A life changing possibility

Sunday turned into a trip into the past, not the distant and mainly forgotten, but the recent and as it turned out, equally forgotten. I mentioned in my last post that I was once more in pain from my guts. Having had two failed enema’s the week before, my body had done what it finds so easy, it had me once more reaching for the morphine tablets. I hadn’t realised until the evening that I hadn’t once reached for a booster tablet because of my stomach for over week, then it all began again. Just as the improvement in my appetite had taken until that afternoon to actual occur to me, I had somehow failed to be even aware of not once feeling sick or having the thought of taking an anti-nausea pill either. I have noticed this oddity before, somehow I don’t notice the improvements, but I certainly notice when they disappear. I have to admit that I find that really peculiar. Surely when you have been longing for four years to be rid of the pain, when it did actually go, I surely should have been overjoyed. In fact, I didn’t even notice it happening, I just settled into my new normal and got on with life.

By the time I went to bed on Sunday, I was once more in pain over my left kidney and I hadn’t been able to empty my bladder since 5pm that evening, not even a dribble. My bowels were so overfull, that they were causing me every symptom I have ever had from them, all in just a few hours. I was up twice during the night, desperate to have a pee but I failed miserably until my fourth awakening just after 4 am when the first trickles managed to escape, followed by an intermittent flow that lasted just minutes. I may not have felt relieved in the way that I wished, but my mind at least found a little rest and going back to sleep was the easiest of my attempts that night.

I quite honestly don’t remember been so eager to welcome the nurses into my home as I was today, and when I told them what the previous 24 hours had been like, they told me that I should have phoned them and they would have come straight out to see me. There is little relief in finding out you didn’t need to wait for something when it was there waiting for you. At least I know for the future, as I doubt that this isn’t going to be the only time that this will happen. Despite having what felt like ridding myself of a huge quantity just after she left, I am already once again in pain. I now know where all the food I ate has been going, nowhere, just backing itself up and waiting to move forwards, once there was space and my muscles could be bothered to work. The nurses are due back here on Thursday, so right now I am going to wait and see what happens.

The rest of Monday passed with nothing of note other than another telephone engineer telling me the fault in our broadband is outside the house and once more was unable to fix it. They haven’t given up, and are still working on it, just not that evening. Throughout the evening I blamed my mood on that news, but when I woke again still tetchy and with a huge desire to snap someone’s head off, I started thinking about it in more depth. Without a doubt, I’m feeling this way because of once more being caught in this cycle of pain and internal pressure. It is like I have stepped back in time to four weeks ago. Finding my smile is actually work, rather than its spontaneity of recent days. It’s amazing just how badly one thing can affect everything about you. It’s not as though all the problems of the rest of me went away as well, that would have been hoping for too much, but it does show just how badly not being able to go to the loo, can affect our entire selves.

I know in reality we are just in the early days of getting this sorted out, and the answers are still sketchy, but finding myself back here, has opened my eyes to the choices that lie ahead of me. If the enema worked as we all expect them to, that would be wonderful, but that is only one of three outcomes I have had so far. The second is no real response that day, other than what I call the dried plug being removed, followed by a constant and steady slow loss of soft faeces and I do mean constant. It is unpleasant but does get rid of it, I could actually live with a balance between that and a proper response, but working out how to achieve either, is difficult. I know it’s about what I am comfortable with, but I have to say that a stoma, now doesn’t sound so terrible. It would mean no enemas and no more fails leading to pain. I’m not there yet, but it has moved up on the list of possibilities, from no way, not ever, to a real possibility. I do though need to give this a really good shot, but how long, is long enough to know for sure? It is a really big decision to make but until the last few weeks, I really hadn’t been aware of just how badly it is affecting me. I have for a long time been putting the blame on many of the side symptoms to completely different sources. Getting this one thing fixed, could really change my life and that’s not an exaggeration.


Please read my blog from 2 years ago today – 27/07/2014 – Back to front

Everything is wrong today, all the things that are normally wrong, some are amplified others normal, but on top, there seems to be a layer that is more wrong than I have felt it for a while. I noticed within minutes of getting up that my muscles are once again playing the exploding game, but it was once again my left side that screamed the loudest and had found a pain to travel down the…..

