Which, what or way next

The mental overload that I have found myself within the last few weeks is becoming exhausting. Why is it, that when life finds a chink in your mental armour, it then pours in more and more until you want to scream at everyone, “Just leave me alone”. I find myself exactly where I feared when I agreed to the help of carers. Finding those glorious gaps where I am alone and life is peaceful, seems almost impossible now. Two months ago, my life was easy, Adam and I alone on Saturdays and Sundays and every weekday when he works, I was here by myself and our evenings were about us, nothing else. Now, I have just Tuesday, Thursday, and Sunday, when life is as it was, the rest, are messed up, changed and noisy with people. How can just one hour from each day being changed, feel like a total day taken over?

I know that last week was exceptional, as I was really meeting and building the picture of my needs from the incontinence service and the district nurses, but even when they were here to do my enema this Monday, it felt like my entire day was reshaped. The enema on Friday hadn’t really worked. I did warn her that I didn’t think the contents of my bowels weren’t in reach. As she squeezed in the contents of what looked like a rather large bottle, all I felt was the tip of it, then 15 minutes later the liquid starting spill back onto the pad she had supplied for such an outcome. Neither of us had really thought it out either, as although my wheelchair was to hand, I had my trousers and knickers still around my ankles. Not exactly a good move when my body was racked by tremors and we had to somehow get to the loo. Trust me, it was a journey that I wouldn’t have managed without her assistance, otherwise, my white bedroom carpet wouldn’t be so white. It wasn’t as though my bowels cleared, they just took exception to having something enter it from the wrong direction.

Until late that afternoon, that was all that happened. The hours passed and nothing other than fast journeys for small amounts of liquid. I really shouldn’t have wished for action as that was what I got all day Saturday. Every time I moved, I had to go to the loo to clean myself up. I went from nothing happening, to a slow seepage of solid that I could do nothing about. On the good side, it was also Saturday that I started to feel pressure right across the top of my stomach, a pressure that I knew all too well. Late Sunday, it started to turn the corner and if life went to my bodies normal plan, that would have meant three more days of gentle build up, them two or three days of pain, before it would move again. Normal was interrupted on Monday, by enema number two, and the wonderful relief of all that future pain being interrupted by relief. As Murdoch used to say “I love it when a plan comes together!”. Because it cleared as far as possible, there was no follow-up leakage, no pain nothing, just my body doing what everyone else does with ease. Monday also found me on a good day. When the nurse arrived the tremors were quiet and I wasn’t normal, but about as close as I ever get. That meant that once she had me safely on the loo, without either my trousers of knickers, I told her to go. She could see clearly the difference in me and was happy to follow my wishes. I think she had been gone about twenty-five minutes when I started to wonder if my choice had been a wise one.

Somehow, I had to return to the bedroom, play about with the new mega towels she had delivered (quite honestly, if you added tags, it would fit a 6-month-old baby), get redressed, locked up the front door properly, and tidy up all the bits and pieces she left behind. That whole period from her ring the doorbell to then was about an hour and a quarter, and I didn’t have the tiniest drop of energy left, twenty-four hours on, and I’m still not revived. It appears that I somehow managed to empty, far more than just my bowels.

It’s Tuesday now, that means I am alone today, this is one of my peace days that I knew so well, but every second of it so far feels, like I am working towards finding the energy for tomorrow. The morning will find me once more with the nurse, and another enema, although I doubt there is much there after yesterday’s spectacular success. Tomorrow afternoon will see my carer here for my shower. How am I going to make my way through all that, and still be alive enough to enjoy my evening with Adam? A double whammy, that right now sounds like something that is going to leave me beyond wiped out, but I have no choice, this is the agreed plan, the way things are to be until we know exactly what works and what doesn’t, for my bowels. It goes without saying that I am more than hopeful that the space between each enema in time will be expanded.

It is bad enough that I feel so out of control of my body, but to throw in the sensation that my life has been taken over and planned by others, well, it’s left me just a little numb right now. Yesterday, the chemist arrived with yet another new drug, something else for me to swallow on the instructions of my doctor. It feels right now as though all I do is swallow and breath in medications, and when that fails, the nurses take over and insert it where I can’t. If anyone can think of any orifice they have missed, well please keep it to yourself. I always thought that our bodies were supposed to carry us through life and to bring us pleasure along the way, life now is all about medications, just to make it work at all. That pleasure piece, well, it’s still there when there is the time, just a little harder to find, and far less fun than I remember.


