CRPS Awareness photo challenge: happy

Something that makes me happy even though I’m in pain: nature aka The Great Outdoors.

Suzy's photo challenge, 2015, day 4

 

Also, cute babies and smiling dogs feature on the list as well! X-)

Inspiring addition

I was window-shopping online during a time of brainlessness and I spotted a cushion cover which made me feel inspired.

We are often told we “can’t” do things and we soo often feel that we “can’t”, especially as we have a tendency to compare our abilities with that of our former selves. Change over time happens to everyone and we are being rather unfair on ourselves by comparing the me-now with the me-in-the-past, and extra unfair by focusing on what we can do instead of who we are. Change happens to everyone in various ways. And yes our health changes can be pretty massive, but the way forward is helped enormously by the way we view things. Our reality involves our perception of it. And perception plays an extra big part for us when it comes to coping skills and finding the positives.

Being able to turn those “can’t”s around into “can”s is a truly fabulous feeling. And feeling inspired is often such a floaty-light moment of gloriousness where we rediscover our smile, our hope, our confidence, our determination. It is not to be underestimated or neglected.

So I bought that cushion cover for myself. Every time I looked at it online I felt inspired so bringing that inspiration into my home where I could see it every day seemed eminently sensible!

It arrived yesterday, having travelled all the way from Australia, thanks to a shop on eBay…

Inspirational cushion cover

And the monkey was a pressie from, and created by, one of my friends from school so he makes me smile too. He and the cushion are a pretty good pairing!
(Thank you Jaime, he’s been enjoying sitting on the chair by the window in the front room). 🙂

What inspires you?

Is there something you could move to a more prominent position so that you feel lifted when you most need it?

x

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! 😀

Photo Challenge for CRPS Awareness, Day 30

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

Day 30 – A picture of you waving

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Helloooo…..

me waving from the tent, distant view

Oh wait, let me zoom in a bit…..

….

Hellooooo….

me waving from the tent

x

Photo Challenge for CRPS Awareness, Day 29

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

Day 29 – A picture that can always make you smile

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Pictures that make me smile… ooohhh, lots of piccies make me smile. PIccies of Magic Dude, of my friends, of my Bruv and his girlfriend, of Magic Dude’s family.. they all make me smile. 😀 Even the pictures of those who I have lost from my life make me smile at the happy memories from before the health took it’s toll that way.

I also create piccies that make me smile. I don’t mean beautiful photography… my wheelchair based ways of point-and-click-then-crop-it-later are really ingrained still! I often take silly pic’s, usually for the blog, including some not yet posted. They make me smile when they’re being taken more than afterwards mind you. There’s something about posing for some bizarre pic’ outside in full view of my neighbours which make me chuckle, tee hee.

Today I spent my physio’ time attending a practical seminar on Tai Chi with sword. I’ve never done any sword work before so I’m a total newbie at it. The uncontrollable variable seems to have been the arrival of the swords at martial arts HQ…. they didn’t arrive in time. So our teacher valiantly taught us with what we had to hand in the gym – some short poles. Rather than borrow one of the poles to practice with in the meantime I realised that it would be better to practice with something longer. There are moves where the sword touches the back of the arm and/or shoulder, plus the different lengths feel different to work with. So I looked in the footwell of the passenger side of the car and there was my inspiration….. my fold-up walking stick! Hehe

So here’s my latest silly pic’, it made me smile when it was taken and maybe it’ll pass a smile onto to you as well. 😉

Tai Chi Walking Stick

Please imagine that my non-sword elbow is actually at the same height as my non-sword shoulder! (- I always notice the wrong stuff when I look at piccies of my Tai Chi). But hey, I guess I am a sword newbie…. plenty of time to brush up on technique yet! 🙂

So there you have it, Walking Stick Tai Chi. Maybe this is my new Yoda style?! 😉

x

Photo Challenge for CRPS Awareness, Day 23

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

Day 23 – A picture of awareness/creativity

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Creativity is a great way to focus my mind away from pain and other symptoms. Awareness is both a different ball-game and the same ball-game depending on how I look at it…

Awareness of the joy in creativity, and of it’s use as both a distraction tool and as an uplifting tool is great. But the bigger awareness of who we are, and how we are still ourselves despite the changes in our lives, well that’s the shiny. 😀  As I said in a recent post, I decided to be as me as I want to be. Yeah so I’m chronically ill and I can’t do the stuff I used to do, but that makes me no less me. That was about what I did, this is about who I am – I can still be in the world, live my life, love all of the amazing people I have met in the world and online, share thoughts, share laughter, I can still be creative even though I can no longer do pottery, and even though painting is such a mega pain fest to do too often. I can be creative in my head, in silly conversations, on the laptop when I’m up to it, and even the occasional silly sketch for the blog.

