Trauma in a faulty nervous system

Trauma impacts on us at the time (by initiating our fight or flight survival responses) and over time (impacting on how that system responds to certain stimuli). When in a state of fight or flight one part of the nervous system goes into overdrive to do practical things like getting muscles oxygenated for running and dodging. It doesn’t need our body to worry about mundane things like digestion at the time, so the other part of the nervous system which calms things down doesn’t get stimulated in fight or flight scenarios.

bertram

That calming part of the nervous system is strongly associated with the vagus nerve. Patients with dysautonomia have faulty nervous systems and so they often have a variety of misbehaving automatic body processes that all stem from the faulty messages the system sends to our brain. Our brain responds appropriately, but, as the messages were wrong in the first place, the brain’s resulting instructions are inappropriate and often make matters worse. This is an ongoing, circular issue.

One aspect of having a faulty nervous system is that the fight or flight tends to not work properly. The tendency is for sympathetic (activating) nervous responses to be overdone and parasympathetic (calming) responses to be underdone. As a result, fight or flight is a pretty common experience for many dysautonomiacs.

A fellow blogger over at ‘Healing from the freeze’ wrote a post back in 2011 which I’ve belatedly come across. Tracy Andrews is an acupuncturist and was looking at the involvement of the vagus nerve in trauma, namely that it kicks in to help us cope by kinda distancing us from the pain, and that mindfulness is therefore very difficult in trauma patients. She also points out that this is important on a physical plane, not just an emotional one, as the experience of trauma affecting the vagus nerve means that we feel a visceral response (a ‘gut reaction’) to trauma. That physical pain and discomfort is now recognised as part of the trauma experience. If this sounds weird just think of how normal it seems to us when we see a TV character’s response to something horrific is often to feel sick or even to vomit. It’s our innards functionality getting disrupted by the nervous system that causes this kind of physical response.

My reason for this post is to inform both mainstream and ‘alternative’ practitioners of the Dysautonomiacs’ experience to trauma as being very different from that understood as the norm. We need professionals to work from a base of understanding that our trauma response is very different from what’s expected, and that any trauma treatments aimed at reducing vagus response and removing the traditional blanket of numbness is actually the exact opposite of what is needed in our case.

Our vagus nerve doesn’t work properly! We regularly get fight or flight responses over the most stupidly small things, but the impact of that is not fleeting or brought under control with ease or automaticity (coz we don’t really ‘do’ automatic processes, or at least we tend to have a diverse array of faulty autonomic responses).

When we experience trauma, we feel all the same gut wrenching pain and anguish that anyone else does, but we don’t get that numbing sensation that often initially shows up after a shocking event. We simply continue in the same high level of distress and cannot find a way to bring that level down.

I wasn’t always a dyautonomiac. I have experienced the vagus calming impact. I know my nervous system is a sandwich or two short of a picnic these days, but I’d never consciously applied that knowledge fully to my two year long stint of living in permanent gut-twisting distress. I even described it as like being ripped apart from the inside out and as being physically painful and yet never fully made the link until reading Tracy’s post. It was non-stop 24-7 and I struggled to function and to make sense of things around me. I have always looked at those years as being ‘nervous system stoopid’ and though I acknowledged that it was a physically painful experience and that science backs up that trauma causes physical pain, I had not consciously tied the latter in with the vagus nerve specifically. Not surprising really as when in fight or flight, higher brain functions don’t get supported any more. Brain-computer says “no”! And as I experience a lot of fight or flight effects (it’s a continuous management issue) I don’t get much Brain Time these days.

making-tea-with-near-fainting

A specialist confirmed that my fight or flight switch was stuck in the ‘on’ position and had been for a long time. Let’s just drift over the fact that scientists reckon that the fight or flight response is, yes, useful, but damaging if ‘on’ for more than two minutes straight. My several months of whackadoodle respiratory processes seemed like nothing after the two years of not knowing what was going on when my Mum disowned me. Those two years are what are foremost in my mind as I write here about the physical pain of trauma. No trauma I’ve ever experienced was like that and I was in a perpetual state of fight or flight that made it very hard to get through from one second to the next. Many months of being ‘on’, followed by years of being ‘on’, permanently having to monitor and manage my symptoms because my default is now for my fight or flight to be, yes, switched on. You see how far removed we dysautonomiacs are from the trauma ‘norm’?

Interestingly, the one thing I found that didn’t help exactly but kinda almost got me through each second at a time, was what I now realise was my own attempt at the numbing/blanket effect that my nervous system wasn’t giving me. I’ve written about this tool before but not from a visceral perspective. It didn’t come anywhere near being numbing in any shape or form but it helped me to survive through each moment. That thing was to play an immersive console game, when I’d never been a gamer before. I mean I’d played Sims occasionally, but not what I thought of as ‘proper’ gaming, heh. It was a couple of Bethesda open world games (Oblivion and Fallout 3 as it happens) that were non-restrictive – you can go anywhere, do anything. There is a central storyline, but you do it whenever you feel like it, leaving you to act on whatever is most effectively stuffing your brain with ‘other’ at the time.

