• Carol Skelton - My Story

    At 5yrs old I contracted measles which was very serious and almost landed me in hospital. A little later my tonsils and adenoids were removed due to constant sore throats. At around 10yrs old I developed intermittent pain in my pelvis. It referred down one or both legs which made walking to school painful. I told no one and no one noticed me limping. Then at 13 my appendix was removed because of recurring abdominal pain.

    At 18 I went to London to learn how to be a nurse. Perhaps not the best occupation considering the pain I was suffering. Before my first year ended I had had a chest infection that led to pleurisy. I then contracted Brucella abortus, Brucella mellentensis and Glandular Fever. The last three infections were not diagnosed for two years, even though my best friend was diagnosed with Glandular Fever. I was accused of making it up and was sent to a VD clinic where I was accused of using a knitting needle inappropriately in order to make myself bleed continuously.

    During my nursing training I suffered numerous bouts of back pain and seemed to catch flu frequently. My high white count was dismissed as irrelevant. At 22 I had another bout of severe back pain and was diagnosed with Ankylosing Spondylitis. Throughout all this, I remembered that when I got tired my left eyelid would droop and I would tire easily. My social life was also affected and I hated discos!

    I had my first child at 26. He was early and small for his gestation as I had had an abnormal placenta and an atrial septal defect. My second pregnancy ended at 20 weeks due to a missed abortion. It was a terrible time. Chris was born next, he is Dyslexic. I was then sterilised as my back pain was too great to suffer another pregnancy.

    All this time I was a working mum. I was exhausted and too tired to enjoy motherhood. Each day was a trial. I then caught the Noro Virus collapsed and gashed my head. I suffered terrible headaches for months and was eventually referred to a Neurologist who was dismissive and rude. Eventually the headaches faded away.

    Then I had a fit and became very ill. I was admitted to hospital where I had another fit. They decided to transfer me to another hospital for a scan. Unfortunately the same Neurologist saw me and as the scan showed nothing, I was discharged with a lecture about 'wasting his time'. That evening my GP visited me. Apparently when he examined me each eye looked outward simultaneously, I was readmitted and was in hospital for four weeks and was so ill I had a near death experience. As soon as I got home, my line manager badgered me to return to work. Stupidly I did so after just two weeks at home. I lasted one month before retiring from nursing.

    The next 15 years were awful with frequent admissions to hospital. I had an ovary removed due to a burst chocolate cyst followed by a hysterectomy due to endometriosis. Soon after I had my second ovary removed after a week of severe pain. I once again was not believed by the surgeon. I later found out that the fallopian tube was twisted and the ovary was pulled out of position. Since then, Iíve had numerous admissions due to collapses and have been treated with disbelief. During one admission, my ECG showed 'inverted waves', and my phosphates and magnesium were dangerously low. I was accused of starving myself to upset my electrolytes (my bloods were normal 10 days previously, this was ignored) and the ECG was dismissed. A psychiatrist was summoned to see me. During this admission I reacted badly to Medazolam, it stopped me breathing. The Anaesthetists were fantastic and stayed by me for two days, but the surgeon dismissed it all as a stunt!

    I have been in constant severe pain for 20 years and have been taking Morphine and Fentanyl for at least 15 years. Iíve been investigated for left sided weakness as well as pins and needles. Nothing was found. The Doctors started to treat me with antidepressants. The first caused anaphylaxis and the second stopped my bladder working. I still use catheters. Numerous other drugs were given to me to try to stop the pain but they caused various nasty side effects. I was becoming much worse, bedridden at times with no voice and very dizzy.

    Two years ago a friend suggested I had ME. I asked my GP for a referral but he refused, telling my husband I only wanted an excuse to be lazy. I eventually got my referral which led to my diagnosis one year later, via the Pain Clinic. Another GP called me and my husband in to the surgery to deliver a lecture to me. I apparently had altered llness belief, not ME, and my selfish behaviour was going to be the cause of our divorce. Amongst other things my husband had to make me get up and do things. I was told that soldiers were worse off than me and they did not mope around!

    I am now bedridden most of the time. I have to go to the surgery as I get Scleritis, which also means a trip to the eye clinic. Each time this happens I am ill for weeks after. My husband tries to cope on his own looking after me as well as running his own business. He had a triple heart bypass earlier this year and he remains constantly tired. I worry that I have passed the disease to him. I get medicines from the surgery and thatís all. Fear of scepticism, humiliation and outright disbelief prevents me from asking for more help. They have made me worse by refusing to learn about ME and treating me with copious new drugs, and advocating exercise. Iíve received incapacity benefit, and the higher mobility DLA for 16 years. I have received no care allowance because I worry that if I ask for that, I may lose what benefits I already get. All I want is to get better.

    Carol Skelton