Well how many ME bloggs have I read whose first post begin with something along the lines of "...I have been housebound/sick for a year now"? I guess when it first happens you think it couldn't possibly last and then after 12 months you realise that 1yr is probably just the start of this journey. My journey actually started in childhood with my mother trying to find answers and then it became more independent when I turned 19. I had 21 years of searching for answers and basically wondering why living a 'normal' life seemed easy to everyone except me. Work and life became more and more of a struggle and finally, in Oct. 2010 I got the flu and my body said "no more". Within 4 months I went from totally independent to disabled - I had to give up work, driving, lost my ability to walk and lots more. On a good day I can move around my house to get meals, have a shower, maybe do a bit of housework, a small creative task or walk to the letterbox. On a bad day my body is contorted in to a twisted form requiring assistance with walking, showering, eating, dressing and toileting. I can never leave my home unaccompanied.
The thing with ME is that every action generally has quite a significant consequence -fatigue, impaired cognitive ability, pain, stomache issues, inability to sleep, the list goes on and on - and your body starts to take this into consideration day and night, night and day. Only those closest to you get to see this cause and effect cycle - to the rest of the world ME is an invisible illness and this not only makes it difficult for acquaintances but also in our search for medical help.
In some respects I am lucky. My journey with this illness has been the reverse of many other sufferers who are knocked down suddenly. Unable to find answers from the medical world I have had to work lots out for myself through trial and error and instinct. There are many things that I already had in place, feelings I had come to terms with and most importantly my life partner has made many years of this journey with me. Discovering I actually had a Chronic Illness was almost a relief because I had been feeling, for so long, that my inability to keep up was all down to attitude and a terrible personality flaw. Now I know that I have actually achieved a great deal under very difficult circumstances.
Last year I chanced upon a Blogg and this lead to discovering that there were actually people all around the world with the same symptoms as myself. This was/is comforting but also disheartening because despite many years of knowledge re ME/cfs the deserved recognition of just how severe this illness is still seems to be ignored. I hope, especially for those younger than me (atleast), this attitude changes in coming years and we can have access to professional, knowledgeable care and support.