Please read my blog from 2 years ago today – 06/07/2014 – Some scares never heal

I feel that bit more under control today, not as lost and as though I am grasping at anything in my mind to keep me in line and still moving. It’s mad how something you knew, but didn’t want to hear, can really through you into the worst of muddles and make you just want to stop the world in it’s tracks for a while. I would even go as far as to say that my determination not to be beaten, is returning, not in the angry…..


Routine affairs

There are days when life just seems to take pleasure in screwing you over. It doesn’t have to be the big thing, in fact, if it’s a series of small things, somehow, that is even worse. I know that a lot of people think that my life inside my housebound bubble, living in a reasonably tight routine, that things couldn’t possibly go wrong, After all, the point of routine, is to keep things the same, but that still doesn’t stop them going wrong. It is the one thing, you can’t plan for, and no matter how well thought out things are, they will find a way of doing just that. If there is one golden rule I have found, if it can go wrong, it will.

When I woke up the other morning, after successfully having been to the loo that night without wetting myself, I was feeling good. So OK, it wasn’t the most earth-shattering reasons for feeling proud of myself, but it was enough to put a smile on my face. It wasn’t just that, it was because I thought that I have found a way of making it not happen. It was simple, don’t move quickly. OK, my quick might equal your slow, but by not trying to fly out of bed and stand up, rather taking it in slow stages, I stayed dry. When I woke, I took a minute to stretch my arms, take my sleep mask off my eyes, and gently uncover myself. I raised myself slowly with the elevator, stopping for a second or two every now and then, then slid my legs over the edge of the mattress. I made a point in sitting on the edge of the bed, letting everything inside me settle, then slowly stood up. Success, nothing happened, just as I hoped it would. Which confirms my theory, the sudden actions cause my insides, to suddenly squash down on my bladder, moving slowly avoided that happening.

Waking again at 7:45, found me with a smile on my face before, I even thought about taking my mask off. It was going to be a good day, I just knew it. Within 5 minutes, I realised just how wrong that was. As I was getting back into my wheelchair in the bathroom, I realised that my balance was off, not that unusual for someone like me, but it caught me unaware and I crashed straight into the wall, catching my funny bone, on one of the units. You don’t need me to tell you how much that hurts. A body full of Morphine somehow doesn’t change these things. Somehow, I always thought that it would, but injury pain when it first happens, feels as it always has. It would be nice if there were just one tiny bonus to all of this, but if there is, I still have to find it. Having a wheelchair, also turns into a disadvantage at this point. There is none of this walking away holding onto your elbow, comforting yourself, no that arm has to work and to do so straight away, pain or not. My smile was gone and I was now heading for my PC, feeling a touch sorry for myself.

As soon as my PC came to life, I searched through the overnight activity on my different accounts, only to find there was a two-hour gap of nothing apparently happening. Twitter was down. As everything I do in the first two hours of my day, is centred around Twitter, this was one major issue, far more than you might think. Try as I might, it is incredibly difficult to get my brain to accept something isn’t working and that I need to do things in a different order. It quite simply doesn’t like it and won’t do it, for more than a few minutes. My mind just wouldn’t accept what was going on and do what anyone else in the world would, something else. I checked this, that and everything, not once, but every few minutes, as I just couldn’t sit here and do the logical thing, write my blog. My brain was screaming at me after each sentence, “just check again, it might be back”, of course, it wasn’t but I kept checking. I was on the verge of going crazy and I was clearly achieving nothing. I literally had to leave my PC and do something else. luckily, I could have breakfast and take my meds, no computer needed there, it was a little early, but it got me away from this infernal machine.

