It’s done

I didn’t know where I was, or who I was this morning. I sort of got myself through here, then sat at my computer staring blankly at the screen, waiting for it to boot up and wishing I hadn’t left my bed. Based on the past, I thought that today would be the day, that I would wake not feeling like I could dance around the house, but, at least, feeling as though I was alive. Three days, that is my normal recovery time for anything from going to the hospital, to have a visitor, three days at the most. Today is day four and I still feel like I did on day one. Don’t get me wrong, I wouldn’t have changed a single minute of the time I spent with Teressa and John, not one single second, but, my recovery, is clearly getting slower. One more thing to add to my list of things that aren’t quite how they were.

Granted, yesterday I made the dough so that Adam could cook the pancakes, but that took minutes, not the whole day, and it isn’t the sort of job that takes much out of me. The biggest thing that I did was to complete my letter to my Mother, in response to her card. I reread the one that I couldn’t send. The one that screamed and shouted my annoyance and pain in every word. Then wrote one, just as I thought she was expecting from me, one that groveled and kowtowed to her. Trust me, that hurt, as it was the attitude I was brought up to show. I followed that, by writing one, not even close to in between, as it was not that far from the first, but tempered by the second. I showed her the respect that I would for anyone who is in their late eighties, but, I also told her the truth, something she has twisted all her life.On the whole, my letter is very similar to my post about her card, but sticks to just the last two years.

At the grand old age of 55, I have at last stood up to my Mother and told her, that I refuse to play her games. Oddly, I feel nothing. I thought that telling her, would somehow change something, but it’s changed nothing. As I signed it, I realised why. The last two years, without her interfering in my life, always having something to put me down over, have been wonderfully peaceful. I haven’t missed her at all. Yes, I have often thought about her, wondered how she was doing, because she is my Mother, but I haven’t missed her. I was oddly content knowing that she had for some reason, that I didn’t know or understand, once again cut me off. But this time, I didn’t bend over backwards, to find out why. I called my brother and his words although friendly, didn’t match with his actions, they matched, as always, with hers. I chose to live 150 miles away from them for a reason. I don’t know if she will bother to pick up the phone or if this is the end of it. I don’t know if I will receive a letter in return and I don’t care, I kind of like peace.

Even though I wrote that letter. Even though Teressa was here for two days and even though, we had to deal with the phone call for PIP, and we’ve between us made the pancakes. None of it equates in my head for how tired I am. I long for sleep, but I also have a longing for one other thing, it’s what I asked for the other day, I’m still longing to do nothing. That’s something I don’t remember longing for, ever, in my life before, and I don’t even truly know what it is.

There isn’t a symptom, or an effect, that my body can do to me, that I am not aware of. This isn’t any, that I have come across ever in my life before. It’s almost like my brain wants to do nothing, rather than a physical event. It just wants to be allowed to not think, not ponder or even accept input or output of any sort. How you achieve that, I’m not sure. I would have said in the past that sleep would cover such a feeling, but I am sleeping fine. Eleven and a half hours every single night without fail, yet, here I am longing in a way I don’t understand, for nothing, and I want to understand, I want to make sense of it. Ask Adam, there is nothing in this world, that annoys me more, than not understanding something. It drives me mad. I even Googled it, and much to my surprise, I found a website called Nothing. It didn’t help, but it was a distraction for a while, but it’s not the nothing I long for.

 

Please read my blog from 2 years ago today – 20/02/2014 – Change the image

It finally looks as though there is a chance that those truly unfortunate people who have spent almost the entirety of this year with their homes flooded, might actually be at the beginning of the end to their misery. I count myself lucky that despite having lived all over the country and in all sorts of homes, it is something I have been lucky……

 

 

 

 

 

 

What’s wrong?

