Saturday, 26 October 2013

Hello? Is it M.E you're looking for?......

What a difference a day makes. At last I have been told I have M.E.

It doesn't change my health, but it does change my treatment. No longer will I be subjected to months of psychotherapy. No longer will I be denied physical aids to help me move around outside and in my own home. No longer will I be advised not to close the blackouts on a bright day, even though the light gives me a migraine. No longer will I be told 'not to give in' to my symptoms as this is 'making them worse'. No longer will the responsibility for my illness be placed at my door. All these months of fighting, thinking that somehow I must be making this happen, somehow wanting to be sick. 

I don't need time to accept this new diagnosis as I've known for some time I had M.E. Getting the doctors to agree was the hard part. On my journey I have learned essential survival and managing skills such as pacing. I have made some great friends who understand the illness and how to live happily while being chronically ill. I have developed ways of making the boredom easier by doing small crafts like knitting. I've tried hard to maintain a sleep cycle which resembles that of a healthy bod. But if only I had been correctly diagnosed from the start, I could have rested when I really needed it instead of always pushing myself to improve. Yes, delayed/ wrong diagnosis may have made this worse or make it last longer. But I can't be angry or bitter. They didn't set out to harm me or hold me back. There is so much that doctors don't know and can't treat right now.... if only there was more research. And anyway...I don't have the energy.  I have to focus on getting the help I need from the professionals who can provide it.

Today is a good day.


  1. This is it in a nut shell Lu. Severe M.E sufferers do not have enough energy to use it on negative emotions or fighting those who do not understand. We want to live the best life we can and that is often helped by biting our lips, living with less money, living without social care and/or social benefits.
    I love your heart Lu - you are very edifying to be around. xxx

  2. So much I can relate to Louise. I was misdiagnosed for decades, given inapppropriate advice/treatment which probably made things a heck of a lot worse - I only found out what was actually wrong a few years ago by having expensive tests from a private M.E. specialist - Dr Sarah Myhill).