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……..

A gap in the fog

It’s odd how you can feel so good and yet so bad at the same time. It’s been such a strange week, my brain has been the clearest it has been for a long while, but my body has been taking every opportunity to show me what life with chronic illness is really about. It’s perfectly normal for me to be wondering around totally uncertain of where I am going or exactly why, or just to be sat here staring at the screen with no idea of what I am supposed to be doing. Don’t get me wrong it hasn’t miraculously vanished, if only, it’s just the fog doesn’t seem quite so thick. I have no explanation as to why my mind is that tiny bit sharper, it’s, really an odd feeling especially as I haven’t felt it for a long time, but I feel it. The rest of me, well it all feels as though the improvement in my mind has been paid for by a down step in the rest of me.

Every day in the past week I have been fighting with a body that just doesn’t want to behave. My legs have been a constant problem, letting me down over and over again. I have to date been good at covering any issues, but Adam has twice spotted that I was unable to move simply because one or both of my legs weren’t able to take a step in safety. Once again the worst point is when I first stand up. I may have made it from sitting to standing, but there is either no way of taking a step or I get a spasm in my lower back that shocks me into inactivity. It is as though I am frozen to the spot and I have to hold onto something as the pain has a habit of shooting right through me. It honestly isn’t possible to move at all, I have tried in the past and the result is either no strength in my legs, meaning that I am either in danger of or do actually fall, or I cause the pain to get worse. Neither are exactly my first choice. I can’t even sit down again, all I can do is stand there and wait for it to pass, as it always does. At times, standing up has even triggered a similar effect in my arms, which is really not helpful as I honestly need them to steady myself. That usually only happens when I have been sitting on the settee, hunched forward to make it easier to breath.

This whole week has been one without strength. I have lost count how many times I have been defeated by a ring pull, or even more pathetic been unable to remove the paper seal over the top of the milk bottle. The most stupid things have become a battle zone. Add in my normal poor dexterity and at times I have just wanted to give up. My left arm has been weaker than my right for a long time, but both are of little real use at all just now. A small package arrived for me the other day, it arrived in one of those white padded envelopes which have a red stripe to pull to open it. After four disastrous attempts, I had to take the scissors to it, it took me several more attempts with them, simply because I didn’t have the strength to even use them. Once through the envelope, I was almost at screaming point to find the enclosed item, inside a thick sealed plastic bag. On the scale of pathetic, I felt as though I had fallen off the end. Even on those things that don’t take strength at all, I have struggled badly at times. You don’t think about strength and things like feeding yourself or typing, but when your muscles fail, it affects everything.

The one thing that no one but me could ever notice is my eyesight. Having said that, I think Adam did spot it the other day. I was simply trying to read something of the TV, sky has this horrid habit of backing everything in blue then putting small yellow or white print over it and even with my glasses, I now struggle big time. Experience has told me that the option can’t really help anymore than they already have. I can’t use my glasses here at my PC as if I do, they turn the screen into a worse fuzz than it normally is. I do have glasses to use when sat here, but they mean I can’t see the TV at all. I haven’t been able to make out faces on the TV that well from sitting here for ages, recently they have vanished even more. Now if two people have similar hair, I have no idea which is which any longer. Bifocals just don’t work for me so I am left living in a fuzzy existence whatever I do.

Everything just seems to have taken a step-down and has managed to make itself known. It’s not like I have suddenly developed something major or new, just everything is that bit worse. My chest is tighter, my breathing more difficult, my stomach is once again causing pain that stops me dead and just because it can, it takes my breath away. The Psyllium may be letting the contents of my intestine move forward and eventually out of me without effort, but it hasn’t dealt with much of the pain. It doesn’t matter which part of my body that you might choose, all the pain levels are just that little higher than it has been for a while. It’s not like I want to dive into my Morphine for a booster, it’s more like my slow acting Morphine isn’t quite holding it at bay. Every sensation that can be felt has triggered at will. Pain, burning, pins and needles, numbness and anything else you can name has appeared in the past week. All of this together has been the reason behind the searching I have been doing over the past few weeks into what it is that drives me and how I feel about it. It has had a really positive effect, one that both Adam and Jake have noticed and found it so marked that they had to mention the fact that I am bright and chirpy respectively. It doesn’t take a genius to work out where that has come from. My mind is once again at rest about where I am and what is happening to me. As I said, “It’s odd how you can feel so good and yet so bad at the same time”. It is odd, but when your mind and your body are in such totally different places, understanding it isn’t that hard.

I really did need to recenter myself if you like. It’s too easy to just forge forwards, to not questioning what is happening or checking how we feel about it. I hadn’t stopped for a while now and just asked the simplest question of all “Am I happy?”. I wasn’t, I was letting myself disappear under the pain and trials of my life and I wasn’t listening to me. Not my body, I listen to it all the time, but I wasn’t listening to me and I was vanishing under it all. Yes, I am brighter, I am more chirpy because I am here again and in control again. I know where I am going and what is happening, I can’t control that, but I can control my happiness. There are so many elements required to be happy, being in control, having plans, setting goals and having achievements and not one of them is affected by our physical pain, weakness or strength. All of them come from our mental well-being, something that is easy to ignore, especially when you live within a fog.