I don’t know what time it was, as I didn’t look, but I woke because I was cold. In fact, it would be fairer to say that I was freezing! The Duvet was totally clear of my upper body and I remember quite clearly just thinking, “That’s why I am cold, now I understand”. Then I did absolutely nothing about it and just went back to sleep. There have been times in my life when I have truly questioned my sanity, when I actually woke for the day, I was doing so all over again. Not only was I still uncovered and freezing, but I had my head firmly placed against the draw unit beside my bed and instead of trying to turn off the alarm, I spent several seconds madly thumping the timer I use for my afternoon nap. My brain was so far away, that I had slept right through the fact that my chin was being sliced into by the sharp edge the draw unit, and that my right arm was totally dead, as it was hanging off the side of the bed. Even allowing for all of that, I had only one thought, “I don’t want to wake up, it’s too early”. Getting dresses was a mix of luck and forward planning. For a long time now, I carefully arrange my clothes as I take them off, just in case, I have a morning like this. As I swing my legs free of the bed, my feet settle exactly into the top of my pyjama bottoms, so well set that my feet don’t normally touch them at all, their first contact is with the floor, straight through the trouser legs. Without moving my legs, I can now also slip my socks over my toes, and then grasp their tops, inside my trouser legs and unroll them from toe to knee, a reverse of my night time movement. My top hangs off a draw handle, in such a way that I simply lift and flick it over my hands and the rest of the process, is simple. One dressing gown also hangs on a draw handle, placed so it can be lifted and my arms will slide with ease into the arms holes. Dressing gown two, I have to stretch for, as it is draped on my wheelchair, but it to is laid down in such a way, that again, no thought is needed. There is only one thing left to do, to grasp the tops of my trousers and pull them up as I stand up. Done. Dressed without thought of any form what so ever.

So, clearly this is far from the first morning where I have woken up with the totally feeling of dragging myself out of the middle of the night. The only time in my life, when I have felt this sleep deprived before, was when I was, no, not when my children were babies, that isn’t true sleep deprivation, it was when I was working on the radio in the morning and Djing live every night. If I was lucky, I got 2 hours sleep at night, half an hour on the train there and the one back, followed by 2 hours sleep in the afternoon. That was when I was lucky! It wasn’t the type of work where being half dead, was acceptable, no matter what, I had to be, bright breezy and on my toes, the whole time. Which was one of the reasons, if anyone wondered, why I gave up the radio. I didn’t like it and I was half dead. Right now, I don’t feel a great deal more awake than then. This morning brought the whole thing back like it was yesterday, on the good side, I didn’t have to be out of the house in 20 minutes to jump in a taxi to the station. On the bad side, I am sat here 2 hours later, feeling just as sick as I did most morning on the train. I have been struggling for days but this one is without a doubt the worst. For once, I can honestly say, that as soon as I have the bulk of today’s online contribution done and dusted, I will be going back to bed.

It’s odd how feeling in a certain way, made me remember an event in my life. You wouldn’t think that there were enough individual feelings for it to work that way. Yes, if we are talking about flavours or colours, they both have so many fine divisions that make them almost endless in possibilities, but feelings? I honestly wouldn’t have thought so. I am very aware that there are degree’s of everything, from happiness to sadness, as there are from well to sick, but that how we feel in any given moment could so clearly trigger a memory, surprises me. I don’t think that being blissfully happy, ever meant that my mind instantly jumped to somewhere else in time, so why does feeling terrible? I suppose it could just be the bodies self-preservation process kicking in. A reminder that you have been here before and remember the harm it did you then. But to wake up and almost instantly, despite feeling confused and as though I was drugged beyond belief, that my brain could still pluck out that one short period in my life where I pushed myself beyond all logic is pretty amazing. The more I think about it, the self-preservation angle is probably the absolute truth of what happened. We would never get anything done if we spent our entire lives, remembering every single time we felt the exact same way we do at any given moment. Remembering the bad feelings has a purpose, remembering the good ones, is just fortuitous.

