Myalgic Encephalomyelitis (M.E.)

I cannot say about the condition, only how it affects me. 

I am sure there are tons of variations depending on the individual who suffers from it.

So, for me. Well, I didn’t just suddenly get it. Even a diagnosis takes many months. I have known I got excessively tired for a couple of years or so. It’s been getting worse though.

Now, my first scary moment was in the gym early in 2017. I could go back and forth to the gym with weeks in between and just about pick up where I left off. I’d do half hour on the treadmill at a fair pace then move on around the weights. I set up the treadmill for half hour, usual pace and then, at 7 minutes in my energy just left me, everything wobbled and coordination went so I pressed the red stop button. I went home and went to bed totally shattered.

I presumed it might be a sleeping condition so went for all sort of checks but it wasn’t that. These things take months to check out. I went for countless blood checks too testing for anything which could possibly cause exhaustion but, none of those matched up either. I do have a vitamin D deficiency, this can cause tiredness but, my GP said that my levels are so low that supplements won’t work and, indeed, didn’t. I am now on some stronger prescription level supplements but the GP expected this not to make a significant difference.

She has told me that I do, by a process of elimination, have M.E. It is also known as Chronic Fatigue Syndrome which sometimes is more understandable.

How does it work in my life, how am I affected?

Well, how much sleep I get seems to make no difference to the outcome. I can get the full 7-8 hours and in the morning I often time feel refreshed for around half an hour and then the tiredness hits and I feel the same as I did before I went to bed. The more I fight it without sleep, the more muscle and joint pain I get, the less I am able to function on an intellectual level. Working through it is a huge challenge. All the feelings are there I just know I have to try and function no matter what. By mid way through a shift I am struggling big time and colleagues are having to carry me. This, in turn, makes me feel awful because I am letting them down but, more importantly (to me) I am failing to work through it.

At no point during the day do I feel full of energy and ready to go do something. I feel constantly exhausted. There are fleeting moments when I think I feel a little better but they’re almost like those times when we’re looking for a name, it keeps coming into our head but we can’t hold onto it long enough to pass the name on. I suspect a lot is just wishful thinking. I know how I want to feel and just for those brief moments I remember how it was when I did feel like that.

The condition can improve or go away, it does in some cases but, I’ve got to deal with what I have now. I honestly don’t know how much longer I can cope with it before I have to call it quits. My long term plans are not consistent with my not working so I don’t want to give up if at all possible.

Right now, to add insult to injury, I have two other issues affecting me greatly:

  • Hearing loss which I am waiting to get treatment for which might take months and I am not sure will ever be fixed. It’s actually rather bad and my deficiency makes me lose confidence. That’s difficult to explain. I guess it’s like a form of paranoia. I can’t really hear what is being said so my brain just wonders if there was something I should have heard, should have reacted to, should have sorted and because I don’t know what was said, I just feel inadequate.
  • A cyst on my right eyelid directly on my eye. This creates constant pressure on my eye causing headaches and some significant degradation in my vision. Everything is just blurred.

Add both those together and it feels like I am just on the fringes of society but not part of it.

So, basically, life isn’t good right now.

I’ve a husband I love dearly but who I cannot fully enjoy 

because of my tiredness and much good weather I just want to sleep through.

All of these conditions are invisible so I am just coming across as a whinging lazy bugger making excuses. When I try and say I am feeling tired I get the standard response of how everyone feels like that … No, I truly and honestly hope they don’t. It’s a little like my saying I’ve a migraine and someone then telling me about the standard headaches they get and how they know what I am talking about. Some things, some conditions just need to be understood and respected. I need help from those who understand to get me through this and no make judgements, not try to compete. Trust me, I am more than happy if anyone wants to honestly feel this all of the time to hand it over for them to win an argument with. I don’t want any part of this, if I had the energy I’d be so damned angry about it!

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