Monthly Archives: April 2013

One of those days

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Tuesday morning and another day of shopping to deal with. I have to say this is one of the tasks that turns up fortnightly and although I am usually really happy to do it, today I just wish it wasn’t happening, but it’s feels like just one of those days. I don’t feel bad or anything, I just can’t be bothered, why, because I am human! I don’t know any more than you would where feelings like this come from, but they really are a pain in the neck that it’s here today. One day in every 14 I have something to do and today I just don’t want to. I suppose that is just the luck of the draw and it’s bound to happen from time to time, but shopping is the last task still under my control so I have a don’t touch wall round it, it’s MINE! Strange the things we grasp onto and won’t let anyone else near, but when life has taken so many other things, well I am sure you understand why. But here I am with a downer on normally a highlight and that feeling that I just wish I could cancel it until tomorrow.

For a couple of week now I have had the same dream just before I woke up, odd for several reasons, but the main one is I don’t normally remember dreams, ever! Each morning I have woke to finding myself pulling at the cover of the duvet, each day the duvet cover has been something different in my dream, like slices of meat laid out as they are in packs from the supermarket, or a stack of towels that I am trying to separate, but always something that needs to be separated from the rest. The dreams aren’t just vivid I am physically reacting to them, aware it is a dream and aware that I am pulling at the cover, I wake for a second put the cover straight and go back to sleep. If it had just been a couple of days I would think nothing of it, the dream isn’t distressing in anyway other than it’s a case of here we go again, something I actually said in my dream today. Being that aware of what is happening and actually being able to interact in my dream world with a somewhat logical awake response it making it It is just a rather odd thing to be happening and for the life of me I don’t know where they have suddenly come from and why I have it in for my poor duvet cover. Any ideas? Oh before some one asks, there has been no change in meds.

I just tried to kill myself, I never thought that opening the center of they bay window could cause so many problems. I haven’t had the curtain open for months now, but as we are heading into the slightly warmer weather, and because I have a flowers in the house, although I knew there was no chance of me opening the curtain fully but I was sure that I could pull them clear of the center window and open the blind there at least half way without too much trouble, wrong! It took all my strength to pull the right side curtain just 18inches, three attempts and it is now hanging at an odd angle but I can’t be bothered to put it right at the minute, the left moved with more ease but then came the blind! There is something about having my hands above my head that drains me faster than anything else. I have vassal vega, which means my heart rate changes dramatically and I faint, the Drs have said it is common that raising my arms triggers it, they also think that my MS aggravates it as well. One simple task with a result of my now feeling even less like dealing with shopping or anything. Everything together means I just wish I had left them alone and to hell with the flowers. Sorry for being moanie but I did warn you, it really is one of those days, but triggered by a feeling it is not because anything has happened to start it all off.

Just in case anyone is wondering why Adam didn’t open the curtains for me before he went to work, well he has been trying to open the curtains for a few weeks, but he doesn’t see it as warmth, just light, for heat reasons I don’t want them open before 10 am, there should be a little warmth by then. Last night he once again started offering to come home at lunch to open them and once more for what must be the millionth time since we married we had that same conversation all over again! Heat V Light, we are on the extreme ends of each argument I know, I accept that and try to compromise, he doesn’t and doesn’t want to with out arguing his side daily! I hate to see how things will be in the future, I have an image of my not being able to talk too well, getting angrier and angrier second by second through out the entire day, unable to do anything about those open curtains! If I had the money and would find a carpenter I would have the correct wooden blinds made for these windows, which some idiot removed probably in the 60’s or 70’s. Once the blinds where there I would nail them shut! I could be wrong, but I honestly think this really is the only thing we ever argue about and it always starts in November and continues to April normally but this year, I can see it being May. Last night I was amused that he came home from work just before 6, and opened the curtains to shut them again at 7pm, sunset and the point outside cools. I just can’t for the life of me see what was the point of opening them at all? I really don’t get it!

