The point of strength

For the last few months, I have been tucking the edge of the duvet in to prevent my feet from wandering onto the floor. It was one of those really annoying things that I was doing in my sleep. The result, though, was I woke with my body arched like a banana and my back screaming in pain. The pain was so bad, that despite being cold, I often took ages to bring my legs back under the covers. When we decided to buy the king size duvet for our double bed, the spare duvet supplied proved to be the answer. Until last Friday night, this worked perfectly, the only issue was how I have to get in and out of bed. It means a painful manoeuvring of my legs into a tucked position just so I can getting in and out, but on balance, it wins hands down. I woke in the early hours of Saturday to find myself lying on top of the bed. How I got there without hurting myself or waking up, I don’t have a clue. Getting back into bed showed me that the duvet was still perfectly tucked in. I had to have sat up in the bed, brought my legs out and lain down again. To have done all that without noticing any of it, simply amazed me. I was even more shocked when I woke in the early hours of this morning in exactly the same position. Several months ago, I joked about the fact that I might just be about to take up sleep walking. I really was joking back then, as my legs slipping off the mattress wasn’t exactly a truly thought out move, this clearly is. I have already decided that tonight when I get into bed, that I will tuck the upper half of the duvet in as I lie down. Hopefully that way I will stay where I am supposed to be, in bed.

My brain never stops to amaze me with the things that it comes up with just to make life that touch more complicated. It’s hard enough to walk around the house when I am awake. The idea that it is going to take me for a wonder in my sleep may sound funny, but I fear the results might just not be. Having said that, it has been a while now since I last took a tumble. I seem to be doing a lot of stumbling in its place. The strength in my legs just disappear, or more frequently, I find my toes stubbing off the floor. Luckily, it’s normally just my leg or my foot at one time, but they have happened together. Finding your leg suddenly not there, or not having the strength in them to stand up, doesn’t get any easier. I thought that when it started happening like so many other things in my life, that I would get used to it. Clearly I will always be surprised, as it happens out of the blue, but it’s that shock angle that I thought would settle. Every time it happens, it feels like the first time. I am always shocked that the muscles have failed and returned. The closest I have got to understanding where the shock came from is because when my left arm failed, it was dead for months. This business of not there one step back the next is somehow more unsettling. It’s like I am being stalked by an event, it’s hanging around in the background watching and waiting for the next opportunity to catch me out. There is also that added threat, that I will go for that next step so that I don’t fall, expecting it to be fine, only to find that that was its last step forever.

Progressive illness is living your entire life under a threat. None of us has the slightest clue which part of our illness will get worse next or what it will do to us when it happens. Most progressive illnesses are slow and steady, a bit by bit process. PRMS and I suspect the other forms of progressive MS often seem to act in sudden jumps. Because most of the damage done to us is caused by lesions destroying the nervous system, so we don’t always get clues. often the nerve will continue to work normally until the last second when the Myelin is totally cut in two. I frequently describe it as the lesions eating me, as that is the picture that appeared in my mind when I first read about it. I saw this evil little PacMan type creature, not cute at all, eating away at my brain. That was where they first found them when they performed an MRI, there they were, loads of them, eating my brain. Whether it is in my brain, my spine or anywhere else, right now the preparation work on removing something from is underway. The threat is in action, in fact, multiple threats are in action and I’m just waiting to discover their results. Clearly there are often clues when I start to develop a weakness, or like my chest where the muscles are being triggered to get tighter and tighter. Just like spasms the messages are being sent but are miss read due to distortion. Like sending a message down a multi-core wire that nicks in it. The message gets there, but it is crackly and odd sounding so the muscle reaction is also distorted. The threat is there all the time, what will it do today, tomorrow, next month or next year. How distorted will those messages be and how long before they stop forever?

If you were to think about it every minute of every day, you would go mad. If I were to sit here right now and just make a list of all the symptoms, the areas their in and the possible outcome of what is happening, it would be horrific. That’s just for right now, that’s not how it will be in an hour from now, it’s always changing. You can’t let yourself monitor it constantly, not even daily in detail, as that is the road to disaster. That I think is where our personal strength comes into play. We have to be strong enough not to drive ourselves mad. To stop ourselves from wallowing in the actuals, possibilities and results. You can’t stop yourself from reacting mentally when your foot drops, or you can’t breath or your bladder hasn’t held until you reached the bathroom. Reacting is normal and impossible not to do, but wallowing, that is painful and not needed. It takes strength to accept, sort it out and move on. It takes strength to grasp hold of your thoughts and direct them in a different direction and not to return. Our strength has to be mental, not physical. It is also a strength just like the physical one, that you can train, exercise and enhance. The more you use it, the stronger it gets. It doesn’t matter what our health does to us, that mental strength is what will carry all of us through and into our futures. Pain, discomfort, embarrassment, fear and despair, are all controllable.