Please read my blog from 2 years ago – 01/08/2013 – Just not getting thereĀ 

6am, I was awake, I am never awake that early but a pain in my left heel was screaming at me and 2 and a half hours later, well it calmed down but it is still there. I am making a huge guess here, but I think it is pressure point pain. I have had spells of it before but never in such

It’s all change and all wrong

I woke in the middle of the night this time, not because of any dream, no this time it was fear that woke me. It is no secret that I have huge issues with my bowels or that last Friday night was not the greatest night, I was up several times and as I always go the loo when I am awake at night, too many occasions of going back to bed then having to get up again, so when I woke I had no desire to go to the loo and I headed off to just start my day. At around 11 am, just before I went to wake Adam I went for a pee, to my shock when I dried myself I found far more than just liquid, I didn’t have the slightest idea how or when I had soiled myself, but I had. In the last couple of years, I have gone through spells of mild incontinence but it has always been identical, I am totally unaware anything is that low in my system, but the second it touches my skin, by clenching my buttocks I can make it to the loo without any further issues. Saturday morning was totally different, not loose and I felt nothing, I hadn’t even passed any wind, not the slightest thing, I couldn’t even be sure when it happened. It could have been anytime from my last visit to the loo during the night, or while I was in the bathroom. It was that realization that prompted a horrid picture in my mind, that it had happened while I was asleep, I knew it couldn’t have been that bad as there was no smearing or anything like it, but I just couldn’t be sure. Somehow I had to get Adam out of bed and check that there was nothing more left behind me on the sheets, to my relief everything was clear. Nothing more happened that day so I put it down as some odd one off and nothing to give another thought too.

Sunday afternoon it happened again and again there was nothing at all that I had felt, not wind, not movement not anything. Then again on Monday, just after my lunch and all of them exactly the same and around the same amount. I have been taking all the drugs that are supposed to help me control my bowels, but I still haven’t had any luck in getting them to move, despite taking the stronger laxative for three nights in a row. Last night after finding yet another accident just before Adam came home, I had no choice other than to take it again last night, I woke in the middle of the night, luckily not making a mess of myself, but because I had the worst wind in history and it was leaving with force. I had taken the higher dose last night reluctantly as every time I have it has caused me great pain, I felt kind of trapped into it as what else could I do. With my bowels refusing to clear yet leaking small amounts which I can only guess were appearing very slowly rather than in one movement, the only way that I could see to stop the accidents was to force them to clear. For some reason, the pain didn’t appear and the expected wind was double anything I have had in the past, even though I was sound asleep, the second I woke I knew what had woken me, I honestly thought that I had messed myself badly. As I woke more wind escaped me and I knew then that I wasn’t feeling it internally at all and it wasn’t until it touched my thigh that I felt anything. My fears were misplaced, but the damage of waking me had been done, so once again I was sat in the kitchen having tried yet again without luck to clear what wasn’t either low enough down in my system to get rid of or that my muscles were totally unable to shift. I sat there for about another ten minutes trying once again work out what I could do about the whole thing as the way my stomach felt at that second, nothing was happening. I couldn’t feel any internal movement, no pain, no spasms, nothing internal at all that could possibly mean that anytime soon I would be going. I did consider taking another dose at that point, after all it was only just gone midnight, but I thought better of it, fear of causing myself pain is a very sobering thing and no matter how desperate I am, I still try to avoid it whenever possible.

This morning, well I have moved another small amount and the wind that had me out of bed and as close to dashing to the loo last night, has totally gone. What hasn’t gone is the pain in my diaphragm, the internal pressure is still pushing on it and I am once again at a loss as to what to do, I don’t want to take the boosters as I explained yesterday and I really don’t want to run the risk of another disturbed night because of what that does to my health in general. It is now four full months since I have managed to go to the loo without drastic measure, four months of pain in both my diaphragm and my stomach, four months of disturbed nights and four months in which to become totally fed up with the whole thing. I just wonder how those doctors at the hospital where I am still waiting to go would like to live the life I have done for the past four months?

I know there are a still a lot of hours until I am at the point of having to decide just what to do and what meds to take tonight, a lot of time where something just might happen, but I know my body rather well and if I don’t go again within the next three hours, I won’t. Clearly the nerves in my intestine aren’t getting any better, they seem totally incapable now of just doing what they were made for. In January, the problem started with those huge lumps I couldn’t pass, lumps caused as it was compacting throughout me, then I eventually after a month of talking to my doctor I was prescribed meds that would soften my stools and for a short while there was an improvement. Now, they seemed to have become much worse, they can’t even shift what is soft and should pass without issue, but nothing is happening the way it should. The pain the other night, well that was caused by all this, just as it was back in January and February. March wasn’t too bad, yes pain, but I could at least once a week clear my insides, now I can’t even do that taking the highest dose of laxatives which just two months ago had me running to the loo several times a day and often into the next day. Once more my insides are at a stand still and the last few days are yet more proof of dead nerves, nerves that aren’t responding to anything even things that should have an instant impact on my brain. Friday was the last time that I felt pain in my stomach, since then the all the pain has been in diaphragm, that alone is not right, I know I should be feeling pain as almost nothing has changed since then, yet all I feel is this never-ending pressure. It is that black and white, one day in agony all over the place, the next nothing. Something has really changed and I can’t say I like it, at least when you feel pain, you know it’s alive.

Read my blog from 2 years ago today – 29/04/13 – Accidents happen

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 lifelong smoker and I have used a zippo lighter throughout the majority of those years, so I know all too 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…….

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…….