CRPS Awareness photo challenge: fear and coping

Today’s challenge is to post a quote which has helped me cope. This little gem of a quote is from the book ‘Dune’ by Frank Herbert.

Fear is the mind killer

It gives us a choice in the face of bad things. We don’t have to accept being flattened by our circumstances. Changing our response to fear gives us back some control. We can feel our emotions but we don’t have to be overwhelmed by them.
The kind of life changes that result from chronic ill health have been described as a kind of drowning.

This quote suggests we can get through this. And we can. 💜

x

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CRPS Awareness photo challenge: a pain aid

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(source: a screenshot of the loading page on my laptop)

Role Playing Games (RPGs) are helpfully immersive and so make a brilliant pain distraction tool. These are more helpful if they don’t have lots of decision making in them as people with chronic illnesses make lots more decisions throughout each day and so run out of neurotransmitter chemicals far quicker. Fortunately most modern games allow roaming and choice, so we can choose game activities that can help to distract us without having to deplete our brain even more.

My recovery game is the Lord of the Rings Online.

x

Losses and hope

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

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

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

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

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

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

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

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

Suzy's photo challenge, 2015, Day 6

 

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

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

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

Suzy's photo challenge, 2015, Day 7

 

xxx

 

 

Send in the clowns

Well here we are again. Well done people, you’ve traversed another year. Whatever you’ve been through this year, the ups, the downs, the wibbles, you’ve been awesome. You’ve hung in there and here you are now reading about my own little adventure new years eve.

I went out today to run some errands. It made me realise how long it’s been since I drove myself into town for a physio’. I was actually a bit nervous about going so far from the house on my own with no-one to meet there ‘just in case’. But it was a successful trip. The festive market has gone so there’s more pedestrian space, and the multitude of shoppers has thinned back down to a more usual amount so I didn’t have to wait in any long queues, hurrah!

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Christmas lights

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I bought some Christmas cards for next year (I know, organised eh?! hehe), a notebook for my upcoming free online course on medical neuroscience and some beer for Magic Dude to swig at midnight tonight to see in the new year with me. But I also grabbed some unexpected additions: some cute lights to hang from the mantle piece and a reindeer decoration for the Christmas tree. Oh, and obviously I needed a Batman biro with multiple colour options. And a glittery travel mug. Obviously. 😉

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New Years Eve buying

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Living with chronic illness does tend to be a bit of a circus at times so new years eve is often pretty hard for many of my fellow patients out there. We tend to find the laughs, silliness and smiles where we can but some times are harder than others. Which is why I want to share this…. I fell about laughing when I finally saw this following little ditty last night which may become my theme tune for 2015….

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Imagine leaving a doctors appointment where we’ve seen a practitioner particularly lacking in knowledge specific to our conditions – what a circus. What better to cheer us up than to sing quietly to ourselves as we leave…”dah-dah-daddle-uh-da-dah-dah Circus…”! By the time I get to the bit about polka-dots I expect I’ll be chuckling. We’re stronger than we think.

Sending best wishes for the new year to you all,

Love from me

x

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P.S. Here’s a version in multiple languages. Just because. 😉

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The Elusive Spoon

This is written for Dysautonomia Awareness month and is spoon related as a result of Christine Miserando’s well known “Spoon Theory“. This is a bit of a day with a CRPS & Dysautonomia patient…

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Oh no, really? Morning already? How did that happen?! I mean it’s not like I got any actual quality sleep or anything! Ugh!

Scrunching her eyes up and contracting her muscles to pull herself back under the covers Elsie tried to come to terms with the time.

Yep. There’s no getting around it. It’s definitely morning and if I don’t get up I’m gonna be pushed for time.

Flopping the covers back she raised herself up slowly then waited for the spots of light to stop dancing in front of her eyes before attempting a full upright position.

Scooping up a pile of cutlery next to the bed, and then returning one to the bedside cabinet, she reached for her mobile phone to check the time. 9.30am.

Oh no, I’ve only got an hour!

A brief look of panic crossed her face before being replaced with one of intense determination.

“Right!”

Pushing herself up to standing she moved stiffly across the bedroom, being very careful to step overly widely around the corner of the bed.

No bruise that time. Hah!

Slowly becoming a little less bent over as she walked to the bathroom, she piled the cutlery on the windowsill as she reached for the toothbrush.

