I went back into hospital just after my Birthday and at last I have been given some answers to many of my unanswered questions. I have been diagnosed with M.E/CFIDS - Myalgic encephalomyelitis / chronic fatigue and immune dysfunction syndrome. The condition is referred to by several different names purely because the medical profession can not agree on a name because the complex range of symptoms doesn't make it very easy to sum up. It is also known as CFS and PVFS (Chronic fatigue syndrome and post viral fatigue syndrome) Confusing right!?
It is still a relatively 'new' condition in the early stages of research. There are even many places in the world that still don't accept it to be a genuine illness, and even here in the UK there are Doctors who think it's all in the head, which is completely ridiculous. A lot of research needs to be done, because this is a devastating and disabling illness that should be taken seriously, because the majority of people living with it, assuming they have even told they have it, just have to get on with it without any help and that is not acceptable, for a person with M.E or a person with any other serious condition.
I'm glad to have been given a diagnosis at last, so I know now what it is I am tackling, but also like any major illness nobody wants to be told they have it. For me the most difficult part of the diagnosis is that there is no known effective treatment, very little support, and an enormous uncertainty about the future. Many people with M.E spend many many years fighting it and trying to live with it but are faced with severe relapses and set backs, although some people can recover after about 2 years and go on to live a normal life again. I was told that my particular case is on the top end of the scale and I am one of the worst affected patients that the specialist has seen in her whole 20 years, so that's not too reassuring However I WILL fight, like I have done throughout the whole epidemic, and it will take all my physical, mental and emotional strength at times, but eventually I will get back to being Hayley again, I might be a little different, but I will be a stronger Hayley nonetheless.
I will continue to share my experience with what I choose to refer to as M.E, and hopefully I can help even 1 more person out there become familiar with it and all the trouble it goes hand in hand with. I'm still also dealing with the unknown neurological illness too, but I'm trying SO hard to stay positive about everything, which recently has been extra difficult. If anyone reading this has M.E, please get in touch with me I would love to talk to you about it, right now I'm trying to learn about the condition a little more and the best way to learn about it is by talking to survivors.
M.E makes every part of me feel so weak, but in many ways I feel stronger than I ever have. Life works in funny ways.
artist John Edwards
More info about M.E here: www.actionforme.org.uk
Love Hayley-Eszti xx