Which way to weight

I gave in last night and I turned on the storage heater in the hall. I don’t remember ever putting it on this early in the year, but I really can’t deal with another day of being frozen out of reality. I know a lot of people wouldn’t count our home as having central heating, but I do, we have one storage heater and it is totally central, in between all the rooms we have and surprisingly to others but not me, it keeps the whole flat warm, well it does once it is at full power. I have had storage heaters in many of my homes over the years and I have learned that taking them up slowly to that level is the best thing to do, if you don’t want them to trip. If they do you have to wait for them to be cold, unscrew them from the wall, reset the trip system buried inside and start all over again, I very much doubt I have the strength to hold up a storage heater any longer, so slowly it is. It may be just on above zero, but it has already removed the worst of the chill, I don’t get why so many people don’t like them as other than a real fire with a back boiler, storage heaters would always be my next choice. I know some think them expensive, but I don’t find them so and with the price of gas rocketing, I think I have had the last laugh.

I woke this morning feeling a little bit brighter, despite having yet another disturbed night, I would at this minute give almost anything to have a week of sleep without out some part of me waking me at some stupid hour. Last night it was my legs that did the actual waking but once awake I knew I had to go to the loo before there was any chance of my sleeping again. Once up I decided to have a cigarette before returning for the rest of the night in bed, I had just reached the kitchen and lit my cigarette when I heard Adam wondering around in our rather small hallway, with nowhere to really wonder, I quickly realised he was searching for me. Rather than have him panicking I told him I was in the kitchen, as normal, I hadn’t turned on a single light. I avoid light like the plague, as I have learned that it makes it harder to return to sleep and I have I suppose like a blind person, learned my way around the house. It is actually even easier if you also keep your eyes shut, that way you don’t try to see and don’t invent the wrong directions. I have it now right down to the point that I can put my hand directly on the cigarette box in the kitchen, as well as the correct switches on the cooker to light it from. I do love the fact that he cares enough about me that he feels he has to make sure I am OK, even in the middle of the night, but I would far rather he stayed lying down and got his sleep at least. I know exactly why he checks, it’s because years ago I managed to knock myself out in the kitchen and I lay on the floor unconscious for what we think was about 3 hours. I must have made a noise I wasn’t aware off as I don’t always wake him, but there we were both in the kitchen at 5:30 in the morning. Once he was sure I was fine, he asked if it was OK for him to go and lie down again, he really is just too sweet at times, as if I was going to make him stand there while I finished filling my body with nicotine. From that point until the alarm sounded I slept fitfully, I was once more running through my mind conversations that will never happen. I don’t know why I do it and I just hope I am not the only person who does, otherwise I am about to admit I am a lunatic, but I spend a lot of time at night when not fully asleep, talking to my doctor, Adam, even people I haven’t seen for years, either reliving conversations as they were, or as they should have been, or in totally new conversations I haven’t yet had and might never, kind of dependant on how the rehearsal goes. There couldn’t be a more useless waste of time, but for some reason, I seem to have a need to do it and I can’t make myself not. This morning it was my doctor and it was basically all the things I said in yesterday’s post, just put in a fashion I hoped he would understand, not that he did as I didn’t land up any further forward than I was yesterday.

Once again this morning about half my porridge is still in its bowl, breakfast really does seem to be the hardest meal for me. It wasn’t until a couple of years ago that I started having breakfast, I never seem to really eat more than two meals a day, in fact for years it was only once a day. It was as I started to need to go to bed earlier and earlier, I was finding that having my dinner at 7 pm just wasn’t sitting right, so I switched my main meal to lunchtime and then slowly changed it from one big meal, into two smaller ones and it has worked well until recently. Maybe that is what I need to do now, just shift things around and see if that works, I guess if I am honest, I would be totally shocked if my life could just stay the same for any true length of time. I was about to write once again that I haven’t stood on the scales and decided instead to go and get the scales out of the cupboard, take them to the bathroom and stand on them. I usually would do that when I was having my shower, as it means not wasting energy, but I have been saying for weeks now that I need to stand on them and I haven’t. I was shocked to find that I have lost three-quarters of a stone. My weight hasn’t shifted anyway but upwards since I became housebound, so that is just totally amazing, but it puts me in a somewhat odd position of being delighted that I have lost weight, but now not understanding how it has happened. Considering that the quantity of food I have been eating has stayed more or less the same for several years, yes I have changed the items that make up my diet, but the calorie, fats and so on levels aren’t that much different, why I have suddenly lost weight doesn’t totally add up, as clearly, I am not doing any more than I ever do. The only thing I changed was from oatcakes to rice cakes and from hard cheese to Feta for my lunch, I was hoping that the change would be enough for something to change, even if it was to hold it steady. For about 8 weeks after I kept checking hoping that I might just loose even a pound ever couple of weeks, but I lost nothing, the weight was still creeping up by a pound a month. Right now though I am just delighted to know whatever the reason, I am just that little bit closer to the weight I used to be, just another 3 stone to go then. On the serious side, I will have to keep an eye on it, I had simply been putting it off as standing on them had just become a totally depressing process.

