Joyus

I have for years now, taken enormous pleasure in simply going to bed. It was the one place where my body was cocooned, which meant that the twitches and mini spasms didn’t shudder through my entire body. Even the next stage up, on the scale of spasm, seem to be reduced in their pain and their worst effects were held at bay. I have been lucky for so many years, in the fact, that sleep always appeared quickly, and I slip into a world where pain doesn’t effect me in any way similar to the day. Bed and sleep, have became my joy in everyday life. From just reading those few lines, it’s clear that something has changed, something is now intruding into my rest. In the run up to Christmas, I have written about the bizarre increase and new areas that sensations have been running wild. Yesterday was the first day, they found their way into my rest, in a way, that was somewhat disturbing. It’s normal when I get into bed that I will have some part of me, tingling or filled with pins and needles. Since I have been using my wheelchair, it is my arms, where it was once was my legs. Their upset, was clearly due to the fact that the muscles had been recently used, no awards for working that one out. It is also normal, for my diaphragm to be producing pain, and the change from vertical to horizontal, normally, triggers slowly tightening intercostal muscles. All of which, I can slowly manage with relaxation and drift into sleep, or just rest for a while if that was my goal. Yesterday, both in the afternoon and at my bedtime, lying down, didn’t dull anything, it sent my entire body into bedlam.

I have felt similar things during the day, but never quite as complete, or as intense before. My entire body, and I do mean entire, as I couldn’t find any part of me that was silent, everywhere was filled with different sensations. You name it, other than lightening shots, there was some part of me that was feeling it. The majority was my old friend numbness, followed by tingling, pins and needles and pain. I was in bed for an hour during the day and never, once, managed to shut it all down. I relaxed as much as I could, I worked on taking each part, past relaxed and into what I call sleep, basically, so relaxed that it feels as though they are no longer there. My success rate, for the first time in ages, was poor. I could turn the intensity down, but I couldn’t find any silence and definitely no sleep. I have over the last few weeks, become used to this same problem when I am up and about, but then, there is, at least, distraction. Distraction is something I find effective, even if it’s only an effect on my conscious brain. When you are lying down, in total darkness provided by a mask and with earplugs in, there is no distraction, the whole point of my accessories. Distraction means lack of sleep, so they have to be removed. Also, the reason, that I work through my normally highly successful relaxation techniques, it removes the distraction of my body. It didn’t matter in the afternoon, I wasn’t looking for sleep, just rest. Yes, it meant my rest was more limited than usual, but I did still rest.

Night time was a totally different story. I don’t know how long it took me to find sleep, as when I woke at 4 am to go to the toilet, I couldn’t remember sleep, just my voice constantly saying “relax”. I should have woken with silence everywhere apart from the desperate message from my bladder, but even then, the silence wasn’t there. It was the exact same story when I returned to bed, and then when I woke once more at 8 am, still with only the memory of my voice in my head. It now over 24 hours, since I last remember not have wild messages from every part of me, bombarding my brain. There has been no peace, no time when I haven’t felt the desire for a silence, that just can’t be found. I am growing more and more tired, I know I must have slept, but the benefit of any of it has been lost. My plan, of getting more sleep, seems to be further away with every hour. Right now, I want nothing more than some deep refreshing sleep. There is little point in heading to bed, little point in lying down, when nothing changes, nothing goes away. I am pushing myself to stay awake right now, as I have hope that when the point of total exhaustion is reached, which isn’t far away, sleep will win.

At first, despite the annoyance factor, I found this sensation display, amusing and fascinating. I was beguiled by the range and constant changes all over my body, caught up in the desire to understand. That has worn off. All I want is, a short spell of peace, I’m not even greedy, it’s not like I’m asking for it forever, just when it’s time for sleep. Just to take a step backward, as I can deal with it when I’m awake, we can all deal with anything when we’re awake. The maddening thing is, that I am almost sure that it was the overactivity of the last couple of days, that brought it on. Now, it is the cause of overactivity, because it won’t let me rest. There are times when my health really makes me feel as though I am losing the plot, today is one of those days. I have always done whatever I can do to work with my health, but just occasionally, it makes it impossible to do so. When it takes over in this fashion, you just feel floored. I swear that somehow, every tingle, every spear that prods at me, and every area that feels dead, is draining my energy even further.

I know I will get some sleep. I will be so far past just tired by the time my afternoon nap comes around, that I will sleep, maddening sensations or not. Right now, I have things to do, I have so many things to do. Maybe, I won’t wait, just tidy through what has to be done, then go to bed. Blessed bed, my joy in this ever annoying world. Please don’t take that one thing away, at least not now.