The edges of hell

I have so enjoyed the last few days because of the improvement in how I feel. The Gabapentin rise has worked wonders, not pain-free, but it feels so good to not be wanting to swallow booster tablets, within an hour of taking the last one. Don’t worry, I never did, but I was often sorely tempted. I have still taken a few, but when I do, they do their job and I can get on with life. It all seems too good to be true and I haven’t had to wait too long, for something else to step up on the annoyance scale. For years, I have gone through spells of poor continence when it comes to my bladder. A lot of the time, it is just the odd drip, or the odd occasion, being caught slightly short. Yes, there have been times when it has been a total loss of control and a lot of clearing up to do. All forms of MS seem to have an affinity with bladders. For me, it has mainly been problems emptying it, rather than holding on. I even have a good supply of catheters which the hospital decided about 11 years ago I should be using at least 3 times a day. I did for a while, but then I learned that by using my relaxation technique, I could achieve a huge improvement, so unless, I was having huge issues, I could actually manage without them. There is only one thing that you should never do, and that is to strain in the belief that that will force out what remains, it doesn’t. I have had the odd short spell where I have had to resort to their assistance, but I will try anything else first, as trust me, it is just something that intrudes into your life, that medical benefit or not, you want to avoid them.

It has to be about two months ago, that I had my first bout of waking up and on standing, finding that I have no time for dressing gowns or wheelchairs, I’ve had to get to the loo the fastest way possible. It has to be one of the worst instant quandaries there is. You stand up and a drip runs down your leg, if you sit down on the wheelchair, your bladder is going to empty on the spot, but walking is pure danger. Choose!?! So far, I have gone with the taking the danger route, but not without a huge dose of fear. Last week, I found a new issue and this one made me start thinking. I had been to the loo about 15 minutes before and I was getting into my bed. I had just pulled my legs in and I was tucking the duvet under the mattress, to stop them escaping later, as they frequently do. As I twisted, I felt liquid move and it was a millimeter from leaving me for the mattress. It didn’t make sense, but a similar thing happened the next night. Then to my shock, it happened during the day, the first time I was trying to reach something on the floor from my wheelchair, the second, when I twisted to reach something, suddenly I was on the verge of wetting myself. I guessed that they were both due to pressure on my bladder, somehow caused by my movement, rather than an inability to hold onto it. Then last night, I woke up and had to get up, thanks to the pain in my back. As my feet touched the floor it wasn’t just a drip, but total loss of control. The more I thought about it, the more I realised that every bladder failure I have had recently, where usually in line with the pain in my back or stomach. I think that my loss of control has a lot to do with an overloaded bowel, that I can do nothing about. Knowing that, though, isn’t going to stop it from happening.

My bowels are moving, but I have no idea how long it is taking to make its transit. I do know that it was around 10 to 14 days, but I quite honestly haven’t eaten any sweetcorn for months, so I haven’t been able to check. I know from the pressure I can feel, that it is always full, but I have actually had a bowel movement almost every day for the last week. I’m not traditionally constipated at all. The Psyllium is doing its job, and even when I add in a laxative, as I did last week, it did little other than make me go twice in one day, which just meant I didn’t go from the next 4 days and really changed nothing. This one has me stumped at the minute. If I load myself with laxatives, I am only going to cause more pain, the reason my consultant, took me off them all and told me, to never take them again. I just can’t think of any other way to sort this and it feels so wrong to treat one organ ruffly, because, it’s adversely affecting another. Equally, though, I can’t stand incontinence, regardless which form it is. It is one of those things that you just can’t hide, especially, when it is your husband who does the washing. On top of that, there is the problem of clearing up the trail I leave behind me, as I make my dash. I find it almost impossible to clean it up as well as it should be, especially, when you’re forced into doing the work with your feet. If this was a permanent problem, well yes, there are answers to it, but I don’t think it is. I really don’t want a commode, sitting in the bedroom for years totally unused. Nor are pads the full answer either, yes for the drips, but I don’t know any pad that could have collected what I lost last night.

