Seeking freedom

For weeks I have been struggling to make the way from one end of the day to another, without feeling under constant pressure. It felt as though I was chasing my own tail all of the time. So to be sitting here at 11:30 in the morning and to be able to say that I have done everything that I have to, and I even spent the last hour playing games, it seems unbelievable. I can’t even start to explain just how it makes me feel, as I now have time, to do what, I don’t have a clue yet, but as this is my third day in a row where I can say this, I clearly have time to myself again. Today, even the Nurse has been and gone, something that probably is helping tremendously as I’m not waiting. Waiting has to be the worst thing in the world for that pressure sensation to feed off. When you are just waiting for the doorbell to ring, time turns into the longest string of pain there is. I know that the district nurses don’t work to my schedule but must work to their own, so all I can do is accept things as they are, I just wish I could ask them to see me first every day.

Writing that paragraph just had me scurrying out into the hallway. When the nurse left, she did so with me still sat on the toilet. She had done just as I asked her too, to shut properly the inner hall door, which has a yale lock on it, and to pull over the storm doors so that when I returned to the bedroom to get dressed, should someone be out there, they wouldn’t see me through the glass panel, passing half naked in my wheelchair. When they left last Thursday, I totally forgot to lock the storm doors and just returned to the living room to get on with my day. About an hour later, Adam came home to find the house unlocked. He is always reminding me about security, to make sure that I don’t let anyone in on the intercom that I don’t know, and so on. The second I heard him enter, I remembered I hadn’t locked the door. To be fair, it was me who mentioned it not him, but I felt really bad about forgetting, not so much because of Adam, but simply because I had forgotten. I even told the nurse about it just before she went today, partly as a way to make me remember. I forgot again. The door is now locked and luckily, I actually also needed to return to the bathroom anyway, so no real waste of energy. Clearly, I need to come up with something to remind me, otherwise, well the future may well find the door unlocked more than secured.

In the early hours of Sunday, I woke needing desperately to go to the loo, but as soon as I moved myself to the edge of the bed, I knew something was wrong. No, I hadn’t wet myself, but I was in trouble in a different way, the tremors were back. I had been so sure that they were down to the lack of potassium that the doctor had detected, yet there they were, both arms and legs dancing to some mad tune of their own. As I sat there in disbelief, it was clear that my body was alive in its own mad way and that getting to the loo was going to be interesting. When my arms are dancing like that, I seem to find it hard to push my chair in a straight line, bumping into doorways is a standard issue. It was just like I had jumped back six weeks and I feared that it was all starting all over again. I went to the loo then headed to the kitchen, not just to have a cigarette but to spend a little time, just gathering my thoughts. Sitting there made it totally clear that my body was dancing wildly, and I was feeling terrible as well. Despite that, as I sat there I was also finding it really hard to stay awake. Sleep was drowning me and body dancing or not, I needed to return to bed.

I woke on Sunday morning to the alarm, still exhausted but with a body that was at ease and without the twitches. I looked at the bed, but apart from the fact that the duvet was all untucked, every sign of my night’s activity was gone, but even Adam noticed that I was tired. I was a lot quieter than normal and holding on to a great desire to return to bed. I can’t help wondering if my arms and legs had been active all night, as my limbs were both sluggish and heavy, just as they are when I have done too much during the day. Whatever had been behind the tremors, it had gone during the day. Today, once again, I am tired and my limbs are again heavy. I am beginning to wonder if the potassium really was behind the tremors at all. Yes, I think it aggravated them and made them more active during the day, but their antics the other night has made me aware of them again. It’s hard to tell what is going on, but as always, there is nothing I can do about it and all I can do is wait and see if they are going to happen during the day again as well.

Even though it is Monday, Adam isn’t coming home for lunch, that is unless he wants to. This is another thing that my new mini fridge has brought to our lives, Adam has his freedom again. My lunch is sitting waiting, all prepared by me this morning on the top shelf. It makes me wonder if with some thought, that there might be some other gizmo’s out there, that could change things just as much. I know that he likes doing things to help me, but while we can, I really do want to give him as much help and freedom as possible. We had a taste a month ago, just how dramatically our lives can change, overnight. It took us a month to sort it out and this time, we were lucky that there were ways of making life still work. We might not be so lucky the next time. Clearly, this is the time to look for those answers, before the problems appear. There are things already that I can see as minor issues, that could quite easily turn into major ones.