I know that threat is always there, that my health will come up with more and more things to test me. I know that warning or not, my body will always catch me out and do things I never once imagined possible. But I believe that I am strong enough to keep putting it where it belongs, here in my daily posts and not in my daily life.

Please read my blog from 2 years ago – 23/08/2013 – The truth of pain

Once more back sat at my PC and with little surprise Adam is snoring his way thorough the 3rd of his holiday days. Just wanting a day to be normal isn’t enough, even when all the elements of……….

The floor or me

With my lunch in hand, I was heading back to the living room inspired by the thought of my two softly fried eggs, with their yokes spreading over my pancakes and dripping as I ate them. Half way across the hall, suddenly my left leg wasn’t holding me up any longer. I couldn’t reach that point where my knee should take over, straightening my leg and taking fully my weight. I could reach nothing beyond a rather odd bent seated position. I managed to bring my right leg forwards and avoided what would have been the next position, on the floor. Restoring balance was essential, just as essential as not letting my eggs slide off my plate onto the carpet. I was in clear danger of falling either because my legs just weren’t going to hold me, or the fact that I didn’t have a free hand to hold out to the wall while I regained normality. Luckily, Adam was digging about in the fridge and couldn’t see what was happening, otherwise he would have shouted which would have just made things worse. When you are fighting with your body, the last thing you need is someone taking your attention away from your dilemma. Both of my legs just felt wrong. Weak and as though neither had the strength to make it the rest of the way. There wasn’t any choice though and I had to make it through the doorway, after that, well there were plenty of spots where I could stop and sit for a second while it all improved.

The hallway has been my nemesis for years. There is nothing out there to hold onto, lean on or sit on and nowhere to add one. There is only one space that would assist with a grab rail, but it is right above the only storage heater in the house. Without that heater, the house would freeze in the winter, but once hot, well the grab rail would lose its purpose. You can’t hold onto a metal rail that is over 60 degrees. It was in the hallway that I discovered that I could no longer crawl on all fours. Something an 8-month-old can do was now impossible without crashing face first into the floor as my arms won’t hold me up any longer. Neither now have that strength. Rolling has been off my standard list of way to move around even longer than crawling, but I can still commando crawl. Loose pyjamas make it not only ungainly but difficult as my trousers keep sliding off. Any other room in the house is fine. There are things all over the place that I can rescue myself with. If I do hit the floor well I am always close to something that I can pull myself back up onto my feet with. The hallway is a void that I can’t bypass and has to be crossed several times a day. Fall out there and it is going to be a painful, slow and long time before my feet are back where they should be, blow me, taking my weight.

All I had to take were four more steps, that was all I needed. Step one found cringing in sudden sharp pain that was a total shock. I had stubbed all my toes on my left foot off the carpet. Just as my leg has failed under me, my foot was now dropped and not working properly. The next steps contained a growing fear, but momentum built up from my natural desperation to find stability took me through them. Right leg fine, left leg still didn’t have a knee, my leg was straighter, probably because I had more dragged and flung it ahead of me than taken a controlled step. Right leg again and I had made it. All that I had to do was swing myself around the open door and the arm of the small settee where I could rest was waiting. I sat there looking in wonder at the still complete plate of food that was still there in my hand. My desperation to not send it flying across the hallway making a mess of the carpet, or worse the arm of our white settee I had seen ahead of me, had saved me as well. Being a perfectionist, I maybe can’t do anything about cleaning our home any longer, but the drive to not make a mess has saved me many times. To date, I have never hit the floor while carrying anything. Maybe I should just carry a glass of coke with me where ever I go. I fear though that would be a theory that would go out of its way to prove me wrong.