I don’t care what anyone says, there is a huge mental flip that we are expected to take, and for some reason with ease, when, it is another subject people don’t talk about. I have to say, there has been, a huge improvement in the last few years, with the advertising of feminine hygiene products, as they call them, on TV. It has brought a more mainstream feel to things, but that doesn’t stop you from feeling, that you are basically wearing a nappy. To some, it might seem stupid, and I know without a doubt, that Adam will tell me, but I find it personally easier to talk about my death, than I do about a bladder that is failing, regardless of the reason. If, I could get out and about, if, it were just a case of stopping off at the chemist and buying what I needed, then quietly dealing with it myself, it wouldn’t be a tenth of the problem, but as it now stands, I have no choice. I can’t do these things, I am forced to ask Adam, to do the shopping for me, and I find that really painful. It is things like this, that make being housebound difficult. I can deal now without even thinking about all the other issues it throws up, but when it comes to things like this, I find it hard. We all need some things we want to keep private from our partners, not hidden, just discreet and private. For me, this is probably, along with bowel incontinence, which yes, I have had a spell of, that I would like to have at least the choice, of keeping it private. The only alternative that I am aware of, would require me to request a visit from the incontinence nurse, she would them be able to set up a prescription for these items. The downfall there, is, that you have to order them every two months, stop, and you have to go back to the start of the circle. I hope that this will just be another one of those phases. That within a short period of time, things will go back to normal and the problem will be gone.

I’m not stupid, I do know that regardless what anyone does, I will find myself eventually, bedbound and having to wear a nappy. They can call it what they want, that is basically what it will be. Even the alternative of a catheter with a bag isn’t much more comfortable on the brain. It is one of the details of life, that is high on my list, of things that would just make life, unbearable. I suspect it is for most of us. It may be a hell that is a long way from now, but every time I go through a spell of this, or almost anything to do with my bowels or my bladder, I know that what I am feeling, is the edge of it, or if you prefer, a taster of the loss of dignity I face, and that’s something most humans prize greatly.


Please read my blog from 2 years ago today – 19/01/2014 – One simple step

I woke early this morning, at first, I wasn’t sure as I have woken in a gentle slow way and at first, I was totally unaware of any reason for it. I lay there with my eyes shut with the thought of sleep first in my mind, then I liked my upper lip, suddenly…..

Every solution breeds a problem

For the first time since I sat in my wheelchair several weeks ago, I actually abandoned it yesterday. I had just been back and forward to the kitchen three times, the first planned, the second two, to fetch what I had forgotten. On the final time, I climbed out of my chair and was about to sit back down here. My eyes scanned the desk as I was lowering myself with the aid of my desk, when I realised, I hadn’t been to the fridge to pick up a drink. I gave up on the lowering and slammed down on my chair, my head hanging low and so angry, I wanted to scream. Once more, I was going to have to fight with my arms, which had complained through every turn of my wheels, on my last trip. Here I was, with no other option, but to return to the kitchen and to go through all of that again, but, I did have an option, I could walk. In some ways, I am really surprised that I haven’t taken that option before. I still have legs, yes their weak and they are unreliable, but they are still here. So I did it. I walked. Through every step, I could feel myself shaking from my toes, right up to my hands, but it was still faster and it didn’t hurt my arms. I had walked there and back with my hand dragging across the wall and grasping at anything, I thought, would hold my weight if my legs failed. I have to admit, that the relief when I was once more sat here, was huge. All I could hear going around and around in my head, were questions, “What would I have said to Adam if I had fallen?”, “How would I explain the fact I had left my chair and stupidly walked all that way?”, “What on earth had I been thinking?”

