Tag Archives: Exhaustion

Brain buster

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They say when you watch something, it never does what you’re looking for. Well, mine eventually did. I’ve been staring at the phone on my desk, willing it to ring, for the incontinence nurse to call me and let my know what her boss said. When she did, you would have thought that she was reading out the results of some sort of competition, giving me all the points that they took into consideration, before just telling me what I wanted to know. They have looked at all the scan results and my history and present problems, especially those being caused by my intestine and bowels and for now, they don’t think that I need to have any form of a permanent catheter. What they want me to do is to be careful to be sure that my bladder is as empty as possible whenever I go to the loo. This means that I have to double void each time. For those who don’t know what that means, I have to stand up and move away from the toilet for a minute or so, then return and try again. I also have to use a method I have already been using for years, to rock gently side to side and back and forward, which as I knew already, makes the urine move out of it’s hiding spots and out of me. They believe that if I continue to do this, I should be alright until the problem with my bowels is sorted, when hopefully, the problems should lessen. She once more added that if I do find again that I can’t empty my bladder, then I must call for medical intervention immediately.

I didn’t tell her, but when I spoke to the district nurse on Friday, I had talked through with her, the reality of implementing her final point. She was just as I dumbfounded by the idea of calling 999, within minutes of finding I couldn’t empty my bladder. We talked it over and quite rightly she agreed with me that that was just not a viable plan. I can with ease sleep for 13 hours without once getting up to go to the loo. Therefore, my bladder, nor I, am in any type of danger for that length of time. That is, of course, as long as I am not in severe pain. As she said, I’m not stupid, I will know in myself if I need help or not, but maybe that guideline of 13 hours, should be my max. I am also not stupid enough to leave it any longer than that, as I am well aware that urine can turn toxic to my body with ease. Which is a problem for anyone, but for someone like me with a compromised immune system, something I need to be careful about constantly, hence the double voiding. Should I feel at all that I need help, then I should call NHS 24 or my doctor for help. There should be no need for me to be dialing 999 unless I know something is horribly wrong. Both NHS 24 and my doctor would be able to send out a district nurse armed with a catheter to my assistance. After that, well then we can talk it all through again and possibly include a detailed chat with a urology consultant.

I have come to the conclusion that the continence nurse who has been coming to see me, just likes to scare people. There was no need what so ever for her to have worried me the way that she did. She could quite easily have left here without saying a word about permanent catheters at all. Returned to her place of work and talked it through with her boss, then telling me, exactly what she did, when she phoned me. If she had done that, then I wouldn’t have landed up feeling as I did and I would have had a much better end to my week. I have learned one lesson from all of this, should I see her again, I will not let myself be wound up until she has checked her “thoughts” with someone else first.

I have to admit that I have been lucky and I haven’t come across many like her. On the whole, the medical profession has always told me their thoughts, but done so in a way, that it felt like they were imparting information, not telling me that there was no other option when there was. Just like the consultant who I saw about my bowels, he laid out all the possibilities, what they could and they couldn’t do and what they thought needed to be explored first, hence the enemas. Even though I left there knowing that this was the last possibility, but at the end of the day, if I couldn’t cope with it, the final option was down to me, I could request a stoma. When I left there, I felt a little shell-shocked, but I didn’t feel as though I had lost control. In fact, it was the total opposite, and it left me with a new problem, when and how to make that decision, and I still don’t know how to do that.

It took me many years to realise that the medical profession doesn’t have all the answers. What they have are possibilities. In an emergency, they make the decisions for us, but when it comes to those things that aren’t going to kill you in the next ten minutes, the choice suddenly becomes ours. No one can do anything to you without your permission, that’s clear as you always have to sign those disclaimers, but there are times when you want them to tell you, not suggest to you. About three years after I was diagnosed, my health was so bad that my Neuro offered me chemo. It was all explained to me, how it would affect me and most importantly, what they expected it to do for me. What they were offering me, was a way of turning back time, they could say how well it would work, or if the results would be long term, or just short, but it was the only option there was. To me, that was an easy choice. Without it, I was heading downhill so rapidly that I would have been a vegetable long ago. It didn’t feel like a choice, it was a no-brainer. Everyone wants to live, to be able to function as a person. I wasn’t going to say no, if I had, I would have hoped that they would have sectioned me and done it anyway. Where I am now, is totally different.

