It’s all about sleep

There is nothing in this world as wonderful as a new pair of earplugs. I only use a set for a couple of days then change them, but last night their impact on what I could hear, seemed somewhat marked. I know I have said it several times, but I so wish I had bought both them and my eye mask 40 years ago. Just like there are occasions that you step into the shower it is so perfectly balanced in temperature and strength, that you just don’t want to have to leave it. Last night, when I put my earplugs in the closing off the outside world, was sublime. There is a perfection, even a joy, in finding yourself in total silence. Add the total blackness that the mask supplies and the comfort of my bed with the duvet fluffed and settled over and around me, and my isolated cocoon is complete. There is nothing like being allowed to be totally undisturbed by anything other than your own thoughts. Isolated and totally free of interruption. I was so ready to sleep last night that finding everything just falling into place without effort was wonderful. I didn’t lie there awake long. Just long enough to appreciate how good it all felt and to run through the day before drifting off into glorious sleep.

I was woken by the unmistakable demand of an over full bladder. No matter how it complained, I was finding it incredibly hard to find the conscious levels required to actually move. It is a feeling that I know all to well and it’s one that I really don’t like. It’s almost as though someone has drugged me and I am having to fight my way to a position where I could show I was alive. It is a real struggle, one that takes several attempts to actually achieve. Pulling myself to the surface over and over, then failing as I slipped back into a fitful sleep. Even when I do manage to actually move and pull myself up into a sitting position, I can’t even then actually move with ease. I sat there this morning feeling terrible and wishing that I could just lie down again. The world was moving, I could feel it although my eyes were shut, I also knew it wasn’t moving at all. It’s a feeling of dizziness but it is totally in my head. So much so that my actual brain feels as though it has been turned into mush that is swimming around within my skull. Often I wake to find that the machine that pulped it is still active and thumping in time with my pulse, whilst a strange sort of low whistle sounds in the background. In normal dizziness your eyes confirm what you feel, this has no affect on my vision at all. I was sat there feeling completely wrong and struggling with a simple question that had to be answered before I went anywhere. Pyjamas or just dressing gown? It was just 14 minutes until the alarm was due to sound, but I just wasn’t sure if I should just get up and stay up, or come back to bed for those last few minutes. I decided that getting up was the logical answer and once dressed I headed for the loo.

I have woken many times recently feeling like this, so I knew before I stood that walking was going to be interesting and that I was going to have to walk with care. My balance always starts to swim with my brain, one second throwing me backwards, the next to my side. Staggering along with what I can only describe as a penguin shuffle, is now a well-known start to my day. From doorpost to the wall and onwards until I find the safety of somewhere to sit again, this morning that was the much-needed relief of the toilet. It was a good thing that I wasn’t in a hurry to do anything else, as I swear that every drop of yesterday’s 2 liters of fluid was all there waiting to leave. From one seat to another in the next door kitchen was my next goal, along with the first cigarette of the day. something that didn’t go well. Just a few puffs and I had to put it out, I just couldn’t take it as it was making me feel even worse. I sat in the kitchen as I have found myself doing more and more when waking at night, not just in the morning. I was just sat there doing nothing, unable to do anything might be a better way of putting it. It’s like I don’t actually know how to move, I sit, blank and cut off from everything, almost as though I am about to go back to sleep exactly where I am. There is a numbness surrounding me and it closes in around my brain more than anywhere else. My mornings are becoming a battlefield, this is happening all to often for my liking. It takes time, a lot of time for me to actually start to feel normal. Today, it was just over an hour before the worst of it was gone, but I still don’t feel great.

Jake just called me and when we were talking, I suddenly stopped. It was more than my normal forgetting words or what I was talking about. It was like those blanks that I get when sitting in the kitchen. It was so dramatic a silence that it was Jakes’ voice demanding was I OK that snapped me out of it. I said, “yes I’m fine”, then shut up again as I desperately tried to work out what had just happened. I still don’t know. My brain just stopped. I was suddenly nowhere and nothing, without a clue of how to get back. Even when Jake tried to help me get back on track, I struggled to find anything that matched the words he said back to me. I doubt the whole thing even lasted a minute, but it felt like it went on forever. That is the first time that has ever happened to me. I don’t like it. It somehow felt like a terrifying place to be and I don’t want to go back there. I often got lost in my words or forget what I was talking about, but this felt so different, it was deeper and stronger than anything I have ever known before. It has even managed to leave something behind it, other than that fear that it triggered. It has left me feeling lost. Not just about what happened, it’s a feeling of being lost about everything.

I said yesterday there are so many small things happening just now. I can’t pick one out which as being the most important or the reason behind it. There is nothing I can blame for it either, but what I do know is something is changing and something is growing in what it is doing to me. My right arm this morning was once again not quite right. It wasn’t as bad as Sunday, but it was numb and I couldn’t make a closed fist again. Now, it’s back to normal. The only common string seems to be sleep, all these new things seem to be worse when I wake, which is totally the opposite of how my life normally is. It feels as though I have two different things happening to me right now. My PRMS and this other thing, which I know is managing to make my PRMS worse at the same time. Whatever happened when I was talking to Jake, I don’t know, but I really don’t feel right, even writing is hard. I just hope it makes as much sense to you, as it does to me as I am writing it.

