Fiddly bits

It is very easy in life, to just get comfortable, with things in our homes and lives and never even think, about changing them. Sometimes it’s because we think we have found the best there is, and at others, we’re just comfortable with what’s there, yes, it might be tatty, but it’s doing its job, so why bother changing it? I had for a while been intending to buy a new sleep mask, but for some reason, I just kept forgetting about it. The one I had still blocked the light, it was just that the edges were fraying and the elastic had turned rather slack, after months of use, it was overdue replacing. I had been so impressed with the one I had, I didn’t have the slightest doubt about buying an identical one. I wasn’t looking for it, but I noticed that some packs came with a free set of earplugs. I’ve tried many different ones, and although similar, these were a slightly different shape, from those I used, so worth a try, especially when it wasn’t costing a penny. They arrived yesterday and when Adam came home for lunch, he opened the package, which was once again beyond me. I understand that packages need to survive the postal system, but do they really need to be so tough? Who do they have working in the Post Office these days, gorilla’s with extra long nails? Once open he switched them over for me. leaving the new ones in place and ready to go when I went for my nap. Boy, what a nap that was. I couldn’t believe how I never heard, even the muffled sound of a single car, and the fit of the mask was so comfortable, I was simply stunned by the difference. I have to say, it has made me start wondering about some of the other rather tatty looking objects I use daily, simply because I always have, maybe, it’s time a few of them were changed as well.

It may have given me a great sleep, but it didn’t do anything about the pain I was in yet again from my stomach. I really am beginning to believe that half of what is wrong with me is coming once more from my guts. Clearly I’m guessing, but if I am in pain all night, the fact that I am waking up, uncovered or squashed into corners, says that I probably am, I won’t be getting a good nights sleep. Yes, I’m asleep, but what I am questioning is its quality. During the day, I am constantly on the move, twisting and turning, in an attempt to let whatever is inside me, to pass the area it’s causing pain in. It would be a miracle if it wasn’t disturbing me in the same way at night, which would explain, a whole list of things that have been happening recently. Just over a week ago, I made a new batch of Psyllium pancakes. I had deliberately made them slightly bigger so that I was getting a large dose from each one. Over the previous month, I was having to eat two instead of one, just to make things move at all, proving that in that batch, the dose was too small. On day 4 of eating the new ones, I went to the loo without any problems. Then again on day 5 and 6, on day 7 I suddenly found myself going twice in one day, something that is totally unheard of for me. Then yesterday, once more my bowels moved first thing in the morning, followed by even more intense pain. If I had been passing tiny quantities, I would be just shrugging the whole week off, but I haven’t. Granted my stomach looks a much better shape than it has in ages, but the spasms, are just never stop. It is as though my insides had been storing up far more than I thought was there, especially when you add in just how little I really eat.

Last night, I actually did wake up due to the pain, so I am reasonably sure that I have found the culprit for my increased tiredness. It’s over two weeks now that I have been feeling over tired, but, it is almost the same length of time since I started to have, increased pain from my guts and started feeling tired. The early stages were probably from the build up that wasn’t shifting, now, it’s because, it is. What I am not sure about is the dose of the Psyllium, do I continue with it just as it is, or do I reduce it? If I reduce, it may just slip back to not moving, if I continue as is, the pain may just continue as well. It’s a difficult one, but I think that I need to continue for another week at least, as I may just be getting used to the dose and it may just all settle down, now that the bulk of the work is actually done. In a way, it is totally my fault. I should have acted quicker last month when I first noticed that the thinner smaller pancakes weren’t working. But I just persisted, as they were the ones that I had made, and they were the ones, I was going to eat. I am so used to my routines and my systems, that the whole idea, that I had got that batch wrong, just wasn’t computing. I just continued in a blind belief that eating them anyway, was fine. I wasn’t going to waste them by throwing them out and I wasn’t going to waste any of my none scheduled time, in making another batch. I already begrudge them the time they take once a month, after all, my body is supposed to work without them.

That is an easy trap to fall into and this isn’t the first time that I have. I have to admit that, that, is a large part of the reason I don’t use my catheters. Somehow, that whole idea that I have to intervene to just to get my body, to do what everyone else’s does without thought, is wrong. I have managed to get my head around so many aspects of my health. I have accepted so much, but to actually physically intervene with my internal workings, feels like one step too far. So if I have to, then it has to simple and fast. Catheters aren’t, they also hold a huge embarrassment factor and a few other issues I’ve written about before. The fact that I have to make pancakes, and I really do now need Adam to help me as well, makes them an intrusion, something that being comfortable with, is really hard. Any idiot can be comfortable just swallowing tablets, me included. But having to go through a once a month ritual of 5 hours work to make those pancakes, to remember to defrost one every day, then to cover it in a fine layer of jam, and make yourself eat it, despite the odd flavour, is wrong. I do it, but it’s wrong and I’m not going to get through a batch quicker, or throw out a batch that’s not right, as I would then have to find another 5 hours to replace them. My body is demanding, so much care these days, just to do the things it once did by itself, and I’m not good about caring for me.