I don’t know what caused it, but my legs, my left more than my right one, just didn’t feel as though they were there, and clearly didn’t have the strength to hold me. It’s far from the first time this has happened. It’s been part of my life for many years, but lately, well lately it is happening more and more. Although I have been trying not to, I am beginning to think that I have a real problem emerging. There is no longer a time of day or location where this or something similar has happened. Ever since my COPD exacerbation I have had weak legs. I kept telling myself that as my general strength returned so would my legs. Unfortunately, it has been the total opposite. It doesn’t happen every day, but it can equally happen five or six times in the same day. Some dramatic like yesterday’s lunchtime felt, to the most frequent when standing up from the sitting for a while on the settee. In fact, thinking about it, that is the place that I first felt it clearly and strongly that I just couldn’t stand unaided. Standing up, be it from a chair, my bed or even the toilet is a danger moment in one respect, but equally as I have somewhere to sit again a safe danger. That first moment of standing is the time that I feel it the most. It is like my legs are made of plasticine, clay or blancmange. Until I am vertical, I just don’t know which I will find. This recent addition of it happening while I am standing or walking isn’t good news, progression never is. I have lost count of the number of times that it has happened and that is only in the past week. How many times it has happened in the past month, well I would prefer not to think about it. On the good side, I have only failed totally and found myself on the floor twice because of it so far. One I mentioned, it was in the bedroom and I landed up sliding down the wall by the door. The other was in the kitchen, painless and recoverable, if there is a good place to fall, for me it is the kitchen. The room is so big, that I normally manage to twist so that I hit nothing other than the floor.

Right now I am not sure what I am going to do about it. I know for a fact that my walking stick is totally useless. Firstly because it has been behind several more serious accidents that I would have had if I hadn’t had it with me. Trust me, getting a walking stick caught in your clothing and making you fall, when there was no other reason, just isn’t helpful, Nor is getting the stick caught between my legs as I twisted and fell, it isn’t helpful and it is painful. My final reason should be clear to all, my arms can’t hold me when I crawl, they aren’t going to have the strength individually to support me on the wobbly point of a walking stick. I have already had the OT out here to assess our home for a wheelchair, it can’t be done. Our house is totally unsuitable for either a slim manual or electric. All our doorways are fine other than the bathroom, it is totally useless, so are our floor surfaces. The floors could be changed, but it’s impossible to change that door, it’s slim for a reason, they couldn’t make it any wider.

I am going to give it another month to see what happens. There is always a chance that things will improve, no matter how unlikely I believe that chance to be. If it suddenly gets worse, then yes I will call for help, but I don’t think that I am that far away from having to have some kind of walker, be it on wheels or just a frame. Falling held no fear for me in the past as I could get up. When you can’t just stand up and the whole issue of getting to somewhere that you can is a nightmare, everything changes. I could cope without much thought when it was a blue moon issue, that moon has gone and I need to start thinking about this with a lot more reality thrown in.

Please read my blog from 2 years ago – 26/07/2013 – No longer a book

I haven’t the slightest idea why, but today has a feeling to it that somehow means I am playing catch-up, which is complete madness as I have nothing to catch-up with. I love odd sensations like that, when somewhere in the back of your mind something is triggered and try as you might, there is neither….

It all adds up

Yesterday was my pancake-making marathon, I have definitely decided for now that the best, simplest and most flexible way of eating Psyllium is pancakes. There are so many different things you can add to them so they just don’t get boring. I would recommend though that you use yeast to raise them, as it makes a much lighter mix as Psyllium does make everything heavy. I am at last starting to get some results as well. I have actually in the last few days started to go to the loo without straining for hours or pain that makes me feel as though I am going to pass out. It’s a slow process but it’s happening and that to me is a wonderful result after the past six months of hell. I think I have worked out why it works as well. Clearly not all the nerves in my intestine are dead, more weakened and unable to manage the daily transition most are. 10 – 14 days I know is slow and a very long time, but the sliminess that the Psyllium produces, means that even my weak nerves can manage to get it out of me eventually. Now knowing that that isn’t actually doing me any harm, I can live with that. It has been really hard to know what was working and what wasn’t. Firstly because of my week of not eating due to my COPD exacerbation, then I had a stomach bug a couple of weeks later and I was once more empty and back at the beginning of having to fill myself before I knew if it was going to work or not. Day 11 of food arrived and result. I’m not expecting to go daily as I don’t eat enough for that, but as long as I go every few days, then I won’t be complaining. As I said yesterday, the daily pain is just something that I will have to live with, but that’s a different issue.

