Three quotes, possibly not the sort you’d expect!

WEGO Health’s challenge for today is to post my three favourite quotes. I don’t think I could pick just three faves though! There are different quotes that I appreciate during different times, emotions and situations. I could get all deep and meaningful with my choice of quotes, in fact I’m going to… just not in the quite the way you might expect!

So that’s set the scene 😉 …. here we go….

Here’s a snippet about Magrat Garlick, who grows and becomes over several books. It turns out that she’s one heck of awesome when the day needs saving!

Terry Pratchett - about Magrat not getting walked over any more

This is written with humour of course, I’m not suggesting that we shouldn’t be good mannered. But the underlying emphasis is bang on – we have the right to speak up if we are being treated with disrespect. We have the right to live life as ourselves….

You are your own unique self. Be you….

Neil Gaiman - everybody has a song

Live your song, x 😀

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And here’s a few wise words from Nanny Ogg about letting go, xx

Nanny Ogg - passed a lot of water since then

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Oh all right, so I admit it, Nanny Ogg’s quote is rather a favourite of mine!* 😉

Much love from me, x

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*For anyone around the globe who is not familiar with the english proverb this last daft (and rather adorable) quote is based on..  “It’s all water under the bridge now” means that the topic being discussed is in the past and that any emotions involved with that topic are also in the past. It’s often a way that one person will let another know that all is okay now. Of course Nanny Ogg’s misreference to weeing is most likely done on purpose in a totally innocent way whilst she has a cheeky laugh on the inside! 😉

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It’s not all in your head!

There are two parts to today’s post again.

WEGO’s health blog challenge: “What’s the most ridiculous thing you’ve heard about your health condition?…”

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The most ridiculous thing I’ve heard about my health condition(s) is the shuddersome concept of… “it’s all in your head”!

Yep, we really get told this in some appointments. Sometimes it’s merely a medical practitioner trying to explain autonomic pain amplification and doing it reaally badly! But often it really is as extreme as it sounds – genuine physiological symptoms get written off as psychologically founded.

Fortunately there is oodles of research these days about how psychological effects in the kind of conditions that I have are often caused by living with the condition itself. So we have plenty of research papers to back us up, the only problem is that we have to be the ones to find and share this research because non-specialist medical staff have often not come across them. (See my ‘What is CRPS?‘ page for some handy research paper references, and the explanation about interpreting anxiety symptoms wrongly applies to Dysautonomia patients, too).

It is important for our doctors to remember that an understandable reaction to chronic health does not necessarily mean mental health issues. We should not have to hide when we are struggling owing to fear of getting mislabelled.

Of course health conditions and mental health issues are not mutually exclusive: it is entirely possible for them to co-exist. This is not an black and white area, shades of grey are the norm, but even without any mental health issues at all patients with chronic health issues should still be supported both physically and mentally for the simple fact that severe long-term health problems are, at the very least, very challenging in the life changes they effect. It is an important part of living with a chronic condition to be able to find ways to keep going, to find new meanings, new value in ourselves, new ways of living and of finding joy in life. With the addition of some handy psychological tools we are much better equipped to handle our situation.

I’ve heard the “it’s all in your head” idea many times. I’m a veteran of appointments where it turns out that I know more than the practitioner, as do many of us with specialist conditions. I have the scientific info’ to undermine their erroneous comment in the sweetest most helpful-patient kinda way! 😉 (feel free to add a comedy evil laugh here!) Ohhhh yes, get in the know peoples, doctors like data so data them towards the corrected viewpoint! Most doctors just haven’t considered the possibility that a faulty ANS can cause anxiety symptoms without any pre-existing anxiety, but once you point it out it makes perfect sense to them. It’s just showing them the alternate angle that they have to think from because our conditions don’t fit neatly into the main themes of medical diagnosis. They check out the organs and do blood tests for normal stuff but everything comes back negative so they think “there’s nothing actually wrong with them… it must be psychological”. But what they are forgetting (because it is not something taught as part of main medical training) is that if it’s not the organs… could it be the wiring between them? They need to run different tests to find out.

