. I have made many friends who are also people with RSD/CRPS. We laugh together, cry together and also learn to express what no other person can understand, the emotional and physical pain connected with RSD/CRPS. I have spent time on Skype with others which is amazing, not just because typing is hard but seeing someone helps so much more than typing a message to them.

Without an international community of people with this pain syndrome I would be isolated still, alone, and so would many others. Thank you to you all, you are all strong, amazing, courageous people.

I hope pain management teams can read this blog and reach out to us all. Together we can fight this RSD/CRPS. However alone I feel we may keep struggling, both Doctors and patients.”

.                                                                                             – Joni, Netherlands

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