Balance

I don’t feel well today. I didn’t even want to get out of my bed, but I pushed myself, forced myself to get dressed, just because I was awake, not because I felt like it. We often take the physical attributes of a situation, like time, and totally ignore the way we feel. Take meal times as an example, how many meals have you eaten because of the time of day, not because you were hungry? So there I was this morning, looking at a clock that said 7:35 am. I could have gone back to bed, the alarm wasn’t due to go for nearly an hour, but was there really any point in going back to sleep then? Was it going to be worth it? I think that I made the wrong choice, I chose to get up when going back to sleep for that one more hour, was what I really needed. I still can’t understand how I can get up, after ten and a half hours sleep, and still long, for that one more hour. What on earth has happened to me, that sleep is the one thing that I have now grown to hate, yet at the same time, yearn for more than anything. It feels like some kind of pariah, that lives in the middle of my life, clawing at me and always trying to drag me into its clutches. Sleep may well be my escape from pain, and everything that is happening in my life, but it has also become a prison that I just can’t escape.

I have this image of my future life where all I really do is sleep. A life where I wake to take my meds, to eat, to go to the loo, then, just go back to sleep. In fact, there are days right now, where I honestly believe that I could do just that, and do it without any great thought. If I didn’t have this, if I didn’t have the drive to keep writing, to keep active online, I would do just that. Crawl into bed and sleep. Today is one of those days, where I almost fear blinking, as I am sure that that second of darkness will be enough for it to win, that the balance would just shift. That I would land up sitting here in front of my PC, sleeping until my spine can’t hold me upright anymore, and my head drops slowly forwards until it finally crashes into my keyboard.

Life shouldn’t be like this, it shouldn’t be that you fight every second, just to stay awake. Every new day should be a joy, a place you enter with excitement, searching for those unique points that make it intriguing, that make it more special from the rest. I guess that’s the problem with routine, you know it is safe, you know that your day is protected, secure and somewhere you’re able to cope. You can’t have both. You can’t have the joys of the unknown because the unknown isn’t safe and mentally, that just freaks you out. So, life became safe, secure, always the same with just one highlight, the sleep that lets you escape. No, I can’t have both, it’s impossible as my  health won’t let me.

I made the decision to change my routine this morning, I changed it by just 55 minutes, and now I am paying for them back. I got up early because going back to bed seemed pointless. Four hours on, I am still paying for them. My body is still craving those minutes of sleep that it missed. It sounds simple doesn’t it, just go to bed now. Go into the bedroom and get into bed and sleep, but of course it’s not. I would have to pay for that later, as I would then be out of routine again. The fluid lines of my daily routine, the step from one task to another, would then be broken and I would pay for that too. When I first brought routine into my life, it was my saviour. It gave me the structure that I needed, a mirror image of a work-life routine. It improved my life no end, I felt as though I once again was living, not drifting. Our perception of our own lives is so important, we all, ill or not, need to have that continuity with the outside world, even if we have nothing to do with it. What I didn’t allow for is my crazy brain, the one that can’t stand it if an ornament it out of place. What I didn’t expect, was that it would in time transfer that to every part of my life. That the majority of the time, I would land up feeling lost, under pressure and scared.

I knew from my past, that I get physically terrified by the unexpected, where continuity should exist. Having experienced total terror, when I arrived at work to find the layout of my office was unexpectedly changed overnight, I walked into a room I knew, but I felt like I had stepped into an alien planet. I was totally lost and totally terrified, unable to make my brain accept that they two places were the same, and unable to make sense of it. I had never felt anything like it, but that intense panic still haunts me to this day. 16 years on, and my brain is now bringing that terror, into my everyday life. Routine is becoming something I daren’t now change. It has been slowly building, increasing in it strength and determination to make me pay for even the slightest alteration. All it takes is for a problem to occur with my PC, or one of the sites that I use, and that terror starts to build. If I find myself running too far behind for comfort, again I find myself feeling scared. What of? I don’t really know. Getting up those few minutes early, was supposed to stop that happening today, but here I am, now fighting against what supposed to have made life easier. That panic is also the reason, that I now have to start preparing at least a week in advance if I know, I have to go to the hospital, or if someone is coming here. Interruption or not, that day still has to appear, as though nothing has changed, as though I have been sat here, just as I am now.

