Onward and downward

I called yesterdays post “Spiral” I didn’t fully realise at the time just how correct that title was. I was struggling at the time when I was writing, I could feel it growing and growing as I worked down my post, by the end it was almost sentence by sentence, I had to keep changing things as what I was writing often appeared to be gobbledygook, I just hope I caught most of it. I am warning you now things aren’t much different today. When I finished my post I set up the tweets to publicise it and found myself unable to do anything else, my exhaustion had hit a point where I felt physically sick, my body was getting colder and colder, well that is at least how I was perceiving it and my brain was screaming at me, with a loud piercing white noise, one I knew all to well, yes I had been there before and I am sure I will be there again.

Last year I wrote about a couple of really strange spells where I felt like I was lost in time, that I didn’t belong here and my mind kept pulling me to strange places, understandably time periods that I have a great interest in, well don’t worry it hasn’t fully happened again, but I do have a new angle on it which makes last years episodes more understandable. I was having that feeling of not belonging here again and I don’t know why I suddenly understood what was going on, the more exhausted I got, the less I was able to deal with my everyday life, a life surrounded by technology that I was finding harder and harder to use, almost as if I were forgetting how it all worked. I became more and more frustrated by everything, even my e-cig became a monster with stupid buttons to push and when the oil needed refilling I almost burst into tears, not my normal reaction to life, but at least I had my friendly real cigs, nice and easy to use. Even the TV was getting the better of me, programs ended and I was faced with a remote control and sign on the screen telling me to do things, things beyond me, like pressing buttons I press multiple times every day. At 12:15 I gave in, I didn’t even switch things off, I just stood up and went to bed, setting the alarm for 2 hours, I still had so much to do, but I needed to stop. It was my second run at the day, that all sort of fell into place for me, I realised that my feeling of not belonging was tied to that feeling of not being able to work with the modern world, the past doesn’t have computers.

I crashed through badly what was left to do out of my day, apart from the posting picture on twitter, that one was a step to far, it took me to just after 4 and I returned to bed, no alarm this time, I couldn’t be bothered even trying to set it and Adam would be home so worse case I would be woken by him coming home. As it turned out I work about ten minutes before he came through the front door, I had slept away in total just less than 4 hours of my day, on top of my 11 hours the night before that was a rather bad show to say the least. Sleep seemed to be easy and despite it I was still in a total mess, I didn’t even try to come back up here and get on with things and I had loads I could have been doing, the new Quote site (www.quoteandquote.com) went live yesterday and the piece I wrote for them was there for all to see, but I couldn’t even return the favour of publicising my blog, by doing the same for them on twitter. I did nothing all evening but sit and talk with Adam about what was happening and sort of watch TV, I had it in my mind that I because I had slept so much during the day that I was going to push to stay up an hour past my normal time, it was a plan that fell apart after 20 minutes, I was back in bed and asleep with ease, waking briefly to go to the loo at around 6am then out again until 7:30.

So how do I feel today? Rotten! I am once again ice cold and layers of clothing don’t seem to keep me warm as I was when I woke in bed, but I have a plan for today, one that I hope will let me rest more and feel happier about what I am doing on line until I feel more like myself again. I have taken a huge pair of scissors and trimmed the whole thing back, the bad thing is no one will see that until tomorrow as I work a day ahead to allow for the odd bad day, this is now several in a row and there is no catch up room left, at best I am falling even further behind. I’m here and coping just, I am a long way from my normal self, but I have no intention to let people down yet, yes there is a “yet”. Yesterday I managed to be awake for a total of 9 and a half hours, today so far I have managed 2 but I know I won’t be here until my normal afternoon nap time, that just isn’t going to happen, as I am failing already. I knew the last few weeks had taken a lot out of me and pushed me harder than any other time I have been through in a long time, will I learn from it, probably not, it takes a lot for me to give in or give up, I said I would write every day and I will, if I make my word count, well I guess we will just have to wait and see.

Adam was more reluctant than ever to go to work, but he went, as I said there is nothing he can do, I am either awake or asleep and in neither will him being here make an difference. He tried to get me to call the doctor, which I personally see no point in as he is simply going to tell me to go to bed and rest, something I have accepted I don’t have a great deal of choice about, possibly I could go there before I hit the bottom and can’t move, but other than that what can a doctor do to help me, nothing.

Read my blog from 2 years ago today – 21/08/12 – Moral Injury > http://bit.ly/Rd2Gqn

Future shut down

I guess able bodied or not we all have fears and strange things that fill our minds for no reason at all. Understandably for some one with a progressive illness, I dread for what is to me, the start of the worst case scenario, being paralysed. I know from personal experience just how suddenly a limb can vanish and turn into just a dead and useless weight. I was really lucky that my left arm died as it also returned, not as it had been in the past, but weaker with even further lose of dexterity and a speciality act of dropping almost anything things, that the right hand would hold. My arm vanished over the space of a week, it just didn’t work quite as it should and then one morning I woke to find it was gone from the elbow down. The whole thing left me with this fear that if I am going to loose anything else it will happen when I am asleep, which is now how I spend the majority of my life. Yesterday afternoon my mind did one of it’s powerful memory games, I had just got into bed and made myself comfortable when for no reason I “knew” I was paralysed, I wasn’t of course but my mind did an instant job of telling me so. I lay there for about a minute, almost scared to move in case I really couldn’t, as I moved my leg there was a shearing pain in my spine which stopped me for another few seconds before trying again. I don’t know where the pain came from as I didn’t have any pain before going to bed and I have had none since, but it didn’t help when it came to the imagination game. I guess we all have mad things in our minds but when you combine it with fact, well it opens up your imagination to go anywhere it want to.