Accidents happen

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I had an accident on Saturday afternoon the has left me still slightly surprised that it happened, yes there was a large spoonful of stupidity in there and it could have happened to anyone, but it happened to me. I’m a life long smoker and I have used a zippo lighter throughout the majority of those years, so I know all to well how to fill and use one safely. So the fact that I filled it and then nearly set the house on fire, still leaves me somewhat stunned at my stupidity. Experience has taught me that you don’t use a freshly filled zippo for about 5 minutes after you fill it, but when I filled my lighter on this occasion I lit it even before I had put the petrol canister away. The second I released the spark my lighter and my hand were on fire, well the petrol that was on the outsides and it’s vapor ignited. Instinct made me drop the lighter, on the odd occasion I have ever dropped a zippo it has always gone out, this time it was on the carpet flames all over all it’s surfaces. I had to shuffle it across the carpet, so it wasn’t sat long enough to light the fibers, eventually I managed to put it out, by shoving it to the edge of the mat and shut the lid. It was still really hot and shoving it around by my finger tips until it cooled was my only option, it would have damaged the carpet if it had sat still for more than a second.

The result of this stupid accident is firstly no damage to the carpet or to me either other than a couple of burned fingertips, less burned than they would have been if I had been cooking. The only real damage and the reason that I am a writing about it, is to my ego and self belief, we all do stupid things, age is no barrier to stupidity. Often when we are doing things that feel like second nature, is exactly the time that we do things without any thought at all, I was as likely to do this 20 yrs ago as I was to this weekend and I know totally that my MS, bad memory, Fibro or anything else that is wrong with me had nothing to do with it either, but what it did was set me off on a train of thought. I realised within seconds that if Adam had seen it he would now be convinced that a lighter was a dangerous thing for me to have, he would right away have made a connection in his mind between a simple thoughtless moment, which he could have just of easily had, meant my health had been at the root of it, and he probably wouldn’t be the only one to go off on that train of thought. I am suddenly aware that millions of perfectly able people, will simply because they are aging or have a condition like mine, will have had changes put upon them by well meaning family, when there is no reason for it at all. I can see suddenly how decisions are made for us, not because we can’t make them ourselves, but because those around us feel they have the right and the responsibility to think for us.

Suddenly I can see millions of heads around the world nodding in agreement, people who have well meaning friends and family who turn up with solutions to problems that exist nowhere other than in their minds. Those gadgets that no one on this planet requires, to open thing, or reach for things, the specially designed for the less able bodied gizmos, that clutter the homes of the elderly and disabled world wide, never asked for and never used, but on display to keep their relatives happy. All to clearly as well I could also see just how it starts as well, be it the sort of silly happen to anyone accident I had on Saturday or, well or the situation I allowed to happen a couple of weeks ago. Adam came home with a bottle of multivitamin tablets, he felt that I needed them. I now can’t believe what I did, I made the first mistake that I guess millions of others have made before me, I accepted the tablets and took them. What I should have done was thank him for his concern and reassured him that if I felt I needed them I would take them. By accepting his view and accepting that he bought them without talking to me first and his assumption that bringing them home meant I would play along, were all confirmed as I did what he wanted. I have been taking the tablets for a couple of weeks without any change at all. Now I know if he had seen me light and drop that lighter, he would by now have searched on line and found a flame-less lighter, don’t bother, I won’t use it!

I don’t know why it is that people seem to think it is acceptable to tell others what to do or how to do what they have done all their lives without anyone ever helping them. I know it is done out of care and concern, but I along with most like me have a brain that although often muddled and often confused, still works. Accidents happen to me as they do to you, not everything that happens in my life has to do with MS, many are simply down to being the stupid creatures that humans are. Like many things in life, it is only when you are in the position yourself, that you suddenly see it for what it really is. I will probably have hundreds of stupid accidents in the next few years, some will be one offs, others will repeat themselves, but not all will require radical actions. I may have MS but probably in this situation the first thing that needs to be remembered is I am human.

