Tell me it isn’t so

I have had a few tweets in the last weeks that have left me somewhat concerned by what is happening in the outside world. I have found some of them disturbing enough, that I am beginning to be truly glad that I am housebound. I had realised before I was no longer able to go out and about myself, that there was an element who had developed a somewhat malicious attitude towards the disabled. When I recently wrote a piece about how things were several years ago, I had my eyes opened by some of the comments, but now I am getting the impression that it is even worse than I ever thought possible.

I received a tweet yesterday, which ended with this ” it makes it harder though when it’s not understood; the pain doesn’t leave me the energy to explain/defend”. I found that so wrong, so distressing that someone should even feel that way, that I responded with the following “We should never have to defend ourselves, just because pain can’t be seen. The fact we feel it makes it real enough!”. I was shocked to find that it received four retweets and fourteen likes. If you don’t do twitter, trust me, that is really high, considering, it was a reply tweet. This isn’t the only time in the last few months where I have spotted a high response to tweets of this nature, something I don’t remember even just 4 years ago when I first joined. Mention anything to do with being treated correctly by others, and the responses have risen across the board, and not just when it comes to the disabled. I can’t help but get the feeling that there has been a huge mood shift out there when it comes, to something as simple, as being a caring human being.

As an outsider, someone who has little contact with the real world, I find this distressing. If the world were filled with caring people, that tweet would have been ignored, or better still greeted with confusion. Clearly there are far too many, who have found themselves having to explain what is wrong with them and worse still, feeling as though they are under attack, simply because they are ill. When I wrote the post about my past a few weeks ago, several people came back with their own explanations as to what was behind it. The most common one was, to place the blame on the government and their policy of forcing the chronically ill, back into work, even when they aren’t fit enough to. I would have expected, that if that was the case, people would become more caring not less, as if I thought something was unjust, that would be my response. Yet the feeling seems to be, that people are actually agreeing with the government, and now see all sick people are scroungers and fakers.

It’s not only on Twitter and here in my blog that I have come across this change. Yesterday, I can across a blog, from a woman who is actually scared to leave her home, because of the verbal attacks she has suffered. I am at a loss as to how the world has changed this dramatically and I’m sorry, the government theory to me just doesn’t wash. There is hardly a week goes by, that we don’t see yet another case, of a person who has been fighting to get, not money to go down the pub with, but money to allow them to eat. Money, they are entitled to, who have long-standing medical conditions that they will never recover from. How can the millions who watch these heart-wrenching stories, not feel compassion? How do they watch, then go out and attack someone who is in a wheelchair, simply because they are ill? I’m sorry, but I don’t get it.

By chance, I caught part of a program that was on last week about discrimination. It was looking at racial discrimination, but something was said in it, that set me thinking. They were in a poor area of a large city, a woman who was receiving benefits, simply because she didn’t have a job, was verbally abusive towards an Asian man standing outside his shop. Afterwards, she realised she had been caught on camera and she tried to explain herself, the telling bit, were her last words, “I’ve got nothing against him, I’m, I’m just jealous.” Could we really have reached a point, where there are people out there, who are quite simply jealous of us? It’s a thought, that I find disturbing, in so many different ways.

This is now my ninth year of being housebound. The last time I was out and about amongst people who I didn’t work with must be, two or three years before that. As those who have been reading for a while know, I worked right up until 5 years ago. I was never in the position, or locations, where I might have mixed with people in those financial positions. I have been treated appallingly at different times in my life, by both those I knew, and by strangers, but I can only imagine, what it is like to be shouted at simply because I am disabled. I truly feel sorry for those who have gone through such a thing, but I also feel sorry for those who are carrying such abuse out. They may be shouting out that we are scroungers and so on, but I think it is their own position they are really shouting about. We the disabled, are highly visible and easy targets. It leaves me cold that society has slid into such a position.

Those of you reading today, hoping that I would give an update on my abdominal pain, well, your right, I have been avoiding the subject, but here’s an update. It’s a bit better, above my normal, but nowhere near as bad as the other evening. I have decided, though, that I am going to call my doctor when his surgery opens next week, if for no other reason than to get better pain control. Whatever happens, there is no way that I can keep on living with this pain, something has to change.