Once I had eaten my Granola and used my Nebulizer, I fetched a small bottle of Ginger Beer from the fridge, Adam fills them for me daily, as it’s easier for me than fighting with huge bottles and fragile glasses. I was sat in my chair, looking at the tablets he had left out for me to take, and instead of putting the pills in my palm, I poured Ginger Beer into it, not stopping until I actually saw it pouring onto the floor. I had just sat there looking bemused by the liquid pouring off my hand, I had developed the reactions speed of a slug, and even then, one that was asleep. Once I had actually, taken what was happening, cleared up the pool on the floor and swallowed my tablets, I moved on to my inhalers. In the last couple of days, I have been having problems with a new inhaler that had simply turned up without warning. I have now for several months been on Seretide 250, which is a normal every day looking old fashioned inhaler, that people have used for years. What arrived was Seretide 500, a diskus accuhaler, something I had never used before. The name sort of describes how it looks, more or less like a mini discuss which a sports person would throw. You simply swivel the outer case around and it reveals the mouthpiece. The instructions were obvious and I thought nothing of it until I tried to use it. Every inhaler that I have ever used in my life, and there has been an array of them, have all made a sound when you are inhaling the medicine, or once you have completed the dose, this one is silent. On top of that, they have all had a flavour, or in the case of a powder inhaler, a grainy residue, this had neither. There was nothing to confirm that I had taken a dose or not, or if, the thing was actually working at all.

I have to admit, that on my first use, I tried it three times but, heard and tasted nothing, that’s how convinced I was that it wasn’t working, I took the chance of taking three doses. We decided, that Adam would take it back to the chemist, to change it as it was in both our opinions, clearly not working. He did this after work yesterday and when he returned, he had with him, exactly the same one. Apparently, it was working perfectly. They had loaded it just as we did, then tapped it on the counter and the powered fell out. Neither of us were convinced, as the point still stood, no matter how hard I sucked on it, I tasted and felt nothing, surely there should be something, they just tapped the powered out, that doesn’t mean I can suck it out. Anyway, I tried it last night and I still wasn’t convinced, but stupidly, I closed it without tapping it on the counter, to see if any powder remained. So, I had to test it this morning. I hate to say this, but it seems to be working. I did just as it said, and then tapped it on the counter, to see if any powder fell out, nothing remained. I know your thinking, but that’s a good thing, isn’t it. Well not in my book, because now on top of a sore elbow, and a wet knee and a PC/brian that will let me do nothing, I was totally mortified by the fact I had sent Adam on a wild goose-chase and embarrassed by my stupidity.

It took another hour, for Twitter to return, and I was so far behind that I thought I would never catch up. Those who know me will realise, that meant that my frustration and stress levels were high. I was doing everything that I could, to catch up, but there was no way, that was going to happen. Worst of all, was the fact that I couldn’t keep my eye off the clock, every minute that ticked by, I saw and felt. Then the phone rang. It was Jake making his weekly call to check on how I was. He is the only friend I have now from my old life, we have been extremely close now for over 20 years and consider ourselves more as family, rather than just friends, and he was in one of his chatty moods. Normally, I love to hear from him, and I look forward to and enjoy chatting for as long as he has time for me, but yesterday, well no matter how I tried, my eye was still watching that clock. My brain is like that, once it has something set in it, it doesn’t give up. By the 15 minute mark, I was almost relaxed, we had been laughing and sharing stories and I knew, this was going to turn into one of hour long trips to the past. It was probably just exactly what I needed, but my body wasn’t going to play the game. Out of nowhere, my bladder was screaming for relief. I hadn’t even made it to lunchtime, and not one thing had been completed or had gone smoothly, other than breakfast. Even Twitter still wasn’t working properly, it was back, but not stable.

Yesterday, life and my body, were conspiring against me, as the day went on, it got no better. Small things, but when put together in a chain, enough to drive me up the wall, and once there, I found raised pain, increased spasms and a headache from hell. So thank you life, as if it weren’t for your determination to thwart me in every action, I might have had a good day, you alone, turned my day into a living nightmare. It’s easy to just think that our battle is with our health alone. That is the picture that so many portray, that if they were just cured, life would be perfect. Sometimes, it’s just good to be reminded, life is a bed of roses, there are millions of ways for it to catch us out and when given the opportunity, it will.