Tablets, inhalers, nebuliser, Pysillum pancakes, wheelchair, mattress elevator, shower seats, pressure mattress and cushions and all the other things I can’t think of at the second, they all push their way into your life. If they are there, like a mattress, no problem, I don’t think about it, I don’t even register its existence. But those I have to think about, that I have to interact with, they wear me down. Not going out, not being able to work, not having the opportunity to live an average life, spending that life in pain and housebound, without a memory and without all the things I once loved, unable to do all the hobbies I once loved, I can live with all of that. That is all easy, I accept it, work with it and make the most of all of it. Just don’t ask me to use a catheter, to find the time to make pancakes or to enjoy using a nebuliser. I don’t want them in my life, I don’t want to have to give time to them. I just want to keep being me, without all the fiddly bits. Without all those annoyances, well I could live forever just as I am, but the more and more things that I have to do, to keep this body going, the less I enjoy things. All I can do is, to hope that no more gadgets are foisted upon me, as I think I might just tell the doctor where to stuff it, regardless of their so-called benefits.


Please read my blog from 2 years ago today – 08/12/2013 – It’s gone again

Half an hour ago I knew what I wanted to write about today, but I was doing something else when the idea appeared and I stupidly didn’t keep a note of it, I just kept working away in the stupid….

What’s wrong?

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

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

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

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

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

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

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

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

When it’s gone, it’s gone

Since the weekend, I had been heading towards Wednesday with a clear plan for the day, a plan that was to start being put into action at 11 am. Adam knew all about it, but even though he doesn’t have the slightest reason for it, his memory is often almost as bad as mine. He came home for his lunch as usual at 12:20 and said nothing about it at all. So my error wasn’t touched upon and I carried on totally oblivious. In fact, there had been one huge reminder earlier in the day when the postman arrived bearing a parcel for me. Adam had ordered a new pack of Psyllium for me, in error, as I had enough to make at least 3 more batches of pancakes. Adam had even opened the parcel for me, so he too had received the same reminder, but even that didn’t remind either of us of the fact that I was supposed to be making the first batch of them from my chair. I didn’t actually remember at all about them until the time came that I should have been removing my daily one to defrosted, then I remembered there weren’t any left. How bad does two peoples memories have to be, to go through all that and still forget? So there I was an hour and a half behind on what I already knew was going to be a tough exercise to carry out. An hour and a half in which it should have been sitting quietly expanding as the yeast grew.

The parcel wasn’t the only thing to arrive in the post yesterday, I also received a letter from the hospital. I am to attend the dermatology department in four weeks time. It is actually the second appointment they have sent out to me, we had to change the first one which was for two weeks time as it was set for the late afternoon. We had to change it due to our knowledge of the NHS transport system. The original one was for 3:45 pm, we wouldn’t have been home until late evening at the earliest, making it a very long day for me. We have been unlucky enough in the past to have been not returned home until after 8 pm following a slightly earlier appointment than that. But worst case scenario, I might have had to spend the night, something the internal transport organiser warned us has happened in the recent past. The effect of a day like that is unbelievable for people with conditions like mine. Even the last one was still showing its impact several days later and with my health on the wain, I am not going to do anything that will upset it more than I have to. The new appointment may be further away, but at least I will be home that day. To me, though, this just shows how bad the entire system has become. My doctor, and we, are reasonably sure that the mole isn’t something to worry about, but if it turns out to be malignant, the outcome thanks to their system, well I don’t even want to go there.

I suppose that it is something that all of us who are ill have to learn to live with, but I actually wish I could turn the clock back for one reason and one reason only. From about 4 months after I became housebound, I cut all contact with the NHS. I had woken up to the ultimate truth, that they couldn’t do a single thing for me. I had had enough of being sent here there and everywhere for nothing. Test, examinations and wasteful conversations, all without anything other than the tiniest change, that usually changed nothing, drove me to just call a halt to it all. For 4 nearly 5 glorious years, I never saw a single doctor. I spoke occasionally to my GP, to tweak my meds, but other than that, I kept them all away from me. I knew without a doubt that my health was still slowly moving downwards, but it was livable. If I could turn the clock back, knowing what I do now, I wouldn’t have gone to the hospital when I first did regarding my breathing and intestinal issues. In fact, I really don’t know what it was that made me go when I did. At the time, little happened other than a lot of tests and the diagnosis of COPD, plus a couple of new meds. In all honesty, I probably could have waited until this year, as the two visits I have had this year were the ones that started to bring solutions. It has been my experience that once doctors get hold of you, they don’t let go and normally just waste your time and theirs in the main. If there is something that I long for now more than anything else, is the return of that peace. Just now, my life feels so full of medical people, that it almost like they are hiding in the shadows of my vision just waiting to jump out and say hello. Which is probably why I have chosen not to mention to any of them a new symptom that has appeared.