If the enemas work properly, they will not only move the faeces out of my body, but they will remove the pressure and pain that I live with daily. The short spell I had last month when it appeared it was working, I found a new appetite for food, I could breathe with far more ease and both the pain and pressure were gone, even my mood improved. It was wonderful. Now, we’re back at the start, it is as though none of it ever changed. If I have the stoma, well it removes the problem of getting rid of the faeces, and hopefully the pressure, but there is no guarantee it will change the pain in any way. The pain is caused by my nerves and removing them and my intestine, might not change the pain at all. I will also spend the rest of my life with a bag attached filled with poo. How do you choose?

This week, we’re stepping the enemas up to three times a week, if that doesn’t do it, I could have them every second day. How many weeks or months is a fair trial? What if they never give me the result that I want? Am I asking and expecting too much? When do I say enough and if I do, will I be any better off? This isn’t a no-brainer, this is a brain destroyer.

 

Please read my blog from 2 years ago today – 08/08/2014 – The small things

Once again I crawled off to bed at 8:30 and slept all the way through, which of course leaves me with a problem as to what my new drug routine is doing, as every night I have taken my drugs later, I have gone to bed early. Now that doesn’t make any sense to me at all, surely not taking my drugs should make me want to go to bed later not sooner, as I have shifted my routine and once……

Dumbstruck

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The world and it’s dog, think of MS as a condition that affects muscles, both in pain but mainly weakness. They see us as future cripples, the people sat in wheelchairs, rarely seen without a carer and simply waiting for the day to pass. After all what value are we to the world, the cripples who can no longer work. Some look at us with pity, but most don’t look at us at all. We are invisible, long before we disappear completely by becoming housebound. I can say that, because if someone had asked me when I was 20, that is probably roughly what I would have said. Just as I saw spina bifida as people wearing calipers until my son was born with it and then died 12 days later. None of us really know what any chronic condition or disability is like until it somehow touches us. Even now, I couldn’t tell you if my Jeffery felt pain or felt anything at all, I just had to take the word of the doctors, that he was at peace in his misshaped body.

MS isn’t just weak muscles and pain, it is so much more. All you need to do is read my blog from its start to today, and you will see that there isn’t a single part of me that it doesn’t affect. Although, I do have to add that what you would read is my version of PRMS, one of five forms that MS took until recently, now there are only four. I discovered yesterday while reading on line that PRMS no longer exists, we have been absorbed into PPMS, although how I’m not sure. I’ve read the description often, and I quite honestly don’t fit. Yet, who am I to argue with the great and the good of the medical world, I am, after all, only the person who lives with it. In fact, I’ve lived with it now for over 30 years, but if you were diagnosed with RRMS, SPMS, PPMS or even benign MS tomorrow, I couldn’t tell you what lies ahead, because I haven’t lived your life. It’s not just MS that this is true of, whatever the condition, all of us would find our own quirks, symptoms, and difficulties, that’s just life though, as none of us live the same one in the same body.

At times people have asked me what is the worst thing about the conditions that I have. Yes, it is plural, I like the majority of people with a chronic condition have a collection of them. Why they travel in gangs, I can’t tell you the medical reasons, but I’d make a guess that once our bodies are weak, we are susceptible to other developing. As for the worst part of it all, well, it depends on what day and at what time you ask me. In the mornings, I am most likely to say that it’s the pain and by the evening the fatigue, catch me in the middle of a brain fog, and I’d most likely look at you stupidly and say very little of any sense. Chronic illness is a minefield filled with monsters, just waiting to take over from each other when the others have got fed up of playing with you. But if you have one, you already know this.

Today, though, my physical monsters are just treading water, the pain levels are set at normal and my fatigue just slightly higher, today, it’s the monster in my brain that is having the most fun. I have started and not finished a dozen things already, and my poor browser, has been straining under the number of web pages that I have opened, most I have little idea why. Concentration is little more than a distant memory. I have even stopped this post more times than you would believe, returning and having to read my earlier entries, and then sitting here trying to work out where I thought it was going. Even now, I’m not sure. Mind you, that’s nothing that unusual. For some reason, today seemed like the perfect day to change broadband suppliers. I had been thinking about it for a while, but out of the blue, I found myself actually doing it. So hopefully, as of the middle of next month, I will be flying on high-speed fiber and miles from the company who couldn’t even answer their phone without getting me angry and leaving me in tears. Yes, I will double check all that I’ve done when my own brain has returned.

