• Neelu - My Story

    In 1995, I went on holiday abroad and I've never felt completely well since then (it could have started with the vaccinations, the malaria tablets, the tick bite or the stomach infection I had over there - I'm not certain what's caused my ME). The onset of my illness has been gradual and started off very mild, but I still felt that something was wrong so I went to my GP and had some blood tests done but I was just told that I had anaemia and I knew that anaemia made people tired all the time.

    In those days the symptoms were mild so I was still able to otherwise lead a pretty full life, although even then, I knew full well that I could never take on a permanent full time job the way other people could. People were always dismissive when I said that because I was young and seemed otherwise okay. I began to get painful stomach upsets which were exacerbated by the iron tablets, so I had to often choose between whether to make my anaemia worse, or my stomach upsets worse but my GP never took this seriously and shrugged it off as one of those side effects I should learn to live with.

    Around 2002, I tried to keep up with the world by doing full time work - big mistake! That brought on tinnitus and after some research, I realised I had IBS as well. I left the full time job and was unemployed on benefits for a while, and then 3 years ago took on a part time job. I also started studying part time as well. My boss suspected something was wrong as I had trouble keeping up with work, so my GP referred me to a specialist who in 2005 said I had ME when their tests came back negative.

    I didn't want to accept it and carried on regardless, but things became too since early 2007 when I started to have trouble walking, became slightly sound and light sensitive and developed more food intolerances causing digestion problems. The worsening symptoms forced me to accept that I have this and must live within my limitations. I strongly suspect my health deterioration was due to the colonics treatments I took for the IBS in 2006.

    I've since stopped the colonics treatments and radically altered my diet (excluding wheat among other things) and after reading accounts of other people with ME on various forums, I forced myself to listen to my body and pace myself more appropriately. It's difficult, boring (to rest when I'd rather be out and about), but I've learned the hard way that is what's better for me. I'm very lucky to live with parents so my clothes are washed and meals are made for me. It's taught me a lot about myself and who my true friends really are, especially since early 2008 when I had to start using a mobility scooter and my illness became more visible- people behave differently around me and it's weird.

    Update: Over time I got to know a number of people who were initially told they had ME but later found out they had Lyme Disease which is treatable and has similar symptoms. As I was bitten by a tick, I asked my (now ex) GP about it in 2007 but he fobbed me off and refused to test me saying I couldn't possibly have it. Over time, I learned to be less trustful of so called medical professionals and when he refused to test me again in 2008, I pursued private tests which came back positive for Lyme Disease and co infections. Shortly after that I became too ill to work even part time and haven't been back to work since. As the NHS will not acknowledge that I have this, they won't pay for treatment so I've had to raid my savings and borrow from family members to pay thousands for private treatment which has caused a significant improvement in my health but I still have a VERY long way to go. Initially there was a lot of denial and opposition from family cos' they were afraid of going against the advice of mainstream Drs, but when they saw how much I improved after 13 weeks of IV Ceftriaxone, they changed their tune and support my treatment now.