Taking ownership

Today’s WEGO Health Challenge is: “Write about a time your health condition forced you to grow up and take the training wheels off (so to speak).”

If I had been asked this a few years ago I most likely would have cited the time I realised that my physiotherapist had got things wrong and I decided to keep doing the physio’ exercises regardless of what she said. But now, only one thing stands out as a complete life-changer, and that was losing my family.

Pain of confusing loss, broken heart

I’m not going to talk about the process of loss, or the extreme grief and confusion. Or about the neurological issues that screwed up my processing, my comprehension, my word recall and more. That’s not the core issue for this post. The real crux of the matter in today’s writing challenge is that I was suddenly adrift; more alone and lost than I’d experienced before, and it brought home some harsh truths.

1) I had to accept that there was much I did not know about my own condition. And that the lack of knowledge contributed to the loss as none of us recognised the neuro’ issues. It would have been so obvious many months earlier if only we’d known it was part of my condition in the first place. 

2) I realised that I cannot assume anyone will stick around, even those who I thought would always be there. So I am even more super grateful for those who do.

So firstly I had to stop relying on doctors’ poor knowledge and stop assuming that those close to me would roll with the odd changes along the way. I had to get educated and I had to do it properly because I needed to take ownership of my health issues. I am at the centre of the web of my own life, I cannot expect others to just deal with stuff because I don’t notice it happening. I need to be aware, and in doing so I can self-advocate in my own healthcare, too.

Researching on the laptop

After that life-shattering event my world now feels pretty unrecognisable from what it was. For the first year I was incomprehensible and struggling to function at all. Distraction techniques were key that yearNow I know that the shock, grief, lack of understanding of what had happened, had all combined to make sure my ‘fight or flight’ didn’t shut off at all. The one event that escalated my existing autonomic issues to extreme levels and helped to create new ones… was also the one event that forced me to ground myself and take control of my own life.

The second year after the loss I was still experiencing severe autonomic issues but the whys and wherefore’s about the health issues were beginning to fall into place. I was mortified that so many fellow patients out there were just like me – with rare contact with doctors who understand (or who are even aware of) the multi-systemic issues, and no reliable way to find relevant, up-to-date and correct information themselves. (I have found the internet information on CRPS to largely be very hit and miss and rarely encompassing much more than the basic pain aspects. Morahan-Martin’s research has found this to be the case with health issues generally).

I wanted to help share the information I’d found, but it needed to be freely accessible and searchable. I decided to set up a website, and the best way for a website newbie like me seemed to be to use a reliable blog host. And so this weblog was born of my life-change. I had found a path along which I could help others and make a useful difference.

I had acquired knowledge which helped me to a) better understand my own condition and piece things together, b) to present things more coherently to my doctor as well as teach them more about my condition and how they need to think along different lines for patients with conditions like this; and c) which I could share with fellow patients all over the world.

Openness about reliability is very important to me, so I put dates at the top of the separate info’ pages so that readers could see when it was written and when it was last updated. Many websites do not do this, which is how people still think things like the ‘stages’ of CRPS are still being used when they were discarded so many years ago.

Poor quality and outdated information is rife in our patient group because it’s such a multi-disciplined specialist area that our general doctors just don’t get the new updates. Not all of us can read through research papers to filter the key information to add to the bigger picture, so I figured that’s where I can use my research skills.

And it’s rolled on from there. I’ve met other ‘expert patients’ who also have multiple co-morbidities and multi-systemic issues. We are part of an international informal network of CRPS information sharing. We admin’ in support groups and share information with others, some of us blog about our health conditions.

For my masters degree research I focused on what I could do to help fellow patients within the constraints of my academic field. I was overwhelmed by the number of wonderful patients who participated in the study and I’m now writing a research paper which I would like to be available to all via an Open Access research journal.