With clean teeth, washed body, brushed hair and an empty bladder she made her way back to the bedroom. A little more alert and minty fresh than before. A small pile of cutlery now also sat on the bathroom windowsill but the remainder was clutched in one hand and got deposited on the bed as she found underwear, tracksuit bottoms, a couple of layers and her handbag. After dressing she placed a couple more pieces of cutlery on the bedside cabinet, before stuffing the rest in her bag with the mobile phone and heading off downstairs.

How am I doing timewise? Checking her phone again. Pretty good. Still time for a proper breakfast. On went the kettle, into the microwave went the porridge, and she started counting out supplements, vitamins and medications into a pretty coloured shot glass. Tea made, porridge mixed with scrummy cinnamon, tablets collected together, hot water bottle made… all went into the living room and she turned the TV on for company before collapsing on the sofa.

Placing the hot water bottle under her legs and pulling a nearby blanket over them she grimaced a little but only for a moment. Then that look of determination returned again. Reaching for her bag she removed some of the cutlery, placing it on the table.

Hmmmm, this bag’s getting light already.

Half an hour later and once again standing upright, Elsie makes a soft drink to put into the bag along with a bag of ginger, half a bag of salted pumpkin seeds kept shut with a metal stationery clip, and her collapsed practice sword.

“Trainers! Can’t be forgetting them now, can I?”

I wonder if my neighbours can hear me talking to myself? Hehe
Coat, bag, keys, flask, mobile, trainers, insoles…. yep I think I’m ready.

Reaching into her bag she removed several items of cutlery and left them on the coffee table before locking up the house and settling into the car for the short journey into the outskirts of town.

As she pulled up into the car park at the industrial estate there was a single piece of cutlery lying on the passenger seat. After finding no parking spaces and all the disabled bays taken she had to use a space outside on the main road to walk from. Before leaving the car she placed her disabled parking badge on the dashboard and a second spoon next to the first and then walked to a business unit where she greeted classmates and teacher and started industriously putting on her trainers and doing some stretches that have a tendency to make other people’s eyes water. But that’s hypermobility for you!

After 15 minutes of calming Chi Gong she felt more separate from any stresses and strains but had to drink some of her lemon squash to try and reduce her body’s urge to faint. Some glugs of fluid later and the class were moving in time to the music for the Yang style 24 form of Tai Chi. It’s the form often seen practiced around the world and it felt good to go through the moves together as a group and to feel the body responding to what was being asked of it. The familiar moves being reined in by Elsie so that she doesn’t topple over as often nearly happens early in a lesson.

Good thing the teacher knows about me or I’d have a list of corrections as long as my arm!

While the others were chatting about the moves they’d just worked through, Elsie quickly ate some ginger to try to reduce the nausea, had another couple of swigs of fluid to try to reduce the faintyness and then she expanded her practice sword to it’s full length to start some individual work. The class numbers were small today and there was a little more space to wave the sword around!

It felt good to work through the sword moves she knew so far, but after some corrections from the teacher the fluidity and meaning of the moves increased and it felt great! No, it felt awesome! How wonderful to be upright and moving with purpose. She knew the moves could look beautiful if she worked at it hard enough, so while the lesson lasted she went over and over and over… just getting the moves more clearly etched into her head and into her ‘muscle memory’ for an even better foundation to work on. Fantastic!

When she returned home she found that getting out of the car was already difficult. Walking as well as she could she went indoors to put the kettle on again. The pain was already rising. She could not stand long enough to make any food for a midday lunch so she grabbed a banana and a protein flapjack. With hot water bottle and a cup of tea she returned to her spot under the blanket and this time she lay down flat to try to help her body recover from the near-fainting that had come on.

Reaching for her bag she removed several pieces of cutlery and looked at what she had left. One piece for everything she did. Starting with a finite number she had to lose a spoon for every move she made. One for getting to the bathroom. One for getting washed. One for getting dressed. They go down in number so fast it makes her days very tricky. Carefully placing her remaining spoons on top of her bag she figured she might have enough to get ready for bed later, but not enough to get any food.

Sighing she lay back and waited for the heat of the hot water bottle to help her muscles relax a little, for the pain levels to reduce a little from the high levels to something a little less screamy.

She knew she’d not be able to move for several hours.

Good thing I forced myself to the bathroom already or I’d be dying for a wee by now!

Resigning herself to the hours of pain ahead she smiled to herself.

An hour ago I was doing sword Tai Chi! What an achievement!

She grinned and adjusted the position of her legs. Then turned on the laptop to see how her fellow patients were doing that day. Her brain was not up to much at all, but at least she could say hi and check everyone was okay.