I am finding this switching everything over to my new site hard going. My brain really doesn’t want to take in all the information that setting something up like this takes. I had been over and over the same problems so many times and forgotten so many times where things are, that my head almost hurts with all the coming and going. I know that without a doubt this site is well set out and easy to navigate, if you have a brain that remembers. For someone like me it is a total nightmare. I know that there will be a point when I do remember and I don’t have to relearn what I worked out and thought I had under control an hour ago, that point can’t come quick enough. I know that there won’t be a single person from my old site who isn’t pissed off by having to move, but I bet there are only a handful of us having issues like I am having. I know this is an extreme situation and no business plans to go under, but when you live with brain damage that sees change as a personal attack, being forced to deal with the new and complex is a step beyond a nightmare, whatever that is. Because I am who I am, I didn’t do the sensible thing. I didn’t spend several weeks setting things up and reading everything about the site before starting the actual work of shifting and working in a new environment. That would have been sensible. My brain doesn’t do sensible, it just does panic. It only knows how to react these days, not plan it. I got the message the site was closing in December, and I had to do it there and then. On the good side, the panic has gone, I’m just living with confusion and the ever resident frustration.

I am still at a loss as to what happened to my right arm yesterday. It was lunch time before the numbness wore off totally and I could actually feel it when I stuck a fingernail into it. It was weird all morning picking up my glass and to feel it in half of my hand, but not on my index and thumb. I had to keep checking that my thumb was doing the job as it felt as though the glass could fall any second. Not being able to trust my body is something I am reasonably used to. It can be scary at times, as I find myself constantly jumping in expectation of my falling, or tripping, or dropping something. Most of the time it is perfectly OK, but the longer you live with a body that doesn’t act in the way it should, the more that mistrust grows. I have been extra jumpy in the last few weeks as since my exacerbation I seem to be finding myself not quite so well balanced. Sideways steps keep appearing in all my forward motions and nerves are jumping and throwing me off constantly. If you go to put your foot on the floor and suddenly you foot jumps tilting itself upwards towards you knee, it’s more than off-putting. Especially when your foot hits the floor at the wrong angle. I have also noticed a marked weakness in my legs. To date, I have been able to stand on one spot for about a minute without having to check my stance or sit down. That seems to have changed as well. My legs just don’t feel able to hold me that way, I have to move about more from foot to foot and at times my knees seem to buckle with more ease. There is also a greater loss of balance at play as well, which just adds to my need to move from foot to foot. I for some reason I have my eyes shut, like when I am washing my hair, even though I do that seated, I can feel myself slowly tilting. It’s not just in my legs, my arms are misbehaving all the time as well. I have lost count of the times I have been unable to pick something up or I have hit things instead as my hand has jumped. I am sure now that the exacerbation triggered some sort of flare or acceleration, I suppose it would have been surprising if it hadn’t. It’s the reason that both Adam and I fear me catching any bugs and so on, as my PRMS will react in some way to it, even a simple cold has a knock on of some sort.

I have also been very aware that my eyesight is worse following the exacerbation as well. Everything has an extra layer of unrequired fuzz. I know my right eye problems have nothing to do with my PRMS, but as it’s my left eye that seems weaker, the culprit is easy to find. It is still my greatest fear that it is my eyesight will be the first thing to give in completely. I don’t have any reason to believe this, just the normal human fear that the one thing that would stop me dead in living my still partially independent life might be the first to succumb. I suppose we all have our personal fear of what might be the first thing to go, but I bet that eyesight will be high if not the top, on everyone’s list. Piecing together all these small things and others I have mentioned in the past month, along with their timings, well I think anyone will see the same pattern that I do, my right arm was just the missing label required for identification. With luck, it will all just settle down, without it, well we will see. My ever present friend the waiting game has another string to observe over the next few weeks.

Please read my blog from 2 years ago – 20/07/2013 – When weakness take over

There is nothing like fighting with a bottle of coke where the factory has added the cap so tightly fixed that you just can’t open them. If you don’t at this second in time have a set of old fashioned nut cracker, I suggest that you buy some right now. Of all the silly little things I bought years ago it is the one I have used the most. Fabulous for opening Champagne, well in my case Carver with ease, if you take your time, as they do slip on the plastic tops they are equally good on…..

Staying upright

Just before I woke from my afternoon nap, strangely I remember dreaming, I know we all dream but I don’t normally remember them. I was back at work, in the office and feeling so ill that I was about to take time off, nothing odd you might think in that, well there is, I never took one single day off work unless I was physically in hospital, for the whole 13 years I worked for my last company. When I woke, guess what I felt terrible, but that is actually how I have been feeling for the last few days, I guess my brain was screaming at me in the only way it could to tell me to stop and just accept things aren’t as good as they could be. When you are ill and live your life on a graduated scale that starts at where most would say things are bad and just gets worse, it is hard to accept that there are still spells that come along when your body is screaming at you and you actually do have to listen. It is so easy to just keep going as you still have this stupid voice in your head that sarcastically say “well what is the worst thing that can happen, I could make myself ill”. I knew yesterday morning when I woke up so tired that walking was an interesting experience, that I had already been pushing myself beyond where I should have slowed down days ago. Having spent nearly all of my life working on and doing what everyone else did, because no one could tell me what was wrong, means that I really don’t find it easy to slow down, I still have that sarcastic voice mocking me over and over and telling me to just get on with it, as what other real choice is there. These days, well I don’t really do that much in comparison to the past but like most things it is all relevant, I can still do too much, just as I used to. Too much these days is just spending too long writing, or trying to come up with new tweets, in the past it might have been coming home from work and starting to spring clean the kitchen, as I said all relevant. Learning, remembering and actually doing what you should, never gets any easier, in fact, I would say it gets harder as I already feel somewhat pathetic over how little I can actually do these days.