The longer you are ill, the more you avoid doing anything that is going to bring in a note of something that can’t be changed, weight is all too often one of them. All of us male or female get depressed when our weight rises and I was one of the lucky ones in a way, as I started out below weight before the doors finally shut. Three and three-quarters stone sounds like a huge weight gain, but I didn’t start eating more, in fact, I didn’t change anything. Immobility is one of the real dangers of chronic illness we never think about, it doesn’t matter how hard you try to diet, without any exercise because you can’t even walk, means you gain weight just eating the recommended daily food for an Adult. I just did a really quick calculation and although not 100% accurate, it does work out roughly at a pound a month, not much, but over 7 years it all adds up. I was actually surprised to find the calculation mirrored what I thought the gain was, as trust me, you get to a point where all you want to do is avoid scales of any type, followed by mirrors. With just a tiny amount of thought, we all know the dangers of weight gain, it alone opens up loads of new illnesses just waiting to strike, but so does malnutrition, there is no easy answers or perfect diets. I know as I said yesterday, I am eating far too little, but yesterday I believed that I was still gaining weight at a pound a month, but what are you supposed to do when you have no appetite.


Please read my blog from 2 years ago today – 31/10/12 – Positive learning

I’m tired today, nothing new there then. Joking aside I am really tired I have been since Saturday I seem to have these sleepy spells and have done for years. No matter how I try, I have never managed to work out what the trigger to them are, it isn’t as though I have been doing too much as I haven’t really done……

What comes next

I knew this morning as I was making my porridge that I wasn’t going to be able to finish it, but I made it anyway just as I always do, by the time it was ready, I didn’t want to eat any of it. I sat here staring at a plate half filled with hot porridge and had to make myself eat every single mouthful, making yourself eat, as everyone knows is a hard thing to do, your body is screaming at you not to, you don’t need this and it isn’t welcome, but you eat each mouthful, fighting it down into your stomach, until the final warning comes and you have no choice but to stop. I had managed three-quarter’s of it, without enjoying any of it. I don’t understand what has triggered this appetite close down, but after more than a week of it, I now realise that it has no intentions of letting go of me. I thought a couple of days ago that it might just be my body reminding me that I hadn’t taken my weekly laxative, so I took it that night, as luck had it, it didn’t actually start to work until late on and didn’t complete until around 2 am, once again a disturbed night, but with a purpose this time and the expectation that I would feel more myself in the morning. I don’t, I feel really quite awful today.

I really don’t know what is going on all I know is there is something wrong with me and it has been building and building over the last few weeks. It all seems to go back to the day that I found myself totally unable to pass anything from my bowel, which as regular readers will know I have discussed with my GP, but he didn’t seem that concerned about it. From that day right through to today, everything I can think of has slowly been getting worse and I have been equally been feeling slowly worse as well. I have had days here and there where I thought that things were settling down, but they just don’t last and when they end I feel worse than I did before. I have no doubt that my MS is at the root of the issues with my bowels, it has been investigated in the recent past and nothing was found, other than the fact it just isn’t working as it should as the nerves aren’t stimulating anything any longer, not much of a surprise as it was something I had been telling them for months. I often wonder just how much doctors actually listen to what we are telling them, or if they just latch onto words here and there and miss the rest out. The result is that we go home and continue to get worse because they just haven’t picked up on the clues that were there, before they become a major issue. It has left me wondering what I should do, do I call the doctor and say what, that I am feeling wrong, that I have no appetite and that my bowels are still not clearing, as after being woken twice last night, I still don’t feel it is clear. Do I mention again, the increase of the spasms in my rib cage that compress my lungs, or the fact I just want to sleep more and more? What bits are important, is the increase in my spasms in my arms and my legs, or the recent arrival of a new pain in my chest, one that takes my breath away and leaves me not sure of where it came from or why? It could be the nausea or the constant feeling of my diaphragm being tight and solid, or it could be the pains in my side and the increase of the bruising along the rib line under my right breast, or the series of neuralgia attacks in my brain. I could keep going listing and listing but I don’t have the slightest idea what is important and what’s not, as most of it, are just part of what it means to live in my body and nothing can be done about that, but for all I know what I call normal might just be the most important point and I am the one that has missed it.