I know that I am being rather flippant today, that is quite often the result of living in a muddle, as if you don’t take it on the light side, you’d drive yourself mad, if, I’m not already. Seriously, though, unless you are living with a brain that has been affected by something like MS, you don’t have a clue just how frustrating and depressing the whole thing is. I know that I am still managing to type out word after word and that I will appear to many as not having the slightest problem, but take my word for it, my brain is a mess. All of those wonderful tricks or the gizmo’s that are supposed to aid me in my everyday life, to me, are totally useless. It doesn’t matter what it is, my brain finds a way of turning it into an ignorable annoyance, something that doesn’t apply to me, or at least not at the moment it is trying desperately to put me back on track. It doesn’t matter if it’s a post-it note, a list, an alarm or even something huge in the middle of my computer screen, I can ignore it and totally forget ever even seeing it. Life with my brain is now one long smooth line, uninterrupted by all those annoying little things, like eating, washing or taking my meds. Well, it would be, if I hadn’t long ago started using Adams brain to fill in what I missed and of course my carers now keep me straight as well. Yet, I’m lucid and intelligent, well I think I was once, and might be occasionally now, as long as I don’t engage my brain, it will trip me up in seconds, if I let it and even when I don’t.

There is nothing in my life that annoys me more than those hoards of people who have happily brushed aside everything I have said, then try to tell me of this amazing way they know, of getting things done and never forgetting again. I learned long ago that I wasn’t only invisible, I was also mute as what I have said, was clearly unheard. Until you have spent an entire day, with my brain, in control of your life, you won’t understand, any more than you can understand the effects that pain has me, outside of the pain itself. When your brain is being eaten alive by lesions, nothing is as simple as it was just a week ago, far less a year ago. Unlike my body that now sits in a wheelchair, there is nothing visible that supports my brain. I can’t show it to you, all I can do is tell you, but then, of course, I forgot, I’m mute.

Please read my blog from 2 years ago today – 01/08/2014 – A spark of truth

I am waiting for the phone to ring, Teressa and John are due to come and see us today the first time we have seen each other since Christmas. To be far I doubt I will get a call before 12, after all, they are on holiday and as she is staying with her brother, I know last night will have included more alcohol than is …..

Independence reborn

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We have a working shower!! I know that may not sound like much to you, but after not having a shower for the past 10 days, it means the world to me, at this second. I know that I only shower twice a week normally, but I really missed sitting there naked and letting the water run over me. One of my carers are due here this afternoon and she can’t arrive soon enough for me. It turned out that it was a fault in the shower, not poor workmanship on behalf of Adams pal who fitted it for us. He was really not happy about going to him and asked for what we had been warned would be £86 if it were his fault. In some ways, it does make me think twice about using any friend, even when qualified, to do work for us, if it goes wrong, I think Adam would just bite the bullet, rather than ask for the money back.

I have to say that the one thing I am looking forward to more than anything, is washing my hair. I have been using a dry shampoo all last week, but although my hair doesn’t look too bad, I just hate the way that it feels. I don’t even know how to describe it, despite repeatedly brushing it, it still feels sort of thick and full of product. Mind you, I don’t normally put anything in my hair, other than dye, shampoo, and conditioner, so I’m not used to the feel of anything else, other than clean hair. Which reminds me, I really do have to dye my hair, the number of grays, are starting to get beyond a joke. Vanity isn’t one of the things that my health hasn’t removed. There are still odd things like hair, skin, and teeth, that bother me as much as they ever did. Old age really is a pain all of its own.

This is the last time that I will see the carers who have been taking care of me for the past six weeks. My assessment period officially ends today, and Karen, the lady who organises it all will be here to see Adam and me on Wednesday morning, to discuss where we go from here. I’m really sad to see the girl who is here today go, as she is a total sweetie, but she is one of the qualified assessors and it is more an everyday carer that I will have in the future. Which of course, means that I go right back to the beginning, and I will be teaching a new pair just what I need and exactly how to do it. I really don’t like the idea as I have just become comfortable with the pair that I have. For me, it’s hard work making those connections, especially as before they arrived, I had very much been on my own. They have changed my life dramatically over a very short period of time, which I am glad of, but starting again is daunting.