Please read my blog from 2 years ago today – 28/02/2014 – Disruptive sensations

My day is once more running behind but for once it isn’t my fault. I actually was up an hour early this morning as I woke unable to cough and really bad pain in my throat, sleep wasn’t going to be an option, so I just got up, with thought that I would be able to rattle through everything and have an early sleep this afternoon. Adam has taken a long weekend so he is still asleep but is actually going out…..





The bubble doesn’t exist

It amazes me just how many people out there, are still living in the cosy world of, what should be, actually is. Almost daily, I still hear from someone who thinks that being disabled, is a comfy life, where we are well taken care of, and that our lives are as simple as not being disabled is. I think the one that I hear the most, fits around what the word “housebound” really means. Oddly, the majority of people seem to think that all it is is not getting out as much as they would like. I have even had people who have actually said things like “I’m just like you and I totally understand, I haven’t been out since last week”, or the other classic, “I hate not being able to get out and about by myself.” Sometimes, it’s hard to not get angry with them because, there are no grades of housebound, you either are or your not, just as there are no degrees of having a chronic illness or being disabled. Worst though are the ones who aren’t ill at all, the people who as I said, live in a comfy world where everything and everyone is totally taken care of. To some extent, I can see where their thinking comes from as I actually remember thinking just the same thing years ago. I was like everyone else in the UK, I was wearing blinkers, put there by the “Welfare State”.

Back in the 80’s and 90’s there was very much an image put out there, that no one ever suffered any more. That no one even struggled, as they were scooped up by the state and cradled, against the worst their health could do. I think it was a picture that actually grew from it’s very creation when the NHS, and the care systems, propaganda involved showing happy people smiling in wheelchairs, or well protected within a caring society. I thought, that the second you became so ill and you couldn’t work, that the state swung into action, caring for and taking care of, absolutely everything you could possibly need. We had all swallowed the propaganda, hook, line and sinker. It was an image that held fast right on into this century and if you believe what is on TV, only started to crumble when austerity started to bite. Wrong, it crumbled far sooner than that, I, in fact, wonder, if it ever truly existed. From my own life, I can site issue, after issue, that proves that Welfare State, never worked at all right back into the 70’s, and the NHS had holes, as big as a battleship throughout.  I can site my two sons, Jeffery and Christopher as just two painful and perfect examples. No one swept in to make their lives the way they should have been, and no one swept into repair the pain and damage that their lack of care actually caused. If you need further proof that the so-called “Welfare State” doesn’t work, well, there’s me.

It just goes to show the power that propaganda actually has. Right through to today, there are people, who think, that the state would spend money on something, like getting me, outside of my house, for a day. I’ve been here 8 years, I’ve seen doctors, nurses, specialist and social workers, not once has anyone, batted an eyelid over the fact, that I can’t get out of my home. Not one has even been surprised at how long it is that I have been here, or that no one comes to see me any longer because, this is the normal pattern, this is how it really works. There is and never has been the money to do all the things that people seem to think, should happen without question. Those current day pictures you see of happy people in wheelchairs, or being cared for in the way we believe people should be, have nothing to do with the “State” and everything to do with charity, or insurance payouts. If you want carers, if you need helpers, you have to pay for them. Yes, there is, if you are very lucky, a fund that will help, but the boxes to tick, the hoops to jump through, are huge but almost impossible to hit. The way that I see it is that I am happy, I can still cope with the life that I have, I would rather those who can’t cope, get the care that they need to live a better life. The day for me will come when I’m not coping, then I’ll try to claim my slice of the pie, but for now, I’m sweet enough as I am.

In a bubble gum world, no I wouldn’t be stuck in my flat, I’d either be living elsewhere, or there would be a way out of here. In a bubble gum world, I would have an electric wheelchair that fits into the restraints of my home and takes away the pain caused by the manual one. In the ultimate bubble gum world, I wouldn’t be ill at all. This isn’t a bubble gum world, so what I am going to do about it? I could make myself miserable, spend my days being angry at the world and life, or I can get on with it with a smile on my face. I choose the later. Oddly, I am allowed a choice, despite the fact that I didn’t have a say in any of the rest of it. It is the same for all of us, life boxes us in, it doesn’t matter what’s inside those boxes, be it our health, our job or our fears, we all have boxes piled up around us that stop us doing what we want. Some of those boxes can be removed, others can’t, that’s just the way life is. I could make a list as long as my arm of things that would make my life better, but no matter what is on that list, at the top of it is one unmovable object, my health. As I have said over and over that the only way to live is to accept those immovable objects and live the rest of your life.