Please read my blog from 2 years ago today – 20/01/2014 – Embracing the devil

That early start yesterday just pulled me down and down as the morning went on, I completed my blog and a couple of small bits and pieces, but just before 11 am I went to bed. I felt so bad I was at the point……


I seem to be finding a growing peace in just sitting doing nothing. Which is undoubtedly, not very me. I know it has a lot to do with just how tired I am, but, to find pleasure in sitting in the middle of the living room in my wheelchair, rather than here, or on the settee, really isn’t me. After all, there is one thing that goes, without saying, it’s messy. It’s bad enough, that my wheelchair now sits tucked in edges of the room, all day long, but, for it to sit in the middle, with me in it, is a million times worse. I had just had lunch, and instead of tidying up, tucking my chair in it’s afternoon spot, I just sat there, being messy. It doesn’t actually matter where I am these days, I find myself more and more not rushing to do the next thing, I just sit for a while, doing nothing. Space has become a place I find myself contemplating a lot. Not the one filled with stars, just the one in front of me, directly in front, not even as far as the next object, just the space in between. I can’t even blame a lack of concentration, or my mind flitting off somewhere else, as I know exactly where I am, I’m just not moving, and the oddest thing of all, it really feels good. I wish I could explain it, beyond saying, it just feels right, or it feels good, but I can’t. I just seem to have developed a desire to do nothing, and whenever it happens, I always feel tired and it always feels so right.

If Adam had been at a home, there would have been no sitting doing nothing, I would have scurried around as always, rushing to tidy up and to get life on the move. Not that he would have been pushing me to, that’s totally not him, but I pushed myself when he’s here, why, I don’t know. I suppose, it’s like a lot of other things, you don’t want to appear any less than the person they met and married, despite the fact you clearly are. But Adam wasn’t here yesterday afternoon, he was at his families annual Christmas get together. So there I was, on my own on a Saturday and free to just let my mind and body do what it wanted, absolutely nothing. I had completed all my morning routine, and I had already planned my afternoon, something that wouldn’t start until I moved and tidied up after lunch. It is those transition points in my day, that I seem to find myself extending, pulling out every second so it expands over more than two. I know I can’t stretch time, but that’s how it feels, as though I am making time for me, to be anything but me. As if, by just doing nothing, I am resting, grasping those moments of wakeful sleep, that I can’t find anywhere else. My body has been running on empty for far too long. I have tried everything, from eating more, which has just made things worse, to making sure that when I am doing nothing, that it really is nothing. No fidgeting, no moving things because their not in their ideal spot, doing nothing had to be a total stop. Nothing has worked, I’m still tired. But yesterday, wasn’t going to be the start of my new life, it couldn’t be as last night was the final of “Strickly come dancing” and it didn’t finish until 10 pm, an hour past bedtime. There was no way, I was going to miss it.

No, I wasn’t making an excuse to ignore what I know is the right thing to do, I have sat through every beautiful minute of that show, and I wasn’t missing the finale. My new life pattern started this morning, but before that, I had to stretch my ability to stay awake. I had to find reset and I had to find energy, something at lunchtime, I clearly didn’t have. With Adam gone and the house eventually tidy and silent, I went to bed, with an alarm set for 2 and a half hours, doubling my normal afternoon nap. To my shock it worked, I actually slept, not even fitfully, or in a half dream, I fell into a deep sleep. Clearly, for once, my body was willing to play my game and not its own. For the first time since, to be honest, I don’t know when, I was sat here wide awake right through to the final seconds of the show, and it was so worth it. If I could sleep like that every day during the day, I wouldn’t have half the problems I have had for the past year, but it normally doesn’t work, and I’m not going to be tricked into thinking I can make it do so. In reality, I wasn’t going to get an extra hours sleep last night, but I was still setting the alarm for 8:30.

So here I am, at the start of a new life pattern and already beating myself up, for not being on time. I knew this would happen, but even knowing that, hasn’t made a single second of it any easier. I have been watching that clock out of the corner of my eye, all morning. Every time I have stopped and found that space, I have chastised myself and flown back into action, trying to make up that hour, that I feel I have lost. This is going to be the hardest thing about letting go and doing what is right. I know in time, I will get used to it, that I won’t be looking at the time, or the charter count, I will be once again relaxed and at ease with life, but that’s not going to happen today. Today is going to be super hard, and my body is going to make it even harder. My bowels have decided that running me back and forward to the loo is a good game, my bladder thinks so too. My dexterity is shot, and I am hitting all the wrong keys, meaning I need to correct almost every word and my legs, well they have just vanished in disgust of the whole thing. Who would think shifting your day by one hour, could be so hard. I keep having to stop, not to stare, but to relax, as my shoulders seem to have an infinity with my ears today. The tension in them is unbelievable, and its triggering pain in places that don’t normally bother me, not to mention the fact that my nicotine intake has doubled. I guess that you can’t take a lifetime of training and undo it in just a few hours. This is going to take time, and it’s going to be hard, but I will hopefully eventually feel better for it.