Memory is such a complex thing, I don’t think, it is something any of us ever think about, until we find it under threat. Despite the holes and its flaws my memory, still surprises me daily at the things it comes up with. The oddest one has to be when it comes to TV. I have found myself hundreds of times, being able to fill in the detail of a show, by remembering what happened in episodes years ago. While at the exact same moment, been totally unable, to remember the name of the character, who is on screen and who I am talking about. Actually, I guess that the TV, just shines a spotlight on it, as the exact same thing, other than being able to see the person, happens to me all the time when I am relating stories. People that I knew really well, spent a lot of time with, are now just pictures in my mind. Who they are? Where they lived or who their friends were, totally escapes me. I have streams of relatives, who I couldn’t tell you a single thing about of worth, including their names, I just know they existed, some probably still do. Despite a handful of names, I couldn’t tell you who I went to school with. The majority of whom I spent my life with from aged 4 through to 13. They are now just greyed out faces, bodies filling spaces and nothing more. So much of my life is gone. It had to have been there once because I am aware of the spaces, but their details, have diminished, not even into dust in some cases, some have totally evaporated.

It isn’t just my childhood if it were, well I would put that down to age, the distance in time making it unimportant and forgettable. I can come right up to the time when Adam and I met, and even closer, those holes are there and their constantly growing. It might not be surprising that I can’t remember the names of all who came to my first marriage back in 1977 when I was 16, but to not be able to remember who was at my second, in 1999, isn’t just sad, it’s scary. Sometimes it feels as though my health has set of little Pacmen scooting around inside my head, chomping out the next bit of information that I might just need. Every time they see that brain activity light up, they fly towards it, racing to get there before I do. I guess that is why I often refer to my health as my “Munching monster”. It doesn’t just munch away at my brain, it munches at anything that I might possibly need, muscles, nerves, who knows, maybe bone as well. In fact, as I have Osteoarthritis, yes, at bones as well. We have been in a race against each other for as long as I can remember, which probably isn’t as long as I think, but the whole problem with any race is, there are far more losers than winners.

It doesn’t take a genius to work out, that right now, it is inching ahead. Just like I have done before, I need to regroup, to work out what I have to do and how to do it. How do I hold onto my life, without spending all of it feeling as though I’m playing catch up? It’s a constant question in my life, probably in many people’s lives. Assessment is an ongoing process, but for a long time now, the answers have all come back balanced, that’s why it doesn’t make sense. There isn’t any single point or even a collections that say “this isn’t working”. Everything individually is working fine, it’s just the overall result that is wrong. If you can make sense of that, then please explain it to me, as I don’t.

Please read my blog from 2 years ago today – 07/12/2013 – A plan for life

Adam came home last night from work with what he said was a small gift for, not unusual in any was as often he comes home with some cheese I love or something or other that he knows I enjoy to eat, in the past……

The ticking of time

There are so many points in life when you just tell yourself, things will never be the same again. Of course, they are not all bad, in fact, some of them are wonderful, like the day you hear the words you thought you never would “Here you go Mum, meet your daughter”. Clearly as well, they aren’t all as major as that either, even tiny things can make you realise that you have once again, passed one of those tiny milestones, that are scattered through our lives. Some make us laugh, some cry, some are just noted with a sigh and some, well they’re just marked with the nod of our heads and the acceptance that it’s just a point in that process of ageing or another part of the story of our health. Which actually category this fits into, I’m not totally sure, is it just age, or is it more part of my body falling apart due to my health. Muscle weakness is very much part of my health, but the longer you are inactive, well the weaker those muscles get. For a long time now I have been more than aware that my stomach isn’t as flat as it once was, yes that was said tongue in cheek, it’s so far from flat that anyone can see it. A large part of it is clearly the weight I have gained since my mobility left, another, is the total lack of toned muscle to hold everything just where it should be. I hadn’t though, realised just how bad it had become, until last night.

