Photo Challenge for CRPS Awareness, Day 16

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 16 – A picture of someone who inspires you

As a chronic health patient it is now par for the course that I meet even more inspirational people to add to my list of ‘wonderfuls’ from over the years. There’s something about getting dealt crummy health that makes us fight harder, find the silver lining or, if it’s well hidden, create our own flipping silver lining! 😉

Today I choose to mention a fellow blogger who applies her love of science, her medical training, her experience living with CRPS and her superbly creative and wonderfully active mind to the big jigsaw puzzle that is CRPS.

Many of us live with the condition, many of us try to find out ‘what is what’ to help us work with our doctors to figure out how to treat our individual version of the complex disease. A number of us work to share the information we find to help our fellow patients, whether through friendships, support groups, blogging, information groups or websites. Not so many have the background, the determination and the sheer ‘non-specialist’ cheek to try to help unravel the mysteries of CRPS themselves. But, as I said in a previous post, is it exactly what is useful in what is effectively an informal, multi-disciplinary, international think-tank.

The blogger in question is Isy Aweigh. And she is one of those with the high level, expert-patient savvy and determination. One of those valued thinkers, and extra special for her loving heart. In short, she’s pretty darn fab’, (but seeing as she’s my friend perhaps I’m rather biased 😉 ).

She is fab’, though! 😉

Anyone who’s visited my blog before probably knows about my penchant for Tai Chi, and possibly even seen my post about my last tournament and what it means to me as a chronically ill patient. I tend to set my sights unreasonably high to see where I can get to, rather than set my sights lower and risk inadvertently capping my own potential before I’ve even tried. Well, Isy has done the same on a mega scale, and whatever the outcome is she will learn so much about what her body can be capable of, what treatments / recuperation techniques etc work for her body. And whether she marathons her way to the original goal, or whether the goal morphs into something different to accommodate new health info’, the experience will be a huge personal journey and deserves loud enthusiastic applause every step of the way. I for one shall continue to read the inspiring exploits and insights of my treasured friend.

Here she is, the one….the only…Isyyyyy Aweeeiiiggghhh….. (and Ari the cat 🙂 )…

Ta-daaaah!

This piccy is from Isy’s blog over at Living Anyway.

(Love ya, chick, x)

Photo Challenge for CRPS Awareness, Day 14

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 14 – A picture of someone you could never imagine your life without

My fabulous brother and all of my beautiful friends and are part of the weave of my life. You all make my life shiner and give me reason to keep on. Today’s challenge says “someone” though, so here’s a piccy of the man I hope to continue traversing life with and eventually grow old with, (body allowing, of course!)… my beloved pumpkin head / Magic Dude! 😉

Ben, pumpkin head

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Photo Challenge for CRPS Awareness, Day 13

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 13 – A picture of how you cope

Oblivion elf

I don’t usually play console games because I get reeled in and lose hours if I do! But when I am in real desperate need of distraction this is my ultimate past-time to help get me through. It demands attention, but does not have to be challenging. It allows me to do it from whatever position I’ve had to end up in to try to ease my physical pain, but most of all I found that this is the only thing that helps me get through a major emotional pain such as a massive loss.

This is my Elven character from the role playing game called ‘Oblivion’. I’d love to go back to it but I always have far too much to do. Occasionally Magic Dude and I will spend an evening playing a two player game, but otherwise I just don’t play at all. But…. I always know it’s there should I ever need it again. I reeaally helped me get through a terribly painful time in my life that was particularly distressing and nigh on impossible to function through for the first two years.

Thank-you technology!

Here’s a post I wrote last year about getting through tough times and dealing with fear… This too shall pass

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Photo Challenge for CRPS Awareness, Day 09

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 09 – A picture of gratitude in pain

Today I attended a Tai Chi fundamentals seminar during my physio’ time to brush up on my basics and hopefully improve some more. A seminar is longer than my physio’ time so of course I hurt a little more than usual afterwards, but now I am under the blanket on the sofa with my hot water bottle (back in it’s fluffy cover again!) and I’ve just drunk a nice cup of tea.

