Photo Challenge for CRPS Awareness, Day 21

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

Day 21 – A picture of something you wish you could forget


The good memories will always be cherished in my heart, but the pain of loss is with me every single day without exception. Not that I dwell on the pain of loss, in fact I focus on the positive every single day. Over time I have improved my ways of coping with grief and confusion. But it takes time. And it never truly leaves us. We learn to live with the grief, around the grief, despite the grief. But a loss is a part of who we are as much as a joy is. It can help us to become stronger, wiser, more empathetic. It can help us to learn the hard lesson of letting something go even without really understanding what happened. To have to move forwards with no closure. To find a way. Our own way. To revisit who we are because no matter what others may incorrectly think of us it doesn’t change who we actually are. It can hurt us, spin round and round in our heads driving ourselves nuts trying to figure out what happened, but what someone else thinks does not change the reality of what we stand for, what we believe in, who we actually are. In fact it gives us the opportunity to be even more ourselves, in a way; at least that’s what helped to get me through… The process of looking at who I am made me realise that whatever I do, whoever I am, others can still see me totally differently. They can still get me wrong. And if that is the case then why be for others if they’re not going to see who I really am anyway?

So I decided to be as me as I wanted to be….

I set up the weblog to help fellow patients, I started the CRPS research to try to help through that route too. I also started learning Tai Chi for my own physio’ and my own personal enjoyment of learning it, too. I am more openly me than I have ever been before. And all things, good and bad, led me to this. I like being me, I like myself as a person, and I am proud that my morals are so solid to the core of my being. Whatever others think about me, even strangely wrong stuff (easily done when I’m in a neuro’ meltdown after all!) I am glad to be the me that I know I am and I want this life to be worth something. To make some kind of a difference simply for it’s own sake. To be useful to others during my life. When I am old I want to know I was true to myself, that I loved and helped others, and I want to feel as calmly content in my heart as this makes me feel now. But the grief will ever be there. When I first wake in the morning, when I am alone making a cup of tea in the kitchen, and more keenly on special occasions.

But despite the loss, I at least feel less distress these days. I feel sadness every day, but I am coming to accept the lack of understanding. Sometimes that’s just the way it is. But when people who love you end up thinking wrongly of you, it hurts them as well as you, and I just wish I could reassure them that it’s okay. That I’m not the person they thought I’d become, that I’m still me, and that I still love them as much as ever. I’d like to take away the pain they must feel so that they don’t have to feel it. To be able to explain the CRPS neuro’ stuff that scuppered my processing and comprehension, and how the level of brain ability varies with my emotional state.

I felt such pain that no words can describe it. I imploded utterly, I’ve never been so broken or so full of questions that I’d have no answers to. Did they implode, too? Did it hurt this badly for them, too? I wish I could forget the pain, and I wish they could, too. There was no need for it, no basis, just mucked up neuro’ disease and mis-matched contexts.

I didn’t know what picture to use for today’s CRPS awareness challenge, so I clip-arted one into existence. This is a vague representation of the vortex I found myself in.

Pain of confusing loss, broken heart


Photo Challenge for CRPS Awareness, Day 19

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

Day 19 – A picture of you and your family


Like many CRPSer’s families, mine is a bit sparse these days. 😦

Various problems occur within families with this condition such as…

– disbelief about pain levels (the ‘not real’ error)

– disbelief about the genuine body function requirement for painkillers (the addict error)

– a health picture that is just way too big to comprehend

– a health picture which changes over time as we find out more about it (the changes in our own understanding can make our condition seem less reliably real to others sometimes)

– just too severe for close ones to cope with (seeing a loved one in pain can make some people distance themselves)

– or, as in my case, neurological deterioration is noticed but not known to be a serious part of the whole at the time. Misunderstandings are pretty much a dead cert’ when the CRPS neuro-psych’ deficits are in the mix. (a two way ‘what the…?’ confusion which is tough to resolve when memory and processing are compromised). (I wrote a bit about experiencing cognitive changes here).

These are just a few examples of how patients lose their loved ones when they need them most. It’s also why we are so grateful for our fellow patients around the world – they understand the condition and are there for us when many others just cannot be.

I was initially shocked at how many people had also lost family members, but I have come across this so often now through talking with fellow patients that I now sadly see it as a common part of living with the condition. Those who stick with us, or at least keep in contact, are a rare breed. So, if you’re a family member of a patient, please know that you are a rarity and that no words can truly suffice to describe how much you mean to your loved one with CRPS. In short, you totally rock, and on their behalf I truly and hugely thank-you from the bottom of my heart, xoxox

My Family

And to those fellow patients who breathed a sigh of almost-relief whilst thinking “phew, it’s not just me”, yes – you are not alone my lovelies, and it is okay to talk about it.

This kind of thing can all too easily become a taboo subject, especially when us patients don’t really know what happened anyway because it’s really tricky to talk about something when we don’t really know what happened ourselves. But I don’t want to you feel alone, and I don’t want you to have no-one to talk to about it. A subject is only taboo for as long as we allow it to be, and allowing it to be can get in the way of healing. Today’s challenge was so specific I have found myself breaking that taboo. I hope it may help some of my fellow patients out there that I have done so, xox


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