I hate me

I thought I had seen everything that my body could do, that was until the other morning. I had woken with the alarm clock and just as normal, I swung my legs over the edge of the mattress, and I placed my feet not quite on the floor, but a fraction of an inch above it. I always sit there for a few seconds, just long enough to be sure I am safe to start getting dressed, it was then that it started. My feet were dancing. Well, they weren’t sitting still, that was for sure. They were flicking up and down, bobbing and twitching from side to side, and I couldn’t stop them. Well, I could, when I pushed them into the floor, but if I just let them be, they danced. I have seen tremor, spasm and so on, but what I was seeing, wasn’t like any of them. It was as thought they had totally independent lives from the rest of me. From my hips down, each leg was bobbing about as thought they were insane. I sat there just watching them, for about a minute or so, it was quite honestly fascinating. I know many wouldn’t have seen it that way, but when you have lived inside a body that does so many odd things, to find a new one and one so detailed, I was fascinated. Eventually, I took control and dressed, somewhat awkwardly, as getting my legs into my trousers was a more than interesting experience, just as putting my socks on was, but I got there.

To be fair, most of my body was a little on the jiggy side, which meant the start of my day was more than just interesting, it was frustrating. Even using my computer mouse wasn’t like most mornings, it appeared that my body had lost all memory of fine motor skills. The cursor frequently flew across the screen in front of my eyes, in response to my involuntary jerks. It didn’t matter if it were my feet, my hands or even my head, nothing wanted to sit still and nothing happened with ease. Clearly it was going to be an entertaining and frustrating day, all rolled into one. I have lived for years with the twitch in my spine that means I jig around when sitting, but usually the rest of me is controllable. Yes, it does get annoying at times and I do get incredibly fed up with my upper body bouncing around, but I can control it. My favourite trick is to push my spine onto a solid surface or to squash myself into the corner of the settee. That way I am trapped and the unwanted movements are restricted. To apply that trick to every twitching part of me, I would have to return to bed, something I had no intention of doing. Sitting at my desk, helped a bit, but I couldn’t just sit here, feet flat on the floor, back shoved into the backrest and my hands flat on the desk, any more than I could go back to bed, there had to be another answer.

Relaxation is another thing that works, but it’s not practical if you want to get on with life. Which was exactly what I wanted to do and did. To my surprise, other than typing, I managed reasonably well. I honestly thought that there was no way of living normally with your body doing so many crazy things, but you can. OK, if someone had been watching me, it would have looked wild, but even though everything took a bit longer, it is still possible to keep going. I have seen people on TV with server twitches and wondered how they kept going, now I know. All you do is ignore the madness and do what you always do. Visually, the maddest thing had to be when I was in my wheelchair. My feet don’t actually touch the floor, they sort of dangle below the cushion. I took the foot rests of months ago, as it reduces the turning circle, something which was much needed in the house. Giving my legs freedom in that way was bizarre, they were flying all over the place, bashing off each other, the wheels and anything they could reach. I didn’t need a mirror to know how stupid it must have looked.

This first attack was three days ago. I have no idea what started it, but I can only guess that it is the next phase of the flare that started a couple of weeks ago, and possibly a new lesion on my spine. From its start to now, I would say that I have had maybe five or six attacks of full jigging. They seem to last about an hour or so, then slowly quieten down until they stop. All apart from the one I normally live with. I have had a couple of occasions where it all got too much, yesterday, I became so frustrated trying to type, that I actually did scream out loud and smack my hands off the keyboard. No it didn’t achieve anything, the twitching was still there and my fingers were still refusing to do as they were told, but I have to admit, I did feel better for it. The second one was even worse, and it saw me scurrying off into the bedroom. I had to lie down, to pin all of me to the mattress and take control of every annoying muscle. Lying there, I was free to use not just the pin-down method, but to also apply relaxation. I lay there for about half an hour, calming myself down, and slowly finding peace in my own body.

I have no way of knowing if this is another new normal, or if it is going to be one of those short-lived annoying spells that will fade and vanish as quickly as it started. It doesn’t need a genius to guess which I would prefer. It is as exhausting as it is annoying, but there is nothing else I can do about it, other than going with the flow. There are days when I really hate my body, and this is one of them.