Understandably my system is mega-faulty after that incredibly prolonged period of flooding my brain with chemicals shouting ‘Alert! Distress! Danger!’. It was going downhill at the time; hence the misunderstandings and miscommunications, but that one event pushed everything skyhigh. I now have to take neuro’ meds to help stabilise my autonomic nervous system. They don’t magic the malfunctions away, but they do help to reduce the extent of their impact significantly. I still have to be very careful about how I manage my brain and body when I feel the responses going doolally (which can be multiple times a day).

The key for practitioners (and self-advocating patients) out there is to understand that this difference in neural response post trauma is significant and treatment needs to be appropriate to each patient’s wiring. The wiring in dysautonomiacs is wonky so the treatment has to be on a proportional incline!

hoofbeats2

This is why rare disease (and rarely known disease) patients use the zebra pattern when awareness raising

 

If you’re a fellow patient experiencing fight or flight issues then definitely talk with your doctor about it. If they don’t realise that the nervous system is affected as part of your condition then have a look through my FAQ of links and research in case there’s something there you can print off to help them understand. Please note: doctors are trained to learn from science so general media articles won’t be of use to them, so go for the research papers when you can, medical practitioners are totally used to working with those.

My fellow blogger, Isy Aweigh (over at ‘Living anyway: Life, CRPS and Everything‘), kindly checked this post for me before publication coz, as it turns out, writing about the fight or flight response, yes, you’ve guessed it… sets off my fight or flight response. My thanks to Isy for making sure this post made sense (and for adding a truckload of commas to slow me dowwwwwn)!

Showing the post to a fellow patient before publication meant that we found we both have similar experiences with trying to calm our nervous system down. We both find the type of mindfulness that focuses on the ‘physical within’ pretty useless. Our innards don’t play well with others and it seems that includes our conscious attempts to calm them so we have to take a more indirect approach. Our approaches are specific to us as individuals but there is a lot of overlap because we utilise what happens to calm us, rather than focusing on calming. For me I pretty much go through them in this order:

  • I can use breathing techniques but it has to be with a QiGong (Chi Gong) focus for me. I can’t focus on the breathing itself, it has to be on pushing my stomach out to draw my diaphragm down. I imagine I’m drawing energy in with the breath and down to my stomach, it gets drawn down through my body to the front of my stomach then down and round to come back up towards the back of my body and leave through my mouth again. Keeping whatever energy my body needs and giving the rest back to the universe. Pretty calming no? Well, it helps me a darn sight more than focusing on my breathing does because I need to be calmed by what I’m doing, not to try and focus on calming what doesn’t like to be calmed. Focusing on what’s wrong and trying to correct it doesn’t work for me, I have to come at it sideways.
  • I think of Magic Dude which both lifts and calms me with love. I realise that I’m currently pretty lucky to have someone like him in my life, but if he wasn’t I would do the same thing with my most precious of besties.
  • I think of my eventual art area, in our currently partly renovated home, and it makes me smile. It is going to enable a return to a great joy of mine.
  • Doing some Tai Chi would be my best option for sure. It wins by faaaaaar! When Tai Chi-ing my mind is occupied with that alone. It is a moving meditation and supremely calming for me. My pain condition means that for most of each day that simply isn’t an option for me, so…
  • I run through Tai Chi moves in my head. Research has shown that clearly imagining movements in our heads actually strengthens the neuronal pathways that we would use if we were actually doing the moves physically. So it’s not surprising that thinking through the moves is almost as calming as performing the moves with our entire body.

The reason they’re in this unexpected order is because fight or flight wobblers can occur anywhere. We need simple on-the-spot options that we can do without drawing attention to ourselves. It’s not helpful having to prioritise answering questions over health management, so subtle is handy but also much needed when activity is restricted. So Jedi mind tricks are key! 😉 But yes, I will break into Tai Chi anywhere if I need to or if I simply feel like practising! I’ve been known to Tai Chi in supermarkets, D.I.Y. stores, car-parks, you name it! And people tend to not interrupt when you’re being that weird! Hehe

But that’s just my own array of tools. I wonder how much we all overlap with the approaches we’ve developed which work for each of us?

xx

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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

CRPS Awareness photo challenge: time

Photo challenge: The biggest roadblock in my life other than pain.

Time.

Suzy's photo challenge, 2015, day 16

 

 

I have limited activity per day re pain management.

I have limited activity, functionality, independence per day re the worst of the Dysautonomia symptoms.

I have limited ability to think, process and get brain stuff done because when I use my brain I can only do so for a while. Then it falls over and stops functioning and I’m blooming useless until it recoups. How long that takes depends on multiple variables.

With pain management and brain time it is the unexpected opposite… use it and I lose it. Every time. Though there’s no guarantee that I’ll have any type of functionality at any given time either .