She settled in for the long haul. Distraction would help pass the recovery time. Then it would be time to physio’ again. That’s when she would decide what to do about not being able to get food. Maybe one of those vitamin powdered drinks, she could possibly mix that with milk before running out of spoons entirely and ending up in a mega-flare.

We’ll see. That’s later. This is now. And right now I’m chuffed that I learnt more in my physio’ class today.

***

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Spoons are more than cutlery to us ‘Spoonies’, they are our metaphorical spoons that help to describe our medically induced limitations to others. We try to make spoons last longer, try to get the most value out of each one that we can. We desperately wish we had more of them to be able to function a little more during each day and often send virtual spoons to each other in solidarity for our daily challenges. Sometimes we ‘borrow’ spoons from the next day, a kind of advance on spoons that we will severely pay for later in health repercussions.

The 'Ishishara Spoon' created for one of Jasper Fford's books

The ‘Ishishara Spoon’ created for one of Jasper Fford’s books

Picture source – no longer available but it was a challenge on Jasper Fford’s Facebook page to use various images. He was intrigued to find out what we might use them for!
You can still see this artwork on his webbie here though. 🙂

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 x

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love and strength,

x

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Additional links for medical staff:

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

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

Poem of the sunshine heart

I was doing something else on the laptop when some words started linking together in my head, so I opened up a blank page and this is what happened… 🙂

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Today my body doesn’t like me but I’m not surprised
There’s lows with this condition but I know there will be highs
I did too much yesterday and that was down to me
I went to class *and* hospital because I like Tai Chi

So today I will be resting lots with laptop and no frown
My ‘pacing’ will be well controlled to calm my system down
My ANS will slowly calm, my pain will be less shouty
It’s hard to work around this stuff, but I’m feeling mighty

We may be pushed to limits but we’ve found out who we are
The inner oomph is revving and it’s gonna take me far
I won’t quit, I won’t give up, life is to be lived
I’ll grab the opportunities so I don’t end up miffed

My old lady years are far away but I’m already creaky
I pace myself, manage pain, and basically be sneaky
I may be quite severely ill, but that’s not stopping me
I’ll live my life and love the world, be all that I can be

In every day there’s shiny things to make me laugh and smile
The smallest things are worth so much I always pause awhile
To grab that special moment, make it last, to make a note
A shaft of sunlight, cup of tea, a dancing lit dust mote

There’s more to life than who I was, than what I used to see
Life progresses and we grow, the beauty is all free

I started believing in myself,
.                                           opened mind and heart
And all the love was out there, waiting.
.                                                            The ‘end’ was but a start

x

Elle and the Auto Gnome, sunlight through autumn branches

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Joyful moments from 2013

Last January I posted about trialling a ‘Jar of Joy‘, here’s a snippet from that post…

“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 definitely found the Jar of Joy a very positive experience, so once I’d emptied the Jar (and saved the notes because so many positive memories is a very valuable asset 🙂 ) I set it back on the mantle ready for 2014. My first note was: “First Tai Chi lesson of the year”.. And yet here I am in July and I still haven’t written about 2013’s Joys and the whole Jar-of-Joy experience! *gasp*

Jar of Joy, end of 2013

Tipping out the contents of my Jar of Joy on New Years Eve, whilst wearing a ballgown at home 😉

So after collecting Joys to be remembered, how have I found the experience?

It certainly makes me focus on the positives in a more tangible way. I am naturally positive anyway, but I found that sometimes I would forget to physically note down good things and then I’d have a re-cap of the previous week or two and write down several good things in one go to catch up. If I didn’t have any that readily came to mind then I would think harder to find some. That’s all to the good because it shows that even those of us who are naturally positive can benefit from the process, so for my fellow patients who are currently in earlier stages and/or really bumpy times this could be incredibly useful. We can but give it a whirl and see. 🙂

So if you’re thinking of trying out the Jar of Joy and would ilke some ideas of the kinda things to include, here’s what I ended up noting down as Joys in 2013…

I looked through them all and grouped them by theme. I found that I have some main categories in the way I note down the good things I experience. They are… outings and friends, enjoyable physio’ classes, studying, health blog and arty stuff. Here’s the kind of things I have included from my 2013 adventure on these themes…

Outings and Friends: I tend to include eeeeeverything!

