Visiting Dimensions

I am glad to say that I am a little better than yesterday, not great but better. I did give in a little early last night and disappeared under the duvet, were I drifted quite quickly into sleep, which surprised me as I hadn’t managed to even have my normal quantity of Gin, the proof I felt really bad, I didn’t even finish one. I am still not really with it and concentration is at a premium but I at least don’t feel like I am floating in a different dimension for the rest of the world, just on the edges looking both ways.

When everything closes off like that those are the times when I can actually sit here and full see that I am not well. Believe it or not it is easy to forget at times how ill I really am. Normal is something that changes for all of us throughout our lives but we desperately want to see it and believe it to be a universal state. Look at every decade of your life and normal has been something different for each of them. It would be great to have the normal of childhood for ever but life doesn’t work that way. My normal is ill, so how to judge myself other than that level of ill is hard. It is when I am like this that I fear I am looking at my future but I have nothing to say that is what will happen, but it is that fear that is the problem when you are living with a chronic illness.

None of us want to see our future as all of us will age and there is a high chance the last years of our lives will not be spent in good health or high activity levels. For many the vision of a old person who can’t hold a conversation as they have no way of thinking long enough to take part, sat there with life going on around them, just waiting for death, is scarey but normal. In a way that vision is acceptable, but I am only 51 not 81, and that could happen to me tomorrow, a lesion growing in the wrong place and I could wake one day to find I have left this dimension for ever. MS plays games that way, it takes things away and gives them back changed, or it can take things away and never give them back. Worse still there is no knowing which area or when that lesion will grow and how long it will take to destroy the nerve for ever.

Things being bad like this are the signs that my MS is at work, destroying something or other and it is working at a higher rate than ‘normal’. If you get a cold you get better, that isn’t the case for me. My illness is heightened and this could be my ‘new normal’ or just a visit to the future, either way it means I have to start to think about dealing with it, part of me says wait and see, but wait for what and for how long? I have learned to accept and adjust and I have always found my way through and I see no reason even if things stay as they are, that I won’t be able to do the same but my ability to do anything is going to be changed dramatically, even my ability to keep all my twitter going as well, I have been badly lost in what I have being doing, with out my spreadsheets to keep checking things off as done, nothing actually would be. I really could just sit here and do nothing. Nothing at all. I can’t see today turning out any different from yesterday, but what else can I do about it right now?

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 ans working have a routine, one that keeps them on track and in touch with everything important to them and their lives, even if they are not aware of it. Once you are ill it is easy to set that routine to one side and just go with the flow, sleep when you need to, eat when you want do what ever you feel like at the time. To me that is the way for it all to go wrong, and very quickly. I can’t speak for other illnesses on this point, but I discovered that MS is more than just a creature of habit upset it and it will kickback hard, when it is already upset as mine is just now, well it is even more important to try to keep to what would be the normal.

At this minute I am fighting just to keep my figures moving over this keyboard and my mind on the words I am thinking. Concentration is one of the symptoms that I find myself at war with frequently and especially when I am in pain. It is bad enough when there are distractions on the screen or on the TV but then add in pain suddenly somewhere and my chance of completing the sentence in one action becomes nil. I have said before that in some ways that can be good, well when a new distraction appears you forget the previous one, but that isn’t an answer to anything just a way of blundering through a day, bit by bit and without much success. These distractions are more than a moment lost here or there, they disrupt my routine and force me to become frustrated, but even that can’t last to long, as I am lost in something else. A glimpse only of the muddle that I find myself today. I have no idea how to keep myself going when things are like this, I fight between what I know has to be done and what I am able to do, I move from one period of pain to the next and through it all I am numb to even myself.

I can see clearly how it is easy just to stop, to give in and to sit there letting the day wash past me, to turn into what I most fear, the zombie in the corner. When your feelings, your thoughts and your physical being are all so muddled up together achieving anything is amazing in itself. I am so far out of my timetable today that I have had to accept the fact I just won’t or can’t actually catch up. Today is by no means a right off on the achievement scale, it is actually far higher than on a normal day, the fact that I have actually manage to write this is enough for me to be content that I can and have achieved. I hope there is enough logical thought in it for it to make sense to others.

Drip by Drip

It’s shopping day. That day when I know I will get too little rest and I will be on edge until it is delivered and I have peace again for the rest of the day. Once a fortnight I submit a shopping list on line and on the following Tuesday morning it arrives, sounds nice and simple, well it is and it isn’t.

There is nothing hard about doing your shopping on line and it used to be a way of my not buying anything that we don’t need as unlike when you are in a supermarket you aren’t walking up and down the isle browsing and adding things you don’t need in to your basket, I had a list on line set up and I just clicked the ones we needed, simple, not any longer. The theory is still there and I suppose to an extent it still works, but as my concentration is diminishing so is my ability to stick exactly to the process is simply not happening. I started wondering a few months ago, instead of 10 minutes max putting an order through, it was taking longer and longer. I simply couldn’t complete it without popping into an isle to look at the prices and add unneeded things to the basket. I can’t afford to keep doing this, so this week once I was finished I looked closely at my finished list and took out again the extras, extras that added up to nearly £40! It is hard to be disciplined with the attention of a flee and it is hard to be strict on the money, as I am still not used to the fact it isn’t there to spend as it used to be.

The delivery part is a easy, in fact more than easy as the delivery guys know where I like the bags put and always put the fridge and freezer stuff on the counter top for me as I always put them away, and return through out the day putting bits and pieces away as I go. Adam does the rest when he comes home as it would other wise take me a week to finish, well maybe not quite that length of time.

We all and I do mean all, have routines and systems that we stick to, just the way you do thing,s not a big thought out plan but habit. I seem to be loosing those habits, they are suffering in the same way as the rest of my life. I don’t think any of us realise how important concentration is and how easy it is to wonder around in a sort of daze flitting from this to that and back again. Even writing this some days is a task to make myself complete it, without doing other things in the middle, is now impossible. I have wondered away about 5 times so far just doing silly things like emails and tweets, fetching a glass of coke, looking out the window for the delivery van and so on. I am beginning to see my future as one long rambling wonder, with tiny points of structure.

It is one of those things that I doubt many think about, not the final result but the getting there. I have made plans for the future that all look at me in the worst state of all the symptoms, I have plans to deal with many things but I have no plans for the getting there phases. I hadn’t thought about the in between stages the phases were I know what is going on, but I can’t do anything about it phases. I suppose I was taking the lead from my arm, when it went it went over night I woke up with a dead left arm, I know that it wouldn’t always be an overnight change but I some how had it in my head that each individual thing would happen quickly over a short period of time, with sharp adjustments, well that is how it had been with many things, eyesight, eating, mobility, everything had happened in sharp jumps. To me that is easier to deal with, this knowing I am slowly everyday disappearing a tiny bit and it will take years to get to the final destination, with me aware of all of it, wasn’t in my plan. It appears I have some more plans to make but it’s hard to know what to plan for, worst case scenario is easy.