 

Please read my blog from 2 years ago today – 28/12/2013 – Painful answers

Yesterday brought Teressa and John here for the afternoon and loads of explanations to the past week. When the doorbell rang I had to unlock the storm-doors for them and as I was turning the key I spotted…..

 

 

 

Lost somewhere in my mind

There are times when you feel great and totally on the ball, nothing can stop you and life is not live you, but you are living it. Then with crashing realization you note all you have done all day, is screw things up. I though those days were over when I was no longer required to write long complex programs, sitting there happily typing in at speed what I wanted my system to achieve and then realising in horror that an error made just after I started, meant that most of what I had spent my day doing, didn’t work and required huge fixes. I really thought that I was on top of things yesterday, I had my plan set out and everything was slotting together with ease and perfect simplicity. It wasn’t until about 1 o’clock that I realised I had actually spent most of the morning just screwing things up as I so often seem to do these days. I had been happily scheduling twitter posts to wrong dates, ticking things off my to do list when I actually hadn’t done them at all and the things I had done, remained unmarked.

It is far from the first time I have found myself suddenly stopped and pouring back over my day trying to find all the bits I had actually completed and all the things I hadn’t even started on, believe me that is really hard to do. I can’t get to grips on how this happens, why would anyone tick things off as done without even starting it? I have had this problem for years and it always seems to come in these mad spates were everything I do seems to be almost back to front. The biggest problem isn’t any of this above, it is the fact that once I see it I get myself into a spin, almost a mental panic as to what I have and haven’t done that day. The panic is so set that finding my way out of it is extremely difficult, logic doesn’t apply to anything once that chaos button has been struck. All to often the following step is shut down, it is as though my mind freezes and refuses to believe anything it has managed to do, quickly followed by an over riding desire to sleep, it wants to hide from it’s responsibility and sleep is the only way. Even once I had everything back to where it should be, or at least as close as I could be sure, I still remained just needing to sleep. It wasn’t cured by my 2hr siesta, waking on the command of my timer I found nothing had changed and in someways were worse. I remained for the rest of the day partially in the world of the zombie and partially lost in denial of my own stupidity. Accepting that you can so totally convince yourself that what you are doing is right, when to anyone else is clearly wrong, is really hard to accept, I simply don’t make the links between different actions. A tick in the wrong place is as good as one in the right place, isn’t it? That feeling that you have lost control and not noticed is scary, we all believe we control our lives and loosing the control over minor things, opens up millions of questions over the major things. What else had I missed? What had I done that I have to fix now before it’s effect grows to disaster stage? In many ways it is as terrifying as those moments when something small has been moved and I go into panic as I have lost my bearings and no longer know where I am, the difference here is I am lost in my mind. Like many things over time I settle again but always with this shadow of the feeling hanging over me for the rest of the day. I woke exhausted and remained exhausted, giving in at 8:30 pm and asleep in minutes of lying down. I lay there only long enough to check my body over as I do most nights, trying to make those mental notes as to what was hurting, what was annoying and how well I could breath, no great change from the night before.

This morning started out OK but crashed into the ground when I suddenly remembers that I hadn’t checked the electricity bill. I always have had a tight grasp on what we spend on heating the house and in all gas and electric cost across the board, so to open it and see they wanted to increase my payments form £73 to £220 a month, well I nearly died on the spot. I actually expected our bills to have gone down as I had kept the heaters on a lower level than ever before and as you know the curtains are still closed for the greater part of the 24 hrs. Luckily I spotted straight away what was wrong, as they were only charging £36 for 4 months of night time use, with everything else bundled into the day usage. I opened the bill form last year covering the same period and nearly 3000 units had moved into the daytime and off the nighttime, our meter isn’t working! My phone call to the company was great, I was stunned at how easy it was and how they totally agreed with me there is a problem and my reasoning matches theirs. They are sending someone to the house on the 10th June and have returned my monthly payments to just £73 until we get to the route of the fault. The 15 minutes on the phone, with no waiting time at all, just seemed all to easy and all to much as thought this will be fixed without any problem. I find that kind of unlikely, I hope it is that way but life has taught me it is rarely that way at all. Time will tell I know but I am already getting ready for the fight as to how they rectify the payments.

Lost and trapped in one

I had everything ordered in my head when I got up, exactly what I was going to write about and what I was going to say, then I started wondering. Not in my mind but around the house, sitting in each room without having a reason to be there, just sitting. I suppose the easiest example that may make sense to you is one I am sure everyone has done. You have gone into the kitchen not hungry but wanting something to eat, you opened the fridge door, already knowing what is in there, but still needing to look just in case, you stand there staring blankly at what is there, then close the door before checking in the same way a couple of cupboards before leave the room with nothing in hand to eat at all. I have been going into rooms with no reason or need for anything there, just checking, with nothing to check for. This isn’t the same in anyway to my visiting a rooms for a reason, then forgetting what I went there for, as I’m not going there for anything. I have found myself doing this several time in the last few months, just as I get distracted by other things on the computer when I am in one of my fogs, I have added in wondering away, looking and coming back again. I simply have a need to go there and no reason not to, so I do. I have to be honest it is a behavior that I can find no reason for, but I continue to do it.