The trouble is, of course, that we tend to learn this kind of helpful knowledge retrospectively. Years after we were told it was all in our heads, years after we cried for the lack of support from a doctor when all we wanted to do was be able to get on with our lives, years after those around us doubted that there was anything wrong with us because our doctors didn’t think there was. Years later we find out why the doctors made that error, and we try to pay it forward by sharing the knowledge with our fellow patients who are still early on in their journey. To try and help them avoid the pointless pain and waiting that we had to go through simply because doctors only conducted the usual tests and the negative results falsely led them to think that it was “all in our heads”.

Photo challenge #6 – “…something you let go because of CRPS/RSD”

Clinical Psychology2 (2)

(source)

I was retraining for a career when I had to give up work. I studied for the required degree in my own time whilst working full-time, (thank-you Open University 😀 ), but before I had completed it I had to give up work. I carried on, graduated, then started my masters degree. I did not realise I would never be able to work or study full-time. My choice of career is no longer viable. But my training was in psychology and in research, my intention was to complete the Doctorate in Clinical Psychology so that I could study the post-doctoral training in Neuropsychology. My aim: to help inform and support patients with head injuries as well as their families.

Losing that future was devastating, but it looks like I have ended up with some pretty useful skills to make myself handy to my fellow patients. Letting go of the career I had worked so hard towards was horrible, but I’m on a different path now, and I can do a lot of good on this one as well, x

Introducing Signage Seymour (and a wobbly guy)

When I was first creating this blog I sat at Magic Dude’s old laptop and had a discussion online with two of my besties – my Local Friend and my fabulous university housemate. I was running potential blog names by them and we settled on the name by a circuitous route which involved much laughing and being silly. But before we could even get started I had to explain my thinking… first of all I had to divulge that ‘Auto Gnome’ is my own daft take on ‘autonomic‘!

What followed included many imaginative ideas about how to use gnomes as part of the blog and yet I have not actually done so. How remiss of me! 😉

To be honest, (<whispers confidentially>) I think gnomes are pretty disturbing! And I wouldn’t want something like that to take away from the main themes and point of this weblog. But there is someone who has been waiting in the wings a long time and who I really must introduce, although I shall be keeping him on a short leash so that he doesn’t get out of hand!

So, let me delay no longer, and introduce to you…. Signage Seymour….!

Original

Signage Seymour with his original sign

Har!

Seymour was a gift from my Local Friend and we decided that ‘Go Away’ was not really the message we wanted him to send! (Unless it was aimed at ill health of course)! So, as this month is CRPS awareness month, Seymour is now holding the banner pic’ currently adorning the blog’s Facebook page (and it is available for use if you want to purloin it), x

Signage Seymour, awareness pic 2013

Seymour is not a mascot for CRPS, though. Or Dysautonomia. Or hypermobility.
He’s more of a helper who holds important signage to allow me to get on with the writing bit! He has no battle cry simply because he does not go into battle. He’s more of a hold-your-coat sorta guy.

I like to think that I have a battle cry, mind you. When I feel like yelling “onwards” or “hurrah!” I sometimes remember that (like The Tick) my battle cry is “Spoon!”

If any of my conditions were to have a mascot though, what would it be?

– Something that bounces back time after time after time after…
– Something that takes the pain and still gets up to kick some arse!
– Something that isn’t dangerous until it’s cage gets rattled too many times in a row
– Something with hidden depths, hidden strengths and a life others cannot comprehend

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So it looks like my mascot is…..

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………………………………………………………….a Wolverine weeble!

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Of course that means that the battle cry has to be an unintelligible at-my-wit’s-end / this-is-the-last-flipping-straw “Raaarrrrggghhh!” Hehe

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Wolverine Weeble

A quick sketch on an egg is kiiinda like a weeble, right?!

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And here’s the Facebook banner pic’ in case you want it to use..

CRPS awareness month, 2013

..or you can get it directly from the Facebook page, x

I think I can, I know I can…

For today’s WEGO Health challenge….

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I think I can get my doctor to talk to the consultant about alternative ANS stabilising meds.

I think I can get my head round some of the statistical tests for the research! 😉

I think I can increase my core stability without nearly passing out!

I know I can get my symptoms level enough for the few minutes required to be able to compete in the Tai Chi nationals next year 😀

I know I can co-write a paper on CRPS

I know I can rest in the knowledge that I’m never gonna run out of tea!