Please read my blog from 2 years ago today – Lobe loss

I received a letter from the doctors yesterday, they are sending out the MS Support Worker for their annual visit. I thought a support worker was supposed to be the person you called when or if you need help, it was only when I reached the bottom of the page that I found for the third time in three years, my support worker has changed. I know these things happen, staff change constantly…..

Seeing the truth

Yesterday really shook me up. Even now, more than 24 hours later, I can’t believe what happened to me, and how out of control our own bodies can get. I never once imagined that my muscles could while I was awake, actually do such things. It was bad enough when my limbs were out of my control, but when my own voice started making involuntary sounds, well I was more than a little shook up. All day yesterday, I was kind of waiting for it to happen again, of course, it didn’t, but I was waiting. Although the twitches and tremors had died back to what I would call normal, small sporadic actions that do no actual harm, where my limbs sort of shake rather than jump, I spent the whole day on edge. The weakness that I had experienced hadn’t vanished though, but I was at least able to stand for a few seconds without having to grab hold of something out of fear. Even when I wrote my blog yesterday, I hadn’t really grasped the magnitude of what had happened, or the impact, that it had had on me. I am so used to just taking things in my stride, just telling myself that it didn’t matter and that I could deal with it, but this was different. I guess the day had to come when something happened that I wasn’t ready for, something that actually truly freaked me out. I think I spent the whole day in a state of bravado, even to myself.

I did what I always do when I’m not sure of myself, I kept myself busy. I did anything that would distract me from thinking, the second I had finished every part of my daily routine, I headed straight into playing games. Not too much of a surprise, that every game I played, I was scoring the most terrible scores. My brain just wasn’t able to hold well to anything. I actually read back yesterday’s blog this morning and had to rewrite parts of it, as in places my words just didn’t flow. I also had some huge grammatical and spelling mistakes, that I just hope my readers will forgive me for. I think it was then, that I realised that bravado only works when people can actually see you, writing has a huge flaw, it’s permanent.

I guess that life is just getting to me at the minute and as always, once I am under pressure, everything about me goes wrong. PRMS is like that, let life wind you up and it flares into doing whatever it can to make things worse. But this time, it’s timing really stinks. Adam needs me to be strong right now, because of his mother’s mastectomy, we now have a date, it’s the beginning of next months, so not too long to wait now. Adam is wound up and feels useless as always, he is desperate to do something to help, but knows there is nothing he can do is stressing him out. I have watched his stress levels growing, which as always, means I begin to stress. I sent her flowers last week, with a note that said, “We more than many, know what it’s like to wait”. I knew that post her op, everyone will send flowers, visit and so on, but right now, is when the pressure is really on her, she would be feeling supported, but also very alone, willing them just to get on with it. I think being given the date yesterday will help her. As for Adam, well I’m the only person he had to turn to. I told him yesterday that he should tell his boss, that way, should his Mum need him, they might look favourably towards him taking time off. I also hoped that it would open up another channel if he needed it, someone else to talk to, which is exactly what he said they offered.

Add in my being stressed over the broadband, which I know to many people isn’t something to stress over, but to me, not having it is like the removal of my life. It’s not fixed, but it’s a lot better than it was, which doesn’t stop me from checking it’s speed all the time. Just to add to lifes problems, Adam discovered last night that the shower isn’t working, so we now have to find either someone to fix it or the money for a new one, it’s just one more hassle, that we really don’t need. It means, either way, more strangers in my home, more people to deal with and more stress. On the good side, Adam does have a few days planned off next week, so if we can get it all done over the weekend, or at least at the start of the week, I won’t be facing it alone. If that wasn’t enough, in just three days time, I will be having my PIP assessment. Something else that could totally change our lives. Neither of us really know what to expect, of course, we’ve checked it out online, but that doesn’t mean we really know what it will be like. The good side is, of course, that they will be here in our home, so they can really see and appreciate the problems that I am faced with daily. Life right now is one growing stress over another. Then on top of all of that, my body decides to go mad. Now it’s my body, I will no matter what it does deal with it, but right now, what worries me, is its effect on Adam. He really doesn’t need to be worrying about me on top of all of it, but he will.

Life just doesn’t seem to be giving us a break, or even the breathing space between things. It is only April and I can honestly say that since the beginning of the year it has been problem, after problem, after problem. All I want is a few weeks, when life is just its normal boring self, is that too much to ask for?