It isn’t something I am going to do again in a hurry. Somehow, I think I actually needed to do it. Not just to fetch the drink, but to remind me, why I am now once again on wheels. Changing your life, from ambulatory to assisted by a wheelchair, is a huge thing to do. The idea that you just sit down and totally forget, that your legs are even there, would be madness. I can, as far as the physical mechanism of walking goes, still actually walk. I can stand up, take a few steps in safe areas, but the whole idea that it is safe to do so over greater distances, would be the greatest form of insanity, I could lay claim to. Trust me, life in a wheelchair may be safer, but it is a million miles from easier, faster or even enjoyable. At first, it was all a challenge. Dealing with all the sharp turns and obstacles that seemed to actually jump out in front of me from nowhere. I learned, I grew more confident and slowly, I became used to it. At about that very point, my arms and hands stopped just being annoyed at me and took up a stance, of pure objection to the whole thing. Mornings have usually been not to bad, but as the day progresses, there is less and less cooperation. By the evening, it isn’t just when I am moving around, but when I am doing totally nothing, I am in pain from my neck, across my shoulders, and down into my fingertips. Worst of all, it is no longer just my thumbs that are dislocating, I now have three more fingers, that have discovered the same trick. None of them jump out totally, but enough, trust me to cause extreme pain and to have me grabbing and pushing them back to a normal location as fast as possible. If anyone has the cure or even something that would help, please tell me it. It so often feels now, that what seems to be the answer for one problem, turns out to be just another problem. Life has reached a point where nothing is a simple straight forward process and I honestly, can’t see it getting any simpler, anytime soon.

It isn’t just pain that my chair is causing. I have issues at night because I can’t manage to move quickly when I am half asleep, without crashing into things, usually causing myself more damage than anything in the house. I need speed, because I normally wake, out of the need to get to the loo. No, I don’t want a commode in the bedroom, not for a long time to come. My chair won’t fit into the far end of the bathroom. There simply isn’t enough space, although that wasn’t a problem two months ago, it is now. So, I am now considering grab bars and rails, to assist me. A step, I’ve resisted for so long, that it somehow feel ironic, that I’m thinking about them now, thanks to another aid. Again, thanks to my chair, having a shower seems like a much more complex and annoying process, than ever before. Clearly, standing in the middle of the bathroom, to get dry is just too dangerous. If my legs won’t hold me when walking, or even just standing for a short while, the danger when twisting, standing on one foot, or any of the other odd positions, we stand in when getting dry, is pure danger. Bringing my chair in with me, yes, it means I can sit down, but because that means it has to be brought in backwards, once in, I can’t get to the loo. It also makes getting dry, one, huge problem. The towel catches on everything, wheels, brakes, armrests, footrest, you name it, it will catch. No matter what system I use, I always seem to land up with damp spots, that I don’t find until I am trying to get dressed. I could ask Adam to help me, but that holds two problems. First, I don’t want Adam to be drying me and second, it’s another idea that I have fought against for years.

My wheelchair may well have removed the danger of my landing on the floor, but it has brought with it, a range, far bigger than just those I have listed, of problems that I now have to fix. If, I hadn’t stood up yesterday; walking out of total frustration; with the result that it had; quite honestly; at this point, I would be thinking of returning it to its cupboard. I need it, but it’s not making life easier, in any way I can think of. Actually, I have to take that back. I know that all I have to do is read back to the posts I wrote when I first set off on my newest form of life. It did have a huge positive impact, and I have to remember that. It isn’t so much the chair, it is life has so much clutter attached and moving in a rather large and new piece, isn’t going to be easy for anyone. If I am to tell the truth, none of us want our lives altered, by anyone or anything. Life, no matter how scary, is most enjoyable when we keep it simple. We don’t like change, and we definitely don’t like change that means, even more change, is required. I know myself, that it has more to do with attitude and desire, than reality. We see problems, that aren’t really problems at all, they’re just more change and that’s the real issue. If I can find grab rails that don’t scream hospital at me, well I could live with them. The rest is much harder, but solutions must be there somewhere, ones that aren’t just going to lead to even more problems once in place. The real problem is, is it doesn’t matter how far you try to plan into the future, when your fighting against an illness, that just doesn’t stand still. As I said, two months ago, rails weren’t required, they’re need though, is getting closer. Ouch! that has just put something into my head, something I hadn’t thought of, until this very second. Are all those problems, that I’m blaming on my chair, actually just new problems, ones that would have appeared, with or without it? Can I scream now, please, pretty please?

