Person with ME


My story I guess starts way back when at the age of 16 I was really ill with glandular fever, which seemed to take an awful long time to get over. After this I also had to suffer an operation to remove my gall bladder as it was found that I had gallstones. My IBS started up straight after having the operation and I found that a lot of foods did not agree with me anymore.

 IBS stayed and played a major part in my health and then in 2009 I had a flu type illness which knocked me off my feet and had to take a week off from work. After my week was up I went back, and found myself to be shattered at the slightest exertion.  I started to turn the brightness on my monitor down as I could not tolerate it at all, dizzy spells whilst sat down, and a strange sensation in my fingertips when I tried to type and found that I wasn't able to.

This then went on to pain radiating from my neck and into my upper back, with weakness in my arms. I ended up going to my doctors who did various tests and then sent me for an MRI on my neck as he thought I had a cervical disc prolapse.  This proved negative. I became weaker and started to suffer headaches/head pain.

 I was then made redundant, and found myself at home, which was probably a godsend, as by now I was finding walking difficult due to weakness and pain. New symptoms would come daily. From a stabbing pain in and around and behind my right eye, sore patches on my scalp that felt like I had smacked it against something hard and it was so painful that even moving my hair hurt. Temperature fluctuations that would change from one to the other in seconds, chest pain on the odd occasion, sore throats, a nose that felt blocked all the time, yet it wasn't and I spoke like I had sinus problems, burning feeling in my legs etc etc.

 I thought I was bad then but today just over 2 years on, on top of all of those symptoms, I am finding small things difficult to do. My legs hurt to stand on due too immense burning pain and weakness. I cannot stand for longer that 5 mins without having to sit down.  A head pain that renders me useless so that I have to lay down.  Chest pain and shortness of breath make moving around difficult. Eye pain with photophobia.  I can only take my glasses off when in a dark room now.  Jolts in my whole body that would give a cattle prod a run for its money.

On holiday I ended up in a wheelchair and we decided to come home early due to my feeling so bad, I have given up going to my doctors, who want me to go to local CFS clinic for CBT and GET, I will not be attending either, I am unable to claim disability living allowance as they don't feel I fit the criteria, my husband comes home from work and has to cook.

 I struggle up to school to pick my daughter up, and lay down when I get home as it has exhausted me, other times I have to rely on someone to take her for me.

 I have no normal life left, it has pretty much been taken away, I have seen a doctor who said I have CFS, a doctor who said I have M.E., a rheumatologist that also said I have CFS and went off to grab a leaflet which was about fibromyalgia.  He said you haven't got this, he opened the leaflet and inside was a short paragraph on M.E. a few lines long, he said this is what you've got. I was gobsmacked by this leaflet. Why did they have no leaflet on M.E.?

 I have since been sent to another neurologist after my doctor found I was Rhomberg's positive, who made me walk, did a scratch test on my feet, checked the weakness in my legs, and said quite rudely, "you have ME, I am not going to waste time doing tests on you" and that was it. I walked away feeling like I had wasted this man's time. I pray one day a cure will come our way. x