So time when I’m able to think and do is so precious because of its rarity and fleetingness.

x

Losses and hope

There’s a photo challenge running this month for CRPS awareness. Yep, Nervember has come around again and I’m sporting my orange awareness ribbon on my bag and have matching ribbon lacing my knee-high boots just to make it stand out more. Every year I’ll get asked about it and that’s the whole point. Raising awareness amongst people who wouldn’t come across the information otherwise. 🙂

One of the challenges is to post a poem or quote which describes the losses I have experienced as a result of CRPS impacting my life. And the very next day the challenge was to post a picture about hope.

The losses challenge resulted in me just writing from the heart, that bit was natural. The hard bit has been making myself post it.

The list of losses are initially from way back (I’ve come a long way in knowledge, pain management and personal growth these 16+ years) and the last loss is just 5 years ago (please don’t worry – I’m coping. The last line is less severe these days as I have worked to find new meaning in who I am. I am still grieving, but also living again).

Losing so much as a result of an acquired turn of health is enough to make anyone depressed but CRPS is known in the USA as ‘the suicide disease’ because without diagnosis there is no treatment, no support and crucially no understanding for a patient who has mystery pain which doesn’t make sense. People just want out. It’s too much. Too relentless. Often with no answers.

But loss of neurological function is different. It’s terrifying when you find out what’s happening but before that it’s just confusing. Everything is confusing. Basic conversations become really difficult because you just end up guessing all the time. And then you try to reply with something which hopefully is on the right lines to make some sort of sense. The likelihood of misunderstandings beginning and continuing is frustratingly high when we’re going through this.

Loss of family is so common for CRPS patients that it is surprising (but wonderful) when we meet a fellow patient who hasn’t.

It’s so hard to rise to the awareness month challenge and post this. I don’t like to focus on the old losses and I still struggle daily with the latest one. Egads! Okay,
here goes…

Suzy's photo challenge, 2015, Day 6

 

And because I can’t end this post on that note, here is the post about how I eventually managed to find myself and start to re-build my life:

The way forward for me after the greatest loss was to find who I am at my core. I had to anyway because loss of family meant a large part of my identity was no longer there. So I had to rebuild with me at the centre instead. It felt very alien to do so, and was rather like a rollercoaster ride but it was worth it.

Knowing who we really are at our core is one thing but having our identity built on that alone is quite another and it allows us to live that core openly and comfortably every day which results in a sense of peace and a kind of improved emotional suspension system which smoothes out the bumps. When we are truly ourselves resistance falls away. We can just be, because when our identity is rebuilt on who we truly are (instead of where we come from, who our family is, what others think of us, what we do/did for a living, societal role expectations and so on) there is no resistance. There is just us. Other’s opinions may affect our emotions but our sense of self is no longer affected by them. And from that point life kinda opens up. 

Suzy's photo challenge, 2015, Day 7

 

xxx

 

 

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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Invisible Illness Week 2014

Invisible Illness Week is 8th-14th September and the 30 questions are in circulation again. So here’s my answers for this year, it will be interesting for me to see how different they are from last years answers too..

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30 Things About My Invisible Illness You May Not Know….

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1. The illness I live with is:

Multi-systemic – it affects entire systems in my body with multiple ongoing issues all day every day…

faulty autonomic nervous system,
which affects the central nervous system,
plus unhelpful neurological re-wiring and
a compromised auto-immune system.

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So I have a terrible disease but not to worry

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2. I was diagnosed with it in the year:

CRPS in 2005

Dysautonomia 2014 finally in writing, though it was diagnosed verbally back in 2010

Partial Hypermobility 2014, as the mega ‘growing’ pains and clicky joints were dismissed by my childhood GP despite my Mum’s concerns

Degenerative issues in hips 2014

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3. But I had symptoms since:

CRPS since 1999

Dysautonomia since 1999, it kicked in within weeks of the CRPS with IBS, closely followed by a tendency towards low blood sugar and body temperature dysregulation.

Hypermobility always (also affects the autonomic system)

Degeneration in hips over time – a development potentially related to the hypermobility

All of these conditions are inter-related. The issue from birth was the hypermobility… which can affect the autonomic nervous system but I experienced no major issues there originally.

The pre-disposition to autonomic issues and the priming of nervous system default responses during childhood resulted in the development of CRPS (which involves faulty pain signals through the ANS) after a minor injury… which had the knock-on effect of more autonomic issues developing over time (some within weeks, others years later after a trigger event).

Plus the long term hypermobility has also had its own effects on my joints.

So it’s all very over-lapping.

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4. The biggest adjustment I’ve had to make is:

Learning how to still be *me* despite the massive lifestyle changes.

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when life gets harder

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5. Most people assume:

That I’m not that ill <facepalm>

(because I usually look and sound fine when they see me during my physio’ which is the tiny portion of my day where I’m mostly functional) :-/

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What you see depends on what you look for

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6. The hardest part about mornings are:

Having to wait for hours to actually be able to move about with less extreme pain and/or less extreme near-fainting.

