My CRPS journey to happiness

Hello! Yes, it’s me, please don’t fall over in shock! I know I’ve been awol for a while whilst getting to grips with the final dissertation for my studies. Today is allocated to studying, well, in my functional moments anyway! However, I’m in a lot of pain from how I’ve been sitting so I’ve moved to the sofa (complete with duvet and hot water bottle, of course) and rather than faff about online doing unproductive things whilst I wait for the pain levels to calm down a bit, I decided to pop in here and wish you all…. (wait foooor iiiiiit…)….. a very happy first ever “International Happiness Day”!

Guffaw!

Seeing as my brain is full of study and it’s a more painy day than usual I don’t relish the thought of going out for a physio walk today and getting told to be happy, when I’m concentrating on moving through the pain! But I do like the idea of formulating some replies that would subtly inform whilst making me laugh hilariously at their surprise at my daring to be so jokey about such a serious subject as my health! (Twisted sense of humour, much?)

I remember a horrific physio walk, back in my early physio days. The physio experience got soooo much better because I persevered with it, but this was back when I was desperately trying to slowly make it around the (very small) block without bursting into tears. Then the ruddy postman cheerfully suggested to me that I should “cheer up love, it may never happen!” as he passed me by. Okay, so the thought of punching him in the face did occur to me in my imagination, but in reality I just feigned a smile and promptly burst into tears the moment he’d turned away.

We all know those days. But I’ve found that happiness creeps into my life in new ways. Admittedly I look for it because I want to be happy. I’ve spent time thinking about what truly makes me happy, and it really is the simple things that make me both happy and kinda peaceful on the inside, too.

I smile when the sun shines. I really enjoy a nice cup of tea (oh okay, many many cups of tea!). I adore my friends near and far, (some of my closest friends are beautiful souls I met through online CRPS groups, and even lovelier is that they are beginning to meet those of my closest friends who know me from the 3D world and they are becoming friends with each other, too. *glee*).

I loved hearing the first Spring birdsong a while ago (Spriiiing is on the way… waaarmth is on the way! Okay, so we’ve had more snow since then but I didn’t foresee that at the time so I still smiled at the Spring songstrel)!

I set myself little goals because that way I am not endlessly fighting to get to a far-off distant goal. Instead I achieve little goals along the way to the big goal, each of  which gives me a sense of achievement and makes me smile. It brings a feeling of capability and self-worth with it, too. Often my big goals are questionable as to whether I can actually achieve them, but my view is that I don’t know if I don’t try, and if I achieve lots of little goals along the way then every bit is an achievement to be proud of, however far I do or don’t get in the broader picture.

For example… I’d love to do a PhD, so I’m battling my health to get my masters degree. I don’t really expect to get a PhD, but I expect to keep looking into the possibilities and seeing if there’s a format that could work for me. Never say never, right?!

Another example… I’d love to represent my country doing Tai Chi at the Paralympics, but Tai Chi isn’t a part of the Paralympics and won’t be any time in the foreseeable future. (Yep, I even emailed the International Paralympic Committee to ask! Well, if you don’t ask, you don’t get, right?! tee hee). I’m not saying I’m that good, but I do tend to aim high these days just to see what is possible. I’m still working on improving my Tai Chi as much as I can for as long as I can. I see it as something which can help me through my life into my grey-haired years (which, between you and me, I appear to be embarking upon already but they’re not too noticeable, yet, shhhhh ). One of the keys with CRPS is the balance between activity and rest, for me Tai Chi is a perfect activity challenge. (Here’s another secret… I’m even entering a big Tai Chi tournament! I figured, “why not?” It’s ‘only’ a beginners classification. I’d love to whoop some able-bodied asses with my slow-mo’ disabled styleeee, hehehe)!

I also wanted to do something to help my fellow CRPS patients, hence this blog came into existence. But with my professional(ish – my health stopped me from working after the psych’ degree) background training I wanted to do some research that would help in a more professional capacity. It’s all very well being an ‘expert patient’, but I figured a paper from a ‘researcher’ has more weight with the multi-disciplinary professionals involved, (not much more weight, but a bit, hey?). So I’ve spent my final masters module doing just that. Goodness knows if I’ll get these pain levels down enough to hit the dissertation deadline and pass, but after that I’ll have no deadline, and I will have the time to spend on writing a paper to share.

All this stuff, broken down into little chunks, little achievements, little moments of joy, (yes I’m still adding to my Jar of Joy!), moments of happiness both the big (a bronze medal at a little local interclub tournament last November. I know I didn’t write a post about it, I should have but I was feeling shy about it at the time. I think the reality has sunk in a bit more, now!) and the small (the sun shining in through the window whilst I sip a lovely cup of tea). I have soooo much happiness these days, I know it sounds weird but I can’t really explain it other than to say that my wants and appreciations in life have changed. Not that they’ve been downgraded, although it used to feel that way during the earlier stages of transformation, it’s actually more that I’ve recaptured my childlike appreciation of the things that we so easily grow to miss as busy responsible adults. Perhaps that’s why I like hanging out with the nieces so much! They’re about the same age as I am in my heart these days

Fun. Silliness. Joy. Happiness. These are the ways I live these days. Despite (and quite possibly because) of the massive relationship losses that so many of us experience. Achieving small goals is valuable for the associated personal progression (I love learning ). I know I have pain and additional neurological, autonomic- and central nervous system issues with resulting physical and neurological difficulties, but I prefer to see them as a challenge! I relish a challenge these days! I never thought of myself as competitive, I want everyone to do well and I like to encourage others to progress, to become, to *be*, if that is what they want to do. But it turns out that there is a type of competitiveness I hadn’t taken into account before, and that is my competitiveness with myself! That is, that I always want to push harder, to be the best that I can be at something, but still within realistic boundaries applied by my health. After all, pushing too hard only results in going backwards healthwise and having to cover the same ground again to get back to the standard I was at before. That’s fine, I’m in no hurry. I am not competing with anyone else. I am on my own path and I’ll take it at a pace that is most productive for me. I’m fine with that, it’s worked for me so far.

