It’s all happening

I’ve done it again, forgotten what day of the week it is. Not surprising really as I do so most days. Why am I suddenly living in a world where almost everything doesn’t make any sense or is that just something that I can’t forget, the feeling that nothing ever makes sense anymore. See what I mean, even what I am writing, doesn’t make any sense anymore. Right now, I would give almost anything, to be able to get through one week where life doesn’t feel like something that is happening to me, something that I don’t have control of anymore. I was about to go and have a sleep when I suddenly remembered, that today is Wednesday, and any minute now my doorbell is going to ring, it’s will be my carer here to give me my shower. I asked them to be here twice a week to shower me, I even chose the days I wanted them to be here, but right at this second, I don’t want a shower and I don’t want anyone in my house, I want to go to sleep. I’m a fifty-five-year-old woman and it doesn’t make sense that I can’t choose if and when I want to have a shower. Yes, I know all the reasons why things are as they are, but that’s not the same thing as making sense.

On Monday night, I woke up just after midnight, again sitting on the edge of my bed with no idea how I got there, and unable to wake up. I did exactly the same thing every two hours until the alarm sounded. Ignore the sitting on the edge of the bed bit, odd as it is, but why the hell, did I wake up every two hours? One more example of the way that life is happening to me. No one on this planet would choose to wake up every two hours. It doesn’t matter if it is other people doing things to me, be it enema’s every second day, my showers, meals, and even sleep, is now out of my control, but I still feel like the person I was twenty years ago. The person who controlled not just me, but almost everyone around me, (That sounds bad, just to correct it, I was a manager, so it was my job to control others) but I am still that person, at least my brain says I am, even though it can’t remember what day it is, I am still that person. Yet I know without a doubt, I couldn’t organise a piss-up in a brewery, even if I put every last brain cell I have left into the task, I’d get it wrong at some point or other, where is the sense in any of that.

I can’t even remember when it happened. What day was is when I woke up and life was happening around and to me, I just knew that was the way it was. Maybe it’s just another part of being ill, another one of those things that no one tells you will happen, but it does. You wake up and there’s life. Yours, but not yours. Other people are telling you it’s time to do this or that. Here’s your lunch, not at the time you really wanted it, but at the time other want you to have it. Just like your shower. You can see that cubical, it’s calling to you, but you know you can’t step inside it until, there is someone there to wash you because that’s another part of your life, that belongs to someone else’s timetable. Suddenly without even noticing, your life consists of other people doing, while you comply because otherwise, nothing at all would happen. Yes, maybe, this is another part of chronic illness that no one tells you about. So what next is going to happen, what is going to be the next thing that doesn’t make sense, inside my brain, but there is no other choice left for.

I guess this is the way life is when something is eating not just your body but your brain. They are never going to agree with each other again. I’m not moaning, I’m just saying, that once upon a time, I had a life, I didn’t just live a life. Yes, I’m happy in my own way, but I have a growing fear, of what my future holds, of what will go next. Will someone be spooning my food for me, or putting me into my bed, or changing my nappy? How long before I don’t just forget what day it is, but I can’t remember what a day is? I know I don’t talk about fear or being scared, but we all are, at some time. Those who say they aren’t, are liars. We’re not scared all the time, we couldn’t live if we were. So we pack it away and keep it locked down, but every now and then it appears and when it does, we pretend it’s not there and distract ourselves until it goes quiet again, but we all know it’s there. It’s part of being ill, it’s part of living a life we didn’t choose and sure as hell didn’t want. Every time our health take a jolt, it rears its head and it pushes its way into our head, making dealing with everything else, just that bit harder, and just like everything else, it doesn’t make sense. One more thing that is happening to me, when I really don’t want it too.


Please read my blog from 2 years ago today – 06/10/2014 – Grief goes on forever 

I woke yesterday after my nap with a sudden realisation that it was cold. I had noticed nothing earlier in the day, but as I put my pyjamas back on I couldn’t help but notice the material was cold, colder than I have felt it for months. I was pleased when just 20 minutes later Adam went and added a layer……

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…..


