HOW AND WHEN DID YOU GET CRPS
It was a beautiful, warm, sunny day on the 25th of June 2005. Hubby had been called into work so I rang my friend to see if she would like to come over for a coffee. Instead, she invited me over to barbeque. “Great”, I said, “will see you at 1:00“.
After a lovely afternoon, I said my goodbyes and got into my car for the short 5k journey home. On the way, I stopped at a small one stop shop, as I was thirsty and thought I would get myself a can of Coca Cola. I was on crutches, and have been for 20 years, due to Osteoarthritis in my lower back and right hip. I parked right outside the shop and got out of the car with my crutches. As I walked toward the shop, the automatic doors opened and the next thing I knew I was in the hospital. Thank God the incident was witnessed by the person who rang the ambulance and saw what happened; my crutch had got caught up in a plastic loop that was laying on the floor by the rubbish bin. (These plastic loops are used for bundles of newspapers that are delivered to the shop; the loop had not been cut.) I was told that I just went down in a heap, banging my head on a metal rail as I went down, knocking myself out.When I came round, I was in the x-ray room. I was told I was concussed, had a fractured left knee, and a broken right wrist and elbow. After a three day stay in the hospital, I was sent home in a wheelchair, as I was now rendered useless to walk.
Oh my gosh, I thought!! My daughter was getting married in four weeks time. How on earth was I going to go looking like this? The wedding was going to be in Mexico. There were twenty of us booked to fly from the UK, including my daughter and her new husband-to-be. I was determined to be out of the wheelchair in time for the wedding. There was no way I was going to miss the wedding and an all inclusive holiday in Mexico. The hospital was really good when I explained the situation. Two days before we flew, they x-rayed my arm and leg and said it was safe to remove the plaster off my arm and leg, which they replaced with soft but tight tubi-grip. Even though I was still in a wheelchair, I went to Mexico and saw my beautiful daughter get married. I even managed to stand, with the help of my hubby and friend, to have photos taken. Not only was I proud of my daughter that day but, also, of myself.
After getting back home, I realized something wasn't right. My arm was on fire and had searing pains shooting through it. My leg had turned a funny color and was swelling. A few days would go by and my leg would go down, leaving purple-looking thread veins. I was worried, but I thought it would get better and go away. I was too worried to go to the doctor about my leg, as I had lost my mum to Bone Cancer just four months earlier. I nursed her in her home for three months and was missing my own family dreadfully, as my mum lived 120k away. I had to watch some dreadful things while nursing her. One of them was when I noticed her leg turning black from the foot up, then seeing her go through the painful process of having to have her leg amputated. She died a week later, on Christmas Eve. With all that stuck in my mind, I was worried I had the same thing happening to me and was too frightened to say anything to my family or friends, So, for two years, I did nothing about my leg (even though I went to my doctor and complained about my arm, but was just given good old Paracetamol).
One day, my leg was so painful and swollen it had turned dark blue right up to my knee, and with the same searing pain as my arm. I showed my hubby and he took me to the doctors straight away, as he was so worried when I showed him. On examination, I was given a Heparin injection in the tummy and was told I could have a blood clot. The next thing I knew, I was in the hospital having an ultra-sound. Needless to say, I was thinking of my mum and that I was going to have to go through the same thing as her. There were no words to describe what I was feeling at the time. All I could do was pray to God, and he must of heard me (as no blood clot was found).
After that, I went back to my doctor and told him what I had been going through for the last two years with my leg, and why I was too frightened to mention it before. And that’s where my next nightmare began. For five years, I went through the wrong medications, had the wrong Physio, and saw seven different surgeons. Every three months for those five years, I was treated for Bursitis of the knee, so I was having painful Cortisone injections into the kneecap. I was made to see four different Psychiatrists, had numerous MRI scans, CAT scans, X-rays, Blood tests, Electrotherapy, Ultrasounds and Hydrotherapy…the list goes on. I also had two falls, both while going up the stairs, where my bad knee locked and I broke my arm again on both occasions; once in 2008 then again in 2010. It was my right arm both times. And, to top it off, in June of 2011, I slipped getting into the bath, resulting in a broken nose.