Over the last couple of years as you know, my PRMS has gone to town on my intestine, causing me all kind of problems, most now under enough control that I am more than coping with them. Last night, I was suddenly in pain in my lower right side. Pain is nothing new, but in that exact spot and as intense as it was, was most definitely new. It didn’t matter how I shifted around, change position or anything else, it didn’t change. I had been on my feet a couple of time, during my transition from wheelchair to chair and back again, but even that movement did change it. I knew my bladder was empty, although that didn’t stop my trying again, just to be sure, as I know from experience that an over full bladder can cause pain of all sorts, and not just where you’d expect. When I got into bed I was hopeful, that just lying down would be enough to relieve it but it wasn’t. I had already swallowed a booster pill because of it, as it was honestly that painful. There was little left to do, other than the totally normal thing we all do to pain, poke at it. I have never been that sure why we do such an obviously stupid thing, what on earth do we expect will happen, other than more pain? Anyway, after I settled back down, I took a more considered course of action, of gently applying pressure and pushing upwards on the painful mass. As I was slowing pushing towards my head, it started to slip away from me and settle backwards towards my spine, the pain was gone. A little confused, I started gently feeling around and I worked it all out. Somehow, a piece of my insides had hung itself, on my pelvic bone, the sinking back motion, was it settling into where it should have been all along. It was one of those silent moments, another tick on the list of things my body now needs help with, keeping my insides where they are supposed to be.

I guess it was always just a matter of time, as I have been pushing and pummelling the rest of it for years now. This was something new, but at least I now know if I am in pain like that again, lie down and gently press. The list of things that I have to do to just keep pain at bay seems to do nothing but grow. Lately, I have noticed that I am now actually feeling pain from my mini-spasms. I am used to having loads of tiny spasms a day, normally nothing more than an annoying tightening of a muscle anywhere on my body. The major ones don’t happen daily, but these mini ones, they are often just seconds apart and if I am honest, are now just part of the background of my life. A few months ago, I started to feel the odd one was producing an ache to go with it, others were showing themselves with a tiny burst of heat or a sudden stabbing pain. They still didn’t bother me beyond being annoying, but they too are starting to show themselves more and more. I don’t think that there is an hour now that passes without my having to sit and gently massage or apply pressure somewhere. I doesn’t bother me on the pain side, but it is one of those things that’s eating into my time.

I don’t think, that there is anything that my body can do to me, that upsets me more than if it finds a way of eating time. If I get a sudden bad spasm, well it’s over and done within minutes and my day goes on. You could say the same about the tiny ones, but it is the accumulative impact that is annoying me. Time to me is so precious these days. I have had to get used to the fact that I need to sleep so much, but it leaves me with limited time. It doesn’t matter what my PRMS has done to me, I have dealt with it with a smile on my face. Yes, occasionally, there has been the odd curse, but overall, I’ve just got on with it. To be honest, that is why my memory frustrates me so much. I waste so much time, having to repeat journeys, back and forwards to the kitchen three times when it should have been done in one. It is more than annoying, it’s enough to get me angry. I have always hated not having the time I want in any day. That is how I landed up years ago, just sleeping just 5 hours a night. I saw it as such a waste of time to sleep for even a minute, more than I actually needed. You can well imagine how I feel about the days when it’s 13hrs plus. Even my straight twelve and a half seems so ridiculous, but there is nothing I can do about it. I have never understood people who say they get bored, or they have nothing to do. How can anyone have nothing to do? I am convinced that as they are putting me in my coffin, that I will suddenly sit up and say “Just a minute, I have this or that to do first”.

Every day is too short, which is why, I am fighting so hard against something I think would actually do me good, getting more sleep. I can’t help wondering if the reason that I am finding so many things a struggle just now, is quite simply because I am tired. As I said yesterday, I could with ease just fall into bed and stay there. It is tiredness, not fatigue, I know the difference. If it were anything else, I wouldn’t actually sleep every single time I lie down, within seconds. If I wasn’t tired, I would just lie there. Like everyone else on this planet, that does happen occasionally, but they are so far apart that they aren’t worth mentioning. I have to restrict my sleep by setting alarms as if I didn’t, who knows how long I would actually stay there. It is one of those balancing acts, one that is so finely set and has worked for me now for about 5 years. I accept sleeping as I have just enough hours awake to be able to have a life. If I change that balance, then something else will have to go, but there is nothing, that I am willing to let slip from my fingers. Somehow, sleeping even for half an hour longer, would feel like a defeat. Like someone had ripped part of my life away and I would be left stranded and bleeding. I hate this illness. My current plan of action, well it’s to push on, to do what I always do and just hope that it sorts itself out, but I know that I can’t do that forever.