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Magic Dude at Riverside Pk

Magic Dude by the river as I take autumnal piccies

And I can attempt/do these things thanks to the wonderful support, love and understanding from my truly awesome Magic Dude! I never get tired of his company, he makes me laugh, gives me hugs and my heart sings to know him, xx

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If I could accomplish one thing in 2013….

That’s an eeeaaaasy one to answer!

I’ve hardly been able to write for this November’s writing challenge. Initially because my brain falls over anyway, but then it was exacerbated by the two days of hospital tests which required coming off my meds…. eek! More symptoms to deal with, prolonged period of time for recovery and I’m still not back to my wobbly little version of ‘normal’ yet! I’ve fallen way behind in my studies because my brain won’t work and my body thinks it would rather like to pass out from time to time. Occasionally I’ve managed a blog post, but that’s about it. *sigh* Maybe next year…

When it comes to the writing challenge of the day: what the one thing is that I’d like to accomplish next year ….. I obviously have to first survive 2012! I’ve got a mere one month left to do some serious catching up whenever I can. So my yearning for an accomplishment next year is hanging on a thread surrounded by 2012’s dastardly attempts to thwart me!

I have received my disability forms for the changeover of the UK benefits from the old system to the new get-people-off-benefits-and-back-into-work system. Which we’d all adoooore, right? Working and being ‘useful’ again is central in many of our hearts. A real ‘I wish’. I can’t guarantee being able to do anything on any day, as I talked about in my recent post about health variability. And the trouble is that very few people get support to look for work that they might be able to do from home around their health, oh and the completely inapplicable yes/no tickboxes filled in by non-specialist assessors who don’t know about CRPS or Dysautonomia and who have nowhere on their tickbox forms to write anything about the crucial variability. o.O

If I plan in advance so that I can at least function in the assessment, they’ll tick boxes saying that I can function. It doesn’t matter that it took a week or two of preparation and tight activity control to get there in the first place, and it matters not one jot that it could take me weeks to recover from it. It only matters if I can touch my toes, pick up an object, talk coherently in the appointment etc. I know…. bloody stupid, right?

There is an average of 75 disabled deaths per week out of those declared ‘fit for work’. (Around 80% of disabled people are being declared ‘fit for work’, particularly those with complex or variable conditions). (The assessing companies have a financial incentive from the Governments’ Department for Work and Pensions for each individual they find ‘fit..’).

The UK disabled deaths over a period of a mere 6 weeks matches the number of UK armed forces fallen during the last 10 years in Afghanistan. And that’s just during six weeks, right? …..6 weeks of disability assessments vs 10 years of warfare created the same number of deaths. We mourn our lost soldiers, and rightly so. We don’t mourn the continuing deaths of the disabled. The figures are seen as some sort of farce, like it’s just not really the case. And when people who could be answerable are occasionally asked about it, they say that we’re more likely to die anyway. Just shrug those deaths off, why don’t you? We’re not really people anyway. It’s not like we feel or anything. Right???

Bear in mind this assessment process was declared ‘not fit for purpose’ after the original pilot study, but was rolled out anyway. It has now been distressing vulnerable disabled since 2008. Yes. That’s a lot of dead people. And yes, there’s an avoidance in the UK media about it. Only the Guardian seems to dare to speak out from time to time. Otherwise media mention is generally avoiding the issue, and yep, even the BBC is oh-so quiet about it all. Often various media coverage is a blatant misrepresentation or avoidance of the facts. Like when some papers talk about how many disabled have been declared ‘fit for work’ as if it’s some sort of success story. They choose to not mention that a vast number of appeals go through successfully, that the assessments are often found to be impossibly wrong, and they certainly don’t mention deaths other than as if they are anecdotal one-offs. The figures are ignored. Seen as irrelevant. The support for disabled people is missing. We are irrelevant. Not worth saving. Not worth fighting for. Not worth signing a petition for. (There were twice as many signatures petitioning against the UK animal tuberculosis related badgers cull). Despite the new system being fully opposed by the British Medical Association, no-one gets to hear about it as anything of any import.

It’s an incredibly distressing time for every single one of us who has a disability. We face being told we are fit for work’ when we are unable to do so. And there are a lucky few who get some kind of support to find work that might possibly be viable, but if they haven’t found viable work within a year they are also cut loose. No money. No support. Left bereft and penniless, whilst still trying to function with chronic illness and disability.