It’s a horrid thought that new problems will appear every two months, maybe, I’ve just reached that phase. Could my health really be moving that fast? Is that really why, I am feeling suffocated by problems? When I think about it, it kind of makes sense, but so did my first line of attack. I always knew that as time went on, that I was going to be doing more and more problem solving, just to make life livable. If I am going to remain independent, I know that life will have to change, systems revised and problems solved. Stupidly, I started putting them off. My brain is degenerating just as my body is. Much of what I am facing now, where problems that I always knew, would rear their heads, but I was doing the normal human act, of putting it off. Once, no problem phased me, in fact, I embraced them and loved them. There was nothing like a new challenge, just to keep you going. That, though, is now my main problem, being human, it has forced me into a world where mentally I am playing catch up, instead of being one step ahead, as I once always was.


Please read my blog from 2 years ago today – 18/11/2013 – Caught in nowhere to go

If I hadn’t spent so many years living with pain I think that at some point over the weekend I would have been at the local A&E department. My diaphragm is still giving me no peace, but it has made me realise just how…..

Just one more nibble

I decided yesterday to try an experiment, it’s actually something I have been thinking about for a while, but just hadn’t quite had the correct things in the house to try it. At the end of June, I was experimenting with different ways that I could find that were palatable to get my dose of Psyllium into me. With my intestine and bowel nerves more or less useless, the consultant straight away took me off all the meds my Dr had prescribed said Psyllium was the only thing that would work for me. He was right, but he didn’t say just how horrid this stuff is, or how hard it is to disguise it. I found a couple of recipes that worked, but weren’t great and required me to sacrifice one of my meals, just to have the space to eat them. Even the pancakes, which were undoubtedly the best, were incredibly filling and required a lot of other things to disguise the taste, which is somewhat like an odd kind of grass. So what I tried might sound totally back to front, but it really works. I stripped back the pancake mix, removing all the flour and adding two extra eggs, as I had noticed egg covers the taste slightly. Just eggs, milk, Psyllium, a spoonful of honey and yeast. Once risen I was delighted to find that what I had was an incredibly light and frothy mixture, that spooned with ease. Normally it would be heavy, risen, but still heavy and as time ticked on, it set. Not only did it drop off the spoon with ease, it needed little spreading out in the pan as it did most of it itself and cooked with ease.

The batter looks horrid, even in the frying pan at first it looks more like a mollusc than a pancake, especially as the air bubbles bursting making it look like they were breathing. I knew that the yeast would have no effect on the finished article, it’s there just so I can spoon them into the pan, and it’s elastic quality lets you spread them out without too much trouble. What I was left with we an incredibly thin, light cross between a pancake and an omelette. Just two has the total measurement of Psyllium needed and they taste good with just a few drops of lemon or I would guess anything else. I did actually eat half of one with nothing on it. At last I have a way that I can with ease eat this stuff that had been a trial since my doctors told me I had to have it. They are so light that I believe anyone would be able to add them into their day as a snack and not a meal replacement that all my other recipes turned out to be. I don’t know the exact reason, but I can only think that the flour and Psyllium formed some kind of reaction that just made everything heavy. The final test will be answered tomorrow, how do they react to being frozen, exactly where they are right now, solid and awaiting defrosting.

Everything does seem to get harder and harder the more of your body decided to shut down. I know that is just logical, but it is so hard to accept that even the simplest things like taking a couple of tablets can turn into a drawn-out and dramatic event as you once again choke on them. I quite honestly can’t think of a single normal everyday action from going to the loo to getting to sleep that is not somehow affected. I have just sat here for a few minutes thinking and I honestly can’t come up with a single thing in my life that is straight forward any longer, or not a million miles from what I would have considered “normal”. The longer you live like this, of course, it becomes your new normal and you do honestly forget how simple life once was. Looking back I know with total honesty, that if someone had painted out my future to me in detail, I would have asked to have been shot there and then. Yet here I am, living what I would have thought a total nightmare and perfectly contented and happy in this life.