Imagination aside I do really fear that day when I loose one or both of my legs. Loosing one arm makes life really difficult, but apart from my wheelchair over a few weeks I found a way round everything, but loosing a leg or worse still both, I really don’t know how anyone copes where a wheelchair is of no use. I know that years ago I landed up on crutches with one leg in plaster, that wasn’t to difficult, yes there was quite a lot of spilled coffee but other than that I coped OK, it really is loosing both that scares the hell out of me. I have had to put a lot of thought into the future possibilities as I have no other option when it come to where I live, so what ever happens next, has to happen here and has to be worked around to live in this environment. Try it yourself, just look at where you live and imagine how you would be able to manage. It isn’t one of those things that any of us think about when we go to by a home. Not once did we think about the possibility that one of us might be housebound in the future, we bought our flat just a year before they diagnosed me with MS, but even then I didn’t imagine that consequences of that happening so quickly, if I had, we would have moved. We all walk around believing that our lives will be simple and straight forward, but the stats says that we are actually making a huge mistake in doing so.

I seem today to be having one of those not quite here days. It’s taking me a really long time to sort out what I want to say and add on to that my typing has gone completely made. I normally touch type but I just can’t find the right key and I am also hesitating over the next key to hit, as they stop and hesitate then hit the wrong one. It is taking ages as I can only types one sentence, correct it and then sit wondering what the next sentence might be, some are taking several minutes each and even then I have deleted loads as the just made no sense at all. In other words this is turning into a long slow process. It is as though my body wants to go into shut down and just sleep where it is, unfortunately nothing new there then. I could try and blame it on staying up late last night to watch “Dr Who” but that was only about 40 mins to long, not exactly pushing my body to the limit and beyond. If I am being 100% truthful I don’t think I have been awake now for several weeks and with no change to my medication it has to come down to me being tired without any help. Living constantly with this feeling of being on the edge of shut down does in itself get tiring. It makes everything more of an effort and everything more draining than it was before, it doesn’t matter how easy the task should be, it will steal more energy from the already depleted stock. I have tried to trace back the point where I stopped sleeping standard times per day and it appears that it was about 8 or 9 months ago, about the time I stared having problems with my diaphragm and breathing. Combine that with my MS and I guess the reasons are clear, but I don’t want to loose any more hours as my life is getting shorter all the time, not as in I will die sooner, just that I will sleep through more of it. Yet another thing I was never warned about, or discovered could happen, I can’t help wondering how long I will eventually land up spending in bed out of any 24 hr period. Mind you the way I am feeling at this second in time, I may be spending many of those sleeping hours here instead of in bed.

Giving in to it

I am really not enjoying myself so far this month I haven’t had a single day were I was content with anything, moaning and feeling that I can find fault in anything isn’t the normal me at all. I don’t have the slightest idea what is up with me but I know I don’t feel right in any way at all. The insane temperature lurches are really driving me mad, it doesn’t seem to matter how many layers or how few, I am either dripping in sweat of freezing, but worst still is when I manage both at the same time. Yesterday passed as a day at just the right temp but I wasn’t feeling well, much of the day I felt nauseous again and I was living on my anti sickness tablets, they work well but they don’t deal with the stomach pain that seemed to be constant. With stomach pain of course also come increased pain around my ribs, as you move around to relieve your stomach and land up putting pressure on my lungs. I almost wish that someone would make me a body brace that would stop my hurting myself, by holding me in the best position possible. I slept for 3 hours in the afternoon and the relief that it brought was short lived as within minutes of getting up again I was right back where I started from. Adam came home just after I got up and he could also see clearly that I wasn’t right, but sharing it didn’t help as it seldom does as there was nothing that he could do.

It all increased over the evening and despite a good number of hours asleep last night I managed to wake this morning still feeling really bad and with a huge desire just to return to my bed. From my toes upwards nothing is right, and nowhere is comfortable, as I said I feel like I am some sort of moaning Minny but when I feel like this it is hard to think about anything else. I think we are all the same when it comes to that one, we might try to put on a happy face, but when asked the truth comes out to ourselves even if we don’t give it to those who ask. I guess the working world would become a place of multiple suicides daily if we did, could you imagine if everyone actually did say how they felt and in detail? It would quite quickly go beyond depressive for everyone. I know all to well from the stomach pain I have had in the past couple of days that I really need to go to the loo. My bowels haven’t exactly released anything in the last week and a bit, I’m not so sure how big that bit is, it could actually be as much as another 2 weeks. That’s nothing new, but I do know it isn’t actually very good for you so I suspect it is well past the time of some extra tablets, something to remember for tonight.

There seems to be so much chasing around in my head at this minute, if I could just get a hold of what I have to organize, with solicitors and so on, plus all the normal daily routines that I have let slip, I know I would feel so much better, but I am just spinning around achieving nothing. I just don’t feel up to doing it all at the moment, but the silly thing is I actually feel this way because I haven’t managed to get thing done. I am therefore caught up in a never ending circle and I don’t know where to make the break in it, so that I can sort out which comes first. When you life is driven by one huge force that you can’t fight it is hard to get past it, I already get as much sleep as I can, but the drive to head back to bed and sleep more just grows. It is like living on drugs, there is this totally force and need that takes over your life and you have no way of dealing with it, other than to give in. I have tried to cut it down, to break the addiction but all that happens is there are small areas of success, followed by returning back to exactly how it was before. I don’t have a choice, sleep is the only option that breaks that incredible erg, the more you fight it the worse it gets.

There just are no simple answers to anything just now, I feel so out of control and so unable to catch up that I just sit here starring into space, hoping that somehow it will all fix itself. I am going to take the option again of sleep, but I fear that like all other spells that I sleep in the day, the result will be I am even more tired and more desperate to just sleep again.