Please read my blog from 2 years ago today – 23/04/2014 – Does it matter?

You would think that a pain that started 35 years ago would by now have lessened and turned into something that I would by able to remember without shedding tears, it appears not. Yesterday was my sons Jeffery’s birthday, I made a point when I was writing my post to not mention it, as I was to busy telling myself off for the tears I had quietly already shed. Then last night we were watching “Eastenders”, one of the main characters had died and her father was talking about how he remembered the day she was born, well that was it, the tears flowed. I have always made a point of taking the 21st of work, just for that reason, it is a day when without warning and with very little needed to trigger all the pain of his life and the tears appear, regardless how hard I try to hold them back. I think from that point on until I fell asleep, the odd tear was…..

Missing the power

I don’t really know where to start today, or even how to put into words what happened last night. I suspect that it started in many ways, just where my post ended yesterday, with me wound up about my morning spent on the phone and the internet still not working properly. When it crashed out about 3 pm, my panic button had been pressed and somehow, I had to face yet another call. Don’t worry, I’m not going into what happened on the phone, just to say, that I was on the edge all the way through. Actually, I do have to tell you one thing they said to me, as I couldn’t believe what they suggested. I was told to unplug the cable that ran from the telephone socket to my router, and to leave it unplugged for three days. Then reconnect and see if the problem was still there. That has to be the most stupid thing I have ever heard. When they said that, I did flip, as I said yesterday, I don’t like being treated as an idiot. The call ended at around 4:30 and when Adam came home at just after five, I was still in a state and the tears flowed freely as I went over what had happened that afternoon.

The pressure on me just seems to have grown and grown in the last few days. As will be clear to those who have read my previous posts, this is not the best situation for me to be in, but it is no one’s fault, just a collection of situations that have snowballed to this point. At first, once I had my tears under control, I thought everything was settled for the day, there was no more we could do, other than just enjoy our evening. I couldn’t help but notice, that my body was still reacting. I had far more tremors and twitches than normal, but they were as always harmless. By the time I was heading for bed, I knew that I was in a bit of a mess, and my final trip to the bathroom proved it. Even with my beautiful new grab rails, I had trouble making my way from my wheelchair to the loo. My legs weren’t just weak, they really were having problems holding me at all. Even my arms when I had to reach from one bar to the next, were flicking and flying around in an alarming manner. When I eventually sat down again, I was totally unable to keep my limbs still, even when I relaxed as far as I could while sitting on a toilet, they didn’t listen to me at all, they just continued to twitch and jump in an alarming fashion.

Once I was finally in the bedroom, I found myself actually unable to get out of my wheelchair. My limbs just felt so tired and useless, that I feared that if I tried to stand, I would land up face down on the floor. I had no choice other than to sit there and wait for Adam to join me, and to help me get to my feet. We stood for a couple of minutes, with Adam taking my weight completely. It was a though he was giving me his strength, in the only way that he could. We cuddle each other frequently, but this was something else and I don’t think either of us wanted to separate. When we did, he placed me gently onto the edge of the bed and bent down to take off my socks, before once again holding me and giving me just what I needed at that moment, his reassurance about life. I thought that was my day over, that all I had to do was put in my earplugs, lie down and find the sleep that always takes away anything that day had brought.

I woke, it was just after midnight and I needed desperately to go to the loo, but there was something wrong, something that just told me that my world had changed. Normally, when I wake, even if it to the sound of the alarm, I wake exactly in the position, that I went to sleep in. I sleep on my back, with my hair spread out above me and down behind the headboard. When your hair is as long as mine, it is the only place to put it, where it won’t get tangled up over night, but it also the sign that proves what I say, I don’t move a muscle once I’m asleep. When I woke, not only was some of my hair lying over one side of me, I had pulled what is meant to be Adams side of the duvet, clear of his side of the bed, and I was lying, still on my back, but on top of it. It wasn’t until I tried to move, that I started to realise just how much trouble I was really in. At first, none of my limbs were really responding,they were moving, just not always in the way that I wanted. Every movement I tried to make, was accompanied by them adding in extra movements I never asked for at all. It took me a couple of minutes to find the way to make my body do what I wanted, and to find my way to a seated position on the edge of the bed. I instinctively knew that standing wasn’t an option, so I reached for my dressing gown and put it on while seated, before pulling myself towards my chair and sliding myself into it.