The Welfare State hasn’t got the answers for us that we expected. They can’t cure our conditions, house us or care for us in the way we expected. In many ways, I don’t know why we ever expected it to be any different. I’ve learned that the hard way, but I honestly think that it’s time our country woke up, took their blinkers off and saw all the people who have become lost in a system that doesn’t even exist. There are millions of people out there who need our help, they are not being cared for, no one is helping them, they aren’t cared for and loved as I am by my husband, Adam. They are alone facing every problem of chronic illness brings, but without the support, of people who love them. It is not just the elderly who are isolated and alone. Far too many are standing back, thinking it’s not our problem, well it is, it is a problem for every single one of us who has a heart. It is a problem for all of you, for one in every twenty-five, so yes, the odds are high, that one day, you too will find yourselves, living just like me, like Adam, or them, alone and in pain in more ways than one.


Please read my blog from 2 years ago today – 04/12/2013 – Is it me or you?

Yesterday post set me off thinking during the afternoon, one small part of it kept going round and round in my head, how long is it since or have I ever had a body that was well? It’s actually probably is an……

Carers from where?

This wasn’t the post I intended to write, but that is so often the way when you open your brain and dump its contents out in front of you. Much of it I nearly deleted, then thought again and decided to go with it. I’m not normally a political person, but I am a lover of history and two so often find themselves entwined. I guess the subject I had in mind will have to wait now until tomorrow.

There are things about our own bodies that we don’t discover until something odd makes us aware. We, I suppose rightly, wonder along through life in the belief that each side of our bodies is a perfect mirror image of the other. I knew thanks to TV that it wasn’t, but that belief still held on as it’s somehow logical that they are. For months I have been fighting with ear plugs, if you don’t get them correctly located in your ear, they simply don’t work. Nightly, I fight with my left ear, trying over and over to get the angle correct. My right ear, no problems, not once has it not slid straight in and stayed exactly where it should. Last night I got so frustrated with it that I decided to go totally against my own mantra about not sticking things that shouldn’t be there in your ears. I stuck my little finger tentatively into each ear and was shocked. Right ear, perfectly smooth and almost straight passage into my head. Left ear, a stupid cavern, that half way in has a passage that shoots upwards. I really don’t stand a chance of getting it right as it’s an almost impossible construction. It also explains why any time that a doctor has been looking at my ears, they have had to contort themselves into an almost upside down position to see anything on that side.

The more I find out about my body and the longer that I live in it, joking aside, I am completely sure there is something unknown that has cause a weakness in my left side before I was even born. Anything that goes wrong always goes wrong on the left. The worst pain, be it nerve or spasm based is always on my left side, along with the poorest dexterity and the most obvious twitches and tremors. The worst weakness and, of course, the only limb that has died and come back, again the left. Even the worst of the pain from my recent bowel issues is, yes, on the left. In fact, the only three bones I have ever broken are surprise, surprise, on the left side too. It just feels as though it is all more than a coincidence, and no wonder that I have for years been convinced that the left side of my body was created for no other reason than to keep finding new way to put me through hell.

Time seems to be rushing again. The phone just rang and it was the podiatrist, wanting to check that it was OK to come and seem me today. That means it four months since she was last here! It seems impossible that it is so long ago, especially as I have only asked Adam once to tidy my nails since she was last here. It’s another one of those things that you never really think about it. Not once when I was building a picture of my future post diagnosis did I ever think that I would need someone, anyone, especially not a professional to cut my toenails. I was born with deformed toes, it’s something that runs in the female side of my mother’s family. It means that I actually walk on some of my nails as some of my toes are totally turned in on themselves. Others they are twisted and nails grow into the sides of either their own toe or in the case of one, the toe beside it. I had learned over the years just how to cut them, but it required me to be able to bring my foot high onto my thigh, almost up to my groin to be able to see some of them. Clearly, I can’t manage that type of gymnastics any longer and my eyesight doesn’t stand a chance of seeing them even if I could. Adam just couldn’t get the hang of the odd process it takes to cut them. He was so scared of either cutting me or causing me pain, that it took ages and caused more problems than he usually fixed. I probably didn’t always help either, as I actually wanted to keep all of them despite their issues. I had to keep pointing out that the free side of the clippers were in danger of cutting into the neighboring toe. Once the podiatrist saw them, she said that Adam wasn’t to even try again, other than to take a nail file to them from time to time to keep them neater between visits.