I fully expect the assessors to not comprehend my very specialist, multi-discipline progressive condition. So I’ve been trying to re-write some of my ‘What is CRPS?’ page from the blog so that they at least have some information to look at, with the references at the bottom so that they can see it’s legitimate medical science rather than my viewpoint.

I’m so very exhausted. I’m out of steam. Out of juice. Out of brain. Damn well out of nearly everything, including time.

Oh yes, and my disabled parking badge just ran out. Great timing, hey?!

The extra work and stress is causing further flare. Which impacts on my ability to do any small thing for a useful moment or two. So everything takes longer. And I fall further behind. And the stress increases.

I am worried about my studies. Genuinely concerned. Yesterday I told one of my besties that I am concerned that I might fail my course as a result of just not being able to study. I can’t think. My brain has simply not been there. For months. Stupid neurological condition. *grumble grumble*

I’m not allowing any attempts at studying at all until I can get the disability stuff sorted. Disability coherence is too important. But I can’t get my brain to work well enough for it to be anything other than painful slow-going. So I fall further and further behind. I used to be a princess of last minute assignments. Back in the day. But now I have no idea if I can think critically enough to do any studying at some point during a week or month, let alone during a day.

I don’t want to lose this. I am studying this course to help others. I am compiling research to add to the ‘state of the art’ – the current knowledge and concepts in my specialist area. I am not ‘just’ doing this for me. Though I would be so proud of myself for getting through it and producing something useful at the end of it.

Please, please, please, please, please let me be aware again. Let the meds kick in so that I might get an hour or so a week, at least. I don’t want to lose this. It is slipping away from me. I cannot grab to catch it until the disability paperwork is complete. And I cannot complete the disability paperwork until I get a bit of brain time. Round and round and round we go!

So… with everything going on a once, with the disability stuff beginning to get underway for me and all of the awful-ness that will follow, I need to do something for me. That makes me feel like I’m worth something. Valued in some way. If I could achieve one thing in 2013 it would be to finish my course. The course that I scrimped and saved for years to study. That I couldn’t do for years anyway because of my health and then I went and enrolled anyway because the qualification would have timed out. I would have always wondered. I had to try. But I want to succeed. Not like anyone else would succeed, I know I am a bear of very little brain compared to the old me, but to succeed by my modern day standards. To pass the course, and ohhhhhh I want the research to be good. Please, please, please! Let me complete the research to share with others, that could help others. And let me have my one little moment walking across that stage at the end of it all, with a photo’ of me looking self-conscious and awkward with the gown on and a silly grin, so I can look back at and say “Egads, I look awwwful”, but be so proud of myself for getting there in the first place.

2013. I’d like to leap into the new year like a ninja ready for action, but I fear I’ll crawl in by my fingertips instead. 2013, pleeeaaase let me be me, just for a while, let me pass this course and make a useful difference in the world.

<screws up eyes and wiiiiiiishes> !

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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Soapbox and Superheroes: Living at the centre of our medical info’ web

Hello alI, yep I’m still here, but the daily health blogging challenge for this November slipped backwards a day or two earlier than I’d hoped. I’ve got some hospital tests coming up, and the reduction of meds, required for the tests, is testing me already!

I’ve been trying to access my medical notes from three different hospitals to take with me to this latest appointment. It strikes me that this is an awful lot to have to do as the patient, especially when struggling so much day-to-day already.

As patients with ridiculously complex conditions it falls to us to be the proactive instigators of forward movement in our healthcare. As I’ve said in previous posts, primary doctors and even secondary level specialists just don’t have the understanding to provide appropriate treatment for the broad range of multiple specialist areas that our health wonkiness covers.

This is not a fault of theirs, of course. It is understandable that such specialist conditions are not known by primary doctors who are required to have a large amount of general knowledge. But it is hard for them to know who on earth to refer us to when they don’t understand what’s going on within our bodies any more than we initially do. Our symptoms present a confusing and often paradoxical array of ‘what the…?’

