A strange title? Dying with M.E. ?? It may be to those who don't have it and don't have to struggle everyday to reach another one, whatever meaning now a day has for it, certainly not a 24 hour period.
I have had M.E. for over a decade now and I can tell you exactly how I got it as can everyone who has M.E. we know how we got it, through a virus infection, in my case flu, what we don't know is why we got it and it is not something that is understood by the medical profession as yet. I used to be able to tell you exactly when, but I can't because of the years my memory has lessoned, part of that might be age, but most of the reason for that is the "brain fogs" that are wiping my memory. This memory loss is another thing I have found talking to others with M.E. is very common.
When it first started I thought it was just a hangover from the flu and that it was taking my body a bit longer to recover, but then the weeks turned into months and I realised that this was different, as it turned out to be. My body, just wouldn't let me do things I could do before I had the flu and the more I tried to do them, the worse I felt and the longer it took me to recover from doing simple tasks. At first I thought maybe I was a bit down, which would have been normal after the flu, (which had been the first time of my having the flu that I had gone to rest with it), but then I began to forget the names of everyday objects or rooms. Most frightening of all was that I found myself at the bottom of the stairs in the home that we were living in at the time and I didn't know how I got there. I had seen a thing about post viral fatigue, but I didn't feel fatigued all the time and still don't, at times my energy levels are normal, it is just when my body starts to play silly buggers that I get worn out.
I wondered if I had had a stroke and looked on line to see if that was a possible answer, before going to the doctor to tell them about things. A serious of test later and there was nothing conclusive shown, so I was left in the dark not knowing what was wrong with me, only that my body wasn't right and I didn't know what it was only that it seemed to be attacking me. It was a friend who was a disability employment officer who said to me, I know what is wrong with you because I have a client with the same symptoms and what you both have is M.E. I then looked up on the internet and came across https://www.hfme.org/ which exactly described me. So with this information I went back to my doctor and told them what I had found and they agreed. In fairness to my doctor at the time I was probably the first person with M.E. that they had come across.
Over the years I know my body has attacked me and that more and more things are going wrong with it. Yes, I had and underactive thyroid before getting M.E. which meant I was immune compromised which possibly meant it could bite harder (but I am not sure if this is a fact as no one really knows as anyone can get it). Yet even this didn't stop me from being mostly healthy and my diet wasn't bad. However to get back, (see how the mind wanders) as my sleep isn't good and I really can not remember the last time I woke up feeling refreshed, my body is more prone to things. I now have to keep taking so called hay fever remedies all the year round, because I can have a reaction to almost anything and I mean almost anything! I am now photophobic and audiophobic (yes I made this word up but you know what I mean) my joints hurt as does my whole body and I have to fall back on medication to bring what relief it can to the pain. There are days, more and more days, when I know my body can not cope with the attack and it gives up.
I really don't want to list everything, because I know that most won't accept that M.E. is causing these things, yes age plays a part, but age just means the body through aging is less able to cope with the attacking all the time.
I have come to accept that very few in the medical profession understand what M.E. actually is and what it does. Most of the time I find myself having to explain things to them and them looking blankly back at me as if I don't know what I am talking about. Yet I, along with others, for I am far from the only doing this, have said things that science now proves we were right ! Just like now when I say, you won't see anything and connect it to M.E., because well all you are seeing is the results of what it is doing. I strongly believe that M.E. attacks and somehow changes our DNA and that somehow changes what our bodies do. It is a only feeling of mine, but one I am surprised that others with M.E. share, because while we feel the effects we know and don't ask me how we know that there is something far deeper happening inside of us. Perhaps if we could all be tested then a conclusion might be made and agreement reached. Again I have my doubts, because as we all have individual DNA so those of us with M.E. are attacked in different ways. Yes we share many of the symptoms, because M.E. produces practically the same results, but it will only be when it is fully understood that M.E. is at best a blanket term for a genetic virus (for want of a better word) we we make the leap forward and be able find a solution to control/cure it, but it will have to be on a genetic level.
I am not being negative with this post, far from it. I just was wondering about the cause of death of people and I can't remember where I saw, but I seem to remember that M.E. is hardly mentioned given what it does to people! I wondered if those whose bodies have been constantly attacked like mine has had died because of it, but the cause of death was recorded as something else or even "natural" ? Knowing how my body is breaking down through these attacks, I know that whenever it happens, the REAL cause of my death will be M.E. and I am okay with that. Which is why I titled this as I have.
I suppose I had better state this just a personal view. I do however really hope that once more we stop linking, lazily CFS with M.E and look at them as connected, as the common cold and flu are, but separately as we do them. Perhaps and only then will we all understand that M.E. needs to be investigated fully and perhaps find a cure and perhaps stop the deaths which I know are happening because of it.
P.S. It has taken me about a month to write this, because previous versions, well even I couldn't understand so I deleted them and this final version has taken a week or so of trying to get it right, but I bet even now it isn't.
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