It is all these small things that you never think about but are actually important to our well-being, that never enter our minds when looking at our future. When we are fit and healthy, we do so much every day, that 99% of I couldn’t even start doing any longer by myself. It doesn’t matter how much or how little of our lives have been spent in the company of either the ill or the elderly, we never see ourselves there. None of us needs to have a chronic illness to find ourselves eventually in the need of others to care for us. The day will come when we all need someone to cut our toenails, even those with perfect feet. Even our fingernails will be beyond us at some point. I used to think that I was going to be OK, that I was lucky, I lived in the UK. Even when something came into my head that I might need help with, I always found myself dismissing all worries, my care was guaranteed, I had nothing to worry about. It is a tiny example as the podiatrist is the only outside care I have at the minute, but it is an indication of the way things are changing.

She started coming to the house at the end of 2013 I think, on her first visit she told me she would be here ever three months and she was true to her word. It was the visit before last that she said due to budget cuts, she would only be here every four months from then on. It may not sound that much of a big thing, but just like diabetics, my feet are in danger and are a danger to me. I don’t feel them correctly, or at all at times. The possibility of infection from an ingrowing toenail is huge. That extra month is all it takes, I have been aware in the last few days that one of them isn’t happy. I say one of them as it often proves not to be the one I think, as screwed up nerves cause all sort of problems. They are issues that all podiatrist will know about and will have fought their corner over when it came to the changes. With every department now under pressure, I am sure that toenails are low on the list of conditions that need constant attention. As budgets are nibbled away at and more and more pressure being placed on the NHS, the future doesn’t look so secure. I do worry now just what the care I will receive at home will be like in 2, 3, or 4 years time or if there will be any.

When you grow up with the belief that all these things are taken care of, you never consider the possibility of private care unless you have a reason for it. I have always fully understood why those who have high-pressure jobs with high incomes have seen the need to have private health insurance. For them being able to pick and choose when they get treated makes sense. For the majority of us, it was a luxury too far, but now I am beginning to wonder. I don’t even know if the type of insurance product I am think of even exists, but if it doesn’t, it should. I honestly see the need for all of us to make not just provision for our retirement, but for the provision of the basic everyday care we can expect to need as we age or through chronic illness. It is clear to me that to expect the NHS & our local councils to keep providing it on a shoe string is madness. Unfortunately, it is those of us already here who will suffer, it’s too late for us, but not for those out there working right now. I also don’t think it is fair to blame the Government either.

We have all missed one major factor when it comes to the care of the elderly, fashion. Post-war, when the NHS and the care system was set up, women didn’t go out to work, they cared firstly for their children, then for aging relatives. It was the fashion. The number of none working women was huge, more than enough to be the unpaid army of carers. These days everyone that can, have to work and no one has the time, or the ability to be in two places at once. Suddenly all these elderly relatives are now in the care of councils and the NHS. Carers are dispatched daily to do all the basic tasks from dispensing medications, feeding. washing and dressing, then returning to repeat it all at night. It is a huge cost that wasn’t ever considered and has grown and grown since the sixties. Suddenly, the baby boomer generations, which I am one of, are finding themselves in need of care from a system that is stretched beyond belief. Add in the financial situation of the world and it can only get worse. I am lucky, I have someone who maybe can’t do everything I will even need, but can do a lot of it, but as I said, I am lucky. If you didn’t agree with my suggestion a few days ago that there was a need to educate our children about chronic illness, well maybe this might make you think again. You can’t plan for what you don’t know about.