It’s always exciting looking at how far I’ve come and gleefully dream up new ludicrous ‘big’ goals to make me grin! Half the fun is inventing a new goal and fully expecting that I can only get so far but that I’ll be so proud of myself for what I manage,… and then surpassing my own expectations. That’s fantastic! I do not expect to achieve my goals, but I expect to work towards them and achieve stuff along the way! Gosh I’m a paradoxical chick, huh?!

Above is a tree of my journey that I created a while ago. I began it with my health changes as the roots and trunk – the beginning of this particular tack of my journey. Then the experience got less concentrated, more diverse. It branched out into many things. All inter-related, many overlapping in timescale, so there’s no pattern to the branches, just a lot of words, feelings, experiences and more that led me to starting this blog. Then I found a whole new chapter of my journey lay before me. I look forward to living it, I’m intrigued to see what happens next in the story!

Lotsa love and happiness from me,

x

New year, new thinking

Gong Hoi Fat Choi, my friends, xx Happy Chinese New Year, xx

For the last three years Magic Dude has taken me to see the Chinese celebrations in our local town. I adore the event and always take lots of piccies and come home feeling exhilarated and smiling. Today, though he had to work, and I am in self-inflicted flare anyway from my venture from Tai Chi into a Filipino stick fighting (Kali) seminar yesterday(!).

Tee hee, this was in slow mo so the camera must be on a reeaaally slow setting to make it look blurry!

Ahhh, being woken by pain the day afterwards that is so bad that you stifle a scream. Good morning CRPS!

But I don’t regret it (or at least I didn’t at first!) – sometimes it feels good to dare the flare and push myself, even though the aftermath is so horrific. Every day is a blanket and hot water bottle day, but today has been a rocking back and forth inside my head day and I have been grateful for my friends online helping me through it (huge hugs to all of you).

I am very good at controlling my activity levels, at ‘pacing’ what I do, it really is the greatest tool that I have to keep the pain levels from rocketing. And yet (at the risk of sounding like I should start ordering in the padded wallpaper) I’d still rather do something different once in a while and end up with a pain flare to get through than have to deal with the emotionally painful alternative of sitting at home while other fully able-bodied people do what I’m too sensible to put my body through. Just once in a while I say, “Screw sensible, I prefer living!” Or at least that was the idea! It gets to the point where the relentlessness of the high pain levels start to make me wish I hadn’t pushed myself so hard, that I’d sat down more. I even went to the effort of forewarning the teacher but then I never dropped out! My bad! As I’m always so good with my pacing of activity and being sensible it feels good to dare to buck the trend every once in a while. But now it’s just trynottoscream, trynottoscream, iwishihadtea, trynottoscream…!

I’m still smiling with my friends, though. A video chat with one of my amazing friends online (with me still in my dressing gown and with a massive spot on my face *sigh*) meant that we ended up talking about what I’d like to do, to achieve, to experience.

So I told her my little dream… that I get paid to do a PhD (har!) that I somehow manage to do despite my health and brainlessness. That if they asked me to teach a lesson or two to undergraduates I’d be scared but I’d push myself to dare (seems daft to not even try), but I’d much rather teach Tai Chi than psychology! I love Tai Chi. It’s around two years(ish) since I started learning Yang style Tai Chi. As I move into this Chinese new year of the snake I am already learning the Sun style 73 form and finding that two styles and three different routines in my head can get interestingly muddled at times! I’m always glad of new sources for laughter

I’ve spoken with my teacher many times about how much I love Tai Chi, she knows I’m a lifer! I hope to learn some Chen style as well, before learning the competition 42 form which is a combination of all 5 styles (the others being two different versions of Wu style). After that? Well, there’s weapons Tai Chi of course! The sky is the limit. I do not believe in capping our own potential. We do not know what we are capable of until we try. And until we try different things we might not know about untapped skills and natural abilities just waiting there, full of potential… potential joy, potential smiles, potential new parts of our life and being. When we discover something that we really like it can become a well loved hobby or interest that helps us to escape from the stresses and express who we are. We are each ourselves, and finding ways in which we can *be* ourselves is a beautiful thing indeed. It feeds the soul, it lifts us up, it adds quality of life that cannot be measured.

For me, it is Tai Chi which has added a different level of appreciation to my physio’ paced activity time. It is more than a set of movements, it is a way that I am me: time for myself, time away from stressful thoughts and worries, doing something that I wouldn’t have done otherwise, to learn something just for me, to experience progression instead of health deterioration. Even with bouts of regression in health the skills themselves can still improve, I can improve my technique on the bits I can do – when I hurt my back I couldn’t do the arm movements so much, but my footwork came on a treat! There is always a positive for me. Even if I felt that I could not progress any further I would always have the achievement of everything learnt so far, hurdles overcome, improvements made, I would be proud, no wait.. I am proud! I am proud of what I’ve achieved.

One moment of practice during a chilly physio’ captured by Magic Dude! It was a rare moment of balance!

Whether it’s a bit of artwork, a bit of writing, or reading, or anything, time for you is essential. And being able to *be* you is the best thing ever. To just be you.

Ill health is but a part of our lives, it’s not who we are. It restricts us, but we can get stubborn-in-a-good-way and still find things we can do during our physio’ time. And it doesn’t have to be physical things either, after all most of our physio’ time is taken up with mundane things like getting dressed or getting some food from the kitchen.

