Finding my feet

Last night, has to have been one of the strangest evenings I have spent in a very long time. Most strange evenings usually occur because of other people, this one was down totally to me, or should I say my body. There is without a doubt, something major going on with my nervous system. I have noticed over the last few weeks that different area’s of my body, normally at different times, have been going numb. That’s numb as a sensation, not as a total loss of all feeling. It is without a doubt the sensation disruption that I have always suffered from more than any other, but lately, well it’s been all over the place. Sometimes it has been just a small area, like half the back of my hand, on others, it has been an entire foot or the entire side of my head. Normally, it is one area at a time, occasionally, a couple, but last night took the biscuit.

To be fair, it actually started about two weeks ago, gradually building, intensifying and spreading. Over the last few days, I have been getting spells of up to a couple of hours where numbness has taken over most commonly my lower legs. Usually, it has been one or the other, but I have had a couple of occasions when I have lost both feet, but only up to my ankles. Other times and probably the next most frequent is the upper side of my knee when I am sitting. For a while, I thought I was causing that, as I do have a bad habit of leaning forward when watching TV, and pushing my elbows into them, but it didn’t explain it at other times. It was my legs that started playing up yesterday first. I think I was still sitting here writing when I was first aware that my entire right foot was numb, by lunchtime, it was creeping up my lower leg. Which was about the time that my left foot joined in and did so suddenly, totally mirroring the other one. This sort of numbness is odd, firstly, because, for some reason, it makes the area it is in feel as though it is swollen or enlarged both inside and out. If it appears at a point where there is flex in your body, it makes using that flex difficult. For example, we all know what it is like to have a bandage around our ankle, just as it restricts movement in any direction, well this numbness does as well. I have tried to work out how it does that, as it’s not as though the area’s affected are swollen or anything, but that’s how it feels whenever I move, which is odd, very odd. When I woke up after my nap, well it had spread in my sleep, my arms had taken the rest time as a signal that this being numb was a great wheeze.

Having lost my left hand in the past, anytime it starts playing games, is worrying, I simply can’t help it. You might think that the fact you are right handed, losing your left hand wouldn’t really matter that much, trust me it does, you use it far more than you will ever know unless you too lose it. Waking to find that my hand felt pretty much as it did about seven months into its healing process, was clearly going to be upsetting. I didn’t notice anything going wrong last time other than a some weakness, then it totally went, but that doesn’t mean, there was nothing to notice. I woke to find that I couldn’t make a proper fist and the numbness was marked, just as it was in both my feet. While I was asleep, my diaphragm had tightened considerably, as had the intestine right across the top of my stomach. When they both go like that, it’s not only harder to breath, it is incredibly uncomfortable to sit. Sleep had made things worse not better.

My body was disappearing bit by bit. By 6 pm when Adam came home, the numbness in my lower legs had spread upwards to within 4 inches of my knees and there was a strange growing cold spot on my back. It felt as though someone was circling a couple of ice cubes round and round over the exact same vertebra. I didn’t mention it to Adam as I know without a doubt, he would have just spent the entire evening asking how I was, and worrying. If there is a pointless act, that is it. As the evening progress, so did the feeling that I was losing my body, there is no other way of describing it, I was losing my entire body and there was nothing I could do. In the past, all that was needed was movement and it normally went away, until I stopped again, it gradually returned. Any movement at all had been like a reset button up to date. No matter how long it had taken for a sensation to build, it took exactly the same time after reset. Yesterday, that wasn’t working. At it’s best movement did disrupt it, but as soon as I stayed still again, it instantly returned to where it had been, no build up, just a total return. I could have danced a jig and it would have changed nothing. By bedtime, that odd cold spot, well it had grown to a rectangle that reached each armpit and was about six inches tall and the right side of my head was numb as well. My breathing was tight, even using my nebuliser didn’t help, it was quite simply a case of the longer I was awake the more that seemed to be going wrong. I was nauseous, tired and I had quite simply had more than enough for one day. I went to bed in the hope that waking this morning would be the rest I was looking for.

