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The sad story of a young sufferer of CRPS

I came across this news story today on my Facebook.  I watched the video and read the news article (click this link) and I am not ashamed to say I cried all the way through.   Continue reading

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BBC Broadcast on CRPS 

 

 

Click this link to listen to the broadcast – BBC – Inside Health
Listen from 14:33

Great to see the BBC raising awareness of the rare condition I have. I am totally shocked at the figure stated for those who heal in the first 6 to 12 months, only because that leaves me in the 15 percent that suffer lifelong with this condition. I often wonder if a quicker diagnosis and specialist physiotherapy would have put me in the 85 percent who heal completely in the first year. We will never know.   Continue reading

Sobbing and realising why – grief for the life I once had

I wanted to share this interesting blog post http://www.crps247.com/grief–identity.html which I found when researching grief and CRPS after feeling extremely overwhelmed about the loss of a life once lived before disability.  

This evening I sat sobbing my heart out into the dogs fur over how I loved jumping in the car and heading to the beach at Brown’s Bay, paddling in the water, and throwing the ball for the dog.  Remembering the day I was in the water well over my backside down at Port Road beach trying to recover the dog’s ball because she wouldn’t!  The laughs and fun times I had with my pooch when I could still live my life like most other people; a life where I could go to work and still have energy to take the dog out even after twelve hours stood on my feet!
Most of the time I can manage the feelings that come from thinking of a life that I should be having, however every once in a while grief takes over and I mourn for the loss of the life I had before CRPS struck.  Tonight was one of those times. 

There are five stages of grief (denial, anger, bargaining, depression and acceptance) and these stages apply to the death of a loved one, the loss of a relationship, and in my case the loss of the life I once had, and the loss of the life I perceived I would have.  A loss caused by an unfortunate accident that should have healed with no problems.  Who would have guessed a dislocation and fracture would lead to a life with unending pain caused by Complex Regional Pain Syndrome.  

I mainly live in the stage of acceptance, however like most other people that grieve there are times of the year when the other stages of grief come into play such as when I am unable to do something because of my disability then the anger stage comes out until I start resolving the issue in an alternate way then I am in the bargaining stage of “what if I try it this way”.  This doesn’t always work and I end up back at the anger stage or I find peace and go straight to the acceptance stage. Then there are the times of the year that bring about the depression stage.  One particular time of the year for me is September – this is the month in which the anniversary of my accident falls.  It was inevitable that I would eventually end up sobbing at some point during this month and tonight was that night, exactly a week away from the eighth anniversary of the accident that changed my life forever.

It’s okay to cry though.  It is an outlet for all the emotions that build up when you grieve.  It’s a natural process that will ease as time passes, and a process that will also creep up on you unexpectedly causing you to cry into the dog’s fur, like what happened to me this evening.  The point to remember though is that it is just another stage of the perpetual cycle of grief and it will pass.  Tomorrow I may be in denial, or I could end up being angry, or bargaining again, however I do know that I will settle back into the acceptance stage like I do every year and move on with my life, to strive to achieve great things even if they look very minor to other people. 

I accept that it is perfectly normal, and perfectly fine, to pass through these stages and it is perfectly okay to allow them to be a part of my life. 

Reflection on a whole year of blogging

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WordPress Happy Anniversary Badge

It has now been a whole year since I began blogging.  In fact just over a year. Where has that year gone?  Time certainly flies as you get older! Continue reading

Do not disturb I am floating today – I wish!

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Have you ever tried flotation therapy?  I did for the first time about five or six weeks ago.  I was very apprehensive about going, I am not good at trying things new especially when I have little knowledge of what to expect. Continue reading

Day 7 CRPS Awareness – Meeting others on a similar journey

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Logo of Burning Nights CRPS Support. Click on logo to be redirected to their website

Online support from, and to others going through a similar journey is very valuable.  To meet some of those incredible people in person absolutely invaluable!  I had the pleasure of doing just that today thanks to the dedication and passion of a truly special lady, Victoria Abbott-Fleming, founder of Burning Nights CRPS Support. You can read Victoria’s story by clicking here.

I didn’t know what to expect when I left my parent’s home this morning. What I found was a great deal of enlightenment from professionals who spoke about their relevant fields of expertise and so much more from the carers and sufferers who bravely spoke about their own individual journeys of life with CRPS. I came away with knowledge, lots of personal stories, and most importantly a new support network, all of which will no doubt help me come to some difficult decisions in the future. Continue reading

Day 6 CRPS Awareness – The reality of life with CRPS after diagnosis

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Just like this poster by RSD/CRPS Angels – Kimberly my life was over, gone, shattered when I was diagnosed.  I lost friends, became isolated.  I fought back for a while almost like a non believer.  It can’t be happening to me.  The diagnosis is wrong!  Then I spiraled into the depths of despair.  This can’t be it.  This is my lot.  How do I live life with this pain?  I am useless.  I am hopeless.  I have no self worth.  Why would anyone want to spend five minutes with me.  My confidence was shot.  With a lot of assistance from my pain consultant and through a pain management programme I found I was still me, I had not gone anywhere.  I was not my pain.  I was not the despair I suffered.  Inside was still the woman I was before the 9th September 2008, I just had to learn to live life a little differently.  It takes a long time to process all this, it took me three years or more before I found the confidence to make a new life around CRPS.  A new life around the crutches and the wheelchair.  A new life around the pain and fatigue.  I am proud to say I did it, or should I say doing it, as even now I am making constant little adjustments.  It is not an easy ride, there are days I cry in despair.  There are days I hide the tears behind my smile.  There are days I can’t get out of bed or off the sofa.  There are also days of wonderment.  Lots of days where I have a great sense of achievement.  And days of appreciation and reflection.  This is exactly what I meant by yesterday’s post and the phoenix – I am constantly rising from the ashes of the effects of CRPS on my body.  This is all just a part of my new life.  The old me is still in there, I have just learnt to walk a different path!