Writing can be done with a headset, reading can be done in ways that mean you don’t have to hold the book or kindle, artwork can be many things, or indeed anything (art is art, it is expression, it is whatever we want it to be). Even studying can be conducted from home through distance learning classes. Ooooh, the possibilities are exciting!

Living with a chronic condition means that we are limited, restricted, we experience flares and set backs, and if we don’t keep on top of that it can take over our inner world as we have to think ahead, and plan all the time. It’s exhausting….. all the more reason why it’s so important to create time for yourself.

We associate Western new year with making resolutions for the coming year, and we also associate resolutions with things that we feel we should do, like go to the gym more, watch what we eat, cut down on our swearing…

Chinese new year has beautiful meanings in the lion dance. It is looking ahead to a new year full of possibilities, scaring away evil spirits and bringing prosperity and luck in the year to come.

We’ve had our western new year, we’ve tried the resolution thing, we feel we’ve failed when we don’t stick to what are often huge steps we’ve tried to take. So let’s take inspiration from the Chinese new year, let’s scare away those negative thoughts and think about what we might like to try. It doesn’t have to be major, it doesn’t have to be permanent, just some things we’d like to try. Not even necessarily now – after that hospital appointment is done with, after this flare has calmed down, whatever it is it should be enjoyable, not pressured. Don’t let that wish to try something get away, just allow yourself to not feel pressured. If it’s something you really want to do you may want to start straight away anyway.

We are more than this – we are each an individual *me*. I, for example, am someone who randomly practices Tai Chi in the local DIY store whilst Magic Dude chooses some paint! Well, I have limited time that I can actually physically function and then the rest of the day is worked around regulating even higher levels of pain, so I’ve gotta grab my chances, right?

Happy new year to you, may it bring you some smiles and some opportunities to try things that it might turn out you love, xxx

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If you want to know more about my hobby.. I have written about the health benefits of Tai Chi here.

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A jar of joy!

I’ve seen a suggestion flitting about on the social networks about noting down the good things in a slightly different way than we might usually think of, and I think it’s a great idea so I decided that I would follow the suggestion myself.

The suggestion begins with you re-using an old jar by giving it a new purpose for 2013….

I have a jam jar that I attempted my first ever glass painting on years ago, so it’s really messily done, but it’s still with me so rather than it being a jar-of-random-stuff-coz-I-don’t-know-where-else-to-put-them it has been reassigned to the job of my 2013 Jar of Joys! Of course, we could use any container we like, I think it adds a little something more if the container is pretty or meaningful in some way although, on the other hand, a fresh start with something new is also very meaningful and adds to the cause, too.

My Jar of Joy at the beginning of 2013

Then….

The idea is that whenever a good thing happens in 2013 we write a note of it (little bits of different coloured or patterned paper would be really pretty) and pop the notes into the jar. At the end of 2013 we have a jar of reminders of all the good things that it’s so easy to forget or not give it the importance it deserves in our memory. For those of us living with health conditions, or any other challenging life anomaly, this could be really beneficial to our satisfaction at the end of 2013 and looking ahead to 2014. Many of us have experienced the mixed emotions at the end of one dastardly tough year and trying to feel like it was worth it and that the new year will somehow be better. It is easy to remember the hardships, especially when they’re reinforced in our memories by occurring daily, so it’s even more important to remind ourselves of the little joys that so easily get lost along the way, x

From an ill health perspective ‘good things’ would mean slightly different things than perhaps a rock band roadie or NASA scientist might imagine If we manage a physio’ session with less pain, clean the bathroom and still have enough juice left to make ourselves a congratulatory cup of tea, if a good friend comes to visit and lighten our day, if we have a meal with family, or get to visit a library or museum  or see a film or play, If we dress ourselves without as much pain as usual, or put on an item of clothing that we couldn’t put on ourselves for a long time, any of these things and more are experiences and achievements to allow ourselves a moment smiling and a warmth in our hearts, and if they make you grin then they deserve to get jotted down and added to the jar. Think about what will make you smile when you look at them again at the end of the year, and those are the ones to note down.

I’ve started mine.So far there is note in there about one of my best buds coming round on New Year’s Eve to natter, make christmas Lego and pull crackers And a note about Magic Dude taking me to the cinema on a date. (Yes, we live in the same house, but dates are great ways to treat yourselves to some couple time instead of worrying about bills or who’s going to do the dishes)! Oh yes, and one about sculpting in the snow with the nieces, too

I kept a couple of party hats that came out of christmas crackers which I’m currently using as my note paper for the jar!

I have a tendency to keep things, I’m a sentimental So last year I kept scraps of memories in the form of things like cinema tickets and birthday cards, but this Jar of Joys allows me to note down moments that warmed my heart and made me smile as well. These are the moments that lift us, and make us feel all warm on the inside. So I reckon collecting them is no bad thing, and getting to read them during the next tricky transition from 2013 to 2014 seems ideal to me. I shall keep jotting down joys and see what I end up with at the end of the year

x

Life and Death

Today’s theme for the November Challenge is one I may write about properly one day, but for now my level of symptomatic wooziness means that I can’t write for long. So today you’re getting a CRPS and Dys’ related poem, x
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Life and Death

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Older,

Wiser,

Weaker,

Stronger,

One day at a time.

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Finding strength through love,

A pathway through the minefield.

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Patient,

Writer,

Teacher,

Joker,

Rays of sunlight shine.

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Voices lost and present,

Sear and sing within my heart.

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Battle

Onwards,

Fading,

Waning,

I’m ‘me’ all the same.