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7. My favorite medical TV show is:

Scrubs 😉

(In the UK medical programs are all soap operas. We also have documentary series which might occasionally cover a health issue).

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8. A gadget I couldn’t live without is:

The kettle!

(because my hot water bottle is a permanent fixture in my daily pain management *and* the kettle also enables cups of tea!)

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9. The hardest part about nights are:

I know I should probably say the pain, or the fact it never ever ever goes away, or the silent tears that might escape every once in a while when it gets so hard to just keep fighting when even sleep won’t grace me with it’s assistance. But you know what really bothers me the most? Trying not to wake Magic Dude up coz the headboard creaks when I shift position when I’m sitting up!

(He says I shouldn’t worry about it but I’d rather he got more sleep)!

That not to say that it’s worse than the other things, just that the other things are permanent and horrific so I tend to focus on the fleeting or non-health aspects of the toughest stuff to help me to deal with it!

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10. Each day I take ? pills & vitamins:

9, plus painkillers when required (with occasional anti-inflammatories though I try to keep away from those if possible owing to detrimental long-term effects)

Bitstrips, meds and supps

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11. Regarding alternative treatments:

‘Alternative’ can have many interpretations. If we’re going down the ‘anything that’s not prescribed’ route… even 8 of my 9 pills are supplements crucial to assisting my body cope with this condition. I ‘pace’ my activity to manage my pain (because it retrains my autonomic nervous system to not over-react). I don’t just do functional movements at home I also attend classes to further strengthen my muscles, improve my balance, work on my awareness of surroundings and where parts of my body are during different movements etc. I also attend a tougher class once a week as I find that this enables my nervous system to compare the rest of the week with that hour rather favourably which also helps baseline pain levels! I’ve had acupressure, auriculotherapy (non-invasive acupuncture on the ears) and even carefully applied acupuncture (they didn’t help the respiratory issues because the faulty de-fault had been set in place for too long, but it was worth a try especially as it was available on the NHS which, by my own description of alternative being non-prescribed treatment, renders all that as mainstream medicine now anyway). I use helpful psych tools for dealing with problematic symptoms of my conditions and to work through any negative feelings I may experience about various aspects of my health (these are available through pain management teams on referral but I acquired these skills myself partly through my psych’ studies but mostly through self-searching and trial and error). I learn much about my own conditions so that I can logically work around the health issues and give my body a better chance of coping with all that is wrong within it. I also happily accept reiki healing offered by friends.

My conditions mean that meds are very problematic in various ways, so doing all that I can to try to keep things vaguely functional without adding the negative effects of meds is reeaally helpful.

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12. If I had to choose between an invisible or visible illness I would choose:

I have both depending on whether it’s during a paced active part of my day and how much various symptoms may be playing up in that moment. Both have their pros and cons, but having both gives me the extra insight which I can employ usefully by helping others, sharing insights and so on.

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13. Regarding working and career:

Work is not just paid employment so although the psych career went down the pan for me I have the 24/7 job of keeping my body functioning as best I can which includes trying to keep up with the latest research when I have enough Brain to make sense of strings of words. My hands are full just with that. When possible though I also spend time assisting in a couple of support groups (albeit rarely at the mo’ as I’ve been more symptomatic of late) and the infrequent addition of writing of course. 🙂

What's wrong with my brain

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14. People would be surprised to know:

How bloody awful I feel at any given moment!

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Pain scale with continuous smiling!

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15. The hardest thing to accept about my new reality has been:

How much it keeps me from doing really worthwhile things that would help others e.g. starting a charity as a healthy person would not take two or three years just to get to where we are with it now. It will be really helpful when it’s set up, but it’s so frustrating to be kept from doing things when there are good things to be done, it just means that everything is so slow going.

(Or, more personally, the people I’ve lost as a result of the effects of these conditions. But I’m still steering around that a lot of the time, although at least I’m finally coping better with it now it’s four years on, x)

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Start where you are, use what you have, do what you can

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16. Something I never thought I could do with my illness that I did was:

Start learning martial arts (albeit adaptive, but many able bodied people have injuries to work around so really ‘adaptive’ is a typical approach, or should be anyway).

when nothing is sure everything is possible

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17. The commercials about my illness:

That’s a very US thing, as the UKs NHS is now mostly privatised and getting more so I would not be surprised if we started seeing things like that over here eventually as it will lean more towards insurance for health care and all the knock-on effects that entails. There is certainly very little awareness of CRPS and Dysautonomia in the UK, even amongst most medical staff though, and I would be surprised to hear anyone talking about CRPS or Dysautonomia.

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18. Something I really miss doing since I was diagnosed is:

Dancing. Not professionally or anything, just dancing for the enjoyment of it.

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19. It was really hard to have to give up:

The career path I was working towards.

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Problem or how we percieve it

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20. A new hobby I have taken up since my diagnosis is:

Tai Chi

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21. If I could have one day of feeling normal again I would:

Skip! I would skip gleefully and laugh a lot!