Specialists, at the secondary level of care, are the ones we get referred to after initial basic tests have been performed (blood tests, basic ECGs etc that can be conducted within the doctor’s own surgery). We are often referred rather randomly depending on what our doctor thinks is worth looking into as a result of how our symptoms present to them. But referrals often don’t help much either as, for example, a cardiologist won’t have enough neurological knowledge to be aware of the neuro’ treatment options which can enable us to avoid unecessary and, in the case of CRPS patients, potentially long-term health-worsening effects of surgery in such treatments as fitting a pacemaker. (I previously wrote about the pacemaker suggestion I received and I knew it was not a first option choice, but the cardio’ just didn’t know what else to do).

Tertiary level specialists are reeaally specialist. They’re the ones we could do with getting to see. The trouble is that our doctors and other specialists don’t necessarily have enough data to work out which area of specialism we need to be assessed within, because the data they need is multidisciplinary by the nature of our complex conditions. And a specialist in one discipline is not going to have info’ from one or more other disciplines to have that all important ‘Eureka’ moment that we need.

So, who does this job fall to?

The patients.

But we are not medically trained. So what happens?

We spend months, and often years, getting bounced around like a pinball in a medical game of chance, timing and whether we’ve got the right angle on the symptoms. And yet somehow we always end up rolling back down into nowhere so that we have to kickstart the process again and again ourselves. Right back to square one… sat in the doctor’s office explaining symptoms which have got to the stage of being truly beyond unbearable otherwise we wouldn’t be there (because unbearable symptoms is something that is just everyday life for us nowadays). And we tend to sound so calm and collected most of the time simply because we have learnt how to present as ‘normal’ a front as possible through intense pain that used to have us screaming out loud, through symptoms so bad that we should be falling over or unable to make any coherent sense at all. Yes, the years of sensitising us to all the little oddities in our bodies and brains means that we spot the symptom slide early and immediately put into play some sort of mechanism that allows us to soldier onwards, and we don’t even consciously always realise that we are doing so because it’s become an ingrained habit: how to look and sound as if we are functioning normally when in actual fact we’re not really here any more! This is helpful to prevent from doctors going down the ‘hysterical patient’ assumption, and yet incredibly unhelpful in that we are describing intense distress whilst looking really calm!

So…. after years of square one, we get into the habit of explaining our condition to the doctors. Some balk at patient knowledge and assume there’s some kind of paranoid or hypochondraical moment going on! (sigh) Others realise they’re out of their depth but don’t know what on earth to do next and thus display their rabbit-in-the-headlights look, and sometimes they honestly say “I just don’t know what to do.” But as the years wend on we learn that presentation is the key. How we present both ourselves and the data to doctors often affects the outcome.

So… in we go… here are the facts, this is what I was diagnosed with (copy of letter to back it up), which obviously relates to having a faulty ANS (copy of research paper(s) to back that up, doctors like data, remember), here is my list of symptoms (one or two A4 sheets of not-too-small fonted type in simplified, easy-to-read form, under headings if we think it will make it simpler), these are the two or three most horrific symptoms right now that I need to have addressed (reduces the overwhelming amount of info’ to a few things they can focus on constructively), we reassure them that we would never do anything silly like try and diagnose ourselves (they relax a bit and continue to listen and weigh up the info’), but given that we know that my body has this wrong with it, and that this relates to that, and that these symptoms relate to this, it seems entirely possible that the new symptoms could be related to this as well, of course we are not medically trained, but the obvious links between this and that would suggest that it would be very sensible to see someone trained specifically in both this and that, so I’m not saying I’ve definitely got the answer or anything, but it just seemed to make sense to me, so I did some research just in case and I found that there is a specialist here and here that could be helpful (backed up with the relevant experience and current medical post info’ of the tertiary specialists, of course)…. (allow their brain time to see the totally pure sensible logic in this, there’s no creative-scaredy-patient traces in what we’ve said at all, just the facts, presented in the most digestible form), anyway, I’m not medically trained which is why I’ve come to you Mr-doctor, because I really need to do something about this, I really need your help. What do you think, Mr-doctor?

And Mr-doctor breathes a sigh of relief, because it really does make perfect sense, it does all link in, and there’s no way he would have seen the connections without the patient’s expert input. Mr-doctor says “I think that is a really good idea!”

(More info’ on what I took to my doctors appointment here).

But though we can see how this is the way things are, what does this mean? Aaaall patients with comparatively rare/unknown/complex conditions have to become their own experts to self-direct their own treatment options?

