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Amanda and Micks Story

It was great to know that someone is there to be of comfort to suffers but most of all for their carers.

Mick said that you wished to know about the way I coped. Well my first symptoms started in March 95.
My knee joint started to hurt while I watched TV. I had a very busy life as I care for 6 children, 3 of mine and 3 step children, so I just thought I had twisted it during the day.
It felt hot inside and cold the touch so I went for a bath. There I noticed a red area over the knee which was getting bigger and the pain was getting worse. Mick had to carry me back down stairs and the pain was unbearable.
The red patch started to blister and was incredibly hot, Mick phoned the doctor who came out very quickly. His diagnosis was arthritis and sent me to hospital the next day. The problem carried on and on for a further four weeks with trips to hospital 3 times a week test after test with nothing coming up in the results.
The joint was finally tapped and injected with steroids 3 days before my wedding.
Over the next 9 months this happened again and again in my knees ankles and toes, my arms were like pin cushions from all the blood tests but nothing ever showed up. I felt scared and got very depressed as I felt no one believed me. I underwent two exploratory operations on my ankles and almost died after the first through neglect of the hospital.
I had a mouth full of ulcers and my temperature was through the roof. I had been given antibiotics which seemed to help but my veins were all failing and didn’t get my medication all day my temperature got so high my body shut down.

I started to feel that I was imagining my symptoms or making them happen to myself. I felt like my problem was a mental one.
I wasn’t diagnosed with Behcet’s until Feb 96 by this time I had lost my eyesight and my legs were so week just a small distance would cause me pain.
It started in august 95 with an outbreak of blisters on my face type spots, I was a avid gardener and had been in the garden all day long, so I had thought I had been bitten. I visited the doctor who gave me some pills.
A week later my vision started to go funny, like fog, getting worse over the next two days. I was taken into hospital and the sight deteriorated to nothing. Over the next few hours I was totally blind. Again I was tested for every thing including aids---- nothing showed up.
I suppose I was in shock I thought I was going to die I was so scared but my only worry was my children I couldn’t let them suffer. I couldn’t sleep I couldn’t think I was very numb.
I really thought I was useless, I wanted to cry but the tears would not come. I came home from hospital, Mick helped me onto the sofa and put the radio on for me and I lay there with the sun beaming through the window on my face. I could hear the children playing, I felt so peaceful.
Then my youngest son shouted at me throughout the window "look mummy watch me"
I opened my eyes, but I could not see him,. I cried so hard.. The thought of never seeing my kids again tipped me over the edge. I cried all day.
That night, with the thought I was going to die with what ever I had got, I sat alone, everyone else was in bed. I found a pot of pills and some whisky, but I could not do it. Again I cried.
The following day I really opened my heart to Mick, I told him I was so scared and about my fears. I told him that I wanted to be remembered as a good mum and a loving wife, not a blind wreck. I asked for him to help me through this my way, and not to fuss. He understood. Together we went through the house putting everything into a ' home' so I could find things.
I could manage a life of blindness but couldn't cope with the thought I was going to die. It was those thoughts that helped me as when all the results came back negative, I wanted to learn how to live for my kids and Mick.
But I still did not know what was wrong with me.
After 13 weeks of endless trips to the hospital, I saw another doctor about my joint problem. She said that she had been doing research into rare diseases with arthritic symptoms and sent me to see a specialist who may be able to give me some answers.
He told me I had Behcet’s syndrome. I was so relieved. I was not going to die. I was put onto medication. After a few weeks my symptom started to subside, but I was still blind, and told that I would be very lucky if I gained any back as the damage was severe.
I now have a little sight back, enough to get by in the house. But I struggle out doors by myself. It took me 2 years to get any sight back at all, and am happy to have the little that I have.
A year after the loss of my sight I suffered a brain haemorrhage. My speech was slurred and had throbbing head pain all the time. The drugs made me sleep most of the time. I got very frustrated with myself, which made the headaches worse.
Again I recovered slowly. Mick was told to finish work to care for me, and I hated that most of all as it meant he was loosing the little independence he had left.
My life has changed so much over the last 5 years. It has taken so much away from me. I get very depressed and days when the pain makes me cry, I have been given drugs that have made me feel so ill. I now take Chlorambucil tablets and seem to be doing well with them at this time.
The one thing in my life that will never change is the love that has seen me through all the pain. Mick has been at my side throughout it all and is always giving me the strength to carry on.
I think it is harder on a carer than a sufferer. There is no pain relief, or drugs to help them cope.
Keep up the good work, they need your support as much as the sufferer
Thank you for caring

Amanda Kinsey