Sunday, February 19, 2017

Myalgic Encephalomyelitis is not CFS the battle for understanding continues

   Myalgic Encephalomyelitis is not CFS the battle continues until it is understood. I don't know how many time I have to say this, probably until my last breath  Myalgic Encephalomyelitis is not CFS and even then people still will not understand the difference.

CFS as I have stated many time is recoverable from and most with it (but not all) will recover from it.  Myalgic Encephalomyelitis is not recoverable from and no one ever does recover from it. There are periods when it is less that at others and yet the truth is that most of the time it is worse and there is a downward path to it . 

I actually feel sorry for the doctors, because when we who have   Myalgic Encephalomyelitis really could do with their help, but the only time the doctor will see us is when we are having a "good" period, however long that lasts and when we are capable of doing something.They and no one else sees us  when we feel and are at our worse, because we're forced into doing nothing but get away from everything.So when we are seen it's because we are feeling less worse than our very worse, we are never fit just less unfit . It is during these windows of time that we make the best of what we can to do what we can, before we are back to not be able to do things again.  I can honestly say to you that since getting  Myalgic Encephalomyelitis the only times that I've not been fighting it is when I have been under having an operation, but when I wake up the symptoms kick in and I know that momentary relief will not last. 

The difference between   Myalgic Encephalomyelitis  and CFS is like the difference between having a cold and having flu. When you have a cold you may be incapacitated and feel rotten but when you have the flu everything is painful.  Or the difference, between having the blues and being depressed, when you have the blues things are hard, but when you have depression things are impossible. 

So it is with   Myalgic Encephalomyelitis and  CFS while they seem to the outsider the same and present the sufferer with many of the same symptoms, which means so many who have CFS are told or believe they have  Myalgic Encephalomyelitis.  Myalgic Encephalomyelitis is, for want of a better description CFS with flu ++ 

I have been looking at things even more closely lately when I feel capable of and see that   Myalgic Encephalomyelitis presents in many ways similarly to Fibromyalgia and there may be a link there which if found may well help the sufferers of both eventually be helped and a cure find, probably through genetics,  as I think both are a genetic attacked condition. However if you look at Fibromyalgia and CFS there is only a  very tenuous link there  to say the very most.

Okay so you are all going to get bored with me going about   Myalgic Encephalomyelitis is not CFS, but I have to do so, not for myself, but to be the voice of others who have died through it and who don't have the voice that I have. Yes this has taken me a week to do, but if only one person reads and understands then it will be worth it. 

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