In April of 2012, I had a new doctor who thought I could have something other than what I was being treated for, and I was sent to see a specialist who deals only in CRPS/RSD. Two weeks later, after seeing him, I received a letter. Finally, I had a face to the name of what I actually had. After all the pain, stress, anxiety, and not knowing, I was not mad that it said I had CRPS TYPE 11. “IT” had a name. The relief of knowing what I had wrong with me was like having a huge weight being lifted off my shoulders. But, then, to be told there is no cure (and the thought that I have a lifetime of this) has only made me a stronger person.
I thought I was alone with this disease, as no-one understood it when I said I have CRPS. My friends, family and neighbors were used to seeing me on crutches, so this added disease meant nothing to them. They can't see what’s going on in your body. They can't feel the pain that you have to endure, day in and day out. They don't see the sleepless nights, the sweats, or the agony you are going through. In the end, you get fed up of trying to explain it when someone asks how you are, ‘cause you know by the look on their faces that they haven't got a clue what you are going through. So the simplest thing I used to say is "I'm fine" (and the stupid thing is they believed it).
A few months ago, I was looking at Facebook and, out of curiosity, I punched in RSD/CRPS and came across a site called rsdcrpssociety and I joined the group. Then I was asked by Paul (who started the group) if I would become an administrator and I accepted straight away. Since joining, I realize I am not alone with this crippling disease. There are millions of us out there and we all need help, support, answers, or even a listening ear (someone who understands what we/they are going through). All our stories are different but they all seem to have the same end result… RSD/CRPS.
We still need more members to help other RSD/CPRS-ers in pain and to help us raise awareness of our disease. We would love for anyone who reads this to come and join us at
http://www.facebook.com/#!/groups/494693863885243/ .
I no longer say I'M FINE, when asked. I now understand how to make the person who asks stand and listen to what RSD/CRPS is and to realize that this disease is not new, that it has been around for a long time and that doctors, governments and society (as a whole) need educating to put this disease on the map. I will never accept that my pain is all in my mind (as was suggested in the past), that my leg and arm turning purple and swelling with ulcers and burning like an inferno inside is a figment of my imagination. Nor will I ever accept that this disease is a mental disorder. Because of the times that I have doctor or hospital appointments and they can’t see the symptoms because the swelling has gone down (typical) or my flare has subsided, I now take dated photos and bring them with me to the appointments.
IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?
Every day with RSD/CRPS is a struggle but, having a lifetime of pain already (and now this, too), I am determined that it's not going to ruin my life (I will survive!).
DO YOU HAVE A GOOD SUPPORT SYSTEM
I have the most amazing husband who spoils me rotten and is there for me every step of the way. Without him, I would be a lost soul. My two daughters never cease to amaze me, with their help and determination and love. And my two beautiful grandchildren (who know how to do the softest hugs and cuddles with so much love). And I can’t forget my wonderful doctor, who sent me up the right road and who I can’t thank enough.
DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
Faith is my HOPE.
HOW HAVE YOU RE-INVENTED YOURSELF?
I am a stronger person mentally and determined that this disease won't win .
HAS ANYTHING GOOD COME FROM THIS TRIAL?
YES, knowing I am not alone and that, around the world, there are many of us who are going through the same thing; that we can share our pain and understand what each other is going through.
WHAT THINGS DO YOU MISS THE MOST?
I miss my friends, who don't understand, and I miss the “biggest and hardest hug ever” that I used to get from my hubby, my children and my grandchildren.
WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I think a documentary should be made for all of us with Chronic Pain. People need educating, doctors need educating, governments need educating, and carers need educating.
*THESE ARE GENERAL QUESTIONS, IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.
"One life." Live it to the best of your ability and remember that, even though we are in pain, there is always someone out there who is worse off than us.
Gentle Hugs to All xx
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