I plugged in the stereo before I sat down and I have the volume down really low to allow me to listen for a little longer before the noise sensitivity pain makes me turn it off. My music is on shuffle so I am getting a variety of tunes from different genres which is rather fun. For lunch I’ve eaten some fruit and some cheese (the latter to help my brain recover from the seminar). The sun is shining outside and trying to shine in a little through my overhung front window.

I am grateful to be able to spend my physio’ doing something that I love, and to be able to spend the time that I need to recover afterwards. I have my laptop with me, and that means that I have my friends with me too (as that’s where you all live)!

I am sat so that I can see the mantlepiece. On it are some photo’s, some postcards from friends who are also of compromised health and it means so much to me that they took the time and effort to write to me, a congratulations card from a friend about my Tai Chi progress and I love her so dearly that I haven’t been able to bring myself to take the card down yet, and a beautiful heart ornament from another friend who I love so very much. The ornament represents the beautiful friend who sent it to me and, by extension, my besties who I adore so much. Just seeing it there makes my heart swell in the joy of love for my friends. I am so grateful for you all being in my life and for being who you each are. Each day I am stuck on the sofa for many hours at a time, and each day my gaze will fall upon this ornament at some point and doing so I feel lifted, I feel lighter, I feel grateful. Thank-you my friends, and thank-you to the specific friend who sent this to me, you are always in my heart, xxx

Heart ornament

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Photo Challenge for CRPS Awareness, Day 06

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 06 – A picture of something you’d love to trade places with 4 a day

Oak tree, full

An oak tree on a warm Spring day, preferably in some beautiful countryside with other trees to hang out with, wildlife flitting about and some gorgeous views. Perfect!

Oak tree, branches

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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

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

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!

christmas hats for the jar of joy

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 😀

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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! 😉

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My theme tune

Despite spending the majority of time on my own it’s not actually a quiet life. If you were in the house with me you’d probably not know I was there, except for the occasional conversation with myself and the sound of the kettle going on! But in my head there is music playing a lot of the time. And when there isn’t music there is incessant jibberjabber, thoughts parading round my head, problems to be solved, ideas of things to do and to write about. It’s very busy in my head, and definitely not quiet!

With all this hubbub and music I should probably stretch to having my own theme tune. I wonder what that would be?

If it was a theme tune for the CRPS I reckon it’d be a proper old-style blues track….

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.                   …DAAH…

.                                                                                ..DA…

Da…                                       …DAH…                                                ..da….

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I woke up this morning….

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.                   …DAAH…

.                                                                                ..DA…

Da…                                       …DAH…                                                ..da….

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Still got CRPS….

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.                   …DAAH…

.                                                                                ..DA…

Da…                                       …DAH…                                                ..da….

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I’ve run out of teabags,

And the RAAAIIIN is coming down…..WOOAAAH yeeaaahhh…!

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It’s not unusual for me to start singing the blues riff because I quite often hear the words ‘I woke up this morning…’ come out of my mouth, and the blues riff is the natural follow on! Which then results in barely awake Magic Dude listening amusedly to an impromptu made-up song about whatever it was I was going to tell him!

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If I was going to pick a theme tune for the Dysautonomia it’d have to be something that fits in with my brain fog. Something where everything is weird, wobbly and incomprehensible, but at the same time any negative aspects pass me by so that I just drift along thinking everything’s bound to be A-OK if only I could find my brain. And with that in mind, this eclectic ditty leaps to the forefront of my thoughts….!

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Hehe, that’s a tune from my childhood and I suspect that I shall continue to find myself periodically singing it for the rest of my days! 😉

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But essentially, and overall, the most important thing is to find yourself, find your drive, and keep your own life moving forward in any way that you can. Advice from others to those who have chronic health conditions is often along the lines of ‘just think positive’ without bearing in mind just exactly the array of counterbalancing issues that there are to contend with. Yes, we can be positive, but everyone has down moments, everyone is only human. And it’s that beautiful, rough raw spirit that deserves to get acknowledged. No-one should be viewed as any less a person for not being positive aaall the time. Better still to acknowledge the true strength and beauty of the characters in this world who keep going despite the negatives. Who find the will to take hold of that steering wheel and allow themselves the space to just be.

And with that in mind, I shall leave you with this…

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