Of course there’s so many things I’d want to do and any of them would be awesome, but the first natural thing of the moment would be to laugh with pure elated, unabashed, incredulous glee and skip skippety skip! (There’d probably be a cartwheel pretty soon after that, too)!

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22. My illness has taught me:

That I am stronger than I ever knew and in more ways than I realised.

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you decide how your soul grows

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23. Want to know a secret? One thing people say that gets under my skin is: 

I don’t expect much from non-CRPS people, not in any objectionable way at aaall, but simply because how could they ever be expected to know about such a complex and little-known condition? I certainly wouldn’t have prior to actually having the condition, and it took several years even after I was diagnosed to find out. But when doctors doubt the fundamentals of the condition(s) I have, or start down the “and what makes you think you have CRPS?” route…gah! It’s okay, I mean I can pull them back down to earth with a thud when I point out that I was diagnosed by one of the countrys top specialists courtesy of my medical history and an MRI scan as the clincher, but it’s the time it takes you know? It’s wearing having to explain basics to doctors all the time, and it’s a waste of valuable time.

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Arse from elbow

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24. But I love it when people: 

Check to see if I’m okay to do something because they know it might cause issues in my body. It gives me a chance to say if I’ll have trouble doing that today and it doesn’t put a damper on things because *that’s* why they asked. Looove those friends  😉

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25. My favorite motto, scripture, quote that gets me through tough times is:

“Be the change you want to see in the world”

I still use “This too shall pass” (a lot!) but I fancied including this other quote as it is a huge motivator for me.

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26. When someone is diagnosed I’d like to tell them:

Anti-oxidants!
Pacing!
Beware of outdated and incorrect info’ online!

Anti-oxidants..
Inc Vit C up to 500mg at a time (because that’s all the body can absorb in one go) 2-3 times a day. This is also a good thing to do before and after any invasive procedure (even dentist appointments) and 2-3 months after the event is common advice.

Many long-term CRPSers take vit C every day.

Antioxidants are so important to the long-term health of our mitochondria. I also take Co-Q10 every day.

Pacing..
the same amount of activity every day no matter what the pain levels. Starting with a few minutes if that’s all that’s viable is fine because it’s keeping it consistent that is important in retraining the autonomic nervous system to not set off the inner alarm bells every time you move. Eventually this will reduce the pain baseline and improve quality of life and it will even out the days instead of having good days and bad days (which we perpetuate by doing more on good days thus causing bad days and which is the worst thing we could do because it reinforces the faulty autonomic over-reaction, and hence the circular hellishness goes on if we do not pace)

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Online info…

The ‘stages’ were discarded in 2004.
The ‘types’ were a carry-over from the old RSD name but it makes no odds which you have – the nerves are damaged in both cases and the treatments are the same

Lots of info’ online is so terribly out of date and therefore incorrect. Research in recent years has shed loads of light on CRPS and most websites do not have this latest info’. Many fellow patients are also not aware of the latest knowledge and (sadly) neither are many doctors.

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27. Something that has surprised me about living with an illness is:

How much you often become one of two extremes depending on people’s view –
I’m either…

a) not that ill really or
b) not really a person, irrelevant to the point of near invisibility

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pirates have no concept of ableism

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28. The nicest thing someone did for me when I wasn’t feeling well was:

This past couple of weeks the near-fainting has been so so bad I’ve even been missing my crucial paced physio’ time. On a day where I was spinny on the sofa Magic Dude turned up after work with pizzas.

At the Tai Chi nationals in June I competed even though I felt so awful. I concentrated so hard and sweat was pouring off me by the time I finished my handful of minutes. As soon as I could leave the performance area I collapsed. Magic Dude was on hand with a bag of salted peanuts, a bottle of water and a sweet drink. He is on standby when I get really symptomatic and he generally knows what to get for me depending on which symptoms are being particularly arsey!

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29. I’m involved with Invisible Illness Week because:

The concept of ‘disability’ in the UK is worse than ever since the welfare reforms and the posited concept of the disabled as scroungers. The number of attacks on the disabled has increased shockingly. I have been screamed at for parking legitimately in a disabled parking space and yet I have many a time gone home in tears because the disabled bays were taken by people with no badges and the screaming pain was so bad I had to turn round and drive home again and wait days (weeks in the pre-diagnosis years) for the pain to calm down enough for me to try again.

There is even an organisation pushing for a more active looking disability symbol but still only include a wheelchair user in that symbol. Only 7% of UK disabled use a wheelchair so no wonder concepts of disabled have been so skewed for so long, let alone the worsening effects of contemporary politics. So it is apparent that even some of us disabled folk are conditioned to think that the wheelchair is the most appropriate symbol for a group of people, when 97% don’t wheel about the place and therefore are often targeted for not looking disabled.

To work so hard to change a symbol which does not address the distressing effects experienced by 97% of disabled who are mistreated for not ‘looking’ disabled is hard to get my head around. It’s a nonsense.