Dissertation parcelling up

Three copies of my research dissertation ready to be posted in March 2013

All of this gave me value and self-worth, gave me purpose and confidence, which rolled into other areas in my life as well. Before I knew it my physio’ Tai Chi classes led to performing in public at a Chinese New Year celebration in a local town, then I found myself winning medals at two national competitions and it’s exciting thinking of the potential for the future.The advocacy work and my involvement with other patients online has resulted in my meeting the most wonderful fellow patients who shine so brightly. I am privileged to have met them and honoured to call them my friends. I think about taking blog pic’s when I’m out. I write blog posts to share info’, to share experiences, and sometimes for pure silliness and a bit of a chuckle (coz that’s important too, of course)!

It’s now just over three years since the life-changing loss. I still think about it every day, I still wonder what happened, and it still hurts so much, but even though the pain doesn’t go away I am getting better at dealing with it. I have found new paths because the family context of my identity is no longer there, I needed to create a new context – I have been forced to focus on me, which was initially totally alien to me and felt all wrong. But I’ve increased my awareness, knowledge and I push myself all the time for more (within sensible constraints to keep my health ticking over, of course). My literature review is getting bigger, and it looks like it’s going to become a separate co-written paper with one of my peers who is medically trained so that we can both bring our skills to bear. Again,.. Open Access for availability to all would be wonderful. Oh and in 2014 I’ll be moved up to the intermediate level at the nationals so that’s ongoing to. So many plates spinning all at once! 😉

I always thought of myself in terms of being a daughter and a sister in my family. Who I was then was intrinsically linked with who I was related to, our family morals, likes and experiences. We’d always been there for each other and had come through so much together over the years. Now I have to see myself as me. Just me. I think I’m finally getting the hang of it!

I think we can safely say that the training wheels are off and I’m metaphorically thundering along a bumpy road with boundless enthusiasm. How about adding an international charity and associated information website into the mix? Oh yes, it’s coming! I’m designing tee-shirts for the shop when I am able (I’ll post a link once there’s items in there to look at, x), and it’s wonderful to know that all of the proceeds will be able to go towards making a difference. Everything takes longer because I am chronically ill, as are my counterparts involved in the same adventure, but we do what we can when we can and eventually we get there. Time has to be flexible, deadlines aren’t always viable, but with direction and determination I’ll get there!

x

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Acrostic kinda-poetry

Carefree Realists Purposefully Serene    –    yup, full of contradictions, just like CRPS!

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Elusively complex.

Like a jigsaw puzzle with the

Little corner pieces missing.

Every day is

Apt to present a

New confusion, a new

Dilemma

To test our mettle.

Holy macaroni, Batman!

Ever tried explaining

An alternate

Understanding

To

Others who are more ‘qualified’ than you?

Gah!

Not an easy journey.

Over the years, my

Me returns.

Empowered.

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Frank Herbert - We are torn and frayed but love remains

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x

Patient contact and self-advocacy on Social Networks

When it comes to social networks, Facebook stands out for me for two reasons:

Firstly, I am chronically ill and don’t get out much. I don’t get to see my friends unless they come to me, I don’t have colleagues to say ‘hi’ to each day, I don’t even have a pet to hang out with. I do, of course, have a Magic Dude! (that’s my boyfriend, for those of you who don’t already know 😉 ). His presence gives a whole new dimension to my life, for which I am most appreciative (a massive understatement, of course)! I also have a brilliant and supportive Local Friend, who pops round for tea and a natter every now and again. (We really must drag him out somewhere for his belated birthday celebrations)! But on the whole I just don’t get to see most of the people who I care about so much. And unless I’ve got an appointment with a medical practitioner who I haven’t met before, I tend not to get to meet new people either. So Facebook as a ‘social’ network is all the more meaningfully named for someone like me who just doesn’t get to socialise in the ‘real’ world any more. Facebook is my lifeline and my laptop is my window on the world.

Secondly, Facebook has a more direct effect on my condition, knowledge and treatment….