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No shame in my sustaining,

Shining light throughout the fear.

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x

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Strength and weakness

Many people have said to me “You’re so strong, I just don’t know how you do it”, and then they go back to their own everyday lives and I carry on with mine.

Am I strong? Or am I just dealing with the hand that I was dealt?

When you’re living every day with symptoms that cause severe pain and severe lack of function you have to find the strength from somewhere to just keep battling through the days. The experience of living with a chronic condition is so completely and utterly relentless that it is all too easy to end up steamrollered into the ground.

So yes, I am strong, but it’s because I have to be. There’s no other way I can live with my condition. I cannot have a break from it. I cannot let up for even one day. It is a full-time and round-the-clock job trying to keep the balance between some level of function and terrifyingly severe levels of pain and autonomic distress.

You’ve probably heard the term “CRPS Angel”, well here’s my own Marvel-esque version

Do I ever get used to it?

Yep, I do actually, but only in the sense that I can’t really remember what the experience of everyday life was like before I became chronically ill. This is my reality now.

But don’t make the mistake of thinking that means that everything is okey-dokey now. It’s just as hard as it ever was, it’s just as relentless and just as upsetting. But it’s one of those things in life where it doesn’t get ‘easier’ as such, I just developed new skills and ways of coping with it all. I’m good at dealing with the health stuff that I have come to terms with. But it’s a continuous balancing and re-balancing act because, as much as I’ve developed skills to cope, I have a progressive condition.. so just as I think I can just about handle this, another new deterioration occurs and I get knocked off kilter again.

So it is not a solid strength, it is a flexible strength. It has to be. I never know what’s around the next corner, but whatever it may be, however shocking or upsetting, I have to react as calmly as I can or my nervous systems will go haywire rendering me physically incapable and cognitively incompetent. Whereas, if I deploy my range of skills the moment trouble hits I then stand a chance of reducing the negative effects to some extent. I also have to employ skills in how to claw my body back to its usual levels of physical ineptness and my now standard levels of brainlessness.

Strength and weakness seem like fairly straight-forward terms, but they can be used in different ways.

For example, the first thing that I think of when I ask myself what my weakness is…..  that I have a weakness for tea!

In more real terms I have a physical weakness because I cannot exercise like I used to (no aerobic exercise at all anymore, unless a fight-or-flight induced fast heart-rate making me come close to passing out counts?)! And my body doesn’t work the way it should in things like getting the oxygen to places it’s needed.

In emotional terms I am strong because I have to be, but if someone I had never thought would ever hurt me tells me that they think something bad of me then it’s not just the wonky fight or flight that’s the problem, it’s also the down to earth human emotional response as well. I guess that is simply a mixture of being neurologically compromised and of being human.

Distraction tools!

A big strength reducer can be when we lose people from our lives. Nearly all of the fellow patients I’ve met have problems with loved ones not understanding their condition, and when the neurological changes start kicking in before we are actually aware of what is going on.. that is one of the trickiest times for misunderstandings because they can pass over our heads like they never happened. And when we find out afterwards the shock is indescribable. We wished we’d known or realised or understood at the time, but we missed stuff. That’s all there is to it. But whole relationships can be lost over this transition period. And the loss itself can make us weaker, too. Not just the loss of colleagues, friends and even family, but also of a work life, a social life, and more besides. Our lives change so utterly that the change is hard to come to terms with. We have to fight harder to battle the grief of loss and, in the case of misunderstandings, lack of comprehension about what’s happened as well as all the rest of the usual everyday chronic illness stuff. At those times we tend to go under for a while. When I went under I resorted to discovering Magic Dude’s games console! Getting lost in a game was the only way I could distract my mind from the emotional distress and pain because the game continuously demanded my attention. Strength and weakness play their parts, and not all ‘weakness’ is bad or unusual. It’s all change and we work our way through it to come out of the other side.

With greater knowledge of our condition comes a type of strength, because it brings us more control in the sense that we don’t have to float about floundering as much any more. We can explain to our loved ones what’s happening and why we don’t always understand things, why our condition affects different parts of the body, why it’s neurologically based, and so on. We can source and print off research papers to help our doctors understand what we have learnt about our condition, (after all, we are learning about an area which is more specialist than they are used to). We can be advocates for our fellow patients, sharing our knowledge, sharing the sources of information, and understanding what we each are going through which reduces the isolation of the fight. And in reducing the sense of isolation, we feel stronger still.

But we are only human, we don’t have endless wells of strength to draw upon any more than anyone else has, but somehow we have to find a way to keep going.

So I use humour and general silliness! I laugh at the ridiculousness of the developments, even as I feel like crying. Sometimes I’ll be crying and yet also still laugh at the ridiculousness of it all. I take the mickey out of myself, I laugh at stuff on TV, at daft mis-marketing on adverts, at things that Magic Dude comes out with, and at him when he has a rant (he rarely does a serious rant, comedy rants are far more fun!), I come out with stupid comments to make him laugh too, and I’ve developed a bit of a skill in comedy rants myself. Then of course there’s the laughing when the tremors occasionally get so bad I miss my mouth, or scatter my coffee liberally across the floor. And when I come out with wrong words, mixed-up words and non-existent words. I laugh when I can easily find long and complicated words but can’t find a word for something really ordinary. I laughed at Magic Dude’s expression when he saw how orange the coat was that I wore for my CRPS Awareness physio’! (tee hee) And if I didn’t laugh I’d struggle a lot more. It’s the laughter that keeps me in touch with who I am without this disease, and how I was before it. It’s part of what makes me ‘me’, so I grab every opportunity I get. Laughter keeps me strong, it helps me to keep my perspective and to distance myself from troublesome things enough to keep on going.