I know that I have actually adapted far better than I thought I would. I honestly thought that I was going to find it far harder, as I was so used to my splendid isolation, maybe too used to it. So saying I’m going to miss one of them, is a total flip in myself. I no longer want to throw them out of the house and actually look forward to seeing them, and not just because I get a shower. It is, though, one of the beauties of being human, we are far more adaptable than we think we are. These last few weeks, not just with the carers, but including the district nurses, have oddly made me feel as though I am actually back in control of my life. I thought that I was losing my independence, but I haven’t, oddly they have given it back to me.

I know that is the last thing I and probably you expected to hear. How can people coming into your home, to wash you, or give you enema’s, possibly do anything other than take your independence away from you? Well, it can. I used to spend hours trying to do these things alone, trying to work out ways to wash, ways to do it safely and puzzling over what to do for my bowels. My life was tied up in those two small things. They were relentless questions, a dilemma that dominated everything else. Now, they are small interruptions and once taken care of, I have my freedom to do the thing I want, on my own, without having to even think about them. They are now their problems. I let them work on them, think about them and work out how to get past the problems without a second thought from me. I can go about my life, knowing I’m clean, protected and that I have medical assistance, who will come to my home if I need them. That to me is a new freedom, a new independence, that I haven’t had for years.

There is one thing that I have learned from this whole experience, you have to plan it to suit you. I have two different groups of people coming here twice a week. Originally, the thinking was to have the Nurses here three times a week, but that was too often for me, not just medically, but mentally. After the fortnight of trying to work the two together, I rapidly discovered that I don’t have the energy to manage both in one day. Even with the Nurse here in the morning and carer in the afternoon, it was too much for me. Equally, having someone here five out of seven days, was too much. I felt as though my life was dominated by it and I had no space in it for me, or to just spend with Adam. I hit on the idea of the Nurse visiting on Monday and Thursday, as I already had the carers visiting on Wednesday and Saturday. This pattern allows for life to go on and for me to recover before the next round. It is now three full weeks that we have been working this way and it works. I still have my life, the one I’ve been living for the past 7 years, I have lost the problems that were driving me mad and slowly, I have begun to feel good about it all. If their presence in your life, isn’t working for you, it is never going to make you feel you’re still independent, just trapped.

Clearly, I am finding this whole business completely the opposite of what I expected and the more it is becoming part of my life, the happier I am with the whole thing. If it were really needed, I would now be happy to accept any other help. How I would fit it in, right now I’m not sure, but I know without a single thought, I wouldn’t be frightened by it, as I was just two months ago. If you don’t believe me, just go back six weeks and read your way forward, the change you will see is dramatic. So don’t be scared if you too need assistance to live, OK I know you will, we all are, but try to remember how I have found it and give it a go. It isn’t the end of the world, it’s just a bit of change to it and when it works well, it gives you a freedom you won’t expect.

 

Please read my blog from 2 years ago today – 31/072014 – Staying sain

Last night we were just watching TV and talking as we always do and at this second I don’t remember how we got onto the subject of my blog, but we did. Adam said something so true that for once he looked as though he was about to burst into tears. I’ve never understood why painful things when said, make people do that, but I owned up to the other day, words appear and the truth of them…..

Banished demons

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I haven’t given an update recently on how things are going with my new army of carers. Much to my surprise, I have to admit that it’s not working out badly. It’s six weeks now that I have had my army of ladies here to wash me, and I have to admit, that I am really enjoying being clean. You don’t realise until someone else helps you, just how much of your body hasn’t had a really good scrub for far too long. It’s all very well letting the water pass over you, but the sensation of a someone giving your back a real good scrub can be totally sublime. I am finding it far easier to be around others as the days have clocked up. I have to admit that the first couple of days, there was a huge amount of bravado. I was flinging my clothes off and acting as though it was perfectly normal to find myself totally naked in front of a stranger. The truth was that I was far from comfortable and quite honestly, I wanted them to just get out of my home. This week, with the temperatures soaring, has meant that I was actually looking forward to the bell ringing and the promise of getting rid of that feeling, that my clothes were stuck to me. Which even I admit is quite a turnaround.

One of the problems of being housebound is that you slowly forget how to act around people. You become set in your ways and a having to allow others to intrude into your world is hard. There is very much a feeling that they are here to upset you, not help you. I guess that is why, for the first six weeks they send in the rehab carers. They normally go out to help those who have just come out of the hospital after a long stay, settle back into normal life. They spend their time trying to make them care for themselves, with all the daily things that people have to do. That can go from cooking to bathing and onwards, just to be sure that they can manage on their own. I too had the rehab carers and I have to admit that I needed them. They coaxed me out of that shell I had built around myself, as I taught them, just what help I needed. On both sides, it is clear that I can’t manage on my own, they aren’t going to be able to teach me any tricks so I could shower alone, as there aren’t any, but they have taught me how to be a human again, and to be not so precious, about what is mine and how I do things. I thought that having strangers around me, was going to be the biggest hurdle, now, well I don’t really mind which one turns up so much, as how much I need to teach them. I still find having to tell people the same thing as I told the one before, really irritating, but I’m learning not to bite.