The biggest one is actually being caused by one of the answers to my incontinence, how do I manage to put the pads on and pull up my clothing, if my legs get any worse. Right now, I can still stand long enough to manage it, but what happens when my legs get worse, which they will. I can pull up my knickers and trousers without standing fully, by taking the strain on the grab rails, but the pads are fiddly. They need holding in place with on hand while standing, then using the other one to ease my knickers over them. Even then, I often need to twist and pull at them, which can’t be done while sitting, otherwise, they twist and ruck. How do you do these things when you can’t stand at all, or for less than 30 seconds? If anyone out there knows the answer, please tell me, as I have been thinking about it a lot, and I can’t find it in my own head at all.


Please read my blog from 2 years ago today – 19/07/2014 – Able and willing

I’m not quite with it today, my mind is tied up with one of Twitters strange blocks and like any puzzle I come across, I just have to pick away at it until I find the answer. I have always been the same, I hate anything that I don’t fully understand, I suppose that is part of my insistence on understanding my……

Time for a new life

I’ve done it a million times before, well, it feels like that anyway, so I can do it again. I never thought that my life would turn at this speed, but it has, so all I can do is piece it back together and force my control on to it. So where do you start? What do you do first? How do you work out what it’s even going to look like? Well, you don’t do any of those things, not one of them. I know that sounds a bit nuts, how can you put your life back together, if you don’t even start trying? To me, that is the mistake too many people make, they try, they choose a point and they say “From here on in, it’s going to be different.” The truth is, it just doesn’t work that way.

Every time my body has destroyed me, the only way out of it, is to let it sort itself. There is no miraculous formula that sorts life, life has to sort itself, but we can help, we can put in place the structure and then let it grow. It’s a bit like caring for a climbing plant, you have to put the framework in place and then coax it to grow and cover it. What you do have to do, is identify the elements that will form that framework. For me, organisation has to be at the base of all of it. In little pieces, I have mentioned what is needed in the past few posts, but it’s all sort of muddled up and scattered all over the place, which is why I am still in a mess. My thoughts have been so wild and so all over the place, that I have been left no better off from writing them. Usually, when I write, it helps me to make sense of how I feel and what is happening, but it hasn’t been working lately, because of the speed that all the changes have been flying at me and because the rest of my life was all over the place.

So, organisation, you could ask that is my asking to the “where do I start?” question, I’m not. It’s a question that doesn’t need asking or answering, as it has already started. The instance my mind said “Enough is enough”, it began. All I am doing now is agreeing, and making sense of all those fragments that have been flying around in my head and appearing in this blog. I started my organising when I cleaned out my draws and bought new clothes to fill them. Clothes that were long overdue, as I have been wearing the same two pair of pyjamas or the two nightgowns and two dressing gowns for the last 5 years. Suddenly, I now have 6 pairs of trousers (all stretchy and comfortable to sit in), 5 long tops (all that cover me down past my hips, to be sure the bulges of towels can’t be seen), 12 pairs of sensible knickers( I used to so love my G-strings), 5 bra tops (not bras, they have hooks, these just pull on and off), six pairs of socks (toe to knee tight to prevent DVT) and two long flowing jersey cardigans, to cover up and hide any mistakes. Not one has a button, zipper or a catch, just easy access and exit designs, so I can dress alone, slowly, but alone. I haven’t had such a selection to choose from for far too long. In an odd way, they have been both the start of change and part of the problem in one, as I added something that makes life harder, I now have “choice” to deal with as well. That done, I cleared the wardrobe and created a home for all incontinence products, now piled up high and stored out of sight, but still reachable for both myself and the nurses. Both my bedroom and I, still managing to look anything but, hospital and patient. I have done everything that I can to preserve the “me” that was formed years ago, but accepting that I am no longer physically the person I once was, I’m modified if you like, but no more.

With my bedroom and my body now looking as normal as I can achieve, but with the allowances that have been forced on me, that leaves me free to sort out how I’m going to live. To live, I must have energy, something I have fought to work with for years, but I am now failing to manage as I once did. Energy is at the base of everything, without it, I am no more than a zombie who exists and that I idea, I quite simply can’t accept. Getting the balance between what I am supposed to do, to control both my bladder and my bowels and the amount of loss of control I can accept is a huge problem. I don’t have the energy to be going back and forwards to the loo every hour, nor do I have it to spend going to and fro to the kitchen, constantly collecting cold drinks. Yesterday online I bought a mini fridge, it is now sat in the living room, just one steps from my computer. Every morning, it will be stocked with bottles filled with my drinks, plus some cold water and a glass to take my potassium tablets with. There is a small shelf at the top, where once I have had my breakfast and morning meds, I can prepare lunch and it can sit there waiting for me. On normal days, this should be enough to limit my need to run around, other than going to the loo.

