This starts on 23rd December 2001 while seeing some business friends (of my now ex-husband) out of our first floor flat after they had dropped by for a quick Christmas drink. I missed the bottom step on the flight of stairs leading to our front door. I had to stop work from that day as I was a retail sales assistant at the time.
Two weeks later, I decided to go and see my GP as my knee was not getting any better. Plus I was unable to put any weight through the leg. My knee had also locked in a bent position and I couldn’t move it. I was sent to the local hospital for an x-ray as my GP thought I may have damaged the cartilage in the knee. But when I got to the hospital, though I had a form requesting an x-ray from my doctor, the nurse refused to do an x-ray telling me I’d sprained my knee and to go home and rest it.
I returned to my GP a couple of weeks later explaining that the knee and leg were not improving and I was in a lot of pain. I now realize that at the beginning my pain wasn’t too bad because at the same time I was suffering with Facial Trigeminal Neuralgia, due to damage to the cartilage in my jaw joint, and I was on the nerve pain tablets.
My GP then referred me to the physiotherapy department at the local hospital where I saw a physiotherapist for about six weeks. That’s when he decided that there was possibly something really quite wrong with my knee and that, in his opinion, my cartilage was cracked and I needed to be referred to an orthopedic surgeon.
After the MRI scan, I returned to see the knee specialist and he said that they couldn’t see any damage, but it was difficult as I am unable to straighten the knee and the pictures weren’t clear. He then decided he wanted to do a nerve block injection into my foot so I was admitted into hospital a couple of weeks later.
When I returned to the ward, I was kept in for about three days until I could stand and hop about comfortably with my crutches as they wont let you out of hospital until you can do that. This was when we noticed that my leg would go almost black/purple whenever I stood up.
When I returned to see the knee specialist for my update appointment, I was told that I had the condition called Reflex Sympathetic Dystrophy. It wasn’t explained to me what it was, but I was told that hopefully my leg would slowly recover and I may be walking with possibly a walking stick. I was then referred on to physiotherapy, though this didn’t do anything for my knee as it stayed locked and was extremely painful.
I now only have about 15% movement in the knee. I also had two more knee manipulations and each time I was put into a constant passive motion machine (CPMM) when your leg gets strapped into and it continuously moves the leg up and down. I do remember on the third manipulation, I was put into the CPMM in recovery. When I regained consciousness, my leg was strapped to the machine and it was already moving. I started screaming in pain, but the only thing the nurses did was give me more and more morphine until I was quiet.
I was eventually told by the doctor that he thought I might recover in about five years, but that I would never be able to straighten my knee and never walk unaided.
On top of all these physical problems, I’ve also had difficulties with relationships because of my disability like I guess a lot of other women have had. My first marriage broke up because that husband couldn’t cope with looking after me. Then my second marriage broke up because that husband walked out on me two weeks after our first wedding anniversary for another woman giving the reason that I was a “cripple” even though he married me like that!
I am now just settling into a new relationship, but this time it’s with someone who I’ve known all my life and he’s totally ok with my disability. In fact, he is officially registered as my “carer.”
Regarding my neglect from the medical establishment, the main of it happened within the first eight months as I had to fight tooth and nail with the local hospital to actually get appointments with the orthopedic knee surgeon. I was continuously telephoning and writing to the head medical director to try and get things done. I also kept telling my own GP that I knew something was seriously wrong with my knee/leg, but was continuously told that it was just a sprain and it would get better. Those eight months were hell for me as I felt so cut off from the world as no doctors believed me. On top of all that, I was totally house bound in a 1st floor flat with no way of going out, except when my husband would condescend to take me out, which wasn’t very often.
I have had to do all the investigations about RSD myself as no medical person has explained the condition to me. It’s through doing that I found out that if someone with RSD is given intensive physiotherapy and correct medication within the first six months of the condition starting, that person has a chance of recovery. But once you get past this, it’s the point of no return.
I do feel let down by the medical profession as I was just ignored for eight months about something that I knew was serious. I don’t know if this was because I was a woman, but it does seem that way. I have now been left with a very painful and disabling condition where I am unable to climb up or down stairs or steps, walk father than about 10 meters and stand longer than about five mins.
I hope that my story may help other women who may be going through a similar situation.