It wasn’t. Yes, things are better, but a total reset, no such luck. The intensity of last night has gone, but everywhere that I had numbness, I still have numbness. Everywhere that I had pain, I still have pain and my breathing, well, it’s better but not at it’s best. Worst of all, I don’t feel as though I slept for a second, but I did, as the first thing I heard was the alarm, no night-time trips to the loo or the kitchen, just what should have been perfect restful restoring sleep, but it failed. Last night, I remember sitting on the settee making a decision, one that I can’t remember the thinking, only the conclusion. I was going to phone the OT this morning and ask one of them to come and see me. What exactly my thinking was, totally escapes me, the only thing that makes sense of it would be to see if I could convince them, to put pressure on Westmark about a reassessment for my wheelchair. I must have been feeling more desperate than I thought, as inviting an OT into your home, can be a dangerous move. I have come to the conclusion that part of their training is to develop a “takeover” attitude. You can forget that odd idea that we all have about our homes, being ours, or that we like it just as it is, they don’t believe either of those things matter. Nor do they actually listen to our words, they only hear theirs. Clearly, I don’t and didn’t like what happened to me yesterday, but is it really bad enough to go through that? Right now, I have my doubts.

I can still manage, after all, these are sensations. Yes, they do bring a slight loss of feeling with them, but slight is a million miles for actual. Sensations aren’t required in my legs, as I am safely sat in my wheelchair. I am not going to be able to damage myself as might have been the danger if I were still walking everywhere, but I’m not. Although I can see what my thinking was, I don’t think that now is the time, not yet. There isn’t anything that can be done about sensations, they are what they are. Are they an argument for a change of wheelchair, probably not, especially, as this is the first time they have been that intense. I think that this is a case of waiting to see what happens, then talk it through with Adam before I do something as stupid as picking up the phone to an OT.

Please read my blog from 2 years ago today – 03/12/2013 – Taught to be silent

My body has been playing tricks on me again, yesterday at around 2 pm just after Adam had returned to work, I suddenly lost feeling in the entirety of my left arm. In the first few minutes I was astounded by……..

I still see

So far today has been a total rerun of yesterday, no better and no worse, but here I am again just wishing I could just go back and sleep through until tomorrow, in the hope that I might just wake again feeling a bit more like myself. It doesn’t take much brain power to know what is pulling me down, but I am just not finding my way out of it. I suppose in many ways that it isn’t surprising that I haven’t felt like this sooner, but anyone would get down when they have spent four months in the exact same pain with no end in sight and no answers as to what is really happening. I know I have my theories, but theories aren’t the same as truly knowing. I am just so fed up with being in constant discomfort, four months of not being able to take a single breath as we are supposed to do, without even knowing it is happening. I really think that my body is determined to make my day more difficult than it needs to be, as from the second I sat down at my PC, I have been plagued with spasms by muscles across my backside and up in between my legs and not any of my tricks that have helped on occasion, haven’t made the slightest difference. The good news though is I know the difference between depression and down, there is no comparison, this is nothing more than down and I know I will eventually pull myself out of this stupid mood.

