My left hand

It started so subtly, I hardly new it was happening. Sitting in a warm spring breeze watching my young son playing football, I became aware that my left hand was tingling and remember casually mentioning the fact to my husband. The symptoms grew worse over the following months, as my hand developed increasing bouts of pins and needles, became very sensitive to things that other people hardly noticed, a movement of air, the brush of fabric across skin. The pain was made extreme by tapping my fingers against any surface and I was a pianist and piano teacher at that time. Persuing my career was almost impossible. Somedays were worse than others, especially cold days when the wind was blowing and my hand felt as if it was being crushed under a boot.

Eventually I sought medical advice and was told that I had carpal tunnel syndrome and would need an operation on both wrists to relieve the pressure. Bt this time the pain was so extreme in my left hand I did not think to ask why it was assumed that the diagnosis for both hands was actually the same. The surgeon assured me he had performed the operations many times, very successfully, and as he had been my first boyfriend I trusted him.

Eventually, I had the operations on both hands done on the same day, under local anaesthetic, during the week that my beloved mother in law passed away. I was assured that this operation would not compromise my ability to play the piano, that the recovery would be easy, and that I would not be inconvenienced by having both hands done at once.

I regretted having the operation done under local anaesthetic because putting injections into my wrists was excruciating. Once the operation was over I knew that something had gone wrong because instead of the pain diminishing immediately as my doctor had assured me it would do, my left hand grew colder and colder and more and more painful. Both hands had compression bandages on, from finger to elbow and I was incapable of looking after myself for a few days - even a trip to the loo needed my husband's help. I had to go to Mum's funeral in this state.

My hand never recovered.

It took me almost three years to find out that I had not had carpal tunnel syndrome but a totally different condition called Reflex Sympathetic Dystrophy (RSD as we sufferers call it) and that there is no known cure. Cutting into an affected limb is to make the pain even more severe. Basically, the brain has switched on a pain mechanism for some reason and it never switches off. If you think of phantom limb pain you have an idea of the pain mechanism involved. Even the action of typing into my computer causes pain.

My left hand is like an alien being attached to me. It feels twice as large as it actually is, experiences sensations which are impossible to describe accurately. Sometimes it feels as if a knife is peeling back all the skin from my hand, sometimes if feels as if it is being crushed, it has cramp and pins and needles all day every day, and is always several degrees colder than the rest of my body. Before I was diagnosed I had suffered a major depression,and I went through a bout of therapy ("what is your gain from having pain?"). I finally met a specialist who understood what had happened, and put me in touch with other sufferers via a support organisation, thus giving me back a degree of control over my life.

After the diagnosis I had to decide how to live and I made the decision to live as a person who happened to have RSD rather than as a sufferer. I have been very strict with myself, keeping away from medication and further medical intervention, and using my hand as much as possible in spite of the pain. Sometimes at night, in the dark, I allow myself the luxury of a good cry, the luxury of self pity, but it won;t do me any good in the long run. I can choose to live or to retreat from life and I will not retreat.

I look at my hand.
It looks pretty ordinary to everyone else, but it is an instrument of torture to me.
My thumb is where the pain started.
MY ring finger is where the pain is concentrated.
My whole arm has pins and needles up to my neck.

I cannot play the piano any more. I have had to look for new creative outlets and writing has become one of them, the others being altered arts and scrapbooking my family's life and my late husband's life. I also love anything to do with textile arts. These sustain my spirit.

Living with pain teaches me:
compassion, patience, endurance, that money doesn't buy everything, that it is possible for the human spirit to prevail even when dealing with something as life altering as RSD.

RSD is my constant companion. It is cruel, it is relentless it is pitiless. I have had to learn to stay positive and not let it win the battle for my mind. So far, so good.