I’ve said it before and I’ll say it again… tea and silliness rocks!

x

CRPS Awareness Month

Yes, I’m back! (Kinda)! After having to come off my meds in preparation for the two days of hospital tests in London, (blog posts on this to follow when my brain returns to me ), and what with all the travelling, the tests, more travelling, pain flare as a result, worse symptoms whilst off the meds, and now the side effects whilst going back on the meds…. well… it’s been interesting!

Thank-you for your posts and comments in the meantime, I have been reading them and replying whenever I have been able to do so. You are amazing, xx

The worsening Dys’ symptoms, (especially the near-fainting and nausea), meant that I was unable to keep up with my physio’ sessions which I would usually use to keep my pain at lower levels, (as much as is possible, anyway). And of course the lack of physio’ had the knock-on effect of an even greater pain flare. But, as you know, I am a stubborn old boot!

So, after five days of no proper physio’ I decided that I’d ask Magic Dude to drive me somewhere in the hope that we could find some gorgeous Autumn trees, (or Fall trees to those of you not living in quaint Britain ). With the added twist of me deciding that I would wear bright orange! This is because November is RSD / CRPS Awareness Month in the USA, and it tends to get shared around the world via our informal online network of patients. One wonderfully positive friend even convinced all of her colleagues to wear orange at her workplace, and she was bowled over by how enthusiastic and supportive they all were. Fabulous stuff.

So as some of us were nattering online about getting dressed up in orange and taking pictures… off I went, in my orange coat and an orangey dress, in a search of an orangey, (or at least Autumnal looking) tree!

I had my hood up some of the time as the sun was glorious and making me squint a lot! Magic Dude took this pic’, but the way the hood hangs it kinda looks like I’m a distant cousin (non-evil, of course) of the Dementors! (Harry Potter ref’, sorry )

It really does make a difference having an awareness month. It’s hard for friends to hear about our conditions all year round. It’s exhausting for us living with the condition, but it’s also wearing for our friends in a different way because they feel so helpless when hearing how we struggle because there’s not really much they can do to assist. (Unless they are near enough to come round to make us a cuppa and have a lovely chat of course)!

This time last year I was not yet blogging, but I posted loads of information on my personal Facebook page during November. Quick and easy stuff for the most part: informative profile pic’s (like the McGill Pain Scale, or a diagram of how CRPS ‘works’, and so on), with daily snippets of info’ about my life with CRPS and the odd weblink to more information. Some of my friends were wonderfully supportive and even changed their own profile pic’s to spread the word. A couple of friends even went away and read up on the condition themselves.

The best thing of all is that many of my friends now know that taking extra vitamin C after operations and injuries can reduce their chances of getting CRPS.

And the bestest thing of all is finding that one of my long term friends, (who I haven’t physically seen for years, but you know how that doesn’t matter when it’s a ‘proper’ friendship ), has stocked up on vitamin C for his recovery period after an operation. Wow! To think that this information can help others avoid the complex condition I have ended up with is so truly fabulous.

(By the way, the operation consent form he was asked to sign did note ‘RSD’ (old name for CRPS) as a risk factor but, as he rightly pointed out, it did not give any information on a) what that is or b) how to minimise the potential risks. Fingers crossed the strong research will eventually be reflected in information given to patients for their own well-being, but meanwhile… keep spreading the word, xx)

And my search for an Autumn tree did result in finding one that I could actually stand up underneath…..

What a glorious day it was, I must make sure that I have a Blue physio’ walk sometime before Dysautonomia Awareness month in October next year!

x

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The necessary addition of a ‘Mary Poppins’ or ‘TARDIS’ bag

Every parent knows that the moment you have kids the cute little handbags are out, and the big bags of spare clothes and nappies are in! A few years ago I discovered that health issues can initiate a similar bag-and-supplies transition!

Mary Poppins had a bag that seemed to have everything you could possibly need within it, and Dr Who is renowned for their bigger-on-the-inside science which they liberally apply to their mode of transport and pockets!

A girl still needs a bag change from time to time, though, so I have just shelved my black shoulder bag (covered in badges) in favour of a purple satchelly type bag that I found in a second hand store. I like a good bargain, and I agree with Elder Niece that purple is pretty cool, too!

In my bag at the moment there are the following…

Painkillers

Anti-inflammatories (though I take them as little as possible as I was advised against long-term use)

IBS pills

A plastic jar of crystallised ginger (for the nausea)

A pair of knee supports (to be avoided unless I’m desperate as wearing them regularly would defeat the whole point of my physio’s, but if I can’t get back to the car then at least they are on hand)

A fold up walking stick (with a pretty Florentine scrolling pattern on it)

Dextrose tablets (which don’t really get used any more but are there out of habit. I was found to have a tendency to blood-sugar lows about seven years ago, but for the last few years the dextrose hasn’t helped. I eventually found out that the similar experience of brainless-spacey-sicky-fainty was actually a now much more common me-event of neurologically mediated near-fainting)

So, before I go out for any length of time I also fill a flask with weak lemon squash and add that to the Mary Poppins / TARDISlike bag as well! Recently I have started getting neurological teeth pain, and warm drinks don’t set it off as badly, so I opt for warmish fluid intakes now. If I’m attempting a walk somewhere pretty with Magic Dude on his day off, I might pretend that I’m some sort of ‘normal’ (hehe) and fill a travel mug with a nice cup of tea. Like I’m adventuring into the Great Outdoors on my day off from a busy working life in the City, or something, har! I wish!