Please read my blog from 2 years ago – 21/07/2013 – First a funeral, then the will

Well the plans are started and we have talked through a range of things that we agree has to be done so that we can both move on and we can both make the most of the time we have with each other. Strangely it wasn’t……

Catch up

I have just spent a couple of minutes fighting with my chair, it is a really cheap silly little office chair I bought about 12 years ago and it is just so annoying. It was one of those things we bought not long after moving in here as I needed a smaller chair that fitted the space where my desk is, that, along with the cost was all I thought about then. I have looked since, but finding something small enough is now actually really difficult, so I have adapted it a little by adding the cushion that belongs on my wheelchair. It has made it that bit more comfortable, but the cushion slides around as I try to sit and gets caught on the legs of my desk causing it to slide off from time to time. That along with the height adjuster that no longer really works and the wheels that I think have brothers on shopping trolleys, well I often find myself struggling as I can’t hold myself in the air as it seems to want me to do. Adam asked me the other week why I didn’t just buy a new one, well I wish he would find me one as I can say with certainty that I couldn’t find anything close to one that would fit in this position, the only place other than the kitchen, which I don’t want to be sat in every day all day where my PC could possibly go. It is just another of those things that if I were fit, I wouldn’t even bat an eyelid at, but being the way I am, well it just makes life that little bit more difficult.

For the last few weeks, I have been so caught up with what has been happening between Adam and I, that I haven’t really been writing directly about my PRMS, no it hasn’t gone away, it’s just when life is turned upside down, well the every day has to fade into the background for a while. If I am totally honest the last couple of weeks have led to more pain than I normally have, but that is for a mix of reasons, not just the emotional upheaval. With Adam now back actually coming to bed each night, I can no longer sleep with the mattress raised at the head of the bed, I did try using pillows stacked in a cross hatch but they just didn’t work for me at all. In fact last week I had a night with almost no sleep until I gave up and removed them, which left me lying flat, but I slept. I have now spent 4 nights flat out with my normal 3 pillows and it isn’t working for me either, every morning I am waking with a painful back and unable to move with any ease for quite a while after I am awake, plus my breathing is also being affected. It was because of my breathing that I first raised the mattress, I find that when I am lying flat that the pain in my rib cage is far worse than it is when I am at an angel, something strange really happens to me when I go from vertical to horizontal, it seems to be a green light for my muscles to go into spasm. I can only guess that I the change in position stretches them out and that is what they don’t like, as long as I am hunched, as I am most of the day, they are, well happier. I can’t be sure if it is the new sleeping position or something else, but the pain around my ribs has been increasing in the last few days, as has the pain in my thighs. Whatever the reason is, it is the pain in my diaphragm that is driving me nuts. The pain seems to run exactly along the line where it is attached to my ribs, it follows the exact line of the base of my rib cage and it is getting sharper and sharper, especially at the two lowest points to the front of me. Every breath I take feels as though there are small razor blades being drawn back and forward with the movement over about a three inch stretch either side, the pressure from the base of my diaphragm up to just below my breasts has become truly uncomfortable most of the time, I seem to be spending more and more of my time trying to breath using just the top half of my rib cage, that way I avoid the worst of the pain, but I can’t truly take a deep breath that way, so occasionally I just have to take the pain. All of that is caused by my PRMS, my Emphysema only affects my actual lungs and they don’t seem to like any of this either.

The last couple of weeks for the rest of my body has mainly been causing a heightened numbness, right to the point where areas feel as though they have disappeared. I am finding a lot recently that parts of me just go to sleep, a bit like having an injection at the dentist and you can’t feel parts of you face, well I will suddenly loose a limb or part of one. It is really odd trying to walk when you can’t feel part of your leg, it may be working fine, but it feels all wrong. It’s nothing like when you have cut off the blood by sitting wrongly, then it doesn’t want to work and it feels more spongy than gone, it is more a case of it just not being there as I don’t receive the sensations of touching the floor, or muscles tensing as I take a step, it all depends on which area is gone and what I am asking it to do. When I lost my left arm, I lost everything, feeling, motion the lot, it was just this dead thing that did nothing, losing sensation doesn’t compare in any way to that and you just aren’t sure exactly where that part of you is. I know that sounds odd, how can you not know where your foot is or your hand, but if you can’t see them, they can really disappear and you have to make them move or bring them into sight, just to check they haven’t fallen off. I think that might have been behind the problems I have a few weeks ago when I found myself unable to stand one morning, it felt as though my legs just couldn’t take my weight, which is a actually how it feels when part of me vanishes. I think that I may have been misreading things, it wasn’t that they couldn’t take my weight, so much as I thought they couldn’t as I wasn’t getting the right signals from them.

There is a fear is one thing that I still find hard to handle, the fear that something is just going to die as my arm did years ago. Once you have been through a limb dieing on you and all the work it took to get it back to where it is now, well there is this constant fear that it will happen again and it could happen to any part of me at any time. I know I was so lucky to get the use of my arm back, even though it will never be perfect again, it at least works, the biggest damage it really did was to leave me waiting for it to happen again. The last few weeks of losing bits of me means that every time I am left waiting anxiously to see if it comes back. I guess somethings are with you forever.

