• Suejay - My Story

    In the mid 1980's my (then) GP diagnosed me with a 'grumbling appendix' and said that if I ever experienced pain to the left side of belly button to seek medical attention because it was an appendicitis. Fast forward to 2004 and I didn't develop pain, but a funny feeling that defied description. I remembered what he said, but because it wasn't hurting me I dismissed it as one of those weird things that happens sometimes and expected it to go away. That started as I recall in midsummer, by November I was aware that I was not well but couldn't put my finger on anything and still no pain so didn't bother with the GP.

    Then on the 21st November I developed what I thought was a stomach bug but by the early hours it was woefully obvious it was something else and I was admitted to hospital. Now, I don't have any medical history as I was adopted so the hospital had to do a battery of tests to rule out other causes, and by now yes I was in pain and on morphine! They told me I was going down to surgery the next day about 5pm but, following blood tests that morning, told me I had been moved forward to the first slot after lunch. The surgeon later told me that had this not happened I would have died.

    I was so ill that he came to see me twice a day until I was discharged - no not a doctor the surgeon himself! But when I was sent home, the concern was for the wound (6 inches instead of 1-2inches) and no-one said anything about how hammered my immune system was from all that poison. I went back to work 6 weeks later, which I think, was my big mistake. I worked with the homeless in a hostel and I do not mean this disrespectfully, but hygiene was not always a priority.

    Within a matter of days I came down with a virus that knocked me for six for several weeks and resulted in a phased return to work. But I was always tired, and as time went on developed other symptoms as well which I was putting down to stress. A blood test revealed hypo-thyroidism and I believed this to be the sole cause of my problems. Infact, I had misread that you can't have a thyroid problem and a diagnosis of ME. In September last year I had to give up work, my reasons were the changing hours and family commitments but really it was because I couldn't do it. I was finding it hard to get out of bed let alone do anything else.

    I haven't worked since then. At one time I was convinced I was developing pre-senile dementia my cognitive skills have deteriorated so badly. I get temporary dyslexia when I've over done it, the usual aches and pains, a hangover without any alcohol the list goes on! But STILL I clung to the belief that it would all go away once my thyroid was under control. So, great was this belief that when the thyroxin treatment began, I very confidently announced to all my friends and family that once it had kicked in I would be back to normal. It was a bitter blow several months later to find I wasn't. I was forced to finally accept what my GP had been saying all along when he had to complete the form Med4 for my incapacity benefit claim and put down ME as the principal cause with the wonky thyroid as a secondary condition.

    There it was in black in and white - I have ME. This was a huge body blow and I lost confidence as well as getting very down. But I was determined to beat this thing and pushed through the warning signs making myself ill in the process. A trip to London to see my son brought me to the point of physical collapse and was the turning point in my accepting the condition. It also scared the heck out of me. I am still in the challenging mental state, ergot I'll decide to prove I don't have it by doing this that or the other and get wiped out for a few days. Gradually this is easing as reality has been a swift tutor and I have been brought to the point of collapse another couple of times since London by quite trivial things - trivial compared to what I used to be able to do that is! So my point in telling this story?

    Not sure, I don't have insight into the condition as I haven't had it long enough to have developed any, but if anyone you know says they have a weird feeling in the belly get them to check it out. It can be appendicitis and it can kill. I was told that I am still alive simply because of modern antibiotics and surgery techniques. Just a few short years before 2004 and I would not have survived. But as I learned, while you may survive the initial emergency the repercussions can be huge and no-one tells you about them, or warns you to try and avoid infection until your immune system has 'rebooted.'