Yep. My awareness that floats me onwards through life is that I have my world, my life, my skills, my love… all that I choose to do and all that I choose to be is in my hands. And although what I can do is restricted, that’s okay. It doesn’t stop me from finding ways to express my ‘me’. It doesn’t stop me from being who I am.

So here’s a pic’ that was taken during a Tai Chi-ish moment in the British Natural History Museum in London. For me it was a creative moment, but it also says so much more to my heart.

Tai Chi holding planet earth, the world

Being true to myself is about who I am on the inside, what I think about, what I feel, how I express myself, who I share my thoughts with, how I still try to be there for others. The question of whether I can still milk a cow, or do an accidental wheelie in a little Massey Ferguson tractor, or do a cartwheel down a quiet aisle in a supermarket is nothing to do with who I actually am. I did that stuff, they are expressions of who I am, and the memories make me smile, cool eh? Now, onwards… I’m creating new memories to add to the old… tea with a beloved friend, a silly conversation, a physio’ class I enjoy, some handy research shared with fellow patients that helped somebody out, a silly pic taken at the Natural History Museum the day before seeing a consultant….

My own personal world is in my hands, and it shines 😀

x

Photo Challenge for CRPS Awareness, Day 20

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

Day 20 – A picture of somewhere you’d love to travel

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Travelling is really difficult these days. Everything has to be planned to the extreme. Higher pain levels will ensue, it’s just the way it is. When I travel I cannot have the usual comfortable seating / sofas / bed, hot water bottles, warm blankets etc that are crucial to keeping my pain below the ‘screamy’ level. So I don’t travel much.

When I go anywhere that isn’t local, it’s as a passenger in a car with hot water bottle and blanket, as well as multiple rest stops along the way. Knowing that travelling beyond my locality means that I will be in greater pain for several weeks afterwards is tough to face up to every time I do it.

If I go anywhere it tends to be just Magic Dude and I, or we make sure that it’s just us by the time we get to the evening so that we can focus on trying to limit the increasing pain levels.

But I do travel from time to time because life is to be lived. I just try to time these events so that I have several weeks afterwards without any other events or appointments to give me time to recover. And if I don’t do that I pay for it with even more pain (I’m still trying to recover from attending several appointments in April).

If I wasn’t so ill I’d like to travel to see my friends.

Not only have I got wonderful friends who I’ve met on my journey through life, I have also met some wonderful fellow patients who are dotted throughout the UK and even internationally. A few of us have got together for group international chats in Skype and we all have lots of contact with each other online. This has resulted in some of the most amazingly strong bonded and heartfelt friendships. I would love for my 3D mates to meet my internet mates, you’d all love each other so much 😀  (There’s a common denominator in my beloved friends… big hearts and a love of grins).

One of my internet besties cannot travel by plane. At aaaaall. So several of us were trying to work out if we could one day get to her house to meet up together. Imagine that! Several of us in the same place at the same time! Imagine the pride of place that group photo’ would take in each of our homes. 😀 (The photo’ would have to be timed between our most grimacey moments, of course! 😉 )

As I haven’t been there… I have no piccy to show you. So… in typical me style I’ve created a daft clip-art creation, an imagined kiddy-style drawing, hehe….

My friend's house!

My friend is the happy witch in the pic’ coz she knows so much about natural remedies for all sorts of things, and creating a big pot of love seemed a pretty good metaphor for how much we all love her just for her being herself. If she was really in witchy fancy-dress, though, she’d be wearing a much fancier witches hat! 😉

Tee hee, this pic’ is such a bizarre thing to be posting on my blog! But there you go, I wanna see my fwiends.

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

x

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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