I don’t feel well today. I didn’t even want to get out of my bed, but I pushed myself, forced myself to get dressed, just because I was awake, not because I felt like it. We often take the physical attributes of a situation, like time, and totally ignore the way we feel. Take meal times as an example, how many meals have you eaten because of the time of day, not because you were hungry? So there I was this morning, looking at a clock that said 7:35 am. I could have gone back to bed, the alarm wasn’t due to go for nearly an hour, but was there really any point in going back to sleep then? Was it going to be worth it? I think that I made the wrong choice, I chose to get up when going back to sleep for that one more hour, was what I really needed. I still can’t understand how I can get up, after ten and a half hours sleep, and still long, for that one more hour. What on earth has happened to me, that sleep is the one thing that I have now grown to hate, yet at the same time, yearn for more than anything. It feels like some kind of pariah, that lives in the middle of my life, clawing at me and always trying to drag me into its clutches. Sleep may well be my escape from pain, and everything that is happening in my life, but it has also become a prison that I just can’t escape.

I have this image of my future life where all I really do is sleep. A life where I wake to take my meds, to eat, to go to the loo, then, just go back to sleep. In fact, there are days right now, where I honestly believe that I could do just that, and do it without any great thought. If I didn’t have this, if I didn’t have the drive to keep writing, to keep active online, I would do just that. Crawl into bed and sleep. Today is one of those days, where I almost fear blinking, as I am sure that that second of darkness will be enough for it to win, that the balance would just shift. That I would land up sitting here in front of my PC, sleeping until my spine can’t hold me upright anymore, and my head drops slowly forwards until it finally crashes into my keyboard.

Life shouldn’t be like this, it shouldn’t be that you fight every second, just to stay awake. Every new day should be a joy, a place you enter with excitement, searching for those unique points that make it intriguing, that make it more special from the rest. I guess that’s the problem with routine, you know it is safe, you know that your day is protected, secure and somewhere you’re able to cope. You can’t have both. You can’t have the joys of the unknown because the unknown isn’t safe and mentally, that just freaks you out. So, life became safe, secure, always the same with just one highlight, the sleep that lets you escape. No, I can’t have both, it’s impossible as my  health won’t let me.

I made the decision to change my routine this morning, I changed it by just 55 minutes, and now I am paying for them back. I got up early because going back to bed seemed pointless. Four hours on, I am still paying for them. My body is still craving those minutes of sleep that it missed. It sounds simple doesn’t it, just go to bed now. Go into the bedroom and get into bed and sleep, but of course it’s not. I would have to pay for that later, as I would then be out of routine again. The fluid lines of my daily routine, the step from one task to another, would then be broken and I would pay for that too. When I first brought routine into my life, it was my saviour. It gave me the structure that I needed, a mirror image of a work-life routine. It improved my life no end, I felt as though I once again was living, not drifting. Our perception of our own lives is so important, we all, ill or not, need to have that continuity with the outside world, even if we have nothing to do with it. What I didn’t allow for is my crazy brain, the one that can’t stand it if an ornament it out of place. What I didn’t expect, was that it would in time transfer that to every part of my life. That the majority of the time, I would land up feeling lost, under pressure and scared.

I knew from my past, that I get physically terrified by the unexpected, where continuity should exist. Having experienced total terror, when I arrived at work to find the layout of my office was unexpectedly changed overnight, I walked into a room I knew, but I felt like I had stepped into an alien planet. I was totally lost and totally terrified, unable to make my brain accept that they two places were the same, and unable to make sense of it. I had never felt anything like it, but that intense panic still haunts me to this day. 16 years on, and my brain is now bringing that terror, into my everyday life. Routine is becoming something I daren’t now change. It has been slowly building, increasing in it strength and determination to make me pay for even the slightest alteration. All it takes is for a problem to occur with my PC, or one of the sites that I use, and that terror starts to build. If I find myself running too far behind for comfort, again I find myself feeling scared. What of? I don’t really know. Getting up those few minutes early, was supposed to stop that happening today, but here I am, now fighting against what supposed to have made life easier. That panic is also the reason, that I now have to start preparing at least a week in advance if I know, I have to go to the hospital, or if someone is coming here. Interruption or not, that day still has to appear, as though nothing has changed, as though I have been sat here, just as I am now.