Actually, it’s not totally new, more an advancement of one. I know for a fact that I have mentioned at least once that I have lost all feeling in the center of my face from time to time. I can’t put a number on how many times I have felt it, I just know it has been happening on and off for a couple of years. At first it was just numbness and tingling. It filled a very clear triangle from midway down my nose, out to about a centimeter below and wider than the edges of my mouth. Over time, the numbness stretched into totally nothing, as though they had been cut free of me and there was a gaping hole in their place. Whichever version it was, it never lasted more than maybe 20 minutes and always returned to normal afterwards. Like so many sensations that my PRMS can create, it was annoying and occasionally a touch distressing, but it wasn’t really doing me any harm. About two months ago, I found myself occasionally being certain that I was dribbling from the right-hand side of my mouth, but when I checked it was perfectly dry. It would hang around for a while then like always vanish. For about the same length of time, the numbness and tingling was also more frequent, but I thought little of it, in the bigger picture of life, it was unimportant. Last week, suddenly I was having one version of sensation or another several times a day, it was clear rise and was the first time that I started to feel the same sensation starting to spread outside of the triangle.

On Sunday night, I woke up just before midnight, I had a headache from hell again and a high pitched squeal that filled my head, not like tinnitus which I have had for years, this filled my head, not my ears. I felt as though I had some kind of helmet on that was causing an even pressure over my entire head and yes, the entire triangle was gone, there was nothing but the hole. I was feeling terrible and I was reasonably sure that once again, my oxygen levels were low, but I had left my meter in the living room, so I couldn’t check. Oddly, for most people, but not for me, I was more worried about my missing face, than the possible fact I was missing oxygen from my body. This time, it had gone further, it wasn’t just the surface of my skin, but it went on inside my outer face, as though a large area had been gouged out. I got up with some difficulty and the steering of my wheelchair was so bad that the clattering brought Adam out of the living room to see if I was OK. I told him I wasn’t feeling right, but all I wanted was a cigarette and to sit for a while in the dark of the kitchen. Once my face felt more like my own, I went back to bed and thought little more of it. That was until the next day. The sensation as though I were dribbling is now permanent, it hasn’t gone at all since, and other things have slowly been joining in and spreading.

This morning, I woke to find that almost my entire right side of my face is now mildly numb like it is coming out of a local anesthetic. My eye itself and the bridge of my nose haven’t joined in yet, but it is clearly there right up to my cheekbone and around the outer edge of my eye, temple and a third of the way over my brow. It has also now left just my face, it’s right out to my ear and had gone below my jaw line and now goes under my chin and into the top of my neck. For the first time since Monday night, I am also experiencing numbness inside my mouth and around my gums, just again on the right. Clearly something major is happening to the nerves in my face, but I can’t think of a single reason why I should mention it to my Doctor. I know, just as when I lost my left hand, there is nothing they can do about it, but there is still this feeling that I should tell them. I guess, there is still this little part of me that hopes they will actually be of use in a crisis, despite it never happening before. There is like for so many other things in my life, nothing anyone can do other than wait and see what happens next. If I am lucky, it will settle down and return to normal, if not it will continue until it reaches its final planned result.

Please read my blog from 2 years ago today – 24/09/2013 – Chronic illness break down

I keep waking with terrible pain in my left heel, I know that that sounds really minor and stupid on the scale of things I live with, but it’s something I don’t totally understand. The pain can vary as to which……

It’s good to talk


I don’t feel great this morning, nothing major, just one of those days where I feel out of sorts, something that considering MS and Fibro are all about muscles and nerves, I have never understood. I seem to have spent a rather large part of my life feeling like this and just getting on with it. It is a bit like my conclusion that when the doctors told me that they could find nothing wrong with me, despite all the classic symptoms of both conditions, I came to the conclusion that I was a wimp as clearly, that meant everyone in the world lived with the pain I did, they just didn’t complain about it, feeling out of sorts, has fallen into the same slot. It’s not like we ever in our lives sit with everyone around us talking over how our bodies feel exactly, day to day or even when truly too ill to function, we don’t talk about these things at all. Yet here we are a race of people who believe we have more knowledge at our figure tips than any other age, but truth be told, none of us truly know exactly how our bodies should or shouldn’t feel. Add on the fact that when things change slowly, as they do over time, we really don’t stand a chance as we age of avoiding those slow burning illnesses. I honestly believe that we are probably the worst generation for not know anything about ourselves, step back in time and people talked amongst themselves, as they couldn’t afford doctors, talking was the only way of stumbling over a cure from a friend or acquaintance and history tells us they weren’t shy about it either.