On of the hardest things to find within chronic illness, is balance. You have to work with your health, but you also have to have a life, getting the balance between the two, doesn’t happen overnight. I have rebalanced so many times, but I have never really tried to change it so dramatically. It is easy to cut chunks of the end of your day, that one I have achieved with ease over and over. I hadn’t had a bedtime of 9 pm since I was a child, but cutting back to it, was fine. Yes, I lost time with Adam, but it was equally the end of the day, that suited both of us best. Now, I think nothing of it at all, unless the TV, like last night, puts on something that watching a recording of, just isn’t good enough. There is, though, a point, where you can’t cut it back anymore, unless, you really don’t like your partner, and don’t really want to spend any time, with them at all. Cutting an hour out of the start of your day, throws you for the entire day! Yes, I can tell myself, that 11 am is actually equal to 10 am, but try getting your mind to believe it. Go on I dare you because before you know it, you are rushing once more, and your mind has tensed your body into a mess that you can’t untie, without losing more time doing it. Deadlines doesn’t contain the word “dead” in it without a reason. I know, I’m being hard on myself, but that’s me, not the messy, can’t move person, she is someone else and I don’t like her, so I have to make this work.


Please read my blog from 2 years ago today – 20/12/2013 – No words

It seems as though the house is getting colder by the hour, it feels as though the wind has been bustling past the windows and through the trees now for several days. It makes itself known whenever…..

Back to the beginning

I woke up tired, with no reason on earth other than what I do daily online, as to why I couldn’t go back to sleep. It was genuinely, the very first time where I almost did, what I have been tempted to do so often. I honestly, don’t remember ever feeling quite so drawn to disobey the clock and say “To hell with it, I need to sleep.” There has been through all my life, this drive to work, to do things as they should be. It doesn’t matter if it is paid work or just the daily work of life, I always have to do what is right. I know that it started from childhood, from my parents demanding that life ran to two things, the clock and work. Work covered everything from, of course, going to school, homework, working in my father’s business and household chores. It was something I was grateful for, as it gave me a structure to hold onto, throughout some of the darkest years of my life. When I fell into a depression that twice nearly took my life, structure or as I call it now, routine, kept me going. Housework had to be done, the children cared for, the garden kept perfectly, clothes to be made, bread to be baked and the list went on, there was work, and always, more work. When I found myself housebound and working from home, I developed a routine that in many ways, hasn’t changed since. Clearly, part, at least, was governed by the work I had to do for the office, the reports that had to be on time, the bonuses that had to be calculated and so on. More than that, though, I developed the structure of living totally from home. I may no longer be paid, and my hours have diminished greatly, but routine has been, and is still, at the heart of my life. There are hours by which things have to be done, the only one that put’s any sort of pressure on me these days, is writing this. It has to be done before noon, else wise, I know I’m letting others down, and that doesn’t sit well with me, in any way.

Not long ago, I know that I mentioned in one of my posts, that I am now so tired, that I knew I needed more sleep, but I had no idea where to find those hours I needed from. Well, I am beginning to piece things together, that will hopefully allow me to take more time in bed in the morning. My routine has worked so well for me, for so many years, that letting go of any part of it is always hard. I have, though, done so regularly. I have had to over and over again snip away pieces here and there. Reducing this, or that, bringing it down to a size, that I can cope with as my health has slipped, further and further down. For months now, I have been having days when the whole things, just feels too much. The pressure that I have been putting myself under, is once more too much, but no matter how many times I have looked at it, I could find nothing that would allow me more spare time. I have nothing left that I am comfortable cutting away. Then last month, I discovered something, that I hadn’t noticed happening at the time. Every time I have reduced my “work”, I have cut away items from my list of tweets. Over the three years, I have been on Twitter, I have reduced my load from sending out, at least, one tweet every ten minutes, 24/7, down to 4 per hour. No matter how much I cut and tweaked, I never seemed to have any more time. What I hadn’t realised was that the time I produced, was being eaten up by my blog. When I started blogging, I was satisfied to have written as little as 3000 charters, I am now not happy until, I have found at least 7000, usually nearer to 8000. I have often found myself sitting here almost banging my head against the computer screen, as I simply couldn’t find anything else to really write about. Inspiration would appear and my then 5000 charters would explode to 9000 plus. It is no wonder, that I never freed up any time. So this is my first change. There are no longer any rules about how long a post can or can’t be. From here on in, a post is the length, I am content for it to reach. Some might be just a couple of paragraphs, another, much, much longer. From here on in, my daily health will govern what I do, rather than some mad rule about characters.

