↑ Return to FSHD ~ My story

Print this Page

Karen

From an early age I always knew I was different. At school I never looked the same as any of my friends, they could all wear trousers, skirts and pretty dresses. I always had a pot belly that made me look like a refugee from a third world African country! I got used to the stares and nudges when the other kids would poke fun and call me fish lips because I could never remember to make a conscious effort to keep my lips together and school photographs were a nightmare, my face always looked lopsided and I never seemed to smile although I thought I was at the time. ……When I hit my mid teens that was when the pain started, it was so bad I just wanted to hit my head against a wall. I was finding it difficult to lift my arms and that along with the pain and needing to be on my feet for long periods of time meant I had to give up my chosen career as a hairdresser. I was in pain and fell over frequently but that was me, everyone knew it was Karen’s thing; I’d always got scabby knees and bruises .I met my husband and got married when I was twenty and still I didn’t have any idea what was wrong with me. Five years and three children later the pain had spread to my hips and legs and walking was getting a real problem. By chance I attended a well women clinic at our new GPs where the nurse mentioned how my left leg was totally out of line. She had a word with the doctor who referred me to see a general medical consultant at the then Birmingham General Hospital, he wasn’t really sure what I had but said all the signs pointed to Cushing Syndrome which was quite a shock especially when brain ops were mentioned. I had loads of blood tests done and was told I would hear something shortly. A few days later I had a call, could I go to the Neuroscience department of the Queen Elizabeth Hospital Birmingham, and be prepared for a few days stay? My case had been sent to a consultant neurologist who decided to run a whole battery of new tests, x rays, MRI scan, coordination, and electrical impulse tests which were quite painful, and finally a muscle biopsy done under local anaesthetic as they weren’t sure how I would react to a general, I actually watched the whole thing in the reflection of the operating lights above me, to say I felt everything was an understatement. Two days later my consultant asked to meet my Dad and for us both to attend a case conference. He asked my Dad a few questions and examined him, and then announced to us that we both had a condition called Facio-Scapulo-Humeral Muscular Dystrophy. It was inherited and I’d got it from my dad and he had probably got it from his dad, there was no cure but as my dad was still fairly mobile I may be okay but it would be a case of wait and see. I could go home now and he would see me every twelve months to see how I was doing. I remember sitting in the car on the hospital car park, it was the week before Christmas and I felt as if my whole world had fallen apart. We managed to get through Christmas but I knew the New Year was going to be a trip into the unknown, I remember feeling very frightened and very alone. Once the shock had worn off and I realized things hadn’t really changed I was still the same person with the same problems. I just had a fancy name for it, though at the time I didn’t actually understand the long term consequences. Having FSH has made me the person I am today. I can’t say it’s much fun having FSH it’s a truly frustrating, devastating and a soul destroying condition, there are days when I sink into the depths of despair. I carry the guilt that I may have unknowingly passed it on to my children and future generations. I feel anger when I can’t do something, I hate my dependence on others, and want to scream at the very people that I love most deeply that they don’t understand how I’m feeling. I worry what will happen to me in the future, who will look after me, will I be able to cope if I can’t feed or wash myself or have to suffer the final indignities of having others to do the most personal things that I can’t manage myself. I consider myself lucky in that I have three amazing children that I’m so very proud of. They give me the will to carry on. We’ve all had to get through so much over the years not just the practical problems of living with FSH and all that it entails but the emotional roller coaster that we’ve been on has left its mark on all of us. You can read the full version at http://karensfshjourney.blogspot.com/ © Copyright April 2008

Permanent link to this article: http://fsh-group.org/?page_id=308