Please read my blog from 2 year ago – 10/08/2013 – Permission to do what I want

The start of an other day and once again the best alarm clock in the world woke me up, my bladder. This morning was the third in a row that I woke just after 7am, so not terribly early but I had……

It’s good to struggle

My body is still letting me down big style, just as it did yesterday even though I stuck totally to my own diet when I normally ate it, but the pain levels kept peaking and my tiredness was clear to me if not anyone else, although I don’t think my acting skills were that good. I had managed to have over an hours sleep before Teressa and John arrived, but as is often the case it wasn’t really enough. Ever since Thursday, my diaphragm hasn’t settled at all, even when I woke up this morning the first thing I noticed was it was tight and uncomfortable, normally I would wake at least for the first half hour or so, without it feeling as though it is trying to cut me in half. Despite all the work that was done on the settee and the fact I know it is a million times better than it was before they resprung it, added new seat cushions and is now as good as any new settee, it is the worst thing I could possibly sit on for long periods of time. It didn’t matter how I wedged myself into the corner, or tried to lean rather than sit hunched forward, the best place to breath with ease, as the day went on I became more and more uncomfortable. I am actually beginning to wonder if the disaster of Thursdays Pizza had actually a large portion of settee mixed in there, that I just didn’t see at the time. I am still in no doubt that I ate too much and that was the cause of my pain in my stomach that followed on for days, but I now have a small doubt that it was totally responsible for what happened to my diaphragm and rib cage. I know it is impossible when you have conditions like PRMS and Fibro, to ever put the blame for pain on anything that we do, but it does quite often play a role, the hard bit is working it all out.

I think from my experience and those of others, once we have that diagnosis, that medical reason for what we feel, we are inclined to sit back and say there is nothing we can do, we just have to live with it, sorry but that is so wrong. There will always be things that we can’t change, but with them all being so personal it is often hard to give anyone advice or help with their personal conditions. I think it is one of the reasons why I shied away from all those forums that are out there apparently set up to help each other, the problem I found with all of them was always the same, one dominant voice that shouted louder than everyone else and if they didn’t personally make the discovery, or it is something that didn’t like or hadn’t worked for them, it was instantly tainted for everyone. None of us are experts on anything other than ourselves, but I do strongly believe that we should share our knowledge as you never know, it might help someone else. For me, the only rule I have ever had is it can’t cost anything. It’s OK, I am not going to go over all that again, as I honestly think I have said everything before. For me it has always been small adjustments persisted with that have turned out to be the things that make the most difference to my health. Unsurprisingly, food, sleep and relaxation have been the biggest when it comes to how I feel, followed by those things that make life easier or safer, like a new bathroom with a walk-in shower and seat. Dependant on our physical abilities and problems, we all will find different gadgets that help us in our daily life, along with different aids. My personal experiences has shown me that it is all too often the simplest and cheapest that work the best, like a pair of old fashioned nutcrackers for opening soda bottles where the lid it too tight and too small for my hands to cope with. The best gadget there is, despite being one that I have complained about continually, is our own brains. We alone have the ability to work out for ourselves what helps, what doesn’t and what is physically comfortable or not.

I think the worst and most hated gift I was ever given after I was diagnosed was well meant and given with love, but found it’s way out of the house and in the outside bin within minutes of my unwrapping it. Adams gran had bought me for Christmas a trolley so that I could use it to move plates, cups and glasses from the kitchen to the living room with ease and safety. I still to this day just writing that, can feel the hate and loathing I had for that object, irrational to many I am sure, but it is the perfect example of why no one other than the person who is ill, should ever buy something “to help” someone who has a chronic illness, without talking through the whole thing with them first. To me, it was this symbol of how she now saw me, as crippled and unable to cope. It put me into the pigeon hole that said I was a person to be pitied and required, despite the fact of just being in my early 40’s at the time, to be treated as a disabled ancient person. I know that was all in my mind, but our minds are us and far more easily hurt than our bodies are, especially when we have already had the final control over our lives taken away by our health. No matter how helpful other think they are being, we need to learn for ourselves what we need, what works and what doesn’t, not have it imposed on our lives. I try hard not to just give into anything, any new thing that appears has to be assessed over a period of time, before I know if there is anything I can do to improve it or if I need to start looking for something outside of myself. Pain is a symptom, not a sign that we need help, but that we need to assess everything we are doing that might be the cause and to see if we can change it or totally remove it ourselves. No matter how bad our memories, we all have the ability to analyse what is happening to us, if it has anything to do with our known conditions or if there is something else going on and outside help is needed. It is one of the things about modern life that I hate, disabled or not, this feeling that throwing money at it, is going to find the answer. Having lived through the 70’s and 80’s when gadgets seemed to be king and were bought by their thousands, just to land up at the back of a cupboard totally unused, it taught me that the answer is normally to hand and gadgets are usually the answer to a question no one has ever asked.