Controlling my chair was more than a little interesting. The direct messages were successful, but the second I gave one arm freedom from command, it flicked and ticked until I needed it again. Throughout the entire journey, not one part of me was still. From head to toe, I was in motion and there was no way of finding stillness. Every second I was out of bed, not once did I have true control of my own body. It felt like I was having some sort of fit, I was there inside a body, that clearly didn’t belong to me any longer. Most interesting was when I went to the kitchen to try and have a cigarette. It was there, that I was suddenly on familiar ground. This had happened before, milder, but I recognised it, as it was the flailing limbs and inability to manage something as simple as flicking the ash, that triggered my recent post about tremors. Last night, though, was it’s much bigger brother, so much bigger, that I have to admit, in itself, it scared me. The cherry on the cake, was when I started making involuntary sounds from my voice box. It wasn’t me clearing my throat or anything like that, these were clear sounds, some quite, some louder, but all without my actually doing anything. I have never felt that feeling before, of actually having no control over what my body was doing. To date, I have always been able to relax my way out of individual limbs tremor, last night, I had no control what so ever. Until it happens to you, it’s hard to imagine just how distressing it is in itself. Like most people, I have seen my hands weaving their way incorrectly when drunk, but even when drunk, you have more control than you think. Seeing and feeling them jerking and twitching while you try to correct their movement, is beyond any true description I can give.

I have no idea what my body was doing when I was asleep. Whatever it was, it didn’t end at midnight. Again when I woke a 6 am, again to go to the loo, and then again just after 8 when I got up, the bed was in disarray. It appeared each time, that even sleep wasn’t managing to bring peace to my body. It appears that I spent the entire night on the move and that is so abnormal, that I honestly can’t even remember the last time, even the duvet wasn’t close to where it was when I went to sleep. When I mentioned all this to Adam, he said that he had heard me making noises last night, not words just noises, but he didn’t come through as he thought I was just talking in my sleep, something I don’t normally do. I’m glad that he didn’t come through either, I doubt the sight of me flaying about, would have done him any good. Even today has been a day of movement and motion, not as bad as yesterday, but not normal, not the way it should be. All I can do is hope, that it will settle, and finally, go away. I really don’t want this to be anywhere near, a new normal.


Please read my blog from 2 years ago today – 22/04/2014 – Nerve madness

It is strange how when your body can no longer give you the correct signals how it finds a new way of telling you what it either needs or must do. I have now for years had trouble with both my bladder and my bowels, luckily my bowels have never quite had the total disrespect for me that my bladder has as it’s way of telling me I need to empty it is to simply start leaking, effective but embarrassing. My bowels well although at times they have managed the same unsavoury trick, normally they are just that bit more discreet. You would think that somehow you would always know when either needed emptying, discomfort alone would be enough but that is a truly difficult thing to pick out amongst all the other sensations and pains that I get around my pelvic area, strangely I now get a feeling of pressure much higher…..

Today, tomorrow or the day after?

I don’t think I have ever had a symptom that has progressed quite so quickly as the one affecting my legs. Since they started to simply melt into the floor without warning, when walking about six months ago, they have climbed the symptom chart now holding a place in my top ten. Those top ten, fluctuate daily, but I don’t believe they haven’t been there or around the top five for at least over a month. From an occasional distressing moment to being in my thoughts every time I think of standing, is progression on hyper mode. I never know now when I stand to transit from where I am, to my wheelchair, or vice versa, if my legs will hold me at all. The once gentle melting motion has turned into a sort of frantic tremble followed by a distressing collapse, where luck plays a huge roll, as to being able to go anywhere.

Much of the time my movements have turned into dramatic jolts, rather than a smoothness of any kind, and to make matters worse, the arms I have been trusting to rescue me, have now joined into this game. They too are refusing to take my weight consistently. It is something that shouldn’t really surprise me, as it was their weakness that meant crashing onto the floor, was a position I needed rescuing from. Just as the joints wouldn’t lock so I could crawl to a place of safety, they now won’t lock for me to lean on like sticks, my joints are now slipping and leaving me relying on my much-withered muscles of old. I feel as though my entire body no longer has any true strength left in it. I did hope that the action of propelling myself in my wheelchair, might just have built up a little muscle of some use, but just as they wilt by the evening, they refuse frequently to be used for anything else.