That is always the problem when you live with chronic poor health and a list of already diagnosed conditions, everything becomes a mixed mist that finding your way through and spotting the true reason and the true symptom that is at fault, is almost impossible. It wouldn’t surprise me if those of us in my position are actually living with ticking time bomb that we don’t tell anyone about, just because we think that it part of what we should expect. It used to surprise me that so many of us with chronic illness didn’t just have one, we have a collection or a gang as I prefer to call them. When you think about it, it isn’t that surprising, as I bet like me they actually already had a gang before the main and most devastating of them was even thought of or found. For years I was sent to this doctor or that, some found nothing, others found something be it IBS, osteoarthritis, asthma or Fibro, the lists kept growing and I was just lucky when by chance they found my MS as they weren’t even looking for it. So most of us live with our own personal gang and the worst thing you can do is put yourself in the hands of the specialist as I did 2 years ago as they will find something new, like gallstones, something else I didn’t really need and had no idea where even there.

Clearly I used to be happy to put myself in the hands of the specialist as I used to have this strange belief that whatever they found they would be able to fix, the truth, the real truth is they can’t fix any of the conditions I have and I guess the majority of us have. I’m not so keen these days, surprisingly I really don’t need my gang to get any bigger, these days I would just rather not know as it achieves nothing other than more pressure to live with. Being told I have COPD did nothing for me, it just gave me another name tag and another source that I could partially blame for what was happening, but the main issues is as always my PRMS. After several weeks of feeling ill, not the ill I have lived my life with, but another ill on top, I am at a loss of what I can do next, or even who to turn to or do I even really want to. I don’t want to feel like this, but what are the real options and the real outcomes? I have several progressive conditions, I know what that means, but just like I was told years ago that there was nothing wrong with me, I know that whatever is happening now isn’t a progression, something is new is happening and it just doesn’t seem to want to settle down and leave me alone. I thought once, that once I had the final diagnosis, the biggie and the one that had made my life so difficult for such a long time that I would be fixed and free to live, the horrid truth is, it just keeps getting worse.

I am under no delusions of what my health means and where it is eventually going to end, but I’m not ready to be run over yet, all I want is to feel well, I can live happily with the pain and all the side effects of my illness and my medications, but it’s a fact I already eat very little, probably not enough for other parts of my health, I can’t afford to eat less, yet I am slowly losing the ability to not just eat more, but just to eat. I don’t want to wake up every morning feeling like I want to throw up, or wanting to eat and trying just to find that a tiny amount makes me again feel sick. It seems that no matter what I do in life, there is a line of fate that I found somewhere along the line that says “Nothing is every going to be easy, everything will be a battle, but you can’t just give in, so get up and deal with it.” For the first time, it is failing me as I just don’t know how to deal with it right now, I guess like everything else, the answer will appear.


Please read my blog from 2 years ago today – 29/10/12 – Bringing speech to mind

Yesterday reminded me that is a simple thing that would make most people angry can upset a lot more than my mood. The whole day was simply a spiral downwards of pain and memory problems. I had noticed over the last few weeks that my word memory when talking had been growing in its gaps, I have found…..