Oh yes, and my asthma inhaler which I practically never use since my dysautonomia decided that hyperventilation was a great new default practice. My lungs have plenty of oxygen in them these days! Shame it has trouble getting to the rest of my body, but that’s another story!

Of course the car is the place to store additional assistance… wheelchair or crutches if they might be required, migraine patches and sprays, a warm blanket to keep the legs pain down, but the everyday items are in my bag.

I don’t skip around singing about how a spoonful of sugar helps my truckload of meds and supplements go down, so I don’t think my bag happens to be a Mary Poppins bag, although I know people who have them, and one person who had a Mary Poppins drawer at work.

I’m a bit of a geek, and a bit of a sci-fi girl, so a TARDIS bag suits me down to the ground. Not sure where the purple fits in, perhaps that’s part of my ‘thing’, all the regenerations of Dr Who and each of his companions have a thing, something peculiar to to them, like the Dr Who’s who gleefully proffered jelly babies, carried an umbrella or favoured a bunch of celery as a jacket adornment. Their approach seems to be this… if I state the cool-value with enough certainty, perhaps it’ll become true…? And if it doesn’t, I’m quite happy being considered eccentric! So…

“I carry a purple medical TARDIS bag now, big medical bags are cool.”

Did it work?

x

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The weirdest thing about my health…

It’s a bit paradoxical really, certainly frustrating and even wearing, but the weirdest thing about my health is also the one of the most fundamental aspects. It is the most obvious part to me, which I have to work around every day but it is very the part that most other people cannot get their heads around.

Even the disability benefit forms don’t allow for it, even though it affects so many disabled people who are chronically sick. The new Atos benefit assessments are just tickboxes for ‘yes’ or ‘no’, and as such blatantly ignore most of the chronically ill population as they leave nowhere in the assessment for the crucial information to be logged.

Yes, the weirdest thing about my condition is the variability.

I have spent many years doing physio’ every day to try to retrain my ANS from flipping out at activity levels. I have built up what I can do, but am still restricted beyond that. However, just because I have two periods of physio’ per day where I get my body to move and use the time to get things done, it does not mean that I can necessarily do that every day. And I certainly can’t do it outside of the physio’ time as I am forced to spends hours recovering.

When I manage to be up and about, I don’t necessarily know just which activities I am capable of that day. If I want to do something more I have to plan it waaaay in advance with lots of resting for days, or even weeks beforehand. And days/weeks of minimal activity set aside afterwards for recovery, too.

Some days, just getting washed, dressed, fed and washing a few dishes is all I can do. I get extra pleased on less near-fainty days when I can cope with the up and down motions of something like hanging the washing out. The simple things please me these days! And after a physio’ my body always has to rest for several hours.

The trouble is that resting isn’t as straight forward as it sounds, either.

Resting involves having to have my legs up to help them to recover from the activity and to avoid the CRPS pain flaring too much. Pain is what I live with all the time of course, and yet you won’t see it on my face when I’m physio’-ing my way through tasks. I’m really good at hiding pain. I have to be, people get uncomfortable if they can see my pain levels, so I am as cheery as I know how. I had yeeeaaars of practice at it! Besides, it’s blummin’ good to be able to get up and do something useful for a change! But the pain is always there, and towards the end of a physio’ it starts to get meaner, then after my physio’ it explores even higher pain levels.

I also have to rest somewhere really comfortable or the CRPS pain in my hip will go through the roof.

And I always have to have warm clothes on and a blanket to keep my leg muscles from tensing or the pain levels will soar even more.

I nearly always have a hot water bottle (covered, of course) for the same reasons.

If I cannot put my legs up, if I am not comfortable, or cannot get warm, then the pain levels will just continue to rise.

At home I can fulfill these requirements and function a little better. But what do I do whilst I am stuck on the sofa trying to get the pain levels down?

This is where I tried to get my body used to sitting. But even with a medical legrest, individually tailored ergonomic and memory foam covered chair, ergonomic moveable arm-rests, a pillow over the footrest, a pillow on the chair, a hot water bottle and a blanket…. I *still* can’t sit here for longer than 30 mins on a good day, and 0 mins on other days.

If the pain isn’t too bad I could read for a while, but pain combined with the neurological issues means that I can’t always understand words properly so I often cannot read. Or if I do read, it tends to be familiar and easy reading. Writing has similar problems. But I try to do a bit of both at different times to keep my brain ticking over without draining it of it’s crucial neurotransmitter resources. Which get used up really quickly, by the way… I lose my brain because when we are chronically sick we make so many small but tough decisions throughout the day about things we would have once done/decided/considered without even noticing, (can I get to the toilet or will the pain flare if I try to get up yet? Is it better to get up to get some fluids and suffer worsening near-faint problems, or will it calm down if I just lie down for a while longer? Oh no, the postman’s at the door, can I get there in time and how many hours will answering the door set me back with my pain and recovery? And so on). So our decision-making and comprehension chemicals get used up on the mundane, leaving our brains in a pretty useless state fairly quickly.

As I suffer from various autonomic issues as well, (part of the CRPS), I don’t ‘just’ have the complications of pain variability. Having to pace how much and how often I use my brain sounds hilariously ridiculous to me, and yet I have to swallow my pride and put up with the reality. Think a bit, rest brain for several hours. Same as with how I can use my legs. And now the CRPS has spread through my body I have trouble using my arms too much as well. *sigh*

The near-fainting is another spanner in the works. When it’s bad, it’s bad. That’s just the way it is. I drink fluids (to top up my blood volume), pace myself (to keep things on a more even keel), keep as calm as possible (to reduce the effect of the ‘fight or flight’ kicking in as that raises my heart rate and drops my blood pressure), I have a little more sodium than the average person (to keep more fluid in my veins), but as my near-fainting is not purely vascular the fluids and salt can only do so much, and it’s tricky trying to keep faulty nervous systems under control when they are not processes we usually have much control over anyway. Keeping calm, moving slowly, lying down etc are the kind of things I can do. But still, when it’s bad, it’s bad. And when it’s bad, my day stops where it is and the horizontal becomes my new position of the day.