My condition is so complex and multidisciplinary that many medical practitioners do not know anything about it. Those who do know of it, tend to know it from the angle of their own discipline and thus do not have the broader multi-systemic picture. I therefore have had to become my own expert. I have had to acquire multidisciplinary information on my condition to be able to share it with practitioners to enable a clearer overall picture, better understanding of what is going on in my body and a better platform of knowledge from which to discuss symptoms and possible routes of assessment and/or treatment.

This would be a darn sight easier if I wasn’t a patient alone, searching the internet, only to find that information on CRPS is mostly limited to the view that it is a chronic pain condition to be treated as other chronic pain conditions. When we are new patients with no doctor to ask questions of, many of us turn to the internet, (a paper is being written on this, I’ll let you know when it becomes available). The trouble with this approach is that health information on the Internet varies in quality, (Morahan-Martin, 2004). As research moves forward the understanding of this complex condition changes and grows. There are old views of CRPS which are now obsolete, but they can still be found on the Internet as if they are current – there is nothing to tell us otherwise. A good example of this is the renowned ‘stages’ of RSD / CRPS which were discarded back in 2004 (see this page for more info) but can still be found all over the internet as if they are still thought to be relevant. No wonder so many of us learned to distrust information on our condition on the internet and instead turned to research journals to be sure that what we find is actually current.

This is where Facebook comes into its own for us patients. So many of us are already on the social network that it is very easy for us to run a quick search for one of many CRPS support groups on there. Anecdotal evidence suggests that CRPS support websites outside of the social network have become far less used as Facebook use has become more prolific. Nowadays this is where many of us patients finally get to meet each other. Even if there were more of us within visiting distance we would still find it easier to meet online as there are many days where even getting to the bathroom is outside our visiting distance! So modern social technology has brought us together.

On Facebook we can meet. We can feel reassured we are not alone, experience empathy from others about our condition experiences, we can share information, including research papers to show our doctors, and much more. Through discussing our thoughts, ideas and understandings of our condition online with fellow patients, who also have gathered a large amount of knowledge on the subject, we can refine our understanding, our ways of working, and find oodles of encouragement to keep on going. Whether it’s to get through physio sessions, benefits assessments, relationship hiccups stemming from condition complexities, or just simply to get through the day, the key is that we are not alone, that there are others with knowledge and experience who we can ask questions or bounce ideas off. There are fellow patients who ‘get it’ and they are just a few clicks of a button away. It’s a resource that I could never put a value on, it is truly priceless.

The added bonus is that I have met some truly wonderful people online. I have made friends – really good friends. We may be separated by time zones, but if you look at it from another point of view.. we are not restricted by time zones – we can meet so many people from all around the globe, so statistically speaking it is perhaps not that surprising that contact with so many people reveals some souls who fit beautifully with our own and who become truly dear to us in ways we never would have expected. Facebook has expanded my friendship group, who knew? 😀

I’m not on Twitter, maybe one day I’ll get round to it. I don’t have a mobile phone that connects to the internet. I do now have a Pinterest account, but the function of a picture sharing site is different to Facebook. Through the Book of Faces I have found long-lost friends, I have more regular contact with friends who I had not lost but who are geographically far away (which is anyone further away from me than my bathroom 😉  ), I have gained and clarified knowledge about my condition, shared information with fellow patients, I even have my own blog page on Facebook. So from a patient perspective there is no question for me which is my favourite social network, because only one has enabled me to come together with fellow patients with such an astoundingly positive way.

Much as I hate to love a big corporation on sheer principle, this particular one has truly changed my life, x

Fbk page

x

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P.S. If you are on Facebook… there is a superb research page specifically relating to CRPS called “RSD/CRPS Research and Developements” (recently a finalist in WEGO’s Health Activist Awards). The page is run by knowledgeable admin’s who are a mixture of expert patients, experts in the field and a fab combination of expert patient with medical training. Research is posted regularly, and it’s a great place to ask questions of a more medically focused nature. (If you want to come back and find it later, it is also listed on my ‘Useful Links‘ page).