Dealing with feelings

The house is so cold, yet I keep hearing on the weather forecast that it is warm for this time of year, usually without them clarifying that they are in fact talking about London and the far south as always. It is odd how that annoys me, as I never watch any of the so-called Scottish channels, they drive me up the wall with their small town attitudes and they’re stuck in the past profiles. Sorry but I really don’t care who won the ‘Mod’, or what happened in Ballater yesterday and if I hear one more person trying to draw comparisons between now and the battle of Bannockburn, I think I will explode. Honestly, you can be a proud Scot without wearing tartan, dying your hair ginger and draping the Soltar over your shoulders. All I can say is thank God we have Sky and that we can choose which versions of life we prefer to live in. I guess that is one of the things that truly divides us from previous generations, we have choice over how we want to live, who we want to be grouped with and what we make of our lives, we are not dictated to by the vagrancy of birth. Even now, I still have all those options open to me, I would go as far as to say that if there has ever been a good time to have a serious chronic illness and to be housebound, this has to be it, it may not be perfect, but we all still have free choice and possibilities open to us. Just 60 years ago we would have been shoveled out of sight and dismissed as not worth making an effort to help, beyond nutrition and hygiene, which is exactly what happened to my grandmother. My grandfather divorced her when she became chronically ill, I don’t know what was wrong with her, I have asked but the answers were always the same, no one really knew. He bought her a house and supplied her with a nurse, but none of the family were allowed to see her again, not that she lived that much longer, only 5 years or so. I used to hate it when people said to me that I should count my blessing, probably because I didn’t really understand the saying in it true sense, as to be able to count our blessings, we first have to have lost something life changing. I know it is the proud scot in me that makes me angry with the weather forecasters, stuck in their cupboard in broadcasting house in London, their worlds are as narrow as the studio they work in, to them like most people, their life, where they live and what they do, is where the world starts and ends, so it’s odd that it has taken me to be housebound to really start to understand the extent of the world we live in and blessing that we all really have.

I was feeling sorry for myself yesterday, yes I am human, I do have days when all that whirls around in my head is why me, what did I do to deserve this, there isn’t a person on this planet who doesn’t have days like that, just as we all have days where the world is filled with flowers and butterflies that no one but we can see. It can be hard when you are sat alone in your home, cold and in pain, just wishing your day way, as you know that it will change when the front door opens and in comes the grumpy monster from work. Adam comes home every day with this black cloud and lightning bolts over his head, but it makes me laugh as, stomps around the kitchen swearing at himself and getting even more angry over stupid things, like his sleeve being stuck to his hand as he tries to take off his jacket. I know that within 10 minutes of him leaving the kitchen and putting away his outdoor clothes, then slumping on the small settee with the belt of his jeans undone and his hands up behind his head, that it will all start vanishing and he will then be home with me for the night. For me it was a day where that was all I was waiting for, all that I looked forward for, it doesn’t matter how busy I keep myself or how well planned out my day, once you have slipped into that feel sorry for yourself slot, climbing back out is hard. Unlike Adam I can’t stomp around the house slamming doors and turning the air around me blue, I don’t have that coping mechanise in me, I am a pusher, not a stomper, I push myself and I push myself hard.

I don’t know where it came from or why I even did it, but it has always been my answer for feeling sorry for myself, I start pushing my abilities. It used to be doing a workout, or a frenzy of cleaning, anything that would make my muscle ache and meant I was too busy to allow myself to feel down. I used to push myself for days, not hours, not allowing myself to feel anything mentally and it worked in its own way, but with that option gone, all I can do is to push myself to do things faster were possible. We all have our own coping mechanisms and those I have seen or read about mostly seem to have a physical aspect, whatever the action is, it comes down to distraction and controlling the release of our feelings, so we can work our way through whatever it is. It is very ease once you spend as many hours as I do alone to start over thinking everything, to invent things that aren’t really there, or to blow things up from minor to major. Routine and distraction can only go so far and once your concentration levels are low, slipping off into thought is amazingly simple. Every one of us looks back on our lives and compare what we have now, to what we had and then we project that into the future, you don’t have to be disabled or ill to do that, it’s just human. I like anyone can list the things I have lost simply due to everyday life that hurt me the most and yes, most of them still hurt, but then on top of them I can add what I have lost due to my health, but the real issue is that no matter how positive your life, or how much you have in your life that is good, there will be times when it all gets just that bit black.