I can’t be sure, as I wasn’t in their minds, but the panic I have seen in the eyes of someone with dementia when they too are lost, looks just like the panic that I feel. I have only seen it a couple of times when I was visiting an old people’s home. I can still remember how terrified they looked, not just scared, but so lost, that it was hard to witness. The part of my brain that deals with all of this is slowly increasing its effect on my life. You can’t escape your own brain, you can’t manage what is unmanageable, all you can do is try to work with it, and hope that somehow along the line, you find the right balance. I guess, that is all any of us can do.

 

Please read my blog from 2 years ago today – 20/04/2014 – I want me back

Four days ago I gave myself a shack and set about once more trying to do all the things I am meant to for my health, including once more bladder training. I have lost count of the amount of times I have done this and yes I keep up with it for a few days and somehow it all just slips back to normal. I decided because I knew that I was carrying a large amount of fluid that I would take my Frusemide every day for a few days, just to help shift it, I haven’t actually stood on the scales but I swear I must have lost a stone in weight, I can feel the difference, not just in my pyjamas and dressing gowns, but in every step I take, I am totally aware of how different my legs feel and even my stomach, silly I know but that is what is happening. There isn’t any point in me standing on the scales as I haven’t stood on them now for over a month, but I find I…..

Pain Clinic or not

Right now I expected to be having a shower and getting myself ready so that I would be ready to go to the pain clinic, yes you have guessed it, I’m not going. It isn’t my choice but not long after I finished yesterdays post the phone rang, it was the ambulance service, they had been sorting out the routes for today and realised that I wouldn’t be free from the clinic until after the service had ended for the day. Apparently it was a new member of staff who had taken the booking and hadn’t realised that it was outside their working hours, somehow I don’t believe that, if I had a penny for every time that excuse had been used by a company well as they say I would be a millionaire. Clearly I have had to call the hospital and get an appointment that is within the normal hours, this means that I now have to wait 10 weeks to the 8th of February. I was at first annoyed and disappointed that yet again I have wait, but at least they noticed and worked it out before I was left sitting in the hospital with no way home. On the upside I though I am glad in a way as I would rather be going there feeling a lot more like me than I do at the minute, it’s really hard to make myself understood by strangers when I am having problems getting my own point across to me, without trying others too.

I am so lost this week as to what date it is and what is happening when, I had booked a slot just before Christmas for the final shop, I thought it was for Tuesday next week, I have a little calendar on my desktop and I suddenly noticed that next Tuesday is Christmas day, I actually have the slot booked for Friday, all kind of silly as I could have just bought it all and had it delivered last Tuesday with everything else I bought. I just have no control over my mind at the minute, no ability to even hold onto what day, month or anything else it is, I haven’t even sent the cards to my family, I’m just so confused about all the normal things in life, the day to day ones. I am loosing my grip on them is what my mother would say, and even though they are her words, I have to agree with them as that is how it feels. I am loosing my grip on the realities of simple everyday things. I never seem to know what time it is, despite there being a clock on my desktop, and without my spreadsheet I would get totally lost, but that only keeps me in line with what I do here, and all the things I do on line are taking more and more time, not just a morning but a day, well at least the parts of it that I am awake for.

It is a strange world to live in and a strange place to be not knowing, not understanding and not being able to do today what I did last week or the one before. Concentration, that is the biggest issue, not just when I am trying to write but even in the last couple of evening when Adam has been trying to talk to me I have got lost, not heard what he said or understood it. I cover it and move on because I’m embarrassed, being a lost confused mess when you are alone is one thing but when others are here, totally different. The other day when Jake was here I kept loosing it, I kept trying to keep up with him and kept trying to say the right thing. I know that everyone knows what is wrong with me, but it doesn’t stop me wanting to be who I was, especially to those who knew me when I was me. When it is just Adam and me, well I don’t stutter so much, I joke about my lost words and shut up when I can’t keep going, all those things to others seem so wrong. So I sit there winding myself up and making a bigger mess with each word, getting more and more embarrassed and more and more muddled.

