• Blackrabbit1964 - My Story


    I was diagnosed with ME three years ago after collapsing and having blank episodes. The regular blood tests were done to eliminate other illnesses as well as a cardiogram and scans. For a while the neurology department at the local hospital was treating my illness as late onset epilepsy. My blank episodes and heart problems were still occurring and so my partner and I did a lot of research and the path of ME/CFS were followed.

    The Head of Neurology was very rude and unhelpful, compared to his assistant, who being younger had probably got a better understanding of the illness. Some of his knowledge has been picked up now through training at med school and he directed us with our initial path to go back to our very helpful doctors surgery. In the meantime, I kept a very in depth diary for a year outlining all of my symptoms.

    By this time, my work as a fulltime self employed gardener and a very competitive sports woman had diminished. We eventually found a specialist hospital in the country at Harrow which happened to be located in the infectious and tropical diseases department. They receive NHS patients from other areas as well as their own. I had an appointment to be seen there and within two visits, I had been diagnosed with ME.

    My partner and I followed research news through a local group and looked at finding routes to help with treatment of the condition. This really meant doing a lot by yourself because as you know, symptoms can be very spontaneous and change from one day to another.

    Looking back, I can see my health started worsening after I contracted Glandular Fever. I also noticed this after I had an operation in my early twenties. I subsequently became allergic to different things.

    I still find myself very angry and unhappy at times and it has taken nearly two years to find the cause. I have accepted the illness but find managing it very difficult due to its complexity. I hope this may help someone reading this and encourage them to persist with your GP. If no success with your current GP, try to see another. I also think it is a good idea to join a local support group and even if you do not go on functions they can be very helpful with wheelchair hire, disability, benefit help and advice with legal issues.

    In the meantime we hope for more research to find out about this illness and similar ones.

    Sending Hopeful Wishes to all sufferers and their carers.

    From Blackrabbit.