 

Please read my blog from 2 years ago today – 06/12/2013 – A scratch too far 

My bank has sent me this silly little thing they call a token, it’s about the same size as a credit card and looks like a calculator, but there are no plus or minus symbols. I haven’t been to their site yet….

Who knows

I don’t know what has been up with me this week. I feel as though I am struggling, but why, or even, what specifically is making me feel that way, I’m not sure. It’s not as though anything that has happened, or any of the symptoms that I have been battling with, haven’t existed before. Yes, there has been a lot of times where I have felt buried beneath a mountain of them, but even that isn’t really new. For some reason that I can’t actually work out, I am struggling. I hate it when I can’t put a smile on my face that feels totally real. I hate having to put one on there, that feels even slightly fixed, but I have to. I know full well, that no one’s standing over me, telling me I’m a misery guts and to get my act together, other than me, but we are our hardest critics. I am the only person on this planet, who is pushing me to be happy, that’s stopping me from falling into bed and not just staying there, something I think I could do with ease. I don’t think, there has been one single evening, when Adam hasn’t double and triple checked, that I’m OK because, he knows full well, I’m not, and I’m just putting a face on. Just as there hasn’t been a single morning, where he hasn’t left me for work, without giving me one of his quizzical looks. I don’t answer his word or his looks with total truth because I don’t actually know what it is. Everything, just feels wrong, and what does that actually mean?

I know that this damned numbness is getting to me, but that isn’t enough, to make me feel or act the way I have been. Yes, I would dearly love to know exactly where my lower limbs are, rather than just this dead heaviness hanging below my knees, and to not dread sitting still for a second as the numbness will spread and grow, but numbness isn’t enough to make me fell overwhelmed. Nor is the pain that has snuck into its core and is at this second is living wrapped around my bones. It feels like the trigger as it is from the pain, the numbness emerges and spread in every direction. Yes, I have found the start point, it took me time to work it out as pain is just a normality, not an oddity. What starts the pain, well that’s still a mystery, to work that one out, would mean working out what causes PRMS. My hands now feel so swollen that even the fact that my rings are still spinning in circles is getting really annoying. I have lost count the number of times I have fixed them in the past hour, then found myself staring at what should be fat fingers in disbelief. Clearly my sensory system is working overdrive as if it isn’t numb, it is telling me it’s itchy or cold or worse still on fire. Every part of me is alive in some way or another that no one, other than me, would accept as normal.

Every morning this week has been the same, as it along with the last hour of every day, has been the time when I have felt most keenly that life is getting tough. I do everything that I can to do all that I need to, if not in tightly timed pockets as I once did, at least within a reasonable scale to the rest of the day. There hasn’t been one morning this week where that has been achieved, not one. Somehow, the hours have flown and as suddenly as my day started with the alarm, the hour of 1 pm, has arrived. Six hours were I don’t feel as though I have stopped for a second have passed and every day, I am behind, not finished and happily fetching my lunch. Yesterday, it took me right through to three o’clock, two whole hours, that I have no idea where they have gone. I know without a doubt, that I am typing slower as the pain in my hands has been a hindrance. I also know that my concentration has been thin and I frequently seem to be staring into space, but, is that all enough, I don’t think so.

My intestine has been tight and pressing into my diaphragm every day this week, and every day, which is far from normal, I have actually moved my bowels. I did increase the dose of Psyllium that is in each of my pancakes, as I had let it slip to so little, that it was having almost no effect. I know it always takes me a few days to settle to any change in dose, so the pain increase and the pressure increase is around what I expected. The odd bit is, this dose is exactly the amount that I took before and actually caused an improvement from the day I started on it, but I suppose this is my body and not having the same effect, isn’t that surprising. I know when our internal bodies are upset, that it can have a huge impact on everything else, but for some reason, I don’t believe this would cause this feeling of struggling all the time.