Outside of what I do online, my biggest problem for years, when it comes to getting enough sleep, is Adam. He is so bad at getting up and has since we married relied on me, to see he was up for work. I know for a fact, that if I just woke to see him out of the house, then went back to bed, it simply wouldn’t work for me. Without a doubt, that is the logical point in the day to extend my sleep, as it’s the point where I don’t want to wake. The sleep I take in the afternoon, is often not true sleep, more a doze, and in fact, if I were to sleep an extra hour in the morning, I probably wouldn’t even need to try again later on. I am so used to dragging myself through the mornings, fight tiredness, which slows down everything that I do. On the odd day where I have been awake, everything flows with ease and I complete my tasks with time to spare. Just being able to sleep one hour longer, could change things for me totally. Last night, I broached the subject with him and we have decided, that we are going to give it a go. He will set his alarm on his phone, which with my earplugs in, I don’t hear. There are a lot of things that have changed in our lives, that I wasn’t allowing for when I was worrying about him, not waking for work, the biggest being just simply, maturity. I am still going to set my alarm, but for an hour later, to start with and see how it goes. Any longer than that, I put myself outside of what my pain medication covers, trust me, waking every day in pain, isn’t a good way to set yourself up for anything.

I can’t live without routine. Although I had already removed the time restrictions for all tasks, I hadn’t looked a the most logical change of all, the time spent writing. I honestly don’t think anything will be lost, as on my inspired days, the words flow freely and fast, really fast. If there are any rules about writing, that is probably the one above all others, that should govern it, internal inspiration. We all need routine, but it should be us running it, not it running us.


Please read my blog from 2 years ago today – 19/12/2013 – Just another day

I woke this morning almost unable to move, every part of me was not only stiff, it was also in searing pain, especially my back just above my waist. I kept trying to find the strength to lift just one side off the mattress…..





Avoiding life

I’m running on avoidance this week. That means I am doing everything and anything that I can think of, just to avoid doing anything. It that makes sense to you, then welcome to the avoidance club. It is probably one of the most stupid of human states, that exist. It would quite simply be easier, to just do what we either have to, or to just declare we aren’t going to do it. But, no, we flit from this to that, and back again. Looking at web pages that hold no value, or even interest, rather than close it down, and if not do what we need to, at least, do something of value. Granted, avoidance isn’t actually dangerous, well not unless you happen to find yourself in the kitchen. Yep, that is where it can get truly dangerous, to our waistline, especially, at this time of year. Those nice little treats, the things we can only and do only buy in the run up to Christmas, have somehow snuck themselves, already, into our cupboards. It was bad enough before, but now, well now not only, can you take a nice healthy handful of nuts, but you can cram a lebkuchen or mini mince pie into your mouth and quietly, roll away. We kid ourselves that’s “it’s just one, it won’t do any harm”, but that’s five already and it’s not even lunchtime. Avoidance, in November and December, can turn, truly deadly.