There is one other danger about being ill that I think many miss and many fall into, if you have something to hand that makes life easy, as humans are lazy and will use it. That may not sound as though it is a bad thing, but if it means that we stop using the little ability we have and simply give in to grab rails or two handled mugs, we lose those abilities faster than we should and our downwards path is accelerated. I can’t do that much, but I refuse to give in and stop doing what little I can. As I said to Teressa the other day, I don’t claim the higher level of the care component of my disabled living allowance, I have little doubt that I would be awarded it, but I actually can still manage to wash myself, brush my hair and so on, if I didn’t have Adam here, I might not. Adam doesn’t do anything other than tell me to do these things, as I totally forget, regardless of any gadget, reminder or alarm, I need that human there to remind me over and over and push me into to doing things, but once past that point, I manage. If I lived alone, well I would need to pay someone to come here and make sure I am doing what has to be done for my well-being, including in some phases eating. I can walk carrying a glass, or a plate, I don’t need a trolley, but if I had one, I might just use it some days and I think those occasions might just increase, slowly eating away a one more skill, faster than I have to lose it. If we don’t use our bodies to their full, we will lose those abilities, it is better to struggle than to not be able to do it at all.

I am sure the time will come when I will need more and more items that right now would make me feel bad about myself, I work on being enabled not disabled. I don’t have anything sitting here waiting for the day that will happen, well what is the point, these days we can buy anything online we need and have it here within 48 hrs. When the day comes I can’t manage that glass, well then I not anyone else, will find the answer to exactly what my problem is. One tiny adaptation might keep that trolley or two handled mug away for another few months, but they still aren’t here giving me an excuse to just give in. I know it might be hard for those who love us to watch us struggle, but I believe that letting us struggle is far more loving than running out and buying something that will take not just the struggle, but our ability with them and in some cases, our dignity as well.

Read my blog from 2 years ago today – 6/04/13 – So where next >

Thank you for all your comments following yesterday’s post, both here and on twitter. I spent the rest of yesterday as a kind of blank zombie, even managing to walk like one most of the time as well. My afternoon nap really hasn’t been making much of an impact recently, although I will sleep deeply for two hours, I wake with no real feeling of change, which I guess is what…….

Even bad days have purpose

Last night didn’t go the way I planned at all, well to be far it went just as I expected up until bedtime, then it went off the rails. I know it is just sods law, when thing go bad at bed time but I do so often feel like my body is on sort of vendetta. I had gone through my normal night time ritual of lying down and waiting for my chest muscles to clamp in on me, but I was at first pleasantly surprised when it was just the right side of my chest that feel under the imaginary weight of my invisible lead waistcoat, my left side other than my diaphragm was fine, but I still set out on my usual night time routine of relaxing everything it was then that I felt something odd, really odd, not painful just not right. It was as though when I put on the night time waistcoat, I had managed to twist it just a bit and the collar line wasn’t sitting straight, I could feel pressure on the front of my neck just along the baseline on the right side. It was gentle, not painful at all, just a steady pressure enough for me to be aware of it, but what happened was my brain flew into overdrive, sorting through possibilities and horror stories of what might happen, next or far in the future. I used to think that having an active and vivid imagination was a blessing, but since I have been seriously ill, well I just wish it would shut up as the places it goes, are mainly places that I hope I never go. My first thoughts of a simple drift into sleep quickly after lying down were gone, it was now one of those rare nights where my brain had all the controls and it wasn’t going to give them back.