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The reference mentioned in the text was:
Morahan-Martin, J.M. (2004) in ‘How internet users find, evaluate, and use online health information: A cross-cultural review’, CyberPsychology & Behaviour, Vol. 7, Issue 5, 497-510

If CRPS was an animal….. (tee hee)

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

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

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

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

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

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

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

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

CRPS critter

Dear older me…

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

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

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

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

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

Bertram the Hungry Bear!

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

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

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

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

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

x

If I could do anything as a Health Activist…

That’s an easy one to answer, but a tough one to precipitate.

Awareness. Knowledge. Informed decision-making from informed discussion with our medical practitioners.

The problem…

..how to increase awareness of our complex condition, (including family/friends/employers and, crucially, medical practitioners).

Time is of the essence with any new development involving CRPS and Dysautonomia. But time slips by as we work to source information and share it with our doctors.

If I could do anything as a Health Activist it would be to provide a source of gathered knowledge and research data to back it up, that’s why I created and continue to update my What is CRPS? and What is Dysautonomia? pages (and there’s even research back-up on my Health Benefits of Tai Chi page). 🙂

Some of the data which we want to share does not exist yet. The demographics we talk about a lot amongst ourselves (late diagnoses, lack of support from our doctors and so on) is not backed up with studies, so it is dismissed as anecdotal. We need scientific evidence to back it up.

So… gathered knowledge – I’ve started that here on this weblog, I’ve got more info and research references to the ‘What is..’ page as soon as I can. Plus there are several of us CRPS patients discussing a potential website. So I’m always working on this aspect.

And…. fill in the holes regarding some of the demographic data – I’ve just completed a post-grad’ piece of research which covers some aspects of this, (an online paper still to write when my brain hangs around long enough at a time to do so), and wouldn’t it be rather cool if I could do more? Any universities want a part-time (preferably mostly distance flexitime) disabled health psychology PhD student that they’re willing to fund? (Thank-you Open University for the chance to apply for a couple of available funded slots, but I don’t know that my health could take a house-move to Milton Keynes just at the moment so I’m having to look for more local options and then weigh things up, x)

As you know, I tend to set my heights crazily high and then just see how far I can get. Who knows what the future may hold? Maybe not masked crusading, but being helpful would be good!

Pretend Superhero

A bit of silliness always keeps me going! 😉

x

Your certificate of awesomeness…

WEGO Health Activist Writers’ Month Challenge, Day 3:
“Post a picture that symbolises your condition and your experiences”….

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This award is for you, for our condition and our experiences, the space is for your name….

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Elle and the Auto Gnome blank certificate

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xxx

My Health Activist Weblog

Well here I am on day two of the health activist writers challenge. I’m sitting supported upright to try to reduce some back pain I’ve been having and as a result my dysautonomia is trying to make me pass out! if it’s not one thing, it’s another, eh?!

Elle and the Auto Gnome, at the computer desk

I am one of many health bloggers / activists out here in the internet. I write about living life with (and despite) my conditions. But I also gather information on the conditions because they are so complex and specialist that many medical practitioners are simply not aware of them. So for us patients to learn about our own conditions is very empowering – it enables self advocacy so that we can participate in health discussions with practitioners, and even initiate practitioner awareness through the sharing of our acquired knowledge and understanding. Essentially, we help ourselves through learning about our own conditions and, unsurprisingly, many of us wish to help others going through the same process because we know what it’s like, we’ve been there and we want to help, x

I have had CRPS for 13+ years as a result of a minor non-invasive injury. CRPS is an intractable pain condition that is one of the most painful conditions known to medical science and which has spread throughout my body. The condition is not ‘simply’ a pain condition because it also involves the autoimmune system, the autonomic- and central- nervous systems as well as problematic rewiring in the brain.