So what is it, that we in the avoidance club, are working so hard to avoid? Nothing, absolutely nothing, well nothing of importance. That’s the whole reason, it’s so stupid. All we’re working on avoiding, is the normal, the mundane and the everyday. When you have PRMS, or any of it’s cousins, routine, is essential. It’s the thing that keeps the worst effects of our health at bay. That stops those wild spikes, those spasms and the pain we don’t want to feel. But routine, well it’s routine and occasionally, somewhat boring. I know all that could be read and taken in different ways, but no I’m not bored with life. I bored with the things I have to do to live it. Right now, I’m bored with every single little bit of it. I’m bored with getting up to the alarm clock & sleeping when the clock says it’s time. Of spending more than half my day asleep and of that time always feeling wasted. Of never having enough sleep, and always wanting more. Of eating the right things at the right time, because my guts can’t take it if I don’t. Of the frequent spells where I consume more medication daily, than I dare in food. Of sitting each and every day at my computer trying to fill my day, because I can’t have a job. Of the people who can’t see past my disabilities to see my abilities. Of the stairs that trap me, making the outside world inaccessible. Of the body that even when assisted can’t take the pressures of being outside even for a few hours. Of the fatigue that stops me for dressing, putting on my makeup and never being able to feel feminine. Of the pain that won’t let me care for me, far less my home. Of seeing dust and not having the strength to clean it away. Of not being able to at least walk to the kitchen, to stuff my mouth with what I shouldn’t be eating. Of having to use a wheelchair that causes me nothing but pain. Of all the problems that life in a chair brings with it. Of having only friends who I have to type to, as there is no one here in my reality. Of a reality so false, so manufactured, that nothing is unexpected, changed or exciting. Of not being able to deal with the unknown, as the fear of being lost is too great. Of being alone all the time. Of being too tired, too fatigued and unable to handle people around me. Of a brain that can’t keep up with conversation. Of a mouth that slurs and stutters my words. Of muscles that twitch and jump when not required, always in an embarrassing fashion that never stops. Of a bladder, that doesn’t understand the most basic thing it was created for. Of a house that doesn’t let me move freely when that bladder or its friend the bowels demand. Of having to maintain balance, while juggling everything that life is and it isn’t. Of being caught in a life so alien, that if an outsider was forced to live it, they would class is as being in prison in hell. Of all of that and a million things more. So as stupid as it might sound, despite routine being my saviour, it is also my jailer and my only escape is avoidance, as dangerous as it is.

Even in the midst of avoidance, you have to obey as many of the rules of life, as possible. You can bend a few, stretch the odd one, but drop any and the price is too high to contemplate. I often wonder if half the truth of fatigue is down to never being able to drop a single ball, as it won’t smash into the ground, but into your soul. There are just so many rules, far more can’t dos, than cans and even fewer possibles than impossibles. Is it any surprise that we at times, we just get bored of being the juggler. I remember when life was easy, you got up and you did what you wanted. Before someone says, well I have to work and I don’t want to do that, well I’ll swap with you any day, you can leave your job and find a new one, I can’t. No job I ever did, was as hard as living like this. So as I said, you got up and you did what you wanted, when did I last do that. I get up and want to go back to bed, but I can’t, if I lay there any longer, it would be bedtime again. 11 hours of being awake, 8 hours that can be intensely boring, regardless what I do, what order I do things in, they are always the same. Can you imagine spending 4 years, day in, day out, doing absolutely nothing different from the day before and I do mean nothing. Even long periods where every meal is identical every day. You could lay it out in three columns, each bowl, each plate identical, for months. Weekends, birthdays, even Christmas, don’t really exist, as my days, they have to be kept the same, otherwise I pay for it. The movie “Groundhog Day” has nothing on my life, he at least realised there was a way out, there is none from mine.

Most of the time, I’m happy, more than happy, I’m content with my life. Trust me, content, is far harder, to achieve than happy. Then days like this appear, where I want to smash it all into pieces, and refuse to do it any longer. Days when I want to stand up and shout at it, do your worst, I am so bored with all of this, let me out! It isn’t that I am bored of writing, of chatting on twitter or spending time with Adam, I guess that what I could really do with is a holiday, but how do you take a holiday from life. I can’t go anywhere, I can’t pretend that my life is anything but what it is. So I picked on something I could do, I can avoid. I can take my routine, and for just a couple of days, I can file off the edges, smooth off some of those “todo’s”, sit with a slouch rather than constantly check my posture. Be comfortable, rather than watchful, just stop being the goody-goody my health has made me. Eat, if not all of the bad things I’d like to, one or two of them here or there. Just chill a little, kick back and be a slob. For a day, maybe two at the most, it doesn’t hurt, as long as it doesn’t become a regular wheeze, it doesn’t hurt too much. It all sounds so easy, but remember, one eye always has to be watching and one ear listening, just, in case.


Please read my blog from 2 years ago today – 19/11/2013 – Surprises

I couldn’t believe that when Adam came home at lunch time yesterday he picked up a letter that had arrived during the morning. I knew from the envelope that it was from the hospital, something…..