I woke up at just after 4 am, it took me a few seconds to work out that I was awake and what had woken me, the pain in my heel is back. It’s been months since I last felt it but I was warned it would come and go and it has clearly come again. I know from experience that I was going to have to get up, take my blue booster pill and wait for it to work, so I headed for the kitchen to have a cigarette, as I opened the bedroom door I saw that the light was on in the kitchen. Adam had woken ahead of me and was of all things emptying the dishwasher as he forgot to do it last night. I’m not sure which of us was the most surprised to find the other in the kitchen in the middle of the night, but there we were. I am guessing that I must have heard him moving about and it was that that woke me not my heel. To be honest it wasn’t producing anything like the pain it had before, in a funny way I was glad to have been disturbed before it reached its peak. Back in bed I once again couldn’t find sleep, I was right back to the start of the night with my mind running over and over things that will probably never ever happen, but at 4:30 in the morning, logic is in small supply. I know I did find sleep but I was again awake just a couple of hours later needing to go to the loo. Despite the fact I should still have been very much under the influence of both my normal meds and the booster, I had the type of pain in my lower stomach right where my appendices is, that had me wondering if an ambulance might be needed as I couldn’t truly straighten up. I have had it off and on my entire adult life, so I knew that it would pass, I think I just have a loop of intestine there that likes to complain at times and it wasn’t happy, probably because I took my laxatives last night, so far they still haven’t worked. It was a totally no-win night and right now I feel like death warmed up. Sleep, next to pain control is the most important thing in the world to me and not getting my clear 11 hours the problems just start to pile up.

As always once my heel pain has been woken it stays around for quite a while, so yes it is with me right now, along with an exhausted body, a mind that is actually asleep, this is all coming out of the auto-pilot department and raised pain everywhere else, so no, I am not a happy bunny just now. We can be as fit a fiddle but have a bad nights sleep and it slaps us all right down, so imagine what it can do to a body that was down before the slap even got anywhere close. All too often it is the simplest everyday things that have the most dramatic effect on me, not the out of the ordinary or surprising things. A simple need for an extra glass of coke, or taking a shower can all too often be the one thing too much for me on that day. I have often thought about locking my routine down totally so that every day is identical and set out so that I use the same amount of energy, making life into a system that can’t knock me over the edge. But life isn’t like that, bodies don’t need the same things every day or even at the same time every day, days like today would never work out as right now I am sitting here with an empty glass and also without the energy to make it to the kitchen and back. It is also days like today that remind me why I don’t have a job, no one would put up with me in this state and just because I didn’t sleep well.

I suppose that is where today does have a positive use, as it really reminds me just how poor my health is. Trust me it is easy to forget, to find yourself wondering if you are really as ill as everyone around you keeps tell you, you are. Especially when you are the person who has been telling everyone since you were 21 that something is wrong and they have been telling you your fine. I honestly do often think that I am a fraud, as I manage well enough, I have always somehow managed, so why I am not doing what I should be, living my life out there and working, but those thoughts are caused by my ability to manage my health. I don’t know what I would be like if I didn’t manage things as tightly as I do, but I know without a doubt that I wouldn’t have any quality of life. I know that the majority of people think I have no quality of life now, how can I, I am housebound, I never see anyone other than my husband, with occasional visits from my daughter and I am almost constantly in pain. How can I say I have a good quality of life? Easy, I have managed to find happiness where I never thought anyone could. It may sound a little mad but I did sort of hint at it the other day, I have guilt about receiving money from the state. I know that is a totally taught feeling, one I was taught as a child, you don’t accept handouts, you work until you die and even then you leave money for others. No one should ever have to support you long term, especially not the state, that is below low, it is the lowest state anyone can ever be in, yes my family were stuck up, well off, snobs. But that is where I was brought up and I can’t change what I was taught to feel. Every day that is a good one, has that touch of guilt to it, every time I am not feeling like I do at this second, I feel that guilt, but today, well today I have a true need for it, even a right to it if you like, as today I am on the verge of not even being able to look after myself, as even that empty glass is staying empty.


Please read my blog from 2 years ago today – 15/10/12 – Visiting Dimensions

I am glad to say that I am a little better than yesterday, not great but better. I did give in a little early last night and disappeared under the duvet, where I drifted quite quickly into sleep, which surprised me as I hadn’t managed to even have my normal quantity of Gin, the proof I felt really……