We need change.

And we need to make it happen, because we have the informative inside view.

.accessibility

7% of UK disabled, 93% of disabled look nothing like this picture

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new NY disabled symbol

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7% of UK disabled may experience improved attitudes, but 93% of disabled look nothing like this picture

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A broader idea of disabled which includes the concept of non-wheelchair users and which could help to broaden understanding of disability and thus result in less aggressive behaviour towards the 93% non-wheelchair disabled when they legitimately use disability utilities, parking bays etc

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30. The fact that you read this list makes me feel:

Relieved that someone out there wants to learn more during Invisible Illness Week.
So many people don’t realise that many disabled and chronically ill don’t necessarily look unwell.

So… thank you xx

seal of approval

^ geddit? X-)

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I’ve just had a look at my post from last year and I’m intrigued, and pleased, to see the positive changes in my answers to 15 & 18. 🙂

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A note on pictures: I have found these wonderful pictures floating about being shared on social media. If one of these is yours I would love to attach an official source so that others can find your work, or if you would prefer your work not to be included please do let me know and I’ll remove it straight away, x

Suicide, the difference between wanting to kill yourself and wishing you didn’t exist

Contact with fellow patients who are currently feeling suicidal is part of the norm for many patients with chronic conditions. Anyone who’s been there ‘gets it’ and if we’re strong enough to support without our own coping mechanisms being compromised then of course we do so. Because we’ve been there. And though we each have to dig ourselves out of the mire it helps when there is someone out there saying “I believe in you”.

The reality of suicidal thoughts is not that someone wants to ‘kill themselves’, the thought of having to do the ‘killing yourself’ part is horrible so you want to find the least horrific way to do so. The ‘killing’ bit is not the point. The point is that someone who is considering suicide can see no way forward. No way out. Their situation has become so overwhelming that their coping mechanisms just can’t balance everything out. This is not a failure on their part. And if you’re reading this and you feel like this right now – this is not a failure. It is human and understandable. And you are not alone in this, there are people out here who understand how you feel and why you feel this way.

It is also not something to be ashamed of. It is understandable that someone with health issues that are changing their life, to the extent that they don’t feel like it actually is their life any more, feel this way. With pain levels so high that is impossible to think, to function or to see further than the darkest of times that currently make the light seem like nothing but a long lost memory. And not just pain. Crawling along the floor because your body is trying to make you pass out. Feeling like you’ve just won a medal because your body has actually allowed you to have a poo and this time you actually didn’t end up on the bathroom floor with your body temperature going through the roof, stomach thinking it should vomit right about now, body wanting you to lie down or it’ll make you faint and meanwhile you watch the room spin and spin whilst your head throbs so hard you just wish you’d pass out and miss having to experience this bit. I mean seriously, when your life has changed so much, no wonder you’re left reeling. And no wonder you just want to opt out. Many fellow patients know about this. You are not alone.

Time and again I’ve heard fellow patients echo my own words from years before, “it’s not that I want to kill myself, it’s just that I wish I didn’t exist”, “if I could just choose to not wake up…”

If you’re feeling this right now, I get it. I understand. I’ve been there.

As Rellacaffa also pointed out, society tends to say “Shhh! You don’t talk about suicide“. And you know what? We should. To not talk about this is to leave all those experiencing it feeling alone, forgotten, left on the sidelines and with no way out other than the very final way. Seriously the number of people who have been through this is huge. And to come through it is truly hellish but, trust me, when you start to build that way-out the light begins to seep in again. There is another way.

And you are not alone. (If you’re feeling these things right now I’m sending you a hug right here, xx)

When I realised just how different wanting to kill yourself is from wanting to not exist, I got stubborn. Why should I be stuck looking at opting out in such an extreme manner when I knew that the situation had overwhelmed me so utterly that my coping skills just weren’t enough any more? Why should I be put in a position where I’m considering giving in, how dare the world work that way? So I decided that I needed to take a new approach or things were not going to change.

When you hit rock bottom you are faced with two glaring options a) opt out, or b) refuse to opt out. But if we want to refuse then things can’t stay as they are. It’s that simple. Things have to change. So the options really are: a) opt out or b) change things.

With our coping mechanisms so severely outweighed the changes have to be of importance to us. And when we reach such an extreme stage in our journey we have to be prepared to take a step back and be honest with ourselves about everything. We get our head to separate out different aspects of our life and allow our heart to be honest with us on each one. Then we have to make a decision about what needs to change. What is most important to us. What will keep us alive? What will make us want to stay alive?

