I just spent 10 minutes on and off fighting with the fire, it’s the firs time in ages since I tried that and I seem to have lost the knack somewhere along the line. The biggest problem was I could only stand there for a few seconds at a time, there was no way I was going down onto the floor. I know it would probably be a depressing thing to do, but I sometimes wonder if I should have made a list years ago of all the things I did without thinking about it and ticking them off as they vanish into the realms of impossibility and the reasons why, as it really would of supplied a clear picture of my progression. Tracking your symptoms is one thing, but tracking their impact is a much bigger and probably more realistic way of knowing just what your health is doing to you. I suppose that I could start it now, but I am at a point where what I do is virtually nothing, so it might not be that valuable.

It never ceases to surprise me just how little I do, yet how tired years of doing nothing can really make you. I actually don’t like that word tired any longer, not just because I am fed up saying and writing it, which I am, but because it doesn’t really cover well enough the range of feelings that it is used for. To me that word tired describes what I remember as being a really good feeling, it was that ready to sleepy glow after a day well spent, when you knew that your activities, be it work or fun, had used the energy you had and that your sleep had been well earned. Now, it’s stock answer whenever I see that inquiring look on Adam’s face, the one that says you don’t look right, but what I am feeling is nothing like the word that I use. The most common feeling behind ‘tired’ these days starts with waking up and ends with waking up, it is the background feeling to my entire life and has been for many years. I remember this feeling the most from all the years before my diagnosis, it wasn’t my first symptoms but it became the one that recognised the quickest and always told me that I was once again in a spell of being of no good to man nor beast, even less so to those who relied on me. I am sure somewhere in the past 13 years, there must have been one day when it wasn’t there, but I don’t remember it. No one, not even Adam, unless he is comparing me to the person he met, would even notice this type of tired as no one even me, knows now what I am like without it.

The next most common is so different that they are black and white, it is a tired that come from spending a day in pain with muscles exercising themselves by performing spasm after spasm. I have actually wondered how when a muscle contracts so tightly it causes pain and does it repeatability, that I now seem to have no muscle tone at all, I guess my inbuilt “Slender Tone” is broken somehow. Pain has to be one of the most draining things I have ever discovered. There is nothing nice about that tired, it is drained, pinched and desperate, a feeling that just lifting your arm again, or standing is going to be too much and it’s not just your body, but your brain is depleted too. I actually at times feel that even the whole process of going to sleep will be too much for me, I don’t actually know what I mean by that, other than that is how it feels, anything is just too much, too much what fills that grey area I can’t quite put my finger on. The closest I can get is to say that just like muscles you over use become fatigued, my entire body including my brain has found that same fatigue all at the same time, but rest alone isn’t enough and it feels like sleeping isn’t either. You might think that is exhaustion, but it’s not, exhaustion is different again. Exhaustion is being locked inside a body that has all the clear variations combined and then some, everything that is you is drained as well and an attack of the killer zombies has taken place just for good measure. You just want to shut down where you are and if you never woke up again, well at that second, you just don’t care, all you want is everything to stop. Noise, people, conversation, light, breathing, eating, keeping your eyes open, being part of the world, is all too much, so you go into shut down.

In many ways tired is a state of life, it is the surface proof that I am still here, as I may not feel anything else at the moment, but my old friend ‘tired’ is always there. I also bet that once I have closed this post, I will realise that there are more versions, ones that escape me at the very moment, but there is one thing I have no doubt about and that is the English language with its millions of words for things we have never heard of, fails totally when it come to describing anything that is connected to health. The whole thing, of course, is made worse by us having so many regional variations, it doesn’t make life easy when talking to either doctors or those who just care. I often wonder if it might help all of us if everyone wrote down what each word like ‘tired’ or all the different types of pain, truly feel like to them, then a definitive list with detailed descriptions was given to each of us who are chronically ill, just so that we all could at least understand better the personal effect of their illness has on them. That is, of course,the one thing none of us can change, lists, common language or not, illness is personal and what I feel, might well not be what you feel, yet so many tell me I seem to have been inside their brains, so I can’t be far off some of the time at least.

I suppose it is very true to say that nothing in life is easy once you are in my position, but PRMS isn’t the worst illness in the world, I know without even thinking about it that there are far worse things out there to be told that you have. I know that when I write it is my main conditions, PRMS, Fibromyalgia and COPD that have the clearest lines here, but it doesn’t matter what your illness is, there is so much that we all share and ‘tired’ is just one of them. It is also a word that I recommend that you stick to with those closest to you, I also realise that I have just destroyed it use for me, as Adam will read this, but to date just occasionally when Adam looks at me and asks with his head slightly tilted if I am OK, I have got away with just saying, “I’m fine, just tired.”

Please read my blog from 2 years ago today – 12/10/12 – The Zombie in the corner

I wanted to and still do want to disappear back to bed, it is hard these days to fight against that desire, but I know that I have to as I can’t let myself slip out of routine, not even for one day as I know all too well the consequences of it. Everyone when they are fit and working have a routine, one that keeps them on track and in touch with everything important to them…..