I just fetched the mirror and took a look at the ‘things’ in my mouth, I wanted to check them as yesterday I felt a large chunk of skin fall away from the one at the back of my mouth, it looks as thought it was just some surrounding stuff, as the main ‘thing’ is still there and no smaller. The other one although now flush with the rest of the surroundings, the colour tells that the soft fluid feeling is as I feared a sign that it hasn’t finished yet. I am getting really fed up with them mainly because I don’t know exactly what they are, that really is my pet hate in life, not having a full picture and full understanding of what is happening to me. I know that these pale into nothing compared to my MS and the other conditions that I live with, but not knowing, just isn’t acceptable. To be honest, I think when you live with already known major conditions like COPD, MS and Fibro, it strangely changes how you look at everything else, I don’t fear finding something new, but its newness is the disturbing bit. For 30 years I have lived with what to me is a known set of symptoms, yes some have come and gone, colds, flue and so on, but the rest are a known set, constants in my life. Those constants make my life more and more difficult, so when something new appears, I am inclined to look at them as something that is going to make life more complicated, even if it is in the short term. Just having to keep using the mouthwash whenever I go to the bathroom is an extra complication, having to use it after every time I eat, uses up even more energy that I don’t have, as I have to make an extra journey. No matter how small and how unimportant in the bigger picture, that small extra, caused by that small new thing, is a bigger issue than it would be to most other people.

Once your health has gone to the point that you can no longer live your life as you would expect to, anything that takes just that bit more effort or thought, somehow becomes a huge issue. Something changes, something that I don’t have the words for, inside you changes and you would rather others did things for you than you having to do it yourself, it isn’t a laziness, it’s deeper than that. Somewhere inside there is this voice that is crying out ‘Help me’, but because you don’t know how to help, you throw that plea onwards. As time goes on and as your body becomes less and less able, that voice inside cries louder and louder, but you still only pass its cry onwards at the same level as you did before, mainly silently. Eventually, you get to the point that you find yourself sitting unable to deal with what is happening to you and unable to scream out any louder as you feel you should be able to cope. You should be doing everything for yourself and those things that are too much, can be as small as sorting out a pile of paperwork, to medicating a ‘thing’ in your mouth, to a major medical disaster, what it is doesn’t matter, it is just too much to deal with. I have said many times before that I have hit that point where I just can’t cope, what I can’t cope with is everyday life, it runs away with you when your health is gone until everything is just too much and all you want is to run away from the whole thing, but that is impossible.

To some I know that will sound like it is some form of depression, I will stop those who think that right there in mid-stride, it’s not. This isn’t a mental scream that is why I said it is somewhere inside, this is a physical scream, because what is too much are physical issues. Not having the energy, or the life force if you like, to spare to do anything other than what is the minimum. Saying ‘I can’t cope’ is the only way that the English language allows me to explain it, there are no words for the feeling that physically there is nothing left inside you that will permit you to do or deal with anything more. I am more than convinced that there are many people who have been treated for depression simply because they too can’t find words outside ‘I can’t cope’, I know that I was once, but I didn’t need a psychiatrist, I needed management of the condition they failed to find at the time, my MS and the flare that I was failing to deal with myself. “I can’t cope”, “I can’t deal with it”, “it’s all too much”, none will make sense to anyone who hasn’t lived with a condition that drains every last drop of life you have, if you haven’t been there, you will see depression, well what else could it be?

Mentally I can still cope perfectly well thank you, I am as strong and as mentally capable as I was at any point in the last 30 years, yes, I have memory problems and yes, I have emotional issues due to brain damage, but other than that my brain is just like everyone else’s, physically I’m not. Those two facts alone should scream out the truth, but the majority of people somehow can’t see that, they see what they expect to see, they see what they think must be behind it, as surely someone with an illness like mine must be mentally unable to deal with that. Knowing those facts, well it means I am more careful who I say those words to and as a result, I am left more and more in a world where I need assistance, but outside Adam I can’t ask for it, as I know that the reception won’t be the help I really need. Like so many things in life until you find yourself in a situation, it is impossible to actually understand the truth that lies within it. I don’t know how we can change it, but there is as far as I can see a need for a re-education, a new understanding of the help that people with health issues really need. We can be mentally capable in every way required to deal with life, but our physical issues make it appear as though we mentally are affected in ways that we aren’t. I can’t fill in forms any longer, not because I don’t understand them, trust me I am totally switched on, it’s not even because I have problems writing clearly now due to my dexterity, I get there slowly, but because I don’t have the concentration to read through the details, “I can’t cope” with them by myself, I need them read for me, I need help and that voice inside knows it, what does your voice say about me?

Read my blog from 2 years ago today – 01/09/12 – Six hours of hell

As you may have guessed the full experience of yesterday was far more than I outlined on my brief post. In many ways though having written the bones it is now easier to add the flesh. This morning I woke with pains in my body in places that amazed me a little, some like the pain in my thighs is easy…..