For me my change was to upsticks and move home. Which seems massive when in that state but it was what my assessment of my life at the time led me to and frankly if it’s going to stand a chance of changing things so that the coping mechanisms stand more of a chance of balancing things out then it’s worth it. I had been continuing to live in an area that I used to work in. I had already managed to get my mentally abusive boyfriend to finally go away. (It’d only taken about a year of asking him to go and him refusing. Yep, I was that run down that I couldn’t even call the shots on my own relationship, doh)! And the subsequent fleeting boyfriend had opened my eyes to what life could be like if there was someone who wanted to spend time with me and even help me get out and do things. That realisation that another life was possible was what tipped me over the edge once I was back in my isolated existence again, but it’s also what drove me to push for the changes. I wanted a life. I accepted my health issues, but I did not want to accept the unnecessary additional negatives too.

For others the main change might be having to give up work to remove some of the stress levels and allow for better pain management, or contacting the local pain management team to ask about training in handy psychological tools for patients with chronic conditions. Certainly a change of focus is required and we need to point ourselves firmly in the direction of life and refuse to dwell on health stuff. I mean we obviously have health stuff in our faces all day every day, but there’s a difference between productive temporary thinking and circular negative thinking. The first can be useful when required then put to one side so that life can happen, the second takes over our continuous present so that life gets squished out of the picture. We deserve to have an existence that we want to hang onto. So we need to figure out what it is that we want to hang onto and what it is that prevents us or makes us feel like we don’t want to hang on. What is it that lifts us that we can get more of by changing something? What is it which brings us down which we can remove or change so that we are not quite as overwhelmed?

Talk to someone you trust, whether near of far, allow yourself to put what you feel into words. If there’s no-one you’d feel truly comfortable doing this with then contact a support line, or get referred to a clinical psychologist (often also available through pain management teams) who can help you to gain handy tools and to figure out what needs to be changed. You deserve this support. You have a right to this support. It is part of the health issues you face and you do not have to do this bit alone.

I know many fellow patients who have also been through this. And their strength and optimism probably means that others do not realise that this is a part of their (our) past, but coming through this has that effect. We are stronger, we know ourselves better, and quite frankly when you’ve stared that option in the face and found another way instead then you know that you can handle anything that comes your way. So there isn’t just another way, it is one heck of an amazing path that can lead you to places you currently can’t see or imagine, but we all started where many patients are now. Where maybe even you are now. We were there. We understand. We ‘get it’. You are not alone and there is another way.

Love and strength,

x

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Additional links for medical staff:

Experienced nurse in multiple areas, Isy Aweigh writes here on some hugely important tips and insights for medical practitioners with potentially suicidal patients.

Michael Negraeff, MD, wrote last month of an experience with a suicidal patient here, and his thoughts link in with Isy’s article above.

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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Autonomic stabilisation (attempt #3)

I’ve written before about my autonomic issues, tests and attempts at autonomic stabilisation, but recently I realised something pretty awesome! I should have seen it months ago but I guess I’m a slow thinker! 😉

Last Summer I was regularly keeling over in the heat. The near-fainty was strong! I carried a flask of fluids everywhere with me, as well as salty snacks and my folded walking stick. There are two sides to my feelings about warm weather:

1) “Yaaaay, at laaaast,  the CRPS pain should lessen a bit!”
2) “Oh no! Back to the regular near-fainting again!”

Unfortunately CRPS & Dysautonomia make a pretty good team for setting me up with health challenges all-year-round.

This year the nagging Dysautonomia hints were tugging at me even in January so I was dreading how bad they’d be by Summer so I went to the doc’s to try to pre-empt it and plan ahead. Surprisingly something actually showed up on another 24 hour ECG (usually heart flutters happen immediately before or immediately after the ECG just to test our patience! 😛 ), and the something turned out to be a 46 second heart ‘pause’. Lawks! So she referred me to a cardio’. Of course the referral failed, got sent again, turned out to be wrong, and all sorts of the usual high jinx. So here I am still waiting for an appointment 7 months after referral, in full-on heatwave (well, British stylee anyway 😉 ) and still no input….

But….

And yes it’s a big “but”…

I have been way better this Summer. Whaa?

I remarked after the Oxford Tai Chi tournament that it was really wonderful to experience what it’s like to get to perform without having to battle so hard against the near-faints (near-syncope). That was only in April but the weather continued to warm up and I continued not so fainty.

When I was worse earlier in the year I wore compression stockings (as recommended by the autonomic consultant) but have noticed a lesser need for them recently.

I also tried the salt tablets (recommended along with the stockings) but could not ascertain a clear difference. So the doc’ took me off them again…. but I didn’t get worse when I came off them, so what’s going on?

Brain fog (2)

I have been muddling along being rather puzzled and confused about this for a couple of months now. Then the other day I was doing some reeeaaally light gardening, stood up… and then went immediately dooooown again. The faintys were back and they were strong. Totally out of the blue, just like that!

And the next day too.

There was no clear direct connection with activity levels, pain levels, stress levels or even heat. I do get worse in hotter environments but apparently it has to be substantially hotter before it affects me these days.

The gardening bit of my brain (this brain area gets bigger as I get older 😉 ) reminded me that it must have been humid recently as we’d been looking up how to treat powdery mildew on my gorgeous moonfire dahlia. And a fellow Dyssie confirmed that yep, humidity knocks her for six too, and then some.