Ironically, I used to be really good at fixing the odd mood like this, work was always a good one but if one did hit when I wasn’t working, well the quickest route out was to go out and just sit somewhere where I could watch people. When I first moved to Glasgow, I spent six months more or less alone for the whole time, I didn’t have a job to start with and I didn’t know anyone. If I am honest I didn’t actually feel the need to work at that point, as so much had happened in my early life, all documented here in my blog that I hadn’t dealt with, that what I really needed was the space to sort it all out, or to at least try to. It was during that time that I first discovered that I didn’t mind being alone, I had had some training towards it, from my childhood firstly, but also I had just spent ten years married to someone who was in the Navy, but then at least I had my daughter and friends, when I came to Glasgow, I came alone. It wasn’t long before I discovered that if I could just watch people while I was thinking, that it did two things, it kept my spirits up and worked as a great distraction on the days that I needed to not think. If there is one thing that I miss, one thing that being housebound has taken from me it is that opportunity to watch people. I used to spend hours sitting whilst appearing to be reading a book, but all the time I was watching and listening to those around me. It was the great joy of being a DJ and even when I worked in more conventional jobs, it was the people who were around me and what they did and said that fascinated me. My health has destroyed all of that, not just because I can’t get out there now, but when I do, when I am at the hospital where there are loads of people, I get so tired and find it all so overbearing that all I want these days is to come home, the final straw for a people watcher, I just can’t deal with them now.

We all must have those odd things, the things that don’t quite make sense that we have lost in more ways in one. For some, it might be going shopping or those trips to the theater or cinema, they still exist in our minds as something we want desperately, but we know even if we could get there, that we would just want to come home again, too tired, too overpowered and just too ill to stay. How can we long for something that we know without the slightest doubt will make us feel worse? As I said it doesn’t quite make sense. The closest I get these days is on Twitter, I know I can’t see the people any longer, but I can hear them, I can without difficulty listen to their conversations and know what is happening in life. The news keeps me up to date with what is happening in the world, but it takes people to tell us what is happening in life. Chatter is a wonderful thing for gauging the reality of the world as it is today and how that chatter has changed over the years, without any of us knowing it, we are all part of the biography of life.

Memories have to be the quickest way of changing how we feel, all of us can pull up an image that will never fail to make us smile or make us cry, a trick freely used by actors worldwide, but it’s also a trick we can all use, or can we? I used to, I used to use them all the time, but there are firstly only so many memories we have freely ready to bring to the front of our minds and after 8 years of living with them without any new ones really being made, their charms wear thin. Even my memories are now a place I shy away from, I can’t avoid them, that would be impossible but I no longer go looking for them as all too often I find the lacking, those horrid gaps and places where I find myself searching for hours for what I know should be there but isn’t. There isn’t a single part of me that hasn’t now been spoiled by my health, most of the time I brush it away, I look at the good the things that I do still have, the things that I want to celebrate even in my life the way it is and there is much still to be happy about. I still have my home, my daughter and most of all Adam and every day is made brighter by them, but I am becoming worn down by this damned pain and discomfort that just won’t end. I hoped that today was going to be better that today I would wake and I would feel good again, pain or not, but I haven’t.

I tried this morning to pick myself up, I wondered round the living room, picking up my favourite pieces of crystal and holding them, letting the shape, feel and weight merge into my hands. Just holding such beautiful objects still held the joy it always does, but even they couldn’t reach far enough into me to break this stupid mood. I turned them over and over, running my fingers along their lines and letting the coolness of the heavy pieces change the temperature inside me. I gloried at the skill of the craftsman who could change a lump of lead glass into the smooth and lithe panther, the strong pouncing tiger, then the proud lion. I lifted the water goblets and followed the deeply etched facets that played in the light of the TV, I ran my hand over the curves of the candle lamp, cold and unlit but holding the promise of it’s beauty just waiting for that candle, each in turn I admired in the hope that I wouldn’t just feel and see them, but they would break me as they have done a million times in the past, but they didn’t. for now, I am stuck here, unreachable by anything I can think of, see or touch, maybe tomorrow will find me better suited to being myself, who ever myself is these days as I seem to be a little lost.

Read my blog from 2 years ago today – 3/05/13 – Avoiding stir crazy

It never ceases to amaze me how fast and how easily my days pass, if I had been asked what I thought would be my reaction to this type of life, well I would have expected me to be fine for the first few months, then crazy from then on. I know from the tweets and comments that it is something that those who are not housebound are most surprised by, that I can actually be content with my life as it is. They are not alone, I have questioned it constantly…..

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………