For me now, the best way to bring myself out of the low times is to bury myself in the things I love, to watch my favorite TV programs, especially history documentaries, they always put my life into perspective. It’s hard to feel sorry for myself when I compare my life to that of someone in the trenches of world war 1. I guess it is still distraction, but it feels kind of tame compared to lifting weights or doing sit-ups until I can’t move, which would now be less than one. I guess what I am trying to say is that low days happen, sometimes they might even group themselves into a few days, but don’t write them up as depression, they are just the things we all have to work through so that life can go on. The real trick is to work out what works for you, for some even wallowing for a while is correct, but don’t let it hang around too long, as the truth is life goes on, so why not make it the best we can.


Please read my blog from 2 years ago today – 29/10/12 – Strange day.

There is a great temptation today to simply have a rant about Twitter as my account was suspended yesterday evening as I had unfollowed a large number of people who hadn’t followed me back, apparently this is against their rules and well my account suddenly went offline. The system they have actually……

Let me do it

Cameroon and San Marino, just two of the countries from where someone has stopped by to read my blog from in the past 12 hours. I truly love this world where someone like me can be sat apparently isolated from the world, yet thanks to the internet people from countries I have heard of, but know little about, just stop for a moment to read the ramblings of a middle-aged woman. I can’t imagine what it would be like to be housebound without the internet, I know many still are, even the other day there was a comment left by someone who is reading because their Mother has MS and they want to understand what is happening to her more deeply, but she isn’t online, the hours of her day must go on forever. I have to say that it is one of the few things that I thank my first husband for as back in 1986 we had one of the first home PC, nothing like today’s but enough to get me interested. Anyone who had a PC back then also had the whole idea that you could break it with just a touch, also removed as if you wanted to do anything, you first had to program it, probably why when it came to the point that I needed my PC to do much of my work for me, programming was a natural step. When I received the final payment from him following our divorce, I purchased my first real PC and I was in just days, online and I never looked backed, from then onwards life without the internet seemed unthinkable. I am not a fan of the new touch screen systems that is everywhere these days and anyone who would like to try and separate me from my baby who despite being five years old now, still purrs and flies as perfectly as the day I bought her and makes life bearable, would find that pain or not, a she-wolf ready to kill. Having said that, I doubt there is a person on this planet who couldn’t very quickly be taught how to use a tablet and I also know without a doubt that it changes lives. I would go as far as to say that if there is anyone out there over the age of 40 who isn’t already using at least a smartphone their families need to take them in hand and teach them to, as one day, through health or age, they will be grateful beyond words that someone taught them. Life is strange that way, I never thought that other than for the birth of my daughter there would be anything I would look back and thank my first husband for, but I just have, I guess we never know what from our past, or our present will actually be the root into our futures.

The bi-weekly shop just arrived, it’s probably the last of the household chores that I still do, not that entering the details into a website and opening the door for the delivery guy to drop it all off in the hallway, is really a chore. Adam has offered several times to take it over but it is something that I hold onto tightly, not just because I know without a doubt that the shopping that would arrive would have most of what we need missing, proved by the fact that over the past 6 months he still hasn’t managed to write a full list, but that more importantly, it is the last thing that I do. I didn’t really notice most of the other household things going, as it was a drip, drip process. First, it was the heavy housework, anything that needed a ladder really, cleaning windows, bringing down and putting back the curtains when they needed washing. Then more and more of the housework, the hardest part of it wasn’t letting him get on with it, but the fact it has never been done or kept at the level I would say is done properly. Pin perfect it’s not, but I did 4 hours of housework daily, yes and holding down a full-time job and still cooking meals daily from scratch, I was an old fashioned housewife, he is a modern male, our personal standards will never match. I went through the same problems with handing over the laundry, other than a couple of my get mad and do it spells, I haven’t seen the laundry basket totally empty for years. It may on first reading this that I am taking an opportunity to take a dig at Adam for not doing it the way I believe it should be done, but I’m not.