But why the overall change I’d noticed before the humidity hit?

It dawned on me this morning that I didn’t start taking my latest trial of an ANS stabiliser until September last year, and it wasn’t increased to my current dosage until October – so this is my first Summer on this medication. Woah! Mind blown! You mean this thing actually works??!

Crikey!

And woooohoooooooo!

If I could dance around the room without keeling over I would do so, but grinning and giggling to myself on the sofa will suffice. 😀

meds and supplements

Don’t get me wrong – it doesn’t ‘fix’ the problem and yes there are side effects and other aspects to be weighed up. I have no idea what is going on with my symptoms unless I log what’s happening to them over time. I’ve done this with the different potential ANS stabilisers so that I can see the pros and cons of each over time. It looks like I’m gonna have to add a new column with an update!

Here’s what I have listed for my current ANS stabiliser, they don’t necessarily have anything to do with it directly but even so there’s often an indirect link I find out about later (e.g. the effects on the central nervous system, because everything on our bodies interrelates and works together anyway). So I record everything just so there’s a snapshot in time to refer to anyway…

Pluses since starting the latest med’:

  • Near-fainting is set off far less by heat alone and baseline is better
  • Less nausea in general (but still bad at times)
  • The heart dysrhythmia and flappity-floppity (technical term, honest) has been less frequent on all three stabilisers I’ve tried
  • Migraines went back to a more usual regularity
  • The jaw-clamping (bruxism) has eased off a lot
  • Fewer tremors and less extreme too
  • Sharp nerve pains less common
  • Reduced hyper-senstivity to hot and cold (still super sensitive, but any improvement is good, right? 🙂 )
  • Tingling and numbish sensation in face and arms when feeling faint is worse than on other meds tried but is still better overall than pre-meds
  • Fatigue is still bad but less than pre-meds
  • Improved baseline regarding insomnia
  • Pain levels possibly slightly better? Hard to tell because they got so much worse with the previous med’ that I tried!
  • Shoulder pains improved from permanently extreme to varying (but more owing to my changed habits than meds)
  • Less frequent eye-tremors
  • My hair is less strawlike
  • My nails are variable but still better than pre-meds

Remaining crapola:

  • (On this med initially the near-fainting was a lot worse – a stage I had to work through first)
  • (Initially the nausea was worse, too)
  • (Initially more clumsy but I worked on improving my awareness to reduce this over time)
  • (New types of dystonia – initially my left hand would curl in when I wasn’t using it and even my right hand sometimes too).
  • (Initially the dystonia was loads worse in my legs. Plus I would get even more severe restless legs at night, resulting in even less sleep). Still get restless legs issues but not as severely. Likewise with the dystonia in the legs.
  • Brain fog (including problems with words) is worse than on 1st med I tried
  • Bloating worse than on 1st med
  • Constipation worse initially (now is variable and better than that but still crap. S’cuse the pun!)
  • Sweating is waaaay worse. Waking up cold and wet with the bedclothes, and even the bed, soaked through is a common occurrence now
  • Respiration issues got worse (but I think they have settled again. Either that or I’ve just got used to it!)
  • Allodynia on specific areas of skin where the sensation is well and truly kerfuffled (never had this pre-meds)
  • Far more popping, clicking and cracking of joints, and more extreme too. Especially shoulders, and also new weird places to crack like my breastbone. (Noticeable change from when started first ANS stabiliser but can’t see how it would relate)
  • Sharp and extremely severe abdominal pain, not just associated with urinating as it can turn up out of the blue too (less severe and less often in chest, and sometimes head!?). The abdominal, and maybe chest, may be related to my greater hypermobility in my core, but the head pain is a weird mystery!

So yeah, pros and cons!

But being less fainty is crucial to me as I have to be active during my allotted physio’ each day otherwise I cannot manage my pain. So that was the tip-top number 1 issue that I desperately needed addressed. With nothing being straight-forwardly black and white in this game it’s about our own priorities and weighing up the related pros and cons for each of us as individuals with each medication.

And when it comes to brain medicine – we all react differently. So what works well for one may be positively awful for another. A lot of people seem to find that Zoloft/Lustral really helps them whereas it put me into a state of permanent cluster migraine and feeling really ill, so it’s awesomeness in helping my autonomic issues really was of no use with side effects that horrific and disabling. Citalopram is renowned for having side-effects and isn’t even used any more in the USA, and indeed the side effects I experienced were too rough for the ANS benefits to outweigh them. I am currently taking Venlafaxine in an attempt to reduce the jaw-clamping and other motor-issues which had got so out of hand on the Citalopram. It has indeed reduced the motor issues substantially. It is not as effective as an ANS stabiliser in my body as the Citalopram was, but the side-effects are way less. Overall it is the best of the three that my doc’ and I have trialled in my body so far.

Now I’ve just got to figure out why I got worse early in the year. Was it really humid in January?! O.o

x

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