Yes. It does. It’s not ideal. You could even argue that it’s not right. But talk about problematic to ‘fix’.

We have to educate ourselves so that we can explain our own conditions to doctors. It might sound a bit weird to most people, but to those of us living with a complex multi-disciplinary condition it is simply the way it is. The way it has to be. Or we don’t get treated. Or worse, we don’t get treated appropriately which can cause more health problems than it solves if the knowledge isn’t there.

In addition to this basic truth, as pants as it is, (and it is pants), there are issues which I am experiencing now. I saw a respiratory consultant and specialist respiratory nurse at one hospital, I saw a specialist respiratory physio’ at another hospital and had a tilt table test in a another department that was nothing to do with the respiratory stuff (admin’-wise anyway), I’ve had numerous ECGs at another hospital, and goodness knows how many notes are floating around however many hospitals in the South of England about me. The problem is that that’s where the notes are and that’s where they stay.

You’d think that my doctor would get copies, or at least some sort of informative summation. But no. The poor chap gets bugger all. Sometimes he might get a letter with a couple of not-very-informative lines in it. How is he supposed to direct healthcare for his complicated-health patients when no-one tells him the specifics of what’s happened at the referrals he’s sent them to?

So yes, when we’re in a situation like I am now… hospital tests over two days coming up… the long journey to and from a specialist hospital will cause major health issues (even with Magic Dude driving and looking after me)…. I’m nowhere near ‘fixed’ when I’m on my meds, and for the tests I’ve been asked to come off the meds…. medless me means brainlessness beyond belief, moments of brain where I can do something like write this if I concentrate hard enough, if I’ve rested long enough, if I’ve managed to eat and drink enough fluids, if…, if…, if….., ….. (I’ve done pretty much no thinking or doing for the entire day, It’s now 6.30pm and I’m just about managing to write this)… the tests will cause flares in my dys‘ symptoms and in my CRPS pain levels, I have to brace myself for the recuperation period afterwards…. and yet…. I also have to phone round different hospitals asking how I get copies of my notes, then go round in circles as people try to figure out who I need to ask, then every hospital has a different way of working (one got the specialist to give them the info’ and just posted it out to me, one emailed me a form I have to post, another gave me contact details where I can send a letter, the latter two may cost me money but no-one can tell me how much until they see how many notes we’re talking about). I’m struggling to stand upright to get myself food, and I’m struggling to think words into sentences, but I have to do all this extra work because if I don’t the specialist won’t have any extra information because no-one ever sends notes to primary doctors to keep them all in one place.

This is my soapbox moment. But there’s nothing much we can do about it. Yes it’s reeeeaaally hard going. But if I don’t do this the notes won’t be with the tertiary level specialist, and then he’ll have less data to work with. Doctors neeeed data, that’s what they do for a living. So it’s my job to gather it all together in one place, because if I don’t the data just won’t be included, and it’s my job to explain my health to doctors.

Of the three hospitals only one could get the info’ to me quick enough, and they didn’t charge me for it either. So my huge thanks to the admin’ lady at the local cardiology department who sent me my ECG and tilt table test results. They are the ones I most wanted to receive in time for this appointment.

From now on, I shall always ask for my notes as a matter of course. I shall add them to my copies of all sorts of medical stuff at home. I am the data-holder, I am at the centre of the web of contacts and information. I feel that my doctor should also have this honour, but as he does not I shall share the data with him. After all, he and I are best working as a team. He as the medical professional and I as the expert patient. I think that’s a blummin’ good team!

It’s just hard on the patient when they’ve got a complex condition to try to live with every moment of every day already, to then have the added responsibility of Health Programme Manager and Adminstrative Manager as well as Don’t-know-how-you-do-it Super-Hero of the Chronic Conditions League of SuperheroesTM!

Soapbox moment over, this is just the way it is. We have to allow ourselves some downtime, but for the most part we wear capes because we darn well have to!

All day, every day, 24/7, relentless, non-stop, complicated, unpredictable and distressing health issues automatically means getting awarded a cape, right? 😉

Love and best wishes to all of my fellow superheroes, don’t forget that even superheroes have to take their capes off to put them in the wash from time to time, our Clark Kent moments are all part of it. It makes us no less phenomenal, we each would be less of a Superhero if we were not human as well, 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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