Gaps prove the lose

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I wish more than anything that I had a tool that would record my thoughts as I cross over into sleep. I know without any doubt that every night I write in my mind the most beautiful and most profound statements, so far above those I actually write here. Before someone suggests that I take a note pad with me and writing the best of them down, well that would mean pulling myself back to awake, somewhere I’m really happy to not be at that point in my day. Strangely although I don’t remember them well enough to write them in the morning, I know with no doubt that they existed in my thoughts clear, precise and so elegant in their phrasing that I repeat them over and over again, trying to etch them on my mind and 99% of the time, they vanish, or at the least leave an incomplete shadow that won’t pull the original back into focus. Writing can at times really be a trial as I want so much to be able to say everything clearly and in ways that no one can fail to not just understand but feel. Sometime I know I do but at others, well even I reread and sit here wondering what was behind those strange words.

Descriptive writing and words are the core of what I require for what I do here, but although I am putting down words that to me describe it clearly, to another it may make no sense at all. Take something as simple as a headache and ask 10 people to describe one and you will find so many different words being used for the exact same thing. Even levels of pain fall into the same strange hole of personal opinion, your level 10 pain and mine may be miles apart, level 10 is supposed to be the worst pain there is, but you and I have in our lives not experienced the same pains on which to base this, a child might think they are dieing when they break an arm, but there are far worse pains ahead of them in life. At night though, I often do come up with those gems, the phrases I have such belief in that I at the time I have no doubt I will remember, it is perfect, how could I not. Last night I know was one of those nights, I was lain there as always on my back with my hands far enough away from my body so they can’t twitch and wake me, all I described the other day about having to control my breathing, as that gave me control of the discomfort around my ribs and down a few inches below them. The side effect of that is well known, that process of measuring each breath and being fixed on their length and depth, helps you to go to sleep, as I was counting them through I suddenly also knew that I could explain that sensation that causes so much discomfort, I just wish I could remember it right now.

I know that I loose millions of thoughts through out everyday, and I have no way of capturing them, some are for right here in my blog, other are things I want to talk to Adam about. They form, I adjust them, add to them and polish them, ready to be never ever used as once perfect they are gone. Even what I write about here vanishes, it may be half an hour after writing that I schedule the tweets to go with it, but I haven’t the slightest idea what I wrote about and have to come back and read it to find out, but this is the exception to the rule, here there is a record. These losses in many ways aren’t important but the more they happen, the more they are becoming important to me. It isn’t the forgetting that is getting me twisted and distressed, it is the fact I had something clearly important enough for time to go into it, for suddenly all record of my words to be gone, wasted, lost for ever. There is this strong feeling within me that I have so much to say, to so many different people and with my mind discarding things constantly, my chance of ever being able to do all I thought there was time ahead of me to do, is also vanishing. I have no idea as does anyone else how many years of life I have still to live, but those years don’t matter, what matters is how many years I have with a brain that functions well enough to fulfill the things I need to, not just for others but for myself.

I can live easily finding myself in a room with no idea why I am there, but finding myself looking inside constantly for all those things that have vanished into some tiny corner of my mind or vanished completely, well that is so much harder. Through out my diagnosed years I have said the same thing over and over to anyone that will listen, my body can betray me in anyway it chooses, I will find a way of managing, but my mind betraying me, is not bearable in any way at all. Slowly it is built up to a point where I am loosing almost as much as I create, I also know that some of you will be wondering how if I can’t remember how do I know it is missing. That’s simple, I can look a back over any day and know what I was doing, my scheduled tell me that, timings tell me if I was distracted, and distraction usually means thoughts. Before sleep both afternoon and night there is always a space for thought, if I can’t remember what they were they have to have vanished. Add on the feeling of exuberance in knowing I have something great, well the exuberance remains as a shadow, a knowledge of something great but the great thing is missing. Every time it happens I know I have lost something, maybe more important to me than to anyone else but it kind of hurts. I think it hurts because I know that it means I am loosing that bit of control, I have enough things in my life that are out of my control, but this one is growing faster than the rest at the moment and I simply don’t like it.

12 hrs and counting

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It happened! That thing I’ve skirted round and feared to write as it might have been the last bit of temptation required for my body to make it happen, yet with no invitation at all I crashed last night at 7:45! I didn’t wake again until the alarm clock demanded that I paid it some attention, 12 hours of sleep strangely feel identical to 8 or 10, or even my average of just 6 that I used to work on. I wouldn’t mind if sleeping made me feel better, believe me I would stay there for several days in a row, if it meant that I would have one complete day of just feeling well. Although I moan about sleeping and I often feel guilty about it as I do realise that it is actually a blessing for most people with MS to sleep well at all. But it’s kind of odd to be thankful for any illness, yet strangely I am, if I had to have MS I would choose to add on Fibro, they may make my life hellish at times when awake but the combination I have to say is a gift, an odd one yes, but still something to be thankful for.