I suppose I am more inclined to take time to work out why I do things than most people, as I need to understand so I can write about it. I expect that we all do things daily that there are few reasons for us to do, but we dismiss them and continue with our busy lives. My life isn’t busy so I can analyze myself continually, possibly not the best thing to do as it is easy to convince myself that something more is there than there really is. But if you knew there was something working it’s way around your body and brain stomping on and destroying as it pleased, you to might be a little concerned to what the reason behind things as well.

What I had in mind to write about today was something that happened yesterday afternoon. I went into the kitchen to fetch myself a coke and dropped the lid again, then stupidly rather than take one from my collection of caps I have for this very reason, I tried to pick it up. This meant that I had to kneel down as the cap was under the front of the fridge, I got down, but I couldn’t get up. I had to cross the kitchen on my knees to the other side of the room where I keep my perching stool, so that I could pull myself up, for the first time I couldn’t. It took me four attempts as I simply couldn’t find the strength to get off the floor. I have been caught on the floor many times, but every time in the past once I am somewhere where there is a leverage point, I have pulled myself straight up. Yesterday I just couldn’t do it, neither my arms or my legs contained the strength when I tried to use the normal levels of effort, by the time I was standing I had to sit as my muscles where exhausted, I sat for about 3 or 4 minutes before I felt ready to walk, but even then I felt weak and unsteady. I now have the proof that as I thought, my muscles are loosing more and more strength, it is no longer just a feeling that I am some how frail and can’t do things that require basic strength, I have proved the feeling right. So not only no ladders now there can be no more floor level activity, unless I am content to be down there for a while.

Combining all the odd things like suddenly sleeping half the day every day, and wanting to sleep even more, finding yourself doing things that make no sense, raised pain levels and new area’s of pain, more fogs and hugs than in the past, leaves me with no doubt that things really are changing. So watch this spot, who know what will happen next.

Set to be exhausted

I’m running a little behind my normal scheduled today but for good reasons for a change. Skype came to life just as I had settled down to write, I have already been chatting with Tracey, this time with no tears, she is really back in my life. Strange how you can have things clear and ready to do something and then minutes later have no idea what it was and I know that isn’t just my MS but it’s a good excuse.

I had actually been sat here looking round my room and smiling. Adam has been true to his word and he has started to clean the house up. I am once again sitting looking at objects that sparkle rather than hide under dust, it means so much to me to be able to go from room to room and see things slowly turning into areas I am once again not just happy to be in but also where my memories are now beginning to match reality.

I know this morning was going to be busy as it is today that our fortnightly shopping arrives. For years, in fact I can actually say with confidence 12 years I have had all our shopping delivered to the house. I would recommend it to everyone as trailing through crowded supermarkets has never been something I enjoy. I was actually registered with 3 supermarkets in Glasgow waiting for them to extend their home-shopping network. I’m not going to advertise any supermarket here as your likes and dislikes in shopping are amazingly personal, but all 3 popped up as active in turn and all were tried until the next appeared. The results actually were all very similar and in the end my online shop is with the company I used to begin with.

I can’t recommend the whole system strongly enough, even if you are able bodied, it is a total joy in comparison to trailing round on a Saturday morning. I have never had anything but the freshest food, or the occasional and best substitutes if there was something I wanted but was out of stock. But the best bit is this, I pay them just £3.50, they do the leg work and carry it all up 3 flights of stair, bringing it all right to my kitchen floor and worktops. On a couple of occasions when I was having a bad day the delivery guys have actually put the fridge and freezer foods away for me, not in the right places but away. It would cost me five times that much just for taxis! I did check out and find a shopping system set up in Glasgow for elderly or disabled and they charge £15 for a small shop. It took me just 15 mins to send the order on line and they will deliver within a two hr slot that I chose. This to me is a no brainier. Over the rest of today I put away what I can leaving the heavy things like coke bottles and so on for Adam to deal with later.

By the time Adam calls to check I am OK I will be wiped out and ready to sleep. I know that I could have the shopping delivered when Adam is at home and he would be more than happy to do all of the work, but this is one of those silly little things that I can still sort of manage and I don’t feel totally useless at. There are strange little things that I hold onto and continue doing that logic says should have been long gone, but they strangely become inflated in there importance and remain as my domain. I will be exhausted later but it will be a good exhaustion as I will have achieved a small act of every day life.