I have to admit that I found I went through pretty much the same with the district nurses. They have only been here for about three weeks, and yes, they are here for a very different reason, more to help my body, than to help me. I doubt that I will even find it easy to lie down on my bed naked and let them pump in an enema, it’s not exactly the most elegant process and never will be. The fact that they don’t just do the work and leave me lying there, does make it far more bearable. I’m not sure why, but them taking me to the toilet before they go, makes it feel more normal, but it does, as does the fact that they all take their time to chat with me, from when they arrive, until they go. As for the actual results, well that’s not going so well. I did have high hopes at first as each one worked, sometimes not in the way I expected, but my bowels being emptied was always achieved. That was until last week, the last two of them have failed totally. They are due here again tomorrow, which I have to say, I’m quite pleased about.

Just having people here has really changed the way that I feel, and that I act. Simple things like making sure that I am dressed better than I was a few weeks ago, that I have my day organised around their being here, rather than around what I want to do. It changes the way that you think and the way that you feel in ways I wouldn’t have expected. There have been so many changes, most subtle and most that I doubt even Adam has noticed, but I do feel really different about my daily life. One of the things that I have noticed is that I am now eating more. Food has suddenly become something I am actually interested in again. To the point, that last week, Adam and I actually had a meal together, something that we haven’t done for years, others than on special occasions. It doesn’t take a genius to work that one out. With my body no longer blocked up all the time, I actually have somewhere I can put food, rather than it just causing me more and more pain with every mouthful. I hadn’t really made the connection at first, then this weekend, I suddenly found that the food I was preparing, I wasn’t so keen again to eat. Then this morning, I woke again to the feeling I know all too well, there was the pressure right across the top of my abdomen and the pain was building. As I said the connection is clear.

On the whole, I have to say that I am now glad that I asked for help. Sometimes it may take a lot for us to reach out, and I guess what I have learned is that maybe, just maybe we should do so far sooner, rather than putting on the act of “I can deal with anything”, when the truth is, we can’t. It’s all well and good being strong and wanting to hold on tightly to our dignity and our independence, but when the time comes that you know in your heart you need help, you just have to ask, as it is there and they’re not all monsters and demons.

 

Please read my blog from 2 years ago today – 25/07/2014  – The learning path

My entire body seems to be on fire today, something has triggered a mass eruption of nerve signals. I noticed it within a few minutes of waking up, I had gone through my normal half awake wonder around, going to the loo, fetching a glass of coke and lighting my first cigarette of the day, when bang, the upper third…..

Making sense of my life

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Early Friday morning I had a smile put on my face by a delivery. It wasn’t what was delivered that made me smile, it was the delivery man. No, he wasn’t showing off a six pack, or astoundingly attractive, in fact, he was over skinny, with rather ordinary looks. What made me smile was something he did. I hadn’t expected the first delivery incontinence pads quite so soon, as I had only been on to their website the day before. It had explained that the delivery would arrive in plain packaging and made a promise that the whole process would be discreet. All of which I had forgotten, so when I was handed a huge heavy box wrapped in gray polyethene, I naturally said, “Do you know where this came from?” The driver leaned forwards and whispered, “It’s your pads.” He said it so quietly, that I had to ask him to repeat it, which he did, still quietly, and taking discretion to the limits. You couldn’t fault them in their promise.

I actually needed a smile from somewhere, as I have to admit that I really wasn’t looking forwards to the day at all. In the morning I was expecting the district nurse and I knew that I needed the enema that day. From earlier experience, I knew that the whole process was going to exhaust me. The energy required was daunting to say the less, but I was determined to get through it. On Thursday night we had cleaned out my wardrobe and Adam took 7 bags of clothes and shoes down to the bin. The bulk was made up of dresses all ranging from size 6 USA to size 10 UK, sizes that wouldn’t go anywhere near me. The only thing I held onto, was my wedding dress, which of course won’t fit me either but as it has spent 17 years stuffed into a plastic bag, from which I had intended to have it cleaned and ironed, but never did. There are always those things that hold sentimental value to great to throw out, some got ditched, but not that one.