I can’t be sure, as I wasn’t in their minds, but the panic I have seen in the eyes of someone with dementia when they too are lost, looks just like the panic that I feel. I have only seen it a couple of times when I was visiting an old people’s home. I can still remember how terrified they looked, not just scared, but so lost, that it was hard to witness. The part of my brain that deals with all of this is slowly increasing its effect on my life. You can’t escape your own brain, you can’t manage what is unmanageable, all you can do is try to work with it, and hope that somehow along the line, you find the right balance. I guess, that is all any of us can do.


Please read my blog from 2 years ago today – 20/04/2014 – I want me back

Four days ago I gave myself a shack and set about once more trying to do all the things I am meant to for my health, including once more bladder training. I have lost count of the amount of times I have done this and yes I keep up with it for a few days and somehow it all just slips back to normal. I decided because I knew that I was carrying a large amount of fluid that I would take my Frusemide every day for a few days, just to help shift it, I haven’t actually stood on the scales but I swear I must have lost a stone in weight, I can feel the difference, not just in my pyjamas and dressing gowns, but in every step I take, I am totally aware of how different my legs feel and even my stomach, silly I know but that is what is happening. There isn’t any point in me standing on the scales as I haven’t stood on them now for over a month, but I find I…..

Just fear or the truth

I seem to be shaking less, but I also slept less last night as well. No, I know that any coloration between the two, doesn’t add up, but they are facts. I actually caused myself to not sleep well last night. It was totally my own fault as I put in one of my earplugs wrongly. The result, well a painful ear, one so painful that it woke me after six hours. Stupidly, I tried to reposition it and just go back to sleep. I woke two hours later when I ditched it and took a chance, one that paid off, I slept right to the alarm. It just shows that no matter what is wrong with us, we really can be the root of our own pain. When I woke the first time, I was in pain from my stomach as well, maybe not quite enough to wake me, but I could have with ease settled the blame there and not on my ear. I could probably sit here and list dozens of occasions when I have done just that, blamed my health for something that had nothing to do with it what so ever. The longer that we are ill, the easier it gets, just as it gets easier to be afraid of it. Logic says that doesn’t make sense, but there is now a fear, I didn’t feel at the start, and it’s a very real one.

Despite all the safety precautions that I have put in place, I have to admit, that I have never been as afraid of taking a tumble as I am now. Years ago, I paid no attention to my dwindling ability to stay upright. I still ran, I danced and careered up and down stairs without a thought. I had this attituded of if I fall so what. The recklessness of youth, well, not really, I was after all in my late thirties before I gave it a seconds thought. Youth had little to do with it, it was far more a case of belief, belief that I had had reinforced by my doctors that there was anything wrong with me. It has only been recently that I have been able to look back and plot clear changes, ones that have far more to do with my mind than my health.

Pre-diagnosis, I did everything that anyone else my age did, and if I’m honest, a lot of things that most people my age, had given up long ago and I did it all, totally fearlessly. In fact, the more the doctors told me I was fine, the more I pushed myself. Not to try and prove them wrong, it was more to show myself, that I was wrong. Someone who is ill, in my mind, couldn’t do half the things I did, so I had to be well. Then I got my Dx. I didn’t stop anything straight away, although I had the feeling that Adam often wished that I would, but we had a new home to decorate and I was going to do it. I had gone to the doctor as I had been very aware of an increase in all the things I had been fighting against. Pain, fatigue, spasms, I know now, that it was just the progression of what had been with me for 20 years. It was nothing more than progression, not a flare or anything dramatic. Something had triggered an acceleration of my health, but I still had no fear of it. Even when I knew what my future held, I had no fear what so ever, well not at first.