Having multiple faulty systems has resulted in my array of additional health issues including permanent nausea, varying levels of continuous near-fainting, continuous ‘fight or flight’ issues, ‘brain fog’, comprehension issues, processing problems, varying levels of difficulty with word recall, faulty memory, arrythmia, IBS, body temperature dysregulation, teeth pain, jaw problems and jaw pain, migraines, fatigue, insomnia, ear pain, light sensitivity, noise sensitivity, increased sense of smell, overly sensitive taste issues resulting in difficulties eating various food types, a gagging response when eating certain food textures, disrupted vision, hand tremors, occasional leg tremors, eye tremors, other muscle twitches and spasms, dystonia…. I could go on, but I might send you to sleep! 😉

Me with brain fog!

Me with brain fog!

So here in this weblog I talk about living with these things – living despite these things – but I also focus strongly on gathering information about these conditions so that my fellow patients can read a lot of information in one place instead of each one of us having to search eeeeverything.

In particular, my ‘What is CRPS?‘ page brings together a large amount of information with a lot of references to peer-reviewed research journals. So my fellow patients and their doctors can see where the information came from and how up-to-date it is. This last point is crucial as the condition is so complex  and multi specialist that research is always moving the field forward and so keeping up-to-date with current knowledge is imperative. So I scour the research links and regularly add information to my ‘What is..’ page. (There will be more additions in the not too distant future).

Similarly I also have a ‘What is Dysautonomia?‘ page. There is more accurate and comprehensive information on Dysautonomia available on the Internet than there is on CRPS, but once again this is about drawing information together for fellow patients to find in one place. Unlike the CRPS page the references tend to be for reliable Internet sources because research journal papers tend to focus on really specific aspects and subtypes of dysautonomia, whereas I present information about the condition as a whole to present a broader foundation of information, with web links at the bottom of the page for patients to follow if they wish to know more on a certain topic.

My ‘Useful Links‘ page will continue to be added to over time. It includes key printable research papers to show to doctors, links to helpful organisation’s websites, and various other bits and bobs which can be very useful to patients with these conditions.

Of course, this is also a  blog. I write about experiences with my health conditions, with doctors, about doing things despite the auto gnome; about how it feels, what it does to us, my terribly British tea-drinking habit 😉 , how we can still kick some arse, and oodles more!

Some handy blog posts for fellow patients may include:

My CRPS journey to happiness

The weirdest thing about my health… – the problem with health variability

Tick…Tick…Tick…Tick…SPOON! – referring to Christine Miserando’s great analogy for explaining to others why we can only do so much in one day

The Hungry Bear that Lurks in my Coat-Cupboard! – talking through issues that cause me confusion in conversations, inadvertent problems with others, and a tendency to nearly pass out! (re ‘fight or flight’ and processing)

This Too Shall Pass – on using distraction techniques, facing my fear in different ways and working through

Experiencing cognitive change – and also the confusion, and even loss of loved ones, that it can have a hand in

What I take with me to my doctors appointments – how to get your doctors to listen and to think along the right lines to be helpful to you

McGill Pain Index, CRPS and Fibromyalgia – Pain level comparisons to demonstrate the high level of CRPS pain (can be helpful for those around us to see)

Always get copies of your hospital notes

Of course it may well be that the daft posts of sillness are of more use to my fellow patients, really…. never underestimate the power of a nice cup of tea and a laugh 😉

Mmmmm..teeeaaa

Mmmmm..teeeaaa

Much love from me, and I’m cheering on all of my fellow patients and fellow Health Activists out there <waves pom poms enthusiastically>  😀

x

WEGO Health Activist Writers’ Month Challenge 2013

I attempted the WEGO Health Activist Writers’ Month Challenge (HAWMC) in April last year. I was trying to write one post per day for the challenge. On the 7th day I wrote about my resulting loss of brain and had to stop.

Writing a small post every day for 6 days = zombified state (minus the hankering for brains)

Writing a small post every day for 6 days = zombified state (minus the hankering for brains)

After that I wrote the occasional post but I had learnt a valuable lesson about pacing my beleagured brain as well as my inconsistently inept body.