Adam had presliced about a third of a can of cod roe for me the night before and was coming home at lunchtime to lay the roe, onto some melba toast with some cream cheese for me. While here, he would also do all the running around, bringing my meds and so on through to the lounge. We spoke the night before about how we were going to make things work, going forwards. Without a doubt, I need him home on the days the nurses are here. So we are working on a menu that he will prepare in advance and when home for lunch, just pop them in the microwave for both of us. I am also on the look for a mini fridge. It has to be just the right size and preferably black so it can be morphed into the room. Once in place, I will keep my bottle of drink in it so I don’t have to keep going to the kitchen. I hope I will also be able to keep some food in it so that some meals and snacks will be on hand. I just have to find the right fridge.

No matter how organised life is, or how much you try to make things flow, sometimes, the true impact isn’t about any of those things, it’s about feelings, most often the sort that words somehow fail to explain. If there has been one thing recently that I have had more than anything else, are feelings, the sort that runs away with you and leaves you stranded, with nothing to say. Trust me, even I can run out of words. The worst thing is, it leaves both Adam and I struggling to make contact, I am so tied up, that saying anything beyond a grunt or something that comes out sounding like a criticism, seems to be impossible. I hate myself when I am like this because of Adam. If I could hide away from everyone and be as alone on the outside as I am on the inside, then life would be a thousand times easier, on both of us.

There are so many stages of chronic illness and with every one, there are issues that you never expected to find. From my last few posts, it is clear that I am caught in one of those that is just tearing me apart. Dignity and independence are the two things that without a doubt, are the most important when it comes to self-worth. They are knocked and bashed around with a freedom that you just don’t understand until you enter this world of ill health. We spend our lives thinking that there is nothing that we can’t do, just to find ourselves suddenly physically unable to do anything. With each stage, you lose even more although, you already believe that you have lost everything, and the impact that has is colossal. Everyone around you is keyed up, ready and watching for those first signs of depression, waiting for that day that you crumple. When you don’t, they see you as unbreakable, the person who deals with everything with ease, let me tell you now, there is no ease about it. Just because you don’t become clinically depressed, doesn’t mean that we don’t hurt. My self-worth has been challenged continually, but this time, it is on a scale that I thought like everything else, would arrive bit by bit, rather than all at one time.

Six months ago, I thought of myself as already useless, happy, but useless, now, I can’t find a use for me at all. Yes, the happiness element is still there, as long as I can keep my mind off the fact that my body has found new ways of taking my self-worth and dignity, hanging it out in front of me and laughing. I know before someone tries to remind me, that I have a worth to so many others out there going through this shit, and yes, I know Adam says he can’t live without me, but I’m talking about my day to day life, the one I lead, away from this screen. When you reach the point where wheels have replaced your legs, where other people have to make your body work and even more others, have to clean it for you and dress it for you, well what use are you? All I have left that I do for myself is to feed and water me. The impact of all this, is so huge, that as I said, there are no words for it. They appear in sudden waves that hit you off your center and leave you lost. I wish I could explain how all this is picking away at me and how despite all of it, I am still holding onto happiness.

The more I try to find a way of telling all of you, because I know that it’s important, the more confused that it all becomes. At the core of it all, I believe is my love for Adam. As it doesn’t matter how hard my health tries to destroy me, there is always that love standing there like a guardian, warding off its attempts to finish me off. I can’t explain it better than that. There are no words, just this shield that stops me from falling into that depression all of us fear, but it doesn’t stop it whipping me hour, after hour. I have become a creature who can’t exist, without others to care for me. I am the needy, the being that is tended and administered to, I take and I take so much and give back little. Is it surprising my head has a hole in it, where everything, from every minute of my life, bounces about, and I have no idea what I really feel. I just hope that within this, you can find the truth of how I feel, because I’m even finding that hard.

Please read my blog from 2 years ago today – 11/07/2014 – Time to change again

I wish I could understand why it is that I so often wake during the early hours, to find that I have once again I have somehow managed to twist on the bed into a position where my head is still set on the pillows in its normal position, vouched for the fact that my hair is still spread across the pillows as I place it each night, but with both of my feet out of the side of the bed and actually flat on the floor. Waking like that is incredibly painful, partly because I don’t have the strength to pull my…..