Life With M.E

 May is M.E awareness month, after 33 yrs of living with it & campaigning I kinda hoped we'd be somewhere by now where awareness wasn't needed, and I wouldn't be here again boring the pants off you, but unfortunately that's not the case,  there's still alot of ignorance surrounding M.E (No we're not a little tired)  and there's still no treatment and no cure, so here I am once again  to hopefully give those of you unfamiliar with the illness a very brief insight that I hope will help, next time you hear it mentioned.

M.E known by it's medical name Myalgicencephalomyelitis (Yes I know, let's just stick to M.E)  is still classified by the World health Organisation as a neurological disorder, It's often referred to as a        "lingering death"  because quite frankly  that's exactly how it feels. The illness is a complex chronic one that affects the whole system,  physical and also sensory, from a whole body exhaustion, to  cardiac, gastro, muscular, immune, sight, sound  yadda yadda and so on. (I won't list it all in case you fall asleep)  So in simple terms on a daily basis we have to find a way to live, cope, manage  and still carve out some kind of a life for ourselves while dealing with symptoms that make you feel like you're dying, in fact an M.E sufferers daily symptoms have been likened to the last days of a dying aids patient. Sadly for this reason and the fact that there is still no treatment or cure, it becomes too unbearable for many and they end up taking their own life. In the early days of my own  diagnosis I too looked at the assisted dying hospital Dignitas in Switzerland because apart from not wanting to be a burden on family or society I wasn't sure I would be able to cope with living  a life with M.E. After alot of  soul searching and chatting with family I decided to stick around and use my point and purpose to campaign and raise awareness for future generations, even after 33 yrs years of it I still believe it will come eventually, not in my lifetime but it will come and considering it's now  looking like Long Covid may be similar to M.E, for that generation it's going to matter and make a difference.

As with many other illnesses and disabilities referred to as invisible, you often can't tell someone has M.E, there is no visual, no missing limb, our heads don't spin 360% , in fact we will probably look fine, normal even (Although in my case some may say that's pushing it?)  Some of you may have even seen me about at the local shops with the mother, who i let out from under the floorboards daily so she can stretch her legs?   I guess Goodwood is my Rock N Roll, my limit, it's what i can manage and not have too major impact in the main. For the past fortnight I've not been able to do alot at all, go into the recording studio, do yoga, even at home. My cousin came over from Kenya recently but I couldn't even make it to Stevenage to see her, We often miss weddings, funerals, parties, gatherings because every thing an M.E sufferer does has an impact usually between 24-72hrs later , so if we do make it to an event you won't see the fall out  that happens later behind closed doors. The last thing people with M.E want is a pity party, it's just about others having some understanding, it's nice to be included and invited and to still feel a part of things even if the majority of the time we can't come . So there we are, if you've got this far, thank-you, I hope it's given you a brief insight into a still much misunderstood illness, If you would like to find out more you can always head over to the wonderful Charity Invest In ME research run entirely by volunteers who take no wages. I'd just like to leave you with a little thought, no matter the cards we are dealt, good or not so good there is still always a point and purpose to life and much that we can contribute, we can be reminded of that in the passing of Tina Turner, not once in the out pouring and tributes have we heard about her mansion? Wealth? Chart position? Only of her kindness, her strength, her contribution and her inspiration, all of those things don't cost anything and are things we are all capable of no matter the cards dealt.  

                                                                              Til Next Time                              

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