Only I can’t stay in one position for long, of course, coz it’ll set off the pain levels. Frustrating, much?!

Everything is related to everything else. Our various body processes are inter-related. They interact with, and affect, each other. A holistic view is the only way to go with a condition like mine.

But ask me if I can touch my toes, the answer is not ‘yes’ or ‘no’, it is ‘sometimes’. This is because I am very flexible (hypermobility issues are common with my patient group) but although I can touch my toes, it might render me on the verge of passing out and throwing up for the rest of the day. This can sometimes happen even if I touch my toes whilst sitting on the floor with my legs out, too.

Ask me if I can walk (or mobilise as they say in the official assessments) for however many meters, my answer is ‘sometimes’, because during a physio’ period I may well do so. On a good day I may look as if I’m able-bodied during my physio’ time only, and if I achieve that I am chuffed because that is a good physio’, it’s exactly what I should be trying to do, but in between physio’s I am rendered immobile and in high pain levels and can’t get up for long periods of time owing to a) existing pain levels, and b) the fact that if I get up too soon the pain levels will rocket and take much longer to calm down again. The way my condition works means that I have to stay put.

Despite having to rest for so long, ask me if I can sit for any length of time and the answer is strangely ‘no’… unless it is a soft comfy sofa or bed, with no draughts, a blanket, a regularly topped up hot water bottle, and a few options for position changes. Anything else and my pain will start an upward rise in flare levels and I will end up incomprehensible with pain.

Ask me if I can understand words, whether written or spoken, and my answer is ‘kinda’. Despite my neurological issues I still have the same level of intelligence, I am even trying to complete the final module in my masters that I’ve waited years to do, and it got to a ‘now or never’ stage But try studying when your brain is never clear any more, when if you type as little as a blog post for a few days in a row your brain just stops comprehending words. Ask me about something really familiar but very complex, like my health condition, and I can usually handle it. It makes me seem oh-so capable. Familiar information that I work with all the time is much much easier to comprehend, although when my brain stops working I can’t do that either. But ask me something I’m not expecting, that my brain has to think about and consider before responding, and you might witness a strained thinking expression on my face, sometimes I will look confused because I don’t always understand first time, and sometimes I will be fighting back the distress at realising that I just don’t understand things like I used to. I don’t function like I used to.

Variability. Built in to every aspect of my very complex conditions. And yet the one thing that most people cannot comprehend….

How can I be walking with Magic Dude looking ‘normal’ and yet then have to rest for hours afterwards because the pain will flare severely otherwise? How can I be studying at post-graduate level when my brain is so faulty these days? Or discuss the complexities of a specialist condition when I struggle to understand what the dentist’s receptionist is saying to me? And how can I be so calm and strong through living with these conditions when I come close to passing out if I realise I’ve doubled booked a friend visiting for a cup of tea with a hospital appointment?

It all makes perfect sense to those of us who live with such conditions because we have had to learn about the mechanisms that cause the problems to try to function the best we can around them. That is why I physio’ each day, because activity is as important as rest in working around my conditions which are just not controllable.

But to others it sounds paradoxical. It does not seem to make sense. Even medical practitioners do not always fully understand it. But then again, let’s face it, even the tertiary level specialists in pain and dysautonomia do not claim to fully understand these conditions which are still coming to light through ongoing research.

So you ask me if you can pop round for tea, and I will ask you exactly which day and what time, and then I will say yes or no. What you won’t hear me say is aaaaall of the working out I’ve got to do in my head about how I can factor that into my day without making the pain flare, or the near-fainting worse, and so on. There are a zillion and one factors to every moment of every day that relates to how I can function during every other moment of that same day, and the next few days, the next few weeks, even.

Everything has to be planned; and yet nothing can be planned…. because you don’t know what state your body will be in each day. The best you can do is to constantly assess where your body is ‘at’ throughout the day and try to respond. Flexibility is the key to survival, and yet so is regimented body physio’s and brain activity down-time. Paradoxical to the last.

Variability is the one thing that others often don’t understand, and it is a massively important aspect left out of disability assessments. Patients with variable diseases often fall through the health and benefits safety nets, because the concept of ‘can you do this.. yes or no?’ Just doesn’t factor in our lives. “Sometimes” is all we can say without going into a long and complicated explanation!

An insomniac moment of poetry

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Sat downstairs awake once more,
Listening to the upstairs snore,
Restful in my sleeplessness,
Knowing he, at least, will wake refreshed, xx

Tomorrow is another day,
And through it I will make my way,
With outings of unusual type,
Then home to see my friend on Skype, xx

All is good despite the stealth,
Of worsening and scary health,
I live my life with joys I find,
You’re in my heart and in my mind, xx

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Those I love keep me going,
So you see, through this poem,..
My heart leads me through each day,
In the joy of love that lights my way, xx

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Good ole sofa and laptop combination!

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After writing this I wandered upstairs to bed to give the ‘sleep’ thing a go. Whilst I was lying there trying to convince my body to go into uber-relax mode I remembered that the lovely Carly had done the same thing, as she posted her own poem on here one night when she also could not sleep. (Carly’s poem is in the comments section on this link for you to read and it is beautifully positive).

