Understanding M.E.

It may seem like I go on about M.E. quite a lot. Probably I do.

You see, if I had a broken leg, it would be obvious. Many might understand how debilitating a migraine is, some might also ‘get’ mental health issues … though, that’s pushing it.

M.E. is invisible (mostly). It makes the person who has it look like a lazy good for nothing who is just looking for excuses not to do things, to avoid work. I hear people tell me that ‘we all get tired’. This is true but, with M.E., you don’t get tired, we ‘are’ tired, all of the time. Not just a little sleepy, but that sort of tired that happens at bedtime or, after a huge meal. That sort of tired like jet leg where the brain simply doesn’t function or, when it is, it’s like we are not fully in control and mistakes happen. Forgetting things, misplacing bits and bobs.

Sometimes I just randomly sleep, no idea I am even doing it.

Every day has to be planned, paced. I can keep going if I know what I am doing and know when I am doing nothing. The theory doesn’t always work, with the best plans sometimes it just gets too much. I am functioning but sort of not at the same time.

Many will pass it off as the results of depression or anxiety because they do tend to go along with the condition. Let’s face it, you really want to do something exciting but your body and mind are just hitting the sleep button. That’s going to lead to some emotional issues. Serious anxiety.

I have just started a new job and my anxiety levels are through the roof.

Example using today …. now, tomorrow I have a 3pm – 10pm shift. Today I was up at 07:30am. By 11am I was exhausted, barely able to communicate so crashed out in bed. I remained in bed until gone 4pm! When I ‘woke up’ I felt the same as I did when I went to bed! All afternoon and evening I have struggled to stay awake and been aching loads, every joint hurts, every muscle. Pain relief doesn’t make much of a dent.

With the tiredness comes depression, bad moods and frustration.

I, unlike many, are in my 50’s, this can affect anyone at any age. So, I get the excuse that these things are expected at my age. No they’re not thank you very much for your opinion.

I want and need to work yet, any job I can get I cannot really manage! I lie to myself and tell myself I can work on, get through it but, the reality is, it’s too much for me.

I also have tennis elbow, a result of a bad judgement call I would not normally make but I was on autopilot at the time and not fully in control. This huge pain is expected to last for a few years assuming it ever heals. The other day I couldn’t even put a damn sock on a client because it was too painful … let’s get real, most mornings I struggle to dress myself!

So, I have added a link here. M.E. comes in varying degrees, mine is some sort of middling one, not the most extreme but not the least either. It’s all the same condition though and, keeping going doesn’t actually make it better, it makes it worse if anything. I just keep going because we need the money.

I only just got diagnosed though I have had it a few years, it’s got worse the last year or so.

There is no cure


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