Your brain never quite gets used to the changes you are forced to make to your everyday life, regardless of how slowly those changes happen, they are always too fast. The only gauge you have is to pay attention to just how tired you are feeling and how intense the muscle fatigue is, yes that gnawing pain does have a purpose other than making us miserable, it is a measure that you have to listen to as if you don’t slow down or stop, trust me it will find a way of making you. This morning there isn’t a single part of me that isn’t complaining, so today and for the next few days, I am going to have to accept that I need to slow down and I need to do what I haven’t been for the last week or so, making sure that I go to bed at the right time, those 5 to 15 minute extensions that have been happening, have to stop as does clipping a few minutes here or there off my afternoon nap. I know it sounds like such a tiny thing, it is only a few minutes, what harm can they really do, but to me they make a world of difference. Yes, life does get petty and picky but that is just the way PRMS has made it and I can’t full around with it any longer, it always wins.

When Adam is at home there is always a cable that runs from under the settee in front of my desk to the coffee table, it is the LAN for his laptop, no I won’t have WIFI, but it is something that Adam is paranoid about and he is constantly reminding me that it is there, just in case I trip over it. It isn’t actually a true trip danger, as the cable is meters in length and even when I do catch my foot in it there isn’t the slightest chance that it could cause me to fall as the cable moves freely with me, but this doesn’t stop him from reminding me every time I stand up that it is there. Yesterday despite all of that I caught my foot in it and as it does it simply settled on my ankle and I stopped to release it, without any damage to myself or anything in the room, as I said no real trip hazard. It wasn’t until I was in the kitchen that I realized that although I have explained it isn’t a real danger, I hadn’t explained why him constantly telling me it is there is totally irrelevant to everything. As mad as it sound, I have developed the ability to fall over, trip over or into, things that I not only know are there but I can actually see, it seems to have nothing to do with what so ever my brain is aware of, if my body or my brain are going to do something stupid, they will. I discovered it a few years ago when I cut myself on something that I was looking at, aware of and even mentally trying not to harm myself on, then I did. In that case, it was a sudden spasm in my hand that caused the problem and to be fair, most accidents I have are due more to my body than my brain, although occasionally it does feel like some kind of conspiracy. On the odd occasion that I have caught my foot on the cable it has been because my foot has dropped, something it does a lot, it’s almost as though the muscles give up and can’t hold it clear of the floor as it should, at it’s worst I have heard and felt it drag across the floor which when you brain has given the correct message, comes as a bit of a shock. I will admit there are occasions that I forget things, I’m not stupid enough to trust my brain, but I knew the cable was there yesterday, I hadn’t forgotten.

It’s hard to accept that both your body and brain are out to get you, that if one gets it right, the other will do it’s damnedest to get it wrong, in truth, it’s surprising more things don’t go wrong. I know without a doubt that living in a flat that is overfilled with furniture actually works to my advantage on that one. Big open spaces are my danger areas, the reason you will see many people with any form of MS walking close to walls, we love walls, they stop us from falling, as does furniture you can hold onto or fall into. Combine pure balance, bad memory, poor eyesight and spasms and you have the perfect recipe for things going wrong, probably the reason my body discovered fatigue as it keeps me sat on my backside and safe. Joking aside, I have managed to be housebound for 8 years without breaking a single bone or cutting myself that badly that I have needed medical attention, in my book, that pretty good odds when it comes to the future even if that future is only ever counted as today.


Please read my blog from 2 years ago today – 1/03/13 – Admissions

I had no excuse last night but I once again retreated to my horizontal heaven at about 8:20, Adam was in the kitchen washing the glasses that had piled up, I won’t put them in the dishwasher as it seems to destroy them regardless what they claim on the packet. I knew he would be there for about another half hour, so I took…..