I hate me

Posted on June 20, 2016 by livinginalimitedword

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

Posted on April 23, 2016 by livinginalimitedword

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…..

Today, tomorrow or the day after?

Posted on April 15, 2016 by livinginalimitedword

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…..

There are blessings

Posted on January 25, 2016 by livinginalimitedword

I’m sitting listening to yet another TV show, about staying healthy, and wondering not just why, but if this short of show, has actually changed anyone’s life for the better. There must be thousands and thousands of hours of this sort of programming shown worldwide every year, but does anyone really change their diets, or lifestyles, because someone on TV, has told them this or that is the way you’ll live longer. I have to say that I have never once actually paid attention to any of it, but I still watch, which in itself is odd. I can’t help wondering what is going on here? Look at the ratings and the shows are clearly popular, in fact, there are some channels dedicated to them, but look around and the evidence that’s out there, shows they aren’t working. If they were, we would all be pin thin joggers, who eat nothing that could do us any harm. Mind you, that might be rather hard to find, if, you listen closely to all their warnings. It’s just a thought.

A couple of months ago, I wrote about the problems that I was having with my hands I was having following moving back into my wheelchair. At first, it was aggravating my HMS and my thumb joints kept popping out, not just when I was using the chair, but when I was doing nothing. The good news is, that they aren’t doing this nearly so much. I think, that the persistent use of the muscles in my hand, has strengthened them, and the joints are being held in place better. The bad news is, I am getting more and more spasms, and my entire arms, aren’t getting stronger, just weaker. I can’t make a simple trip in my chair to the kitchen and back, without being left with pain my upper arm muscles for the next half hour. I don’t remember getting spasms in my hands, other than the odd one, very occasionally, but that has totally changed. I never get through more than a handful of hours now without them doing something odd. It can be anything from, spasms so painful, that they stop me dead and I have to massage them, in a hope of breaking the spasm, to twitching and tremors that are just plain annoying. Clearly, I do a lot of typing and have done now for years, but in the last two months or so, I have found my left hand doing the oddest of things. I’ve joked for several years now, that my Dyslexia had spread to my fingers, as I frequently hit wrong keys. Yes, I am Dyslexic, I was diagnosed before it had that name, in those days they called it word blindness, my father, just called me stupid. Now it’s not just as simple as hitting the wrong key, because, my fingers aren’t where my brain think they are, now they’re just stopping in mid-air, shaking over the keys, but unable to hit them. My right hand isn’t affected nearly so badly. There are far fewer spasms in it as well as odd movements, but that isn’t really surprising, as my left hand has been weaker for years, ever since it died and took a year to return.

It has changed so much in the last month that I am now beginning to worry about it. I’m not transfixed by it, but there are so many small things happening, that just weren’t there before I returned to using them to propel me. I can remember quite clearly what life was like when my hand died and the problems that it caused. I don’t think that my hand is about to die again, it doesn’t feel that way, but the rapid increase in odd behaviour is suggesting that it is just going to keep progressing in a direction that I really don’t like. When you can’t trust your hand to do what you expect, it makes life difficult, and not just when you a typing. Everything from eating to holding onto things becomes a lottery, you simply don’t know for sure, that your hand will complete a task or throw a spasm midway. Being right handed, is a plus right now, but there is this niggle that says “For how long”.

I can remember years ago a conversation about if you had to lose part of you, what would be the worst thing to lose? Well, as I have proved, losing your legs is a huge inconvenience, but it is one you can get around. Sight always sounded like the most horrific, but I again have proved to myself, that I can get around the house, find what I need and functions without seeing. With an app, that reads back what I type, well, I could still manage as I am already a touch typist. But losing my hands, well that would stop everything. As I already know, losing one hand isn’t the end, but it is incredibly hard, even though it was my left and not my right.

I guess, that when you have a collection of conditions like I have, especially ones that are attacking the nervous system, it is something we are bound to at least think about from time to time. Our conditions are so unpredictable and often, do things without any warning at all. Those events are distressing, but waking up finding some part of you no longer works, isn’t half as bad as watching something slowly change. Almost daily, being aware that this or that is just that bit worse than it was, or it’s doing something totally new that you had never, even thought possible. It’s like watching yourself falling apart, diminishing bit by bit and become something that you don’t like. Progressive illnesses, whether they move quickly or slowly, are quite simply cruel. I used to think of it as aging on speed, but I realised a long time ago that it’s worse than that. At least, when your aging, you’re doing what everyone does, it is just part of the progress of life and all those around you, are doing it too. Yes, I could look at my health that way, but that would be a lie, because I know, that I am on a progression that no one has done identically before me. On the plus side, it is a life of discovery, but it’s sometimes hard, to find the adventure in what you’re losing, as most adventures are about gaining. Yes, I gain knowledge daily about what my body can and can’t do, but that knowledge, is never, a good enough compensation for the losses as they appear before my eyes. Progressive illness is cruel and in my case, relatively slow, that is my blessing. Everything that has happened to me, could have happened in one catastrophic night, but I have been given years. At times it speeds up, at others it slows down, never stationary, even when I, at first, think it is. Percieved stationary, generally turns out to be something sneaky going on inside. Out of sight, can never be out of mind as that is just plain dangerous. I can’t stop any of this, no one can, but I hold onto my blessing as it has given me time, time to live, time to spend with those I love and that, it is the biggest blessing of all.

Please read my blog from 2 years ago today – 25/01/2014 – What if

I am an avid news watcher so I was surprised that with so much coverage of the flooding down south, that although we have seen the odd elderly person being assisted out of there homes, there had been no mention other…..