 

Please read my blog from 2 years ago today – 03/02/13 – Pass me a hammer

My leg is driving me mad this morning, I have moved everything around several times so that I can sit in a different position in the hope it will give me some relief. It hasn’t. I am beginning to think………

Getting the message through

The lump on the back of my head seems to have at last almost gone, there is just the slightest rise still there and I need to press quite firmly before I feel any tenderness in the area. I don’t believe I am any closer as to knowing exactly what caused it, but the only possibility is my sleep mask. I know that sounds odd, but when I put it on last night the elasticated band that is adjusted via a strip of velcro at the back, happened to land exactly on it, it did the same the night before but I dismissed it, but the length of the lump matches the length of the velcro. I have never heard of someone sleeping on something that then causes their head to develop a sizable lump, but as there is no other possible explanation that either Adam or I have actually managed to come up with, well, it seems the only answer. I know I jokingly describe myself as a delicate tropical flower that needs careful handling, but this is really going too far, mind you, it’s even more proof that nothing makes me move an inch once I am asleep, not even a growing painful lump.

The last few days have been what I would call odd, I just haven’t felt right and almost every time I stand up, I have felt as though I was going to collapse. Not so much due to the sensation in my head such as dizziness or vertigo, but more the feeling that my limbs just aren’t going to carry me. I have had this many times in the past but never for this length of time, it is usually something that will happen a couple of times in a row then vanishes, this is now day four. When it has happened in the past it has usually been in the late evening so I have always just put it down to the lack of remaining energy and the final sign that I should really be in my bed. When it happened on Wednesday morning I honestly thought that if I took a single step away from the desk, well I wasn’t going to take a second one. When you are on your own and something like this happens it is hard to know what to do for the best. I could have just sat down again, played it on the safe side but then I would have been stuck here with no way of getting a coke or going to the loo and without Adam to help me, well I would be marooned. There really isn’t any choice in situations like that, I just have to take a chance and hope it pays off. If I was sitting telling Adam this, I know without a doubt what he would say, that I should have phoned him and he would have come home to take care of me, but that then makes thing difficult when it comes to his job. Working for the NHS you would hope they would be understanding, especially as he hasn’t had to take time off to care for me other than taking me to hospital for appointments, but you just don’t know, I prefer to play it safe. I was proved right, I could take a step and another and another, but I was almost at the kitchen door before I was able to actually feel secure with movement. Making yourself walk when you really don’t believe your body is capable of it, is so much harder than you would ever think. It isn’t the physical issues that play hardest in your mind, not the sensation or reasons as to why your legs say the can’t do what they should, but the fear that you will injure yourself severely if your body does fail you. Fear is such a hard thing to overcome, but if you don’t, well chronic illness will turn you into a bedbound invalid.

In the last year the occasions where I haven’t been sure what to do for the best, have increased, mind you I suppose it is all relevant, I am clearly not as fit as I was a year ago so the times I feel so wrong I can’t do what I want to, would rise, yet to me they seem to have increased disproportionately. I know there is a huge difference between “feeling as” and actually “can’t”, but the results can actually become the same thing and it is something I know I have personally been fighting ever since I was diagnosed. As I said yesterday, I fought my walking stick, my wheelchair and anything else that if I had used half a brain cell would clearly make life easier, but I feared if I gave in, I would never walk unaided again. I know the day will arrive when “can’t” is both a feeling and a fact, but until then it’s telling the two apart and knowing which is the truth at that second that is the challenge. Fear says sit down and try later, fact says if you don’t try, you never achieve anything. Fear says if you crash to the ground you may well be badly hurt, badly enough you will land up in the hospital, fact says if you don’t try at all, you will probably land up there anyway and so it goes on. Who would have thought that just getting a glass of coke, would become a debating issue without clear answers on either side? And all the time you are standing there with this feeling of all your energy and strength slowly sapping out of your body, down through your legs into the ground and your muscles getting weaker and weaker.

Even sitting here at this minute, just as I have done in the last few days after sitting for more than an hour, I have this sensation in my legs as though they are flat and useless. There is this gap, that appears between my hips and knees, then my knees and my toes, where there is this nothing feeling gel that has no true structure, useless in just about every way. It is the same sensation as I get at night or even when I go for my nap and I loose the true position of where my limbs are. I can locate with ease the main starting joint, but I honestly don’t know if my hands are clenched or still lain flat, or if my feet are touching each other or even crossed, they are lost, as is most of the rest of the limb, still there, but where? Trying to stand on that is all about trust, the trust that says they have been there all my life and they are still there and will carry me, regardless what they seem to think. Which leaves me with the real question, what is it they are really trying to tell me?

 

Please read my blog from 2 years ago today – 10/01/13 – What is OK

So here we go again a day of left leg pain, not the horror of last week but daily pain with a note of extra intensity. I have had a need in the past few days to write on a fixed topic and haven’t really updated how I am…….