I’ve just completed my study dissertation and so this HAWMC 2013 I have one less brain-factor to consider, and a substantial one at that, (although bear in mind that flexible study sessions at home were only a random, once in a while affair with my mostly lack of brain. Tough gig). So let’s see how I manage it this time, eh?

After writing the last bit of the dissertation I am in a major CRPS pain flare which is increasing the level of dysautonomia issues as well. So I don’t for a moment think this will be easy, or even that I can complete the full challenge and post every day of the month. It’s just not going to happen. But I do think it’s about time I got to come back to my weblog hub and spend some time hanging out with you after my study-induced hiatus. I haven’t been here as much as I’d have liked to have been. I’ve got some updating and catching up to do.

I’m going to give the HAWMC a whirl, though. I’ll try to take it carefully to avoid flare, but I know it’s going to be tough. In the same month I have a major consultant appointment, a disability benefits assessment and a physio session that I hope to spend doing Tai Chi in front of people instead of in my living room. All of these things will involve travel (as a passenger) and stress (from the challenge of managing my health in trickier circumstances than usual) which means the pain levels will rocket some more. April is going to be spent battling flares because I just have too many things in one month. Yes, three appointments in one month is (for my body) a lot to deal with and it will cause major health repercussions, (not something that I expect my assessor to comprehend in the health ‘assessment’ as I’ve been advised that none of them have any training in my complex, variable condition whatsoever. Terrified much?)

So yes, April. Not going to be an easy ride this month. The ‘assessment’ and the appointment will be causes of stress for different reasons (one because there’s no comprehension of my condition to assess my related variable functionality, and the other because of the amount of travel involved). So I’m hoping that occasional short Tai Chi physios will help me to battle through the pain, stress and dysautonomia flares, in conjunction with oodles of hot water bottle rest and gritting of teeth when the pain gets off the scale. Don’t you just hate it when you begin a ‘busy’ month (by my body’s standards) already in flare? Ah well, I like a challenge, right?!

I know that the act of writing for the blog will be a good distraction at times, and at others it will be impossible to write owing to the state of my health.

Elle and the Auto Gnome, at the laptop

To begin the April challenge whilst trying not to scream with the pain is not my ideal beginning. But it is the way it is and I will keep writing whenever I can.

So here’s to some varying themes and inevitable silliness along with many hot water bottles and cups of tea. Here we goooo…. 😉

x

“Keep Calm and….”

The other day I promised one of my pals that I would post another link to a website where you can create your own stuff…

Today the inspiration is from good ole “stiff-upper-lip” Blighty-ness!

Back in 1939, after the outbreak of the first World War, the British Government decided that morale-boosting posters would be a positive addition to the British people’s mental resources. The most famous being the “Keep Calm and Carry On” poster, headed with the symbol of George VI’s crown.

Now, here’s the exciting bit….

There is a magical place where you can create your own versions of the poster!

I was mulling over what would be appropriate wording to relate it to my life and conditions. In the end, the first one that came to mind was the one that was truly ‘me’… When I don’t know something I go away and learn about it, whether it’s about my health or any other random interest. I spend lots of my sparse and infrequent on-the-planet-and-almost-upright time on the laptop hooked up to the ‘net. I have a hard-drive full of research papers and articles on CRPS, Dysautonomia, Tai Chi and various other, seemingly random, topics…

So this poster says the most about me, and makes me laugh at the truth of it….

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Bwahahaaa, it’s meeeee!

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But it’s far too much fun just to stop there, of course, so here’s a few more….

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And the most terrifying of all……

Tee hee

Of course a fat load of good I’d be in a fight…. “Can you come at me in slow mo’? I don’t do fast. Oh yes, and if you could just wait a few minutes, I’m feeling a bit lightheaded”. Yeeeaaah, I’m truly terrifying, me. 😉

If you fancy inventing some of your own posters, then just pop over to this address….

http://www.keepcalm-o-matic.co.uk/

x