For anyone who has spent any length of time unable to get out much, having someone help you to go somewhere different means a massive amount. I’m not sure that others truly realise how much this means to me, but any of my friends recognising their inclusion here… now you know how much it means to me to see your wonderful selves, xxx

So this category included things like …

  • A couple of meals out and a picnic in the sun after a physio’ walk
  • Physio’ walks somewhere different: like going into town to photograph some of the sculptures on display there in the Summer, or a walk in a park next to a river, or hanging with a friend and their little ‘un in a park – each time I do something nice it gets written down and popped into the jar. The more I remember to do this the more Joys end up in the Jar and the more positive it is looking back over them. Like getting driven to one of Elder Niece’s swimming and lifesaving classes so that I could sit poolside and be a happily proud Aunty! 😀
  • There were some trips to the cinema (Mostly Superhero oriented, with some Star Trek and Hobbits thrown in for good measure)!
  • One concert (complete with disabled seating area and noise reduction ear-plugs)!
  • And even a camping trip (a massive yearly undertaking but made viable thanks to Magic Dude being such a Pro at looking after me these days)!
  • We even turn hospital visits into Joys by taking the wheelchair so that we can go somewhere afterwards if I’m up to it (I wheeled round some of the Natural History Museum in London for the first time in, oooohhh, about 28 years)!
  • There were a couple of weddings to gleefully attend and some seriously random things… I mean… recovering from errands in town and ending up getting to hold a 2012 Olympic torch in one hand and a 2012 Paralympic torch in the other hand… *that’s* random! And yes it went straight into The Jar, hehe
  • Randomly getting treated to a free lunch in a coffee shop because a local radio happened to be there paying for people’s lunches that day (it cost me a photo’ posing with Magic Dude and the two girls from the radio)!
  • Meeting Neil Gaiman for, oh, several seconds! Coz I went to his talk and booksigning in my wheelchair for my birthday event. He signed my copy of “The Ocean at the End of the Lane” and wrote “Happy Birthday” in it too. 😀
  • I eeeven managed to go out aaaall by myself one evening *gasp*, and as everyone drank booze around me, I sat happily drinking a tewwibwy Bwitish Cuppoftea! 😉

Friends, (but not outings)!: not every chat I have was noted down but things that stood out for me as particularly smiley were…

  • New Year’s Eve 2012-2013 when our Local friend came to visit and he, Magic Dude and I watched some “Big Bang Theory”, then “Despicable Me 2” and later all “cheers”ed each other at midnight.
  • Photo’s sent to me of two grinning friends in two different countries who I sent spoons to because they needed more (Spoonie ref’).
  • A conversation with 3 fellow CRPSers who have martial arts backgrounds, we were talking about adaptive programs for disabled as a result of my adaptive Kung Fu experience. Their knowledge and enthusiasm is fabulous.
  • Particularly surprise presents from friends and bruv which made me grin and laugh…things like standard kitchen teaspoons (Spoonie joke!), a battery-powered tabletop blue Dalek that says “Exterminate” whenever it bumps over anything, some cans of Simpsonesque “Duff” beer.. X-D And some especially heart-warming surprises… an unexpected DVD from a friend and a painting created especially for me by another friend. Another surprise was when Magic Dude got me Vol. 1 of a Serenity graphic novel. (“Oooh, Shiny!”)

My enjoyable physio’ classes: Tai Chi and adaptive Kung Fu.

It’s been an amazing year for Tai Chi, it’s been like a dream. If it could never happen again I would live in the joy of that year forever and a day! 😀

  • I had to give up physio’ at the gym owing to my Dysautonomia symptoms getting so out of hand, and yet I noted it as a Joy as I moved across to the martial arts school to focus on Tai Chi physio’s instead – the positive spin we put on events like this is super important for those of us living with chronic illness.
  • Even my first official pair of Tai Chi shoes got noted down and put into the Jar!
  • My first time performing a Tai Chi demonstration with my teacher (for a local Chinese New Year celebration) and my first time performing at the Oxford and London Tai Chi nationals at my beginner’s level.
  • I started learning Yang style sword Tai Chi, just a short 16 form, and even got my own practice sword.
  • I also noted my 2nd anniversary of learning Tai Chi with Joy. It is an achievement just doing it at all, it’s important to acknowledge the fact that our achievements are extra super for being done whilst working around the health stuff too.
  • I also started learning Kung Fu. It’s with the same adaptive teacher so I can learn it around the issues that my health conditions present. (Yes, she’s awesome, I know)! I earned my white sash and then my yellow sash, too. I am very proud and very happy.

Studying: I was completing a distance learning module during the first 3 months of 2013. It had been a really tough journey and I had lost my brain completely in any critical thinking at all for a solid three months at the end of 2012, so I had a large amount of work to do to get to the finish-line in time. So my Joys were..