I had no fear until I hit the point that I thought I would very soon lose my job because of it. I didn’t fear the fact that I appeared by then to be a jibbering wreck. That my tremors were at their peak, my speech at its worse, my mobility was shot and my memory a total wreck. I wasn’t scared of my health, just losing my job. I had no fear of the chemotherapy, or it’s possible side effects, which I had none of. Fear still wasn’t part of my life. The flares that I had scared me a little, especially when I found myself in the hospital unable to breathe or talk, but that passed, just as all flare did. They left their mark, but they passed. I had gone through what should have been a traumatic five years for anyone, but I still didn’t fear my health. Maybe, a little oddly, the first time I felt fear, was the morning I woke up with no movement or strength in my left arm. It took a dead arm, for me to feel out of control, as that is what fear really is, not being in control of your body. Before that, my body may not have worked well, but it did at least work, now it wasn’t even doing that.

Until then, I believed that my knowledge and my being in control meant I felt no fear. Even when my arm returned, I had for the first time a fear of what it could do next. Everything kept progressing, at first, I told myself lies, I told myself the progression was due to the fact that I had lost that control. I had this new knowledge, that control could vanish at any second and in many ways, I had never truly got it back. Despite the fact that nothing like that has happened again, my fear of it has just kept growing. I would have expected that over the past eight years, as I learned more and more about my health, as we all do, that that knowledge and experience, would have slowly removed the fear. It hasn’t. I suspect that being told that my PRMS could stop me breathing any time it chooses, didn’t help, but that was three years ago, and I’m still here, but so is that fear. So why hasn’t it gone?

Fear is actually a healthy thing to have. It shows a respect for my own vulnerability, and I suspect, that’s why I didn’t understand it and didn’t like it. I have never been a person who gave into fear, in fact, I twisted it and used it as a strength through many years of abuse, bravado was my bedfellow and best friend. It’s somethings that once you have learned to do, is very hard to let go of, over time, you actually believe your own fakery. So oddly for me, I think being able to feel fear again, and to be able to admit that I do, is actually something really good. I don’t think I have ever before admitted that something scares me, really scares me, not like falling over, or finding yourself in the middle of a road with a car you didn’t see coming towards you. This is a deep long lasting fear, one that appeared out of a true understanding of my life, one I was free to feel because I felt safe enough, to be able to. It has taken me another nine years from first feeling it, to admitting that I do. It also felt right that I put all this in here, as I know without a doubt, I am not the only one who is scared by their health. I’m reasonably sure that those who have read for a while, must have thought that I was immune to it, well I’m not.

Our bodies are doing things to us that yes, maybe we don’t want everyone to see, so bravado has its place, but so do our fears. I don’t fear dying, I just don’t want to do it. Just as I don’t want to wake in pain, whether it’s my fault or just my body once again showing me who is really in charge. If you didn’t feel fear, well just like me, I’d say that you are kidding yourself, taking bravado one step too far, just as I have done for years. Survival strategies are just that, strategies, true survival is feeling all the things that are there and admitting it, to ourselves first, but it’s also good to admit it to those we love as well. It has only been in the last few years that I have started to feel the entire rollercoaster of emotions that goes along with my health, and boy, has it been one hell of a ride. As mad as it sounds, I have hidden the majority of them from Adam, if there is one person who I shouldn’t hide them from, it’s him. As I said, it’s hard sometimes to let go of things, but if it hadn’t been for his love and support, I don’t think I would have felt safe enough to even let myself feel. By writing this, it means that he now knows, but I think if I asked him, he would say that he already knew. Somehow, he always does.


Please read my blog from 2 years ago today – 21/03/2014 – Just floating in time

I am having one of those days were just trying to get things done, isn’t that easy. My mind is off on one of it’s let just go with the flow, not be bothered by what has to be done or even admit, anything has to be done. I always find days like this difficult because I have two arguments always going on in my head, the one that says you have to keep going or you will find yourself so far behind that you will stress out later, and the other one that just says “Whatever!”. Floaty days have their good sides, as just sitting drifting has a habit of taking me back in o those happy times, those days when the whole feeling of “Whatever” was lived to the full. Strangely there a two days…….