I have for years now lived with tremors in my spine. Something I have written about many times. It was the first tremor to appear, just eighteen months post diagnosis. At first, it was distressing, but I slowly became used to it. Sitting still is now something that I don’t do a lot of, unless, I have my back pushed into cushions, or when I am hunched forwards and my body braced by my elbows and forearms on my knees. So to find that both of my arms and legs are now also twitching, even jumping, hasn’t really been something that I have welcomed. By the time I join Adam on the settee in the evening, I am tired, but looking forwards to a restful couple of hours. That aspect is slowly being eaten away. It’s not as though they are flying around all the time, but it will happen at least once in every fifteen minutes. Like everything else it varies between gentle and mildly annoying, through to aggressive and highly annoying. Should I decide to do something as simple as reposition my foot on the floor, that foot won’t simply move, but will fight back and flick and kick while I find it’s new spot.

I don’t know why, as it makes not the slightest bit of sense, but I kept just hoping that it would all just go away. Why would they just go away, nothing else has, so why would these? I think I had this idea in the back of my head, that they were some sort of oddity, one of those things that just were, and as easily could be not there. No such luck, they just keep getting worse and are now showing themselves in some of the oddest way and at the oddest times. Like when I am stubbing out a cigarette, instead of a smooth couple of stabs at the ashtray, on the second or third, my shoulder and upper arm will simply collapse. There is no reason for it, no strain, or speed, nothing other than I am using it. Even when at rest, I have seen my fingers dancing, they most of all seem to take great pleasure of getting in the way of each other when I am typing. For me, that has to be the most annoying action, as I type rather a lot.

It isn’t something that I usually do, but I have a growing vision of the future where most things will become difficult because of them. We take every action we make for granted, it is something that most of us have to really think of. If you want to have a drink, well your hand goes there, picks up your glass and without being asked or drama, it just lifts your glass to your mouth. What is there to think about, we’ve been doing it since we are children, just as we learned to stand and to walk, as adults, we have nothing to think about, we just do whatever we want. But should you reach to pick up a pen, and you see your hand, I repeat your hand, hesitating, almost stuttering in the air, unable to grasp the desired object, without hitting the surface of your desk or knocking into other objects. You witness it, with the same difficulty as your hand appears to be having in performing what should be a simple task. It doesn’t get any easier, even if that is the fifth or the fifties time this has happened, because, it shouldn’t be happening, not to you, not to your hand, not your foot, not your leg. Add to it, the insult that you did just the same action five minutes ago without issue. It’s an insult, because, your own body is breaking the first promise you ever heard, to do what you want, when you want to without issue. That broken promise hurts.

For me, the unpredictability, the never knowing when or if, well, that is hard to deal with. The not knowing if it will be tomorrow or the day after, or even a year from now, that they will refuse totally for the very last time to do anything with ease. That more than anything is the true pain of this illness, the fact that all of it, is so unpredictable. I know that we all live with the unknown, that none known factor if we will be alive a single second from now, but I along with all who share my conditions, have true reason to feel it more than most. The trick is, if there is one, is to not to worry about the next second, but to give thanks for the one that’s just gone, no matter how hard that second was.


Please read my blog from 2 years ago today – 15/04/2014 – Priority one

Uncomfortable. One word that sums up my entire morning so far, everything seems to be aching and once more there is no single position that allows me to stay still for more than just a few minutes. Mornings like this inevitably make everything else slow or hard going, when your mind is pulled constantly to this bit or that bit that can’t put up with the position it is in, well you loose track, become fractious and quite simply find yourself going round in circles, repeating, or missing out steps along the way. There is also a growing desire to just stop, to give up trying and to slide back into bed where at least comfort can always be found. That though would be giving…..

On the move

I found myself sitting on the toilet, watching my left hand intently. I have had odd spells of tremors for years now, but this, this was somehow different. It wasn’t my entire hand that was moving, it was just my fingers, almost as though they were playing an invisible piano, apart from my middle finger, it alone was moving side to side frantically searching. My tremors have returned, visible to the world, not hidden and slight, but in a fashion where the slightest glance can see. My hand was the last part of me to think that it was funny. For the past week, my spine and legs have been dancing around like a stringed puppet in the hands of a child. I was sat there, staring at the last thing that I believed that I still had total control over, proving once again that I was wrong.