All of us have roles in life that without sounding patronising to anyone, they define us, I know many women will be screaming at me right now for implying that housework could possibly define any modern woman, but it does, like it or not, but it also defines a lot of men as well. We are these days truly defined by our value to society, what a paid work lives say about us. I had a highly pressurised job, being the Operations Manager and totally responsible for the actual functioning of the company and call centre, plus supplying all the company reporting it pressure. When you meet someone new they ask “what do you do?” and we always say what our job is, we don’t say all the other things we do, so that is our first definition, our second is when we bring them into our homes and regardless of what our job is, our homes actually show the real us, not just by its style, but also by how we care for it. I have never understood why, but almost everyone who meets me is shocked when they first saw my home, they for some reason never seemed to expect what they saw when they entered my front door. Our homes are us, not just the mental capacity to earn money, they are the windows to the real person, the one that lives inside the persona we show the world and as an ex-manager, I would say the perfect place to interview future staff. A visit to someone’s home shows you how organised they are, how much attention they give to detail and style, whatever their style is. Are they fussy, busy people, or relaxed and laid back, do they have piles of stuff lying around or perfectly organised not just on the surface, but in cupboards and draws as well. Is their home cluttered or positioned and displayed, how much attention do they pay to cleanliness, it is sparse and modernist or comfy and homely, it goes on and on, our homes are the real extension of us. When you see a home in that fashion, to then have it in many ways ripped away from you is painful. Not having my home perfect to me, is as painful as having had part of my amputated and left forever bleeding. It is another daily pain that over the years like all the rest of the pain I live with has become an undertone to my life, that I can do nothing to change. There are millions of people around the world who would love to never have to do housework ever again, I would do anything to just be able to do it once more and to once more see my home pin perfect.

Losing abilities from the tiniest ones to the most major we can imagine, is painful. The first one for me where my dexterity and that for me took away all of my hobbies, as I loved all of the old fashioned handy crafts and my creative DIY. Then went balance, which took the last of the DIY and as my energy vanished slowly everything else did too. Being unable to thread a needle was just as a painful, as not being able to use my wheelchair anymore, the size of the loss as other see it aren’t the way each of us will feel it. If you love doing something, to loose it causes grief, not just because you are losing an ability, but because the truth is, you are losing part of you. And unlike an amputation where the limb is never seen again, most of our losses are there in front of our eyes every minute of every day.


Please read my blog from 2 years ago today – 28/10/12 – Dreams to the future

It is strange how your life can be taken over by something without you giving permission or actually realising it is happening. A year ago I never thought that I would be writing a daily blog and being very active on both twitter and Facebook, somehow it all happened. Life for me has followed that pattern……

Life’s itches

I am sitting here struggling, not with pain or spasms, but with what feels like my entire body, I have that horrid ill feeling again, this time I know what it is. In the last few weeks I have been having odd days here and there where I just can’t actually finish what I have made to eat, all the meals I have aren’t what most would call big, but all to often I am finding that the porridge I make can’t be finished and has to be thrown away, exactly the point I am at right now. For years I have been going through spells of this, just not able to finish my food, not because I feel over full, but simply because I feel that if I ate one more mouthful I would throw up. For the last few years, I have had exactly the same breakfast and exactly the same quantity, I can be sure of that as I measure out the oats in the same ramekin every morning. I didn’t choose the quantity because it was the amount I wanted to eat, it actually came down to the amount that I could cook in the microwave in one of our bowls without it bubbling up and out of the bowl, but it does mean I can be sure about what I have prepared. I have been having the same issue with my other big meal of the day but I have the answer there, it is always a cold meal so I can eat it as slowly as I like, unlike the porridge as there is nothing more disgusting than cold porridge. None of that helps me at this very minute when even though it has to be more than fifteen minutes since my last mouthful and I still feel sick. I personally have linked my inactive bowel to the problem for many years, but the doctors seem to brush that aside and insist they are two separate things. Although I don’t seem to have lost any weight, mind you I haven’t stood on the scales for a couple of months, but I don’t feel I have lost anything, I am eating far too little and I know it, but what can I do when I can’t eat anymore and what I do eat, just doesn’t leave me?