I clearly don’t have a problem talking about what is happening when it comes to my body, but that is something I have only learned to do in the past few years. I was brought up such that you just didn’t talk about any bodily function ever, regardless of what it was. I still remember when I was 11 I had been having my periods for about 3 years so I was used to the secret way they were dealt with. My Mother never spoke about them with me, just left me a supply of pads in a brown paper bag in my under ware draw each month. I made a mistake one day while sitting with the family I mentioned that I had an extremely painful stomach due to my period. You would have thought that I had just killed someone and my mother stood up and called me out of the room, then instead of giving me a painkiller, I was given a lecture on how totally inappropriate it was to say such a thing. Those words stayed with me and shaped my way of dealing with my health until I was in my mid twenties, even then I still held most of it inside, only daring to talk to my doctors. Without a doubt, I wasn’t the only person brought up like that and without a doubt, there are millions of people out there who see it as just not complaining when in fact, they are locking themselves into a world of pain and illness that they don’t have to live with at all. I may have learned to talk and to write about it, but only to a point, there are still things that it takes it to be extreme before I would bother to talk about it with Adam, no secrets, just not totally comfortable for me to do so. Bringing back that ability to talk freely isn’t just about making sure we don’t have illnesses that could be treated, it would also work the other way as well, it would stop us worrying or going to our doctors when it isn’t needed at all.

I am actually just waiting to talk about my health but with my doctor, I have left a message asking him to call me as the ‘things’ are growing, I made sure I gave away no information to the receptionist, as I want to talk to him. Partly I want to talk as I would really like to stop calling them ‘things’ and find out what he thinks they are, I guess he might say cankers but I will question him on that as three major facts don’t fit. More than that though I want to talk to him about the antibiotics as I realised last night that this is the third time in a row where I have required an antibiotic and the first version prescribed hasn’t worked. Personally, I have never been someone who has taken many antibiotics, but they are saying that more and more people are finding the same problem, they just aren’t working for them. This is the start of week 5 for the ‘things’, so clearly my own body is also failing when it comes to dealing with them, so other than the next level up on the antibiotic scale I have no idea what can be done, constant oozing pus isn’t something anyone can live with forever, as it will just spread. It might even be the reason that I am feeling off colour again, now that the other antibiotic is out of my system, my stomach and so on isn’t dealing with it either.

The weekend passed quietly until last night when sitting chatting with Adam while I watched the “Antiques Roadshow” and he scrolled around on Facebook. Suddenly he started talking about it being someone’s birthday, I had to get him to repeat it twice as I wasn’t sure what he had said. Eventually, I understood all too clearly what he was saying and I instantly felt terrible. Yesterday was my daughter Teressa’s birthday and I had once again totally forgotten about it, yes I said again as it is far from the first time, I am the world’s worst at remembering birthdays. Ask anyone in my family and if any have had more than two birthday cards from me in the past 20 years, well they are the exception. The daft thing is I always feel so guilty about it, even when I think they would be more shocked at me remembering than forgetting, it doesn’t stop me feeling bad about it. I think I might actually be the only person living who managed to forget their own birthday as I did several years ago, it was only when a card arrived that I remembered. I have tried to work out why I forget these things, in part it might be down to the fact I don’t understand why anyone would want to remember their own birthday once out of childhood, nothing to do with age, just to do with I don’t get it and part is just having a terrible memory all my life for dates, which is just getting worse thanks to my MS. You would think that the terrible guilt that I feel when I realise that I have forgotten, would be enough to make me remember, but not even that works, guilt or not, I have just forgotten another of my daughters birthdays, mind you, she is now at an age where I have forgotten more than I have remembered, so it won’t of surprised her it has just happened again. Sorry Midget, your Mum just doesn’t have a brain and can’t help doing totally unforgivable things without even realising she is doing it yet again. I hope yesterday was a great day for you and sorry again.


Please read my blog from 2 years ago today – 22/09/12 – Steps to the Future 

I can’t believe how much the pain in my back is getting to me. I live daily with pain everywhere and on new pain from an accident is driving me mad. I have even added ibuprofen on top of everything else and the pain is still getting to me? The whole pain relief thing isn’t making much…..