I guess that any of us can look at a list of symptoms that any condition might contain and think that we could live with them. What we don’t see is everything else that comes with those symptoms and the impact on things that we never expected would be changed at all. Somehow without us even knowing at first that it is happening it nibbles its way into our lives. I remember about a year post diagnosis being sent to the hospital as I had mentioned to my GP that the problems I had with my bladder were getting worse. For years, I had accepted that my bladder often took ages to empty, leaked and gave me the little notice that it even had anything in it. I had just accepted it as part of life and got on with it. When I arrived the sister in charged asked me to go behind the screen and sit on the commode which had some system that measured not just quantity but flow and pressure. I was to let my bladder empty by itself, not to apply any muscle pressure, just let it do what it did naturally. She told me it was the worst results she had ever seen, I didn’t dare tell her that it was one of my good days. The result was that I was taught to use catheter three times a day to ensure that my bladder was empty as there were dangers in leaving it the way it was. I religiously did as I was told for the first three or four months. But the impact of doing so was to me a worse issue than not doing so at all.

To me the embarrassment of being in the loo for 10 -20 minutes, as that is how long it took to firstly prepare the catheter, insert, use and clean up afterwards. That was as long as I didn’t have a spasm, especially not one in my bladder, plus finding a way to dispose of the catheters discreetly was too much. It didn’t matter if it was at work, when I was out or even at home if Adam or anyone else was here, I felt embarrassed. Add in the fact that back then the catheters were too big to conceal in my normal handbag and the whole thing just grew in my mind into this monster. I stopped using them. I still don’t use them unless things are really bad, then I do, I am not stupid enough to not do so. For me, the solution was worse than the symptom. Bladder issues, they sound so innocuous, the least important and the one with the least impact of my list of symptoms. Something that anyone can deal with and live with. But think again. Always going out with a bag filled with catheters and all that went with them, carrying spare clothes, underwear and freshening sprays in case a leak went where I couldn’t so easily clean while out, like my wheelchair seat cover. Constantly worrying about smells that weren’t there, accidents in public that you can’t cover up. Having to wear what were then bulky pads just in case, plus carrying spares if needed and then not being able to wear your normal clothing. Bladder issues on the surface seem minor, they’re not. Now start imagining the more major ones, that list of symptoms is no picnic when you look into what it really means to the person living with them.

These days I struggle to get things into me and out of me, that is where being housebound is a plus. At least here in the privacy of my own home if I choke on my own saliva, I’m not completely embarrassed. If my bladder lets me down, well I can fix it, there is no one here to see and no one who is going to make me feel stupid. But that doesn’t make living with them any easier, it’s just there knock-on effects that are now diminished. I might not have imagined any of this could happen to me, or anyone else if I am honest or that I or anyone could still be happy despite it. Trust me, we can.

Please read my blog from 2 years ago – 31/07/2013 – A question or 100’s of them?

I can’t find a single muscle or limb that will give me peace although I am doing everything I can to find a position that suites them precisely, a situation that has now lasted for 4 days. Like almost everything, when I wake they are…..

Ignoring my disability

I started peeing for Britain yesterday evening, I had noticed over the last few days that I haven’t really been going to the loo that much, but I have been so wound up about the other end, that I didn’t put that much thought into it. Adam had taken an early shower and just after he stepped into it, I knew that I needed to go and I just had to wait. No matter how desperate I am, I just can’t go to the loo with him in there, I know a lot of couples don’t think anything of it, but to me, well there are something in life that are still private. When he came out of the bathroom, I started to stand and just like the night before, I was struck with the same pain in my lower right-hand side and straightening up was a slow and gradual process. When I got to the loo, I once again found myself with what I can only describe as having more than one bladder. I know full well that I have issues, ones that mean I should be using self-catheters at least 4 times a day, but I usually don’t. To be honest, I manage without getting all the bladder infections they keep warning me about and as long as I do, well I don’t see why I really need them, surely it is better to not keep putting plastic tubes inside of me unless there is no other choice left. I think in the last three years I have two infections, maybe three, but not enough to have to put myself through using a catheter every time I go to the loo.