My body does seem to be falling into quite a bad state at the minute, between the above, the constant spasms in my rib cage and my bladder just not wanting to empty when I want it too, I am right now struggling to see what of my internal functions are actually working correctly. Usually when my bladder plays up, I just self-catheter for a couple of days, it might be that that just allows it to rest and return to normality, or that I am just getting myself through a bad phase, but to date, it has worked. Despite being told that I should be using a catheter all the time, I stopped that just a few months after being taught how to use one, as it is yet again one of those medical theories that isn’t practical. Right now the issue is that my bladder seems to be locking so tightly that I can’t actually get the catheter in, all I can do is wait until I feel like it is about explode and then head for the loo, at that point it always releases, probably because it can’t do anything else. There is also one other thing that works and that is to make it function by taking diuretics, my bladder than fills quickly and empties cleanly, but that doesn’t help me at night. Last night I tried but couldn’t empty my bladder before going to bed, I could do nothing else but go to bed with a prayer that I might make it to the morning, I didn’t. I woke at 2 am, desperate and having to move as fast as I could, not easy when your body is half asleep and wanting just to return there. Disturbed sleep isn’t good for the pain levels or spasms, I don’t know why but the less I sleep the greater they are, it is also a fact for me at least that if I am woken for any reason what so ever, I never go back into a deep sleep, proved again as I was up at just after 4am and again woke at 7am, before the alarm at 7:30. Clearly taking a diuretic anywhere near bedtime, isn’t a good idea, but I am thinking of taking it around 4pm, that way hopefully I might manage to remove the bulk of the daytime build-up and will get a clear nights sleep tonight.

When you are first diagnosed with something like PRMS, there seem to be people all over the place who teach you how to deal with the issues you have at that point. For example, I just had to mention once that I was having problems with my bladder and I was a week later in hospital being tested and the week after that I was admitted for a full week to learn how to use the catheters. They didn’t seem at that point as though there was anything that they wouldn’t do to help, I have to admit that at the time I thought it was because they knew they had botched things up for the previous 20 years and they were feeling guilty, now I doubt that, but I see a need for the same concentrated approach as the stages advance. I know that my choosing not to keep going to see my Neurologist may be partly to blame, but I honestly think that I should be able to get the same level of care through my GP. I have been over and over with him the issues that I am having with my bowels, yet here I am still blundering around in the dark and not getting any closer to resolving or even under control. I think there could be a real positive for people like me with memory issues, to spend a couple of days in a hospital setting every four or five years. I hate staying in hospital as much as the next person, but caught for 48 hours with people to talk to about what is really happening and with them able to observe just how you are really coping, could see a huge improvement in many people’s health. I know the NHS is struggling with their budgets and such a plan will probably never happen, I am just throwing the idea out there, as I honestly believe that I would be able to over that period of time, to really pass on and show them the truth of the issues I have, not just my sketchy half-remembered garble that comes out when I speak to my doctor at his convenience, not mine.

I just checked the ‘things’, well the place where the ‘things’ were at least. It has now been a week since it closed up and the last of the pus left, but I am very aware of the fact that the skin on the left side of my mouth just doesn’t feel right. The worst thing on earth to gauge anything size has to be the human tongue, somehow it enlarges the tiniest speck into a mountain, so the fact that the area still feels nothing like it was before, well I was taking it with a pinch of salt. Any piece of skin that has been stretched hugely for around 10 weeks, is going to take time to return to normal, that I think is quite simply a fact, so the feeling that it is sort of baggy and not anything like the other side of my mouth isn’t really worrying me. What made me look is the feeling that there are new lumpy area’s, I was worried they just might be lumps getting ready to burst. Luckily there is no sign of that, it does still look different from the other side and I think the lumps are more wrinkles of skin caught between the tightening sections, but it is clearly not as taunt or sharp as the shaping on the other side. There is even some more than obvious new folds in the skin at the side where it used to be a clean line connecting the top of my mouth to the lower section. Now there are three ridges rounded and soft folds on the right side compared to just the one fine and sharp ridge on the left. Other than that, by just looking at it, there is little sign to me that there is anything there at all, possibly a couple of slightly raised area, but nothing that would make me bother anyone with, but I have agreed to go next week to the dental hospital and I will. The only odd thing I am constantly aware of is the sensation that the frontest skin ridge is permanently itchy, I would just love a bag of crisps right now so I could munch and crunch them on that side of my mouth, scratching and scraping at it in the process, no matter what else is wrong with me, there is still one thing that I would put at the top of my list of annoying things in life, that itch that you just can’t scratch.


Please read my blog from 2 years ago today – 27/10/12 – Questions

It is all too easy these days to get the impression that everyone in this country and maybe in the entire western world has gone mad. I know values change and so does technology and expectations, but when I heard lately that one of the items now in the list of essential items, used to determine if you lived in…..