It may be the first day of the fridge being sat here, but it is already making a difference. Firstly, because I no longer sit nursing the last inch of fluid, as I have no energy to fetch more. I can now drink freely, something that will hopefully help with my bowels. In the past, my fluid intake has been greater in the evening when Adam fetches my drinks, now it should be constant, tapering off at night, so my bladder isn’t so full before I go to bed. Three things cured by buying one gizmo. I refused today to have another supplied by the NHS, the district nurse offered me a commode, I’m not ready for that step yet. Admittedly, it would remove the other issue, but then would come the emptying and I can’t ask Adam to do that before there is no other option.

I have also sourced foods that I like and can be prepared either by me or by Adam on the two days that just now I need his help. On Mondays and Thursdays when the district nurses are here, I use up so much extra energy with the whole process of the enema and the extra trips back and forwards. I am hoping that in the process of the next couple of weeks, that I will become more organised and that I will get it all working smoothly. So here is my framework. I’m fed, clothed, watered and rested as much as possible. Today, I have brought all the pieces together, I have the roots of my new life in place, from here, hopefully, the rest will grow and life will become easier, not just for me, but for Adam as well.


Please read my blog from 2 years ago today – 15/07/2014 – Passing the night

I used to get a magical half hour when I first woke up, I always thought it was partly because I take time to wake up, that my nerves didn’t react the same after lying partially dormant for so many hours, but I would be able to get up, go to the loo, fetch my glass of coke and come through here without pain. Even when I sat down I couldn’t feel burning, or pins and needles, just a strange fuzz, as though I was……

Making sense of my life

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…..

Which, what or way next

The mental overload that I have found myself within the last few weeks is becoming exhausting. Why is it, that when life finds a chink in your mental armour, it then pours in more and more until you want to scream at everyone, “Just leave me alone”. I find myself exactly where I feared when I agreed to the help of carers. Finding those glorious gaps where I am alone and life is peaceful, seems almost impossible now. Two months ago, my life was easy, Adam and I alone on Saturdays and Sundays and every weekday when he works, I was here by myself and our evenings were about us, nothing else. Now, I have just Tuesday, Thursday, and Sunday, when life is as it was, the rest, are messed up, changed and noisy with people. How can just one hour from each day being changed, feel like a total day taken over?

I know that last week was exceptional, as I was really meeting and building the picture of my needs from the incontinence service and the district nurses, but even when they were here to do my enema this Monday, it felt like my entire day was reshaped. The enema on Friday hadn’t really worked. I did warn her that I didn’t think the contents of my bowels weren’t in reach. As she squeezed in the contents of what looked like a rather large bottle, all I felt was the tip of it, then 15 minutes later the liquid starting spill back onto the pad she had supplied for such an outcome. Neither of us had really thought it out either, as although my wheelchair was to hand, I had my trousers and knickers still around my ankles. Not exactly a good move when my body was racked by tremors and we had to somehow get to the loo. Trust me, it was a journey that I wouldn’t have managed without her assistance, otherwise, my white bedroom carpet wouldn’t be so white. It wasn’t as though my bowels cleared, they just took exception to having something enter it from the wrong direction.

Until late that afternoon, that was all that happened. The hours passed and nothing other than fast journeys for small amounts of liquid. I really shouldn’t have wished for action as that was what I got all day Saturday. Every time I moved, I had to go to the loo to clean myself up. I went from nothing happening, to a slow seepage of solid that I could do nothing about. On the good side, it was also Saturday that I started to feel pressure right across the top of my stomach, a pressure that I knew all too well. Late Sunday, it started to turn the corner and if life went to my bodies normal plan, that would have meant three more days of gentle build up, them two or three days of pain, before it would move again. Normal was interrupted on Monday, by enema number two, and the wonderful relief of all that future pain being interrupted by relief. As Murdoch used to say “I love it when a plan comes together!”. Because it cleared as far as possible, there was no follow-up leakage, no pain nothing, just my body doing what everyone else does with ease. Monday also found me on a good day. When the nurse arrived the tremors were quiet and I wasn’t normal, but about as close as I ever get. That meant that once she had me safely on the loo, without either my trousers of knickers, I told her to go. She could see clearly the difference in me and was happy to follow my wishes. I think she had been gone about twenty-five minutes when I started to wonder if my choice had been a wise one.

Somehow, I had to return to the bedroom, play about with the new mega towels she had delivered (quite honestly, if you added tags, it would fit a 6-month-old baby), get redressed, locked up the front door properly, and tidy up all the bits and pieces she left behind. That whole period from her ring the doorbell to then was about