  • The wonderful support and encouragement from friends, (especially my two research coders).
  • The fabulous number of fellow patients who chose to participate in my research study.
  • The day the 3 copies of my research dissertation went in the post.
  • The day I was told I had passed my MSc in Research.
  • The amazing number of requests from fellow patients who wanted to come along to my graduation. I couldn’t attend the graduation ceremony that Autumn, but my friends warmed my heart to be so supportive of me, xx
  • The success of my first ever conference presentation. It was about my CRPS research and even won me a prize (£15 in Amazon vouchers which I spent on a Firefly/Serenity tee-shirt. I’m sci-fi to the end, baby!)

Health Blog: That’d be this ‘un, here!

  • I was nominated for four WEGO Health Activist Awards
  • I posted my 100th blog post
  • Sylvie (my fellow CRPS-blogger in Belgium) and I contacted some fellow CRPS-bloggers and we all posted an international themed blog post on each of our blogs on the same day. That was pretty cool – the blogs were written in the UK x 2, USA x 4, Canada and Belgium 😀

By the way, I’d love to know more of my fellow bloggers on Facebook, so drop me a line in the blog’s Facebook page if you want to get in touch 🙂

Arty stuff: it is very rare that I can risk the physical indulgement but I love it.

  • A what-the-heck, sod the pain-inducing cold I’m gonna snow sculpt with the nieces. We made a snow lion with radishes for eyes and twigs for whiskers 😀
  • A second bout of craziness doing some snow sculpting with Magic Dude at the house. Mine were terrible and kept falling apart that day, but his was a kinda punk/octopus/chicken dude (!) and held together nicely!
  • A note also went in the jar for each of the pairs the personalised champagne glasses I painted for each of the two couples whose weddings we attended last year.
  • I totally forgot to write a note for starting to paint the back panel for a bench that will sit outside… so I’m gonna write the note retrospectively now! 😉

Three notes didn’t fit perfectly into any of the main themes: One was a note about wearing my ballgown whilst sat at home for New Year’s Eve, because I loooved getting to wear it! Another was a surprise note that I found on my car windscreen after a Tai Chi class – Magic Dude had been in the area and spotted the car so he left a gorgeous note for me. The other was the one and only note that related specifically to my health, it said:

“London trip (2 days re autonomic appointment)
went much better painwise thanks to the wheels”

– Nothing about the appointment, just that the wheelchair helped enormously. So really it’s about a tool to help me, not the appointment itself.

I had made a conscious decision not to include health stuff in the jar. After all a good appointment is not a joy, it’s just not a cack appointment for once! Or is it? Should I start including health-stuff? I’m not sure. The guide I use is.. would it make me smile if I re-read the notes when going through a tough time? If the answer is no then I won’t include it. And although the health positives are good at the time, I think that during difficult times of the year like christmas and new year I would not want to have my thoughts drawn to health stuff in any way, I would rather read about totally separate Joys. So I suspect that, unless it’s a cool physical achievement of some sort, health stuff will not be a part of my jar this year either.

So what do you reckon?

Is there anything else I should focus on?

Any events or circumstances I’ve been neglecting to write notes about?

So far in 2014 I’ve also been including that I’ve had some lovely conversations with friends who I originally met as fellow patients, sometimes on the phone, sometimes on Skype. I’ve also just realised as I write this that I’ve not included any gardening successes, or happy purchase of a new plant to grow, or seeds to germinate. The key to the Jar of Joy is that it helps us to spot more of the positives, even if we’re pretty positive to start off with and, as you can see, I’m already spotting the potential for even more Joys to get noted down for when I really need a boost when times get tough.

If I carry on like this… I’m gonna need a bigger Jar!

Joooooy! 😀

CRPS – Frequently Asked Questions

I help out as part of a multi-disciplinary admin’ team in a couple of online support groups. One of the groups has had such a fast increase in membership that we found ourselves trying to keep up answering recurring questions a lot of the time. As we admin’s are also working around our on CRPS, co-morbidities, flare-ups etc we found that the amount of repetition required was taking more time than we could manage to function in per day.