The itch scale

Posted on January 8, 2016 by livinginalimitedword

Everyone knows the some of the major symptoms that go along with different chronic illnesses. The biggies like loss of balance in MS, or memory issues with Parkinsons, but quite often, it’s the odd little things that go with them, that really drive us mad. Everyone at some point in their life will have had an area of skin that just won’t stop itching, but there is nothing there to be seen, well those are the sort of things I’m talking about. Those annoy “itches”, that just don’t go away, expect, these aren’t itches. Right now, for me, my itch, is my throat. I mentioned the other day that I have a problem swallowing, well that is only part of the story. I have several issues with my throat, some serious, other clearly on the itch scale and I know that the other day, I made light of the subject and moved on, but it’s more than an oddity, it is a slightly scary oddity, annoying and often drives me right up the wall. I don’t know exactly what causes it, but sometimes, when I am just sitting and doing what we all do, breathing and swallowing our saliva without any conscious thought, suddenly, my throat just locks up. It feels a little like there is suddenly a vacuum that is so intense, that I can’t breathe, swallow or oddly even open my mouth without forcing it to. I don’t mean with my finger, just with my brain, it has to be a conscious thought. Otherwise, I go into this cycle of trying to swallow, as though I have something choking me, but I can’t and don’t need to cough, as there is nothing there.

The first time it happened, I admit that I was scared. I honestly felt as though I couldn’t breathe and I wasn’t going to be able to take another breath. Everything was locked, set as it was and unchangeable. Sometimes, I can’t get rid of the air that is in my lungs, at others, I can’t find fresh air to fill them. It always feels as though the tubes to my nose, have closed, not as the feel when blocked, no, this feels as though they are sealed. There is a sensation similar to a vacuum in my mouth, it is so tight, that I can’t break it and it stops me doing anything about it. Personally, I think it is some sort of spasm, that closes off the entirety of the back of my mouth, throat, soft palate and nasal canals. For a long time, I thought that all I could do was to keep on trying to swallow until the spasm broke, as it always did. It took time and was extremely uncomfortable to do so, and the longer it went on, the more I would begin to panic internally, but I couldn’t see any other way around it. Adam has seen me struggling over and over with the worst and tightest one, which still distress him, far more than they do me. I eventually worked out that with a concentrated effort, I could actually open my mouth and that if I took a sip of liquid, I could trigger the instinctive action, of swallowing, and break the spasm. Instinct can work with you, or against you, as it is instinct that makes me sit fighting with it, rather than just taking a drink. When you can’t breathe, instinct tells you the last thing you should do, is add liquid. As I said, at first, it was scary, now, it is one of those annoying itches, that I just have to live with. For the last couple of days, it has been driving me totally up the wall.

That one is big and dramatic, but ask anyone with MS, there are loads of smaller ones, and some, are totally identical to an itch. The hours I have spent scratching must be in the high hundreds, but unlike a real itch, ones produced by MS, doesn’t respond to anything. You can scratch, apply gallons of cream, or have a bath, but it still itches. I have on more than one occasion, scratched my actual skin off, only stopping when the blood starts to flow. You can’t help it, you just scratch and scratch, out of pure frustration. No one pays that much attention to someone scratching, but I’ve had more than my fair share of odd looks because, I’ve been continually & violently rubbed at the end of my nose, my ears or my hands. Twitches, go next on my list of annoyance. I’m not talking about the ones people can see, they usually don’t have any sensation behind them, the ones I’m talking about are actually purely a nerve signal twitch. I don’t know why, but it has always been my nose that does it the most and annoys me the most. Even though I know it isn’t moving at all, I can’t stop feeling a little bit like a rabbit, and fearing that what others might see. Even when I am alone, it doesn’t take long before I am angerly rubbing and vocally showing my frustration as I do so. Whilst I am on the subject of noses, there is one other annoying thing they do, although, I have to admit, this belongs really low in the annoyance scale, but my nose drips without any drip. Honestly, it can feel as though there is a droplet, just sitting there ready to fall, when theirs nothing there at all and just like the invisible twitch, they keep happening.

Finally, in position four on my annoyance list, are jerks. I know “jerks” annoy everyone, but it’s not that type of “jerk”. Mine are those sudden involuntary movements. Some can make me laugh, like when I’m sitting totally still and my hand or foot will suddenly flys up in the air, but when your entire body suddenly jumps, it’s not so funny. Like all the annoying things, they don’t all just happen once and vanish, jerks can repeat and repeat and repeat. Most people will have had those moments when trying to go to sleep, and their body suddenly jumps, waking them up again. Well, it’s not dissimilar to that, expect, I can be eating, drinking or doing anything at all. When they go into repeat, well I’m sure you can imagine, what that would be like 10, 15, 20 times in one hour. It makes life difficult. Go and search as much as you like and I promise, you won’t find any of these on a symptom list, but there very much part of my life and the life of millions of others. If I’m honest, they can at times be far worse than the spasms or any other officially listed problem, it’s just no one tells you about them. Just as everyone with MS, doesn’t have the same combination of symptoms, I’m sure that each person could make up their own list of annoying things. In fact, I bet the same could be done by every single person who has a chronic condition. Our lives are never just what the medics say, but tell them about them, and they nod knowingly, and that is almost as annoying.

Please read my blog from 2 years ago today – 08/01/2014 – Do you know, I think I do?

After more than a month of searching online and driving myself slowly mad, I have at last an e-cigarette set that actually works, it actually works a lot, lot better than the one I had before, even when it was……