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I write the occasional poem, but I don’t do it seriously, just for a bit of fun, or as an outlet. It’s a great way to get our emotions out. Sometimes we manage to say in a poem what we’d struggle to say otherwise. And the way a poem has an ending gives us a current summation point that we just don’t often get to experience in the middle of our ongoing lives. It breaks up the relentlessness into more manageable and simplified chunks. Sometimes it may even be easier to give our loved ones an insight into the personal experience of our conditions through poetry, it tends to cut to the chase and trim away all the extras.

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Why not try it yourself? Whether you are living with a condition or not, whether you’ve met me in the 3D world or online, whether you want to write a poem about deep and meaningful stuff or about the simple joys of tea and sunshine. The style, length etc can be whatever feels right, why not give it a whirl?

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And if you post your poems in the comments sections below I’ll collect them together and publish them in a post on this blog, accredited to the names you choose to give. I love the idea of a readers’ poetry post

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Love to you all from me, x

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Supportive friends and my thematic writing style

Writing is, for me, a fairly recent discovery. It began a few years ago when I got to the stage of having seen so many doctors who did not know about my condition that it was either… keep waiting for someone else to do something about this, or… do something about it myself.

Speaking to my friends about this, the general consensus was that I should write a book. They gave me many (in)credible reasons about why they believed that I was so suited to accomplish this feat, and the phrase “you are an inspiration” kept cropping up. I struggled enormously to comprehend their point of view, especially the idea of being an inspiration just by being stubborn, determined me!

The overriding problem was my lack of confidence and belief in myself. None of us should believe ourselves so capable and knowledgeable that we are no longer open to new, or corrected, knowledge. I believe it’s good to be humble. In this manner we retain our open minds and allow ourselves to keep growing and learning. Of course the part I’ve always been terrible at is the part where I should at least have still acknowledged my own skills!

No matter how hard I tried, I could not see myself the way my friends said they did. I am an expert patient, but I felt I was ‘only’ an expert patient. And I’m not the only one in existence. There are other patients out there with medical training, which gives them a much better foundation on which to build knowledge of our condition. The truth is, of course, that we each have much to offer and different foundations to build on. Individually, many of us have the knowledge, skills and motivation to write a book that could be helpful to other patients. But the biggest impact is when we share and pool our knowledge and skills, and thanks to the internet we have a fantastic communication resource at our fingertips.

So I worked on the humble-ocity (!) rating, privately wrote about my ideas, and things have been a-changing.

The internet gives us connections worldwide, and the information made available on it is accessible at any time of day or night from our own homes. If I wrote a book my fellow patients would need to hear about it, decide if it could be useful to them and then spend money to gain access. Whereas this blog is available to anyone who has access to the internet at any time and at no extra cost.

Writing a blog also seemed less scary as I certainly did not see myself as a writer. I began by drawing together the “What is CRPS?” page because gathering information into one place was my initial main goal. That page reads rather differently to most of the rest of this weblog because it is information based, and I was still finding my way when I wrote the initial bulk of it. I took to chatting a bit more in blog posts but it took a while, and some encouragement from others, before I found my ‘voice’: the way in which I speak through my writing. It turns out, all I had to do was tap right into the core of me and just be myself. Who knew?!

So I have a huge list of themes I’d like to talk about and silliness I would like to share, and they are scribbled in a notebook (a gift from Magic Dude for that very purpose) which I keep next to the bed in case of random inspiration! But when it comes to choosing what to write about in the moment I will usually go with how I feel, as I’ve found that’s the best way to put my heart into what I’m saying. I’ll look at my notes and one topic may jump out at me. At other times I might have a thought or experience that I feel like sharing, or perhaps a silly picture. One of my most recent posts was born of the incredibly poor media representation of people on disability benefits in the UK, (which you can read here). And rather than divert from my other writing in this blog, it actually reveals more about me as a person.

I never have a plan for what I’m going to write. I know essentially what I want to ‘say’ in the sense that I know how I feel about the topic, but I allow what I write to come together as I go along.

Sometimes this results in a bit of a hodgepodge of ideas, but often it just comes together in the natural flow. With some of my posts I have found that the process of writing is actually a journey of thought and emotion which naturally leads to a really honest core statement or point of view at the end of the piece. When this happens it is so instinctive that it feels like the natural way to end because I didn’t plan it. The words are raw, genuine and from the heart. And as they flow from me they feel right and lift my spirits. I used to be an artist, and in those moments where the words just flow from me I feel a similar joy in writing as I used to feel when painting or working with clay. It’s a ‘high’ of self-expression and openness, and in that moment I dare to expose a little more of who I am to the world.

(From-the-heart post examples include, This Too Shall Pass, Why I also live in cyberspace, and Experiencing cognitive change).

So I have no plans for my posts other than a general theme or topic. I write from my heart, how well this translates depends on how well I am at the time.

As for a title, I never start with one. The writing comes first, the meaning takes form, and the structure occurs with the logical order (depending on how logical my brain is at the time!). A title gets added at the end. I say “a title” rather than “the title” because as far as I’m concerned there are always many possible titles, so I just grab one! Perhaps I need to work at this? Hehe

I still don’t feel like a writer. Hang on… I think that has just shifted… I do see myself as a writer (of sorts) (sometimes)! A mishmash view resulting from ‘writing’ compromised by the effects of the ‘Auto Gnome’. But I am always just me. And when a piece comes together I can be pleased just as I would be if a painting turned out okay. We always see the flaws in our own work, but we can still be pleased when something turns out better than we expected. And there is joy in the writing, joy in the sharing of thoughts, feelings and valuable information, and a joy-satisfaction in the pressing of the “publish” button as I realize that I have shared another part of me and that it’s not scary to do so anymore.

Writing is now a part of my life, and I intend for it to remain that way

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