Tuesday, February 19, 2013

RSD Interview #34 - With Paul RSD CRPS


HOW AND WHEN DID YOU GET RSD?
I had a boating accident in 1997. I severed my Achilles Tendon in my left leg, damaged my two knees, fractured three ribs, and damaged my shoulders and both arms. After having my left leg plastered in the wrong position, then having it put in the right position, and having the plaster changed seven times over a period of fifteen weeks (with all of this happening at three different hospitals), all of the trauma caused RSD, which later spread.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
Being an ex-Army man and very much into outdoor activities, it affected my life a great deal in the first couple of years, as I was in a wheelchair and found coming to terms with it very hard. Out of sheer determination, I got myself out of the wheelchair and onto arm crutches. I was slowly coming to terms with having RSD and was enjoying things more. That was until I fell over while using my crutches. Unfortunately, I damaged my shoulder and had an operation. A few months later, while sitting at my computer, I leaned too far to get something and fell again. I naturally put out my hand to stop my fall, only to damage my other shoulder. I then went into the hospital again to have another operation on my left shoulder. This time things did not go well. After the operation, I was in chronic pain, which lasted for months. So later I had to have another operation on the same shoulder. Unfortunately, it did not work out and I was told RSD was now in both shoulders. I was absolutely devastated. But, being a very positive person, I was determined to get on with my life and my love of the great outdoors. It is a hard struggle sometimes but I can do things now, albeit at a slower pace.

DO YOU HAVE A GOOD SUPPORT SYSTEM?
Yes. I have a very understanding wife, who is also my Carer, and a few family members who half understand my condition. I have a very good GP who, over the years, has become like a family friend. Anything I need medically, or otherwise helpful, my doctor will get it sorted, if she too thinks it will be beneficial to me.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
I do not go to church, but I do have a strong faith and have said my prayers every night since I was 14 years old. I always believe there is someone worse off than myself.

HOW HAVE YOU RE-INVENTED YOURSELF?
I have never re-invented myself. I have come to terms with living with RSD, and the things it throws at us.

HAS ANYTHING GOOD COME FROM THIS TRIAL?
It opened up new hobbies. Also, it gave me a lot of time to think, and how best to adapt and get the most out of life while, at the same time, living with RSD. It also spurred me on to help spread the word, and try and help anyone who was in the same position by starting an RSD support group called rsdcrpssociety.

WHAT THINGS DO YOU MISS THE MOST?
In the first years, I missed my job, I missed my fitness and I realized how we take our health for granted. I missed life as I saw it then. I was very angry and depressed. Now I see it, that I do not miss things. I can do most things, but in a slower, and different way. I have learned to adapt and to get on with whatever life throws at me.

WHAT DO YOU WANT THE GENERAL PUBLIC TO
KNOW ABOUT YOU AND/OR YOUR DISEASE?
Life does not stop when you are diagnosed with RSD\CRPS. Life is what you make it, no matter what disease you have. Do not ever give in to your disease. Fight it every day. Set your goals and aim for them. Be positive in every way you can. Try to help spread the word about this chronic disease. Do not let RSD\CRPS rule your life. Show the public, your family and friends that you do have a life, and that you are living it the best way you can.

*THESE ARE GENERAL QUESTIONS. IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.


LIVING WITH YOUR DISEASE OVER THE YEARS?

Not everyone, thank God, will progressively get worse over many years. Unfortunately, my disease progressed. I had five mini strokes which were mainly caused by the RSD, plus spreads that were caused by having other operations, and the medical team not having enough knowledge about RSD\CRPS. Your quality of life is definitely in their hands when any procedures are carried out. And that is why it is of utmost importance that the medical team know about your illness, so that they take every precaution when carrying out any operations, no matter how big or small. Be aware, and make sure that they are aware, too.
Remember, no matter how bad things get, or how you may be feeling on that day/week, that you have plenty of other days, weeks ,months and years to enjoy your life. And, hopefully, you will find day to day things easier to overcome.
REMEMBER: “POSITIVE THINKING"

If you need any further help, advice, or support, please take a look at the links below:

http://rsdcrpssociety.com
https://www.facebook.com/groups/494693863885243/

Kind regards,
Paul

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