Breaking the fear

I have often found myself wondering when the day will come, that I get cabin fever. If you watch TV, it seems to happen to almost anyone who is confined for too long, but it’s those final two words that I expect are the key to cabin fever, “too long”. What is too long? Well, if you listen to the inhabitants of places like Alaska or Finland, too long, can be the months of darkness that every winter brings. If you listen to the average teenager, it’s probably around a minute, especially if their friends are going out. Yet, here I am, in my 9th year of being housebound, and I too spend my winters in virtual darkness. Not because the sun doesn’t shine here, but because the winter is cold and shut curtains, keep the warmth in. Recently, I have been taking it one step further. Again to save money, I have always been sparing in my use of electric light, but I was finding myself getting headaches, and my desk lamp appeared to be at fault. For years, I have been able to touch type, but never truly trusted myself to get it right. So I took the decision, that I was going to turn that light off, and go for it. Guess what, I can type far better than I thought, in fact, I’m making fewer mistakes, as I can’t just take a glance down and then hit the wrong key. That discovery, I think, is also a clue to my not being caught in a fever.

Although inside, I believe myself to be the weakest person alive, always doubting myself and never sure about anything, I know that isn’t how I come across, nor is it the truth. I am just the same as everyone else, my self-doubt levels are no higher than anyone else’s, nor is my strength or anything else about me. It’s all about self-belief, something all of us lack. It is hard when we compare ourselves to others, especially when they “appear” to be doing so much better than us at almost everything, not to see ourselves as a failure. It’s just the same when it comes to our health. Because we share the same diagnosis with someone else, or they share a symptom that we have, we can’t help but compare ourselves to them. We totally forget that different people are just that, different. We ignore the fact, that something as simple as a spasm, has a huge range of possible pains attached. We just see that apparently others cope better, but do they really? Our self-doubt grows even deeper when it comes to picturing our futures. I have had countless people say to me, that they don’t understand how I can be content, having been housebound for so long, because they can’t picture themselves being where I am for me than a day. Well, believe it or not, 15 years ago when I was diagnosed, neither could I. I like anyone else, looked with awe at those who were even partially housebound, surely all I had seen meant that cabin fever was a forgone conclusion. Yes, I could like anyone else, manage the odd week here and there, but weeks, months or years, never.

I have looked at my situation in so many different ways over the years. I have come up with theory after theory, and each has held rings of truth, but none totally fitted the bill. I don’t think that living as I do has any magical formula that makes it work, nor are there a set of steps that anyone can take. In a way it’s a little like my touch typing, it’s simply about doing it. Every single component of our health is simply about doing it. If you are coping with your health right now, don’t worry about the future, as when you get there, it will be just like the now, you’ll cope. Every step up in my health, at first, felt daunting. As the pain levels rose, I thought there was no way that I could take it, but I did and I do. It is a little like being on an escalator that you have been climbing for years. The higher up the stairs you travel, the more daunting the next step level seems, but when you do take that step, somehow, it feels right, a natural progression and nothing like you thought it would be like. By the time you reach the step level saying “housebound”, well, your ready for it. Your body doesn’t have the energy or oddly, even the desire to not rise to that step, it’s natural to be there. Hence no “cabin fever”.

I have no desire to go out, in fact, it is now the total opposite. The whole idea of leaving here to attend a hospital appointment, is more daunting, than the idea of taking that next step up my stairway. If there is a trick to surviving chronic illness, it is in looking only at the step you are on, not the one that is ten or twenty levels above you. Once you are on that escalator, you can’t stop it, learning that is the acceptance phase. I have come across people who are on that escalator and they are facing the wrong direction, desperately trying to run down again. It doesn’t work, no matter how fast they run, the escalator, holds them, just where they are, they just get more exhausted and more worn down. Once you have accepted, well, the rest just follows. It isn’t about hidden strength, or any of the other things, that people choose to pin it on. It’s simply about moving forwards and upwards. It doesn’t matter whether it is housebound, new symptoms or pain levels, as long as we’re facing up the escalator, we cope, we all do.

Right now, I am caught up in pain levels that are pushing me hard, but I am coping because I know that I can. If there is one thing that I have learnt in the last years, it is that. Those people in Alaska or Finland who suffer from cabin fever each year, do so because they’re healthy enough to go out. They still have the desire to be out there in the world, unlike those of us who are housebound by our health, there is no comparison between us, we’re in different worlds. So don’t fear your future because of how you’ll cope with it, because, you already have the tools to more than cope. You’ve learned them all already and you’ve already learned the greatest tool of them all, how to adapt.