I am not the kind of person who would normally huff and puff at having to do anything, but I feel as though almost every action has a prelude of maybe not an audible one, but at least an internal one. Everything from taking a drink, to having to go to the loo, is just too much effort. It’s not as though I have lost my enthusiasm for life, that is still very much here, this is a physical. Every action requires energy and it’s that energy that is missing, not the one that want to do it, but the one that has to do it. I know that this sounds somewhat iffy, but it is almost as though all these newly heightened and extensive sensations are draining the energy I have. Is it possible that nerve activity can make you tired? I know they can psychologically affect us, but can they also physically use up energy? Is it possible, that the fact my legs are numb right now, that that very numbness takes energy to create it, rather than just as I thought just a mixed us signal? Feeling worn down, is very different from feeling as though you have nothing left to give. I don’t feel as though I have the energy to get through today, I will, but it will be a series of struggled through hours, rather than a day.

What our bodies do to us is a mystery to even our doctors, I am totally sure if I were to place this in front of my Dr and say, “what do you think?” the answer would be, “It’s possible”. If there is one thing that they say more than anything else to me, it is “It’s possible”, what kind of an answer is that? I know what kind of an answer it is, it’s non-committal. It’s like everything else they say about PRMS, “Who knows?” it’s as sure as anything, they don’t. If there is one thing about this illness that annoys me more than anything else, it is all these unknown factors. I know for a fact, that I am in a tiny group, just 5% of MS sufferers. I also know for a fact, that not once have I been asked to trial any drug to see if it helps or not. All I have been told throughout is that this, or that new drug, won’t work for me. How many PRMS patients have they tried it on? Where have they found enough of us, to be sure? In the now nearly 4 years of being on Twitter, I have only found 3 others. Thousands with MS, but only 3 with PRMS, I just can’t see where they are all hiding. To me, before you can cure something, you have to know everything about that condition as there is to know. If there is a single question that they have to answer with “It’s possible”, then they don’t know enough. It doesn’t matter what you own chronic condition is, but if your specialist has to answer just once, “It’s possible”, then question everything. To be fair, I doubt there is a single condition out there, where that phrase isn’t used at least once to every patient. But that kind of confirms my conclusions, unless every single one of us, are part of any ongoing research, their research is flawed.

I believe, that almost every single one of us has been more than a little frustrated, by the fact that no one knows what causes our conditions and that there is no cure. In time, you see past that point and accept that it is just the way it is. To be honest, I got past that point with ease as what annoyed and frustrated me, was that no one could even give me a forecast of what my future would be. I still find it hard that they don’t know even from my current condition what will happen next. That to me just isn’t right. Being told that your condition is unpredictable, is frustrating enough, but add in that they can’t even give you a complete list of possible symptoms, that is agreed upon, is beyond a joke. I honestly believe that I know more, about PRMS than, every single one of the doctors I have ever seen. For a lot of us, it has become a case of not out doctors healing us, or even helping us, we have to do it all ourselves, which makes a total joke out of the medical profession. Don’t get me wrong, I have had some wonderful help and care over the years. But when it comes to my MS, other than eventually getting my pain under control, and tinkering around the edges. It has been a case of a diagnosis, followed by little else.

So once more I am faced with a pile of questions and no one to help me find the answers. As today, I am inside struggling just as I have been all week. There is still a smile on my face, but inside, I just want to give up, disappear into my bed and sleep until next week. That way, I might actually feel awake for more than half an hour.

Please read my blog from 2 years ago today – 05/12/2013 – Giving in is good 

I guess we all like to think that our lives are in our control, at least I always thought mine was but now I have at last admitted to myself that I am have absolutely no control left over mine. I know that sounds…..

Tiredness to the max

I am so tired, right now I feel as though I could sleep for a week without getting up for even a visit to the loo. It has been sneaking up on me for the last couple of weeks, I could feel it but quite simply know there is no way of doing anything about it, those who don’t have something like either Fibro or MS don’t understand fatigue at all. I would be a millionaire if I had a pound for everyone who has said to me, “well have an early night”, or “just have a nap this afternoon and you’ll be fine to go out tonight”, fatigue doesn’t work that way. Fatigue is a tiredness that grips every cell of you and then takes your soul as well, the amount you sleep or the quality of it, quite simply doesn’t make the slightest difference and it drags you down and down until it is ready to let go. There is this maddening circle that you get caught up in, all you want, is sleep, to crawl into your bed pull the covers up as far as they will go and to block not just the world but your mind and body as well, but sleep changes nothing! Whether it is the alarm, your body or something else that wakes you, you wake not feeling the slightest bit better, you kid yourself you are and you start your day in the hope that you just need to wake up, but you are as awake as you will be at any point in the whole day. Within an incredibly short space of time, you start to feel just as you did the day before when you sloped your way into the bedroom and collapsed into bed, you are living deep in a mud wallow and there is no chance of ever escaping it.