I know that all the catheters are sterile and that when used correctly aren’t meant to cause any problems, but I also knew from my own experience that I had more infections in the year I did use them as directed than I have since I stopped them. Usually, if I am having problems emptying my bladder for a few days, I will use one, but I haven’t been getting the signals I normally do to have suspected there was anything wrong. My bladder didn’t feel full and even though I was passing far less than normal, well I put that down to the fact that the medication I am taking is meant to pull fluid into my bowel, so it seemed logical, in a round about way. Since Adam came out of his shower to now, I have been to the loo 5 times, including in the middle of the night and every single time it has been like I have three or four bladders, each one emptying in turn with a short break in between and each containing as much fluid as one alone should, even when over full. This isn’t the first time that I have experienced this, it happened a few months ago and lasted for a few days, then it just went back to normal. I have for over 10 years now had to take diuretics, as I collect fluid all over my body, it keeps swelling like some kind of mad balloon, especially my ankles and feet. Oddly I haven’t had any problems with that at all for several months and I had actually stopped taking the medication altogether, I don’t know what made me even think about it, but those changes happened at about the same time as my bowels started to go into total shutdown. I can’t quite work out what the connection is, other than the physical location within my body, but it feels too much of a coincidence to ignore it.

I think I just met the slowest delivery man on earth, the doorbell rang at five past 10 and as expected it was our shopping from Asda’s. It is now 10:55 and I have just locked up the front door again, well sort of, for some odd reason I can get the key to turn at all in the lower lock, another good reason for having two. While he was going up and down the stairs bringing up the boxes, I managed to put away all the fridge and freezer stuff, plus some other bits and pieces I would normally leave for Adam. I suppose I could have just sat on my perching stool or even sat in the living room, but there is one huge issue with that, I am human. It doesn’t matter how many years I have been disabled, I have never managed to deal with a situation like that, how does anyone just sit somewhere where they can’t fully see what is going on and knowingly keep these guys who are on a tight schedule, normally, waiting whilst I wonder back and forward in response to their knocking. For those who are thinking, well why not just leave the door open, easy, heat costs a lot and every last drop of ours would now be outside. Every noise I heard, I was off into the hallway, looking out through the door glass to see if he was there with the next box of goodies, so I could let him in with it. I couldn’t possibly tell you how far I walked in that hour, all I know is that my limbs now have that distinct heavy, half dead feeling.

I find it so hard to let my problems impact on others, I suppose that is totally down to my upbringing, manners once drilled into your head, are almost impossible to work against. Even with Adam I find it hard to just ask him to do the things that I can’t, he is more than happy to do anything for me, but inside me there is always this battle raging one that screams, don’t be so lazy. Becoming disabled isn’t something that happens over night, well it might physically, but that doesn’t mean that it does in ourselves. I may have learned what I can and can’t do physically and mentally, but along with the old knowledge that actually isn’t true any long, that I would be quicker to do it myself are all the life protocols that can’t just be changed or forgotten. It doesn’t matter if you are talking about fetching a glass of coke, or redecorating a room, the whole mental battle and argument that comes with them, is quite honestly mind blowing. It doesn’t take any of us years to learn that if something hurts or is now totally impossible, well don’t do it, but making it lie calmly in acceptance in our heads, is a whole other story. I don’t know why the delivery man was so slow, but I wasn’t going to let the reason he was being held up even longer, to be me.

I just lost another 40 minutes, I am guessing today is just not going to go anywhere near they way I had planned, one of those days when it would probably be best for me to throw the whole daily plan out the window and just do what I can, as I can. I really do love my friend Jake, but on the days that he isn’t working, he loves to just chat on the phone, which to be honest I do enjoy, it was just bad timing today, as I said, one of those days.


Please read my blog from 2 years ago today – 17/02/13 – A need to run

I’m in a rather sort of dreamy not with it mood today, every time I stop doing something I drift off in a sort of daydream, not bothered by my lack of activity or my ability to pull myself back to what I am doing. Days like this usually mean I will land up so behind with my daily list……