So, the plan was to create an FAQ with a list of themes with various links, snippets of information and so on, so that instead of repeating ourselves and posting loads of information every time the questions came up we could instead say “hey, that’s in our FAQ, feel free to go and have a look”. And it seems to be working well. Now a few lines to direct the questioner towards the FAQ enables us to share lots of information without compromising our own healthcare in the process. Organised, or what?! 😉

But that’s just within that one support group, and until my peers and I get the charity website up and running there’s nowhere else that our fellow patients from outside the group can access these links. Plus even if the file gets shared it’ll soon be out of date as new links are added all the time. So I’m going to add the FAQ here in the meantime. My fellow admin’s are working on other areas to add more info’ and links to what I’ve gathered here so far and I will make sure that it all ends up available online (the charity webbie is being created so we’re getting there slowly despite the health restrictions).

I’ve just uploaded the FAQ. It is not finished (with this condition is never will though of course as knowledge is always moving forwards) and it is a bit rough and ready at the moment, mostly still in raw links (some of which aren’t working as links at the mo’ so for those ones just highlight the website address, right mouse click ‘copy’, and then right mouse click into your browser address bar and right mouse click ‘paste’). I’ll pretty it up when I get to but as I have a long CRPS advocacy To-Do list at the mo’ I decided that prettifying can wait – it’s more important to get this info’ out there and available.

Here’s the new page:

CRPS Frequently Asked Questions (FAQ)

As always, any suggestions for additions, feedback etc is always appreciated. This is to help our fellow patients so I always welcome input.

Much love from me, x

Sparkling determinedly for the New Year

Why hello there! Fancy meeting you this New Year’s Eve, come in, come in. And please excuse the sparkles! 😉

Christmas with Magic Dude’s folks was lovely. Okay,yes it’s true that I sat with my trusty hot water bottle most of the time, with my feet up on the footstool. And yep, it’s also true that I drank more fluids in one day than I can comprehend (pretty much equivalent to putting me on a rooibos tea drip)! And I admit that I tended to nod and pretend I understood what people were saying when I had no clue coz the multiple conversations had taken it’s toll and squashed any remaining ability to process information (unless someone said “Tea?” then the answer was easy)! And of course I thought of my missing family, but the choices of others are the choices of others. We need to hold onto who we are despite the losses and misunderstandings.

Part of who I am is the girl who always dressed up at christmas because, well, why not? I didn’t get to any other time and it felt nice to dress up. And this year I decided to have a giggle trying to make my fingernails look a bit festive. I was going for christmas trees and a snowman…

2013 Xmas nails 1

Yes, I do also paint the skin around my fingernails! It’s just easier that way!

2013 Xmas nails 2

Some bits of masking tape to leave a triangular shape to create the christmas three shape..

Christmas tree shapes, snowman shape with white nail varnish freehand (just blobbed two circular shapes!)...

Christmas tree shapes, snowman shape with white nail varnish freehand (just blobbed two circular shapes!)…

2013 Xmas nails 4

Ta-daaaaah!

Of course that was my left hand… painted by my dominant right hand.

How do you think the snowman turned out when I had to paint the other one with my useless left hand? 😉

Like this…

2013 Xmas nails 5

Haahahahaaa! It was looking kinda good up until that point, eh?!

(S’cuse the chip, I forgot to take a piccy of the comedy snowman til after christmas)!

I tried to paint on some eyes and buttons but I just got big blobs of paint everywhere, then I tried to wipe them off and… well… snowman-in-the-fog anyone?! Or Magic Dude said it might be a vomiting-snowman? Feel free to add whatever twist you feels fits the, er, artwork! 😉

So, here I am on New Year’s Eve and I’m gonna keep it simple tonight – sparkles will do the trick.

Of course I can’t go anywhere tonight, so I’ll be sat on my sofa with Magic Dude and our Local Friend. Am I ready? I’m so exhausted, and fainty, and nauseated, and… Bah! I’m gonna do New Years Eve from my sofa and it’s gonna be sparkly despite all that.

Checklist:

– One ballgown (yes, ballgown. <pulls a determined face> ! )
– Sparkly nails that don’t exactly go with the dress because I’m such a rebel!
– Christmassy headgear
– Party hats on standby
– Non-alcoholic mulled apple juice for me
– Warm fluffy blanket
– Hot Water Bottle
– Random christmas nibbles
– DVDs to choose from already by the telly

Sorted!

So let’s have a moment in our own homes where we pat ourselves on the back for getting through last year, for smiling and laughing despite the downsides, for making friends online who understand, for finding the ‘me’ in each of us that the health stuff never reaches. You are beautiful. You are strong. And even if your nails aren’t sparkly tonight, your soul certainly is. Sparkle my friends, I will be thinking of you all tonight and wishing you well.

Much love from me to each and every one of you,

x

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