I’ve lived with it for so long now that sometimes it feels as though it has been there since I was born, but I know that is rubbish. In my twenties, when my MS started, I would feel like this when I had a flare, but there was one other time that it appeared and that was when I found myself fighting depression. I had it bad, really bad, so much so that they convinced me to spend a few weeks in hospital, I had two small children and there was no way I was going to get better at home with them charging around. Now I don’t have the slightest doubt what triggered my depression, ask anyone who has lived through it and they will tell you it is never a simple one single thing that is the route in, it is a million things all made worse by not having been dealt with at the time, but what pushed me over was yet again being told just after a flare that I wasn’t ill and it was all in my head. It is amazing how you can go through life with a traumatic event after traumatic event, all written about in here, then something that has happened before, appears and totally destroys you. Whether it is through depression or something else, fatigue is probably the hardest thing to deal with because no one around you has the slightest idea what it is like. Everyone understands pain, they may not all understand what it is like to have chronic pain, or what it is like to take painkillers only to discover that you will never be pain-free again, but people can empathise to an extent. No one seems able to empathise with fatigue, it is such an alien concept that you can be so tired and that sleep makes not the slightest difference. Worse than that though is that it really is like no exhaustion that I can compare to anything else, there is no activity or event in my life that comes close and like everyone else I have gone through sleepless nights with sick kids and days without true rest due to events around me, but even then, I never felt anything close to true fatigue.

At the start of this post, I made a pathetic stab at describing how it feels, now reading it back, well it just wasn’t strong enough and I honestly don’t know is I have the words required to explain it any better. Descriptions require two things, the right words and something that you can compare it too, but honestly there is nothing close to it. What I can say though is it is different now to the fatigue when I was depressed in one vital point, when depressed I found myself crying I though because I was so tired, these days, being tired alone doesn’t make me cry, it can piss me off something rotten and even make me angry with myself, but I don’t cry. I just sit and feel like a zombie, fighting my way through a world that has plotted against me by giving me my own personal gravity field. Like everything it has it degrees, good days and bad, but it also does without a doubt have phases as well. I have tried over and over to look for a pattern, something that I can then be able to avoid in the future, there is nothing. Good food, sleep and a quiet life makes not the slightest difference to anything, you can’t bank sleep, or wear yourself down into a pit you can’t climb out of, or any of the other things I have read or heard. Fatigue is a killer and one of the reasons that I honestly don’t believe anyone with MS or Fibro should be allowed to drive, sorry if that annoys anyone, but I know without a second thought, that once it hits me and it can just appear from nowhere, I would be a total danger on the road. Fatigue is a physical sensation that is totally overpowering as it also works on your mind, your eyesight, dexterity and everything else, you could so easily feel totally fine when you went out, but then find yourself having to drive home, with a body that just isn’t up to it. It is also one of those things that for me at least didn’t respond to medication, yes there are drugs that are supposed to keep you awake. I say supposed as well it did work for me for a very short time, then suddenly it stopped, in the end I was able to take my three tablets, lie down and go to sleep for hours.

Tiredness and fatigue just aren’t the same thing, there is clearly a similarity in sensations, but fatigue can’t just be fixed, unless the underlying condition that is causing it is fixed first. It is not something to be ignored or brushed aside by anyone as there is always something serious behind it, without exception.

 

Please read my blog from 2 years ago today – 20/01/13 A plea to the web 

I know without asking that you along with me and everyone else in this world speak faster than our brains have a chance to catch up with. Words tumble out of our mouths and those around us look at us as though we are stupid, then suddenly we realise just what those words where…….