When my health took its major dip, the one that led to my being give chemo, to kill off my immune system, in the hope that when it kicked back in, it might not be quite so aggressive towards my body, tremors were the most visible symptom I had. I shook like a jelly on a plate. Like now, and as it has been for 13 years, I have little control over my core. Somewhere in my spine, around about my waistline, there is a nerve that enjoys jumping. The result is that I sort of shudder and quiver. Back then it was constant and there was nothing I could do about it. Now, well, it comes and goes, right now, clearly it’s here. I have learnt tricks, like sitting in the corner of the settee, with my back pushed back into the cushions, so that the tremor is limited. If it is my hands that I want still, well I can either, which looks kind of silly, spread them tightly into a star, or, turn all my fingers in, so that my nails rest on my thumbs, somewhat like a lose clench. Of course, the one place where I can stop nearly all of them is lying flat on my back in bed. It’s easy then to pin everything in a way that makes any movement both difficult, and unlikely. To date, the one thing I can’t hide is when my legs start to jump. Even in bed, that one is visible and according to Adam, keeps him awake. Tremors may not hurt, but when your body is in constant motion, and you’re a poor traveller like me, the side-effect of seasickness is always around.

Why I am suddenly in constant motion, I have no idea. Stupidly yesterday even Adam asked, “Do you know what triggered it?” If I did, don’t you think that I would avoid it? What I do like, is when it is at its most violent, Adam has decided that it is up to him, to provide stability. I like it, because, he wraps his arms around me and doesn’t let go. He is clearly scared that I am going to fall, or that I will career into things. At times, he offers to hold me, even when I am sat down. From the look on his face, I can tell that it appears as though I am in pain from it, but I’m not. The closest to pain that my tremors cause really doesn’t come from them, but from my stomach or a spasm somewhere, combined with badly placed tremors, well, comfort is far away. It goes without saying, that I drop more things, send more cigarettes flying through the air, and gather bruises, as my limbs slam into furniture that of course, I know is there, but they have clearly forgotten.

Although I have seen tremors listed as a symptom of PRMS, in fact, all forms of MS, I haven’t really seen that many people writing about them, actually, I haven’t seen any. To the outside world, those who know little about us, it is a symptom more often associated with Parkinsons, what many don’t realise, is the two conditions hold a lot of similarities. On days like today, even I wonder, but as I already know the truth, I just quietly shake and wait in hope that tomorrow it will be gone. I remember years ago, when I was still actually taking the bus to work, so that says it has to be about 14 years ago now, that having a tremor was useful. I had grown used to the fact that my condition was invisible, suddenly people could see there was something wrong. I didn’t care what condition they thought I had, as long as someone was kind enough to offer me a seat. Back then they tried sending me to physio, in the belief that if I could strengthen my core muscles, then I would stop dancing around. Like almost everything I tried, it didn’t work. It did help to improve my stomachs flatness, but they weren’t actually too bad before they started. What I would give for a flat stomach these days, well, I’d give almost anything, but I bet, I’d still be trembling.

One of the side effects of tremors, like this, is the energy that they use. I am always more tired, which isn’t really surprising, as I am never still. What I’m not so sure about, is why my speech always seems to dip with it as well? I know that could have something to do with the fatigue, but even early in the day, I seem to stutter more and be less able in my conversation. I would almost say, that I develop a tremor in my brain and in my vocal cords, as mad as that might sound. Whatever is behind it, the result is a stuttering, jumping, quivering mess, otherwise know as my life.


Please read my blog from 2 years ago today – 20/03/2014 – What is that?

I headed for bed last night not even sure if I was going to make the short journey from kitchen to bedroom. Adam was making himself something to eat and I made a point of covering up the pain I was in as I knew he would just head off into a panic, the pain was in the back of my right lung and it was agony. Over the hour before I went to bed I had as always just been watching TV sat on the settee, the pain started just as a dull ache but I built and built, by the time I went to say good night to Adam, every step I was taking caused the pain to peak from the shock-wave of my foot just hitting the floor. I knew that I had my stash of tablet on the chest of draws by my bed and that was the only thought that kept me going as I tried to take off my dressing gown and hang……