Since I have now actually reached the 12 hours straight at night with no difficulty, I am left wondering just how far this can go. Like so many things that in my heart I believed just wasn’t possible for an person to do without medical assistance, it has sparked those follow on questions. I’m sure you don’t need me to spell then out, but this is one of the strange side interests that illness brings with it, what is it actually possible for my body to do? I think from long before I was diagnosed with any of the conditions that I share my life with, I had already begun to be surprised by what my own did for no reason at all. For years I had spells of sleeping large numbers of hours, hard to deal with when there is a toddler in your home, but they happened. As did the sections of pains, and numbness that drove me made, wore me down and landed me up being treated for depression. The strange thing was that I always felt better when I was prescribed Amitriptyline, the drug of choice in those days for depression, now the drug of choice for nerve pain. I was never convinced I was depressed but when I said I was exhausted and just couldn’t cope with life, I was told I was depressed. Now I know it was Fibro and MS in their early phases, the treatments I was given accidentally was the right one, but that was luck and luck only.

The year Jeffrey was born I remember having several period of having problems dropping things, my hands just not working properly. I had a lot of time on my hands in those first 3 yrs of marriage, waiting for my job of being a mother to actually begin. I used those long hours to make clothes for my as yet not born family, I knitted, sowed and crocheted, but I would all to often be unable to manage at all, diagnosis of medics, was arthritis, an interesting one as there was no swelling or redness to my joints, but there I was with hands that didn’t work. I also remember my left leg would often go dead, not when I was sat down or asleep, it would just go from under me, diagnosis sciatica, but no shooting pain down the back or my leg? I even went blind in one eye for about 4hrs, I was in hospital at the time and one Dr came to see me, she just told me to sit still and see if it went away, it did, but no more attention was paid to it. Now 30 odd years from those small starting points, I now can’t think of one part of my body that actually hasn’t manage to make itself known through pain or hasn’t manage to do something I just didn’t think it could do. I had this mad idea when I was a kid that my body was here to carry me around and allow me to do the great things in life that I knew were out there to enjoy, now, well it has become an amazing place to be on it’s own, I doubt that it will ever not be a surprising place to be as it comes up with even more unexpected events to enjoy or not.

Progression means that those events in my life are getting closer and closer together, and their affects are more intense. Now I can’t think of a single day that I could list as unaffected, or uneventful in what my body throws at me to deal with. I am now feeling and noticing the progressive side of all of this more and more, I have passed that tilt point I suppose, the point where there are no longer breaks in anything they just keep going and slowly getting worse. Where I used to have the odd spells of numbness somewhere in my body, now I always have some point that is numb, there is never a moment I am aware of when there is nothing numb at all, the same goes for all the other symptoms as well, they are no there all the time. Probably this is why the gift of sleep, although annoying as hell as it reduces my life dramatically, has proved itself to be a true gift, sleep is a wonderful relief from it all.

Destroyed in 600 seconds

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It’s 9:50 and for the last half hour I have found myself struggling already to stay awake, retreating to bed feels like a wonderful option, but one clearly I can’t take this early in the day. When I woke yesterday afternoon after once again taking a longer nap as I did the day before, I struggled until Adam came home at 7:50pm from work as he was once again had taken the much needed option of overtime. My afternoon was very much like they have been for the last few days, with everything online completed before I slept, I was able to spend sometime to myself, just playing a game and taking things slowly. I discovered that the newest in the series of “Virtual Villagers” off shoot “Virtual Families 2” has been released so once again I am now bringing up a family with all the issues that families have, well at least the ones the programmers have put in their way. It’s really strange how relaxing games are like these, they take time there is no shoot outs, and life is virtually real time, as in a day is a day but that day is packed with events which are more like 5 years worth. I expect just to complete all of it will take several weeks but that is what I like about them, they don’t leave you feeling like you have been concurring amounting in 15 minutes. Because they are so laid back I can play something more brain taxing at the same time if I feel like it, but being new, well on it’s own is fine.