I sometime wonder if the fact that so many people in my position loose the friend they had, not just because they slowly get fed up coming, but also because we push them out as it is easier to exist in a smaller more controlled world. One that means we don’t have to worry what our bodies will do next, what amazing, ridicules and stupid thing it will embarrassed and humiliate us with. I don’t think I did, but I can’t be sure, there is a nagging doubt that says maybe, just maybe I did.

Mind Journey

I am already feeling sorry for Adam, I kept snipping at him last night. Any opportunity and I answered in a fashion that I wouldn’t normally do to him. I am stressing and I have to stop it! It is only Tuesday so I have no idea how I will be by Friday. Yesterday, thanks to having to sort out the transport I got myself wound up about the whole thing, but getting it across to Adam yesterday that I wasn’t worried about where I was going or who I was seeing wasn’t easy, he kept going back to where it was in the building and when I snapped for the third time he took the message and shut up about it. This morning I am more myself again, but that is easy to say as he is at work so there is no one to talk to and no one to snip at.

I touched yesterday about the feeling there is when you are out of control of your own mind and duality that appears in your life, what I didn’t say was that this really is a problem all the time not just when a big stress occasion appears. After the pain and fatigue, the next thing that I was aware of early on before I knew that it was MS, was the effect there was on my thinking. I can see clearly now how others saw it as depression and being quick tempered at times, what I couldn’t explain to them or even to myself was the strange feeling that grew all the time of not being in control and having these two sided conversations with myself. It is one of the main reasons for my life now having to be ordered, but when you are standing in tears in the middle of a shopping center because you are suddenly lost, with half of you telling you to stop it and pull yourself together because you have been here loads of time, the building hasn’t changed it is just a couple of shops, and the other side is telling you that the world is upside down, what do you do then? How do you tell the people starring at you that you are fine, just lost inside a building that I haven’t been in for 2 weeks? It was often easier to let people believe that I had a problem with crowds, or lifts, or even escalators than it was to try and tell them the hell that was in my head. New buildings I had never been in I often avoided or made three or four visits going a little further in each time until I was comfortable to be there. Shopping centers were really the worst, the shops change all the time, so when you find what you know wasn’t there, everything spins into terror. A new shopping center was even worse as it was a case of shops I knew, as they all carry there brand, beside others I knew but I hadn’t seen that combination before, my brain would start screaming all sorts of information at me and I had to get out.

If I am totally honest I think becoming housebound was in many ways a blessing. Apart from work I had already given up going anywhere else, partly because it was all so physically tiring and difficult, and partly because I just couldn’t deal with it all. The outside world wouldn’t stop changing and I couldn’t keep up. It isn’t agoraphobia, not at all, big spaces are often better than small ones, as turn round enough and you will spot something you recognise. The outside world was hard to deal with 5yrs ago, I know and need no doctor to confirm it, it is worse now than it was then, I also know my emotions are right on the surface now, so I guess I would be in tears more than not. I have to admit fully that I don’t think I would last a second out there by myself any longer, even if I had Adam with me, because there is no way of bringing the logic into control of all my mind, I don’t think I would be any better with him there or not.

I know the lesions eat away all the time, they get bigger and they increase in their numbers, I hate to think how my brain looks now. I remember the first Doctor who thought, as it was not his field, that I had MS, was convinced by just seeing my MRI that there was no doubt I had MS. He told me then that I more damage to my brain than he had seen in many patients who had had multiple strokes. I suppose that I should count myself lucky, lucky that I am still in as much control of my life as I am. As I said yesterday, it is the future that scares me, how long will it be before I can’t deal with my home, how long will it be until I loose control of everything and what then?