CRPS Awareness photo challenge: time

Photo challenge: The biggest roadblock in my life other than pain.

Time.

Suzy's photo challenge, 2015, day 16

 

 

I have limited activity per day re pain management.

I have limited activity, functionality, independence per day re the worst of the Dysautonomia symptoms.

I have limited ability to think, process and get brain stuff done because when I use my brain I can only do so for a while. Then it falls over and stops functioning and I’m blooming useless until it recoups. How long that takes depends on multiple variables.

With pain management and brain time it is the unexpected opposite… use it and I lose it. Every time. Though there’s no guarantee that I’ll have any type of functionality at any given time either .

So time when I’m able to think and do is so precious because of its rarity and fleetingness.

x

Advertisements

CRPS Awareness photo challenge: flames and ice

Today’s photo challenge is to post something which includes flames, as they are often used to symbolise the burning pain experienced in CRPS. As I created the firey flaming CRPS awareness ribbon the other day I have put together another couple of info’ posters using that but I have made a point of adding in something else so that more of us CRPSers feel represented.

Many of us experience a different kind of burning. An icy burning. Sometimes it occurs as part of the CRPS doing it’s thing in our affected areas and sometimes it is triggered by an external source (for example I have to wear gloves to get anything out of the freezer coz it burns so much). (Wow, that’s not a good font to write about burning in, it looks like it says ‘bums’, oh dear)!

Of course there’s not really a ‘one or the other’ scenario. Despite recent research rumblings about ‘hot’ or ‘cold’ CRPS as either potential subtypes or as a way of referring to acute and chronic CRPS, many of us experience both the hot and cold burning. So for a large percentage of CRPSers the hot and cold representations are a truer representation of our personal experience with the condition.

Anyway, I have created two more info posters using exactly the same info’ but with an additional cold theme. One with an iceberg, and one with a background pattern of the icy frost that forms on glass. Here’s hoping you like them.

 

Firey ribbon, iceberg, graded background, info poster

 

Flaming ribbon on iced glass info poster

 

I’ll add them to the Fbk blog page as well so that if you feel they are useful to share they are at least easily accessible.

Much love from me,

x

CRPS Awareness photo challenge: my firey flaming CRPS ribbon

Day 25: to design something with the awareness ribbon on it.

I already created something simple earlier this month (which I haven’t got round to posting yet because I was running behind on the challenges) so I got stuck into the challenge this time creating a CRPS orange ribbon from a pic of fire as fire is often used as a symbol of the CRPS burning pain. Although there is also the icy burning pain as well as the deep bone pain and more, but the flames are a recognisable shorthand symbol in the community of CRPSers and their carers.

I’m uncharacteristically proud of my flaming ribbon creation! X-) It turned out better than I thought it might. So I went on to cteate this shareable poster from it. Hope ya like it. 🙂

Flaming ribbon info poster- photoshop saved

Whaddya think? Will it do?

I really enjoyed creating this. 🙂

x

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

CRPS Awareness photo challenge: regained

Suzy's photo challenge, 2015, day 11

Something I never thought I’d do again.

A bit tricky for me as if I find I can’t do something any more I don’t think “that’s it, I’ll never do that again”, – I accept that I can’t do that for now but I don’t write everything off entirely. That would be a very defeatist approach which I avoid because that’s enough to make anyone prone to depression. Besides, this neuro condition is all about change. Some changes can be positive. So there’s nothing important that I’ve written off that it turns out I can now do again during physio time. Except for… grating cheese and rolling pastry!

Heh!

The important things that I had to accept as written off are few but sadly they still stand.

But at least I can grate cheese again, right?!

x

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-)

CRPS Awareness photo challenge: a pain aid

ScreenShot00170

(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

 

 

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

.

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

.

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