In all yesterday was an upbeat good feeling day, not just because of my game but I had also spent time arranging the flowers Adam brought me, on the scale of relaxation and gentle paced, it was a 10! On the food side well with yesterdays Chinese sitting in the fridge, I had plenty to finish off that was packed with veg and so on, but I also ate half a melon, my favorite fruit just now. Nothing about the day pointed towards anything but the positive, when Adam came home I felt fine and I was looking forward to our evening, but I also know his routine, which he followed right through to snoozing on the settee. As Eastenders fished I went to the loo, but as I stood up I suddenly felt terrible, it isn’t anything new to find myself standing at the edge of my settee, with my hand on the head of the bronze dog to get my balance, feeling really strange. I don’t know why I insist in calling it strange as when somethings happen frequently how can it still be strange? It is an odd sensation though, I don’t feel light headed or anything like that, but I frequently have this cold sharp shiver go from the base of my neck right to my feet and as it travels, I start to feel numb in different areas. Usually there is this a numb and chilled feeling on one side of my face and numbness that travels quickly but slow enough to be able to track it’s coarse, out over my shoulders before merging into the traceable shiver. I have to stand there letting it run it’s course before trying to walk, it is only seconds that from start to finish, each muscle group that it touches spasms briefly in response, making me flinch in response. If there is a connection I’m not sure but I have noticed that it always happens when my legs are equally bad and walking is a painful process. After a day that had been totally positive, I crashed in less than 5 minutes. By the time I had been to the toilet and I was walking back to the living room, I was at check out point. I had to head to my bed, not back to the settee, as I felt so awful there was no other options left to me. I know that it didn’t take me that long to go to sleep, but even my breathing was effected, the pressure band was there across me but it was the clearest and worst I remember it and not only was it across my front I could feel it cutting my in two, as it went from front to back, not on the surface but slicing through me. Last night it wasn’t it’s normal narrow band, but had spread right up the front of me, giving the left side of my chest a heavy feeling, deep breathing wasn’t painful just uncomfortable, so I consciously slowed and reduced my breaths until I found the point that the discomfort settled to bearable, a shallow slow pace which is totally controlled. I think I was asleep in minutes, either that or I just don’t remember.

None of this is new, it’s just it all happened so quickly last night, in less than 15 minutes I had gone from awake watching TV and feeling find, to being crushed by pain, numbness and totally unable to function, to totally unconscious. So much for my idea that sleeping more in the afternoon might give me a way of staying awake in the evening. This I know is an extreme example of crashing out, but it’s one of those things that make living with many chronic illnesses difficult. When your body can drop you from happy awake and enjoying yourself, to the pits in less time than anyone would need to even get home, you can see why so many people can’t hold down a job, or stop having a social life as you have no idea when or if this will happen. I guess that around 4 or 5 days a week, this will be my end of day, normally not so drastically, it is usually at a more reasonable pace, over a time spell of 20 to 30 minutes. But most nights I do have a reasonably sudden drop from fine to needing to go to bed, without any possibly of making it to the end of the program I’m watching. It is the speed these things manage to happen in that makes them so odd, it is like compacting the normal process that takes a couple of hours, into a mad number of minutes. Although many of the things that happen in those minutes match up with MS, with the pain, numbness and so on, but all the sleep problems, included in the crash speed I am now quite sure is more the Fibro. The two of them do seem to enjoy triggering each other into complementary actions. It’s now 4 months that sleep has dominated my life, but during the same time I have also noticed that increasingly there are huge areas of me that go numb, a bit like the circulation has been cut, but when that clearly hasn’t happened. Right now my right hand, the right side of my head and my left foot are all in that state, tingling and numb. It started a year ago with the pressure sensation under my ribs, little changed for a while then suddenly in December there was a kick start of all the other symptoms, but I can’t see why? My hated state, I always want to know the why? I guess there couldn’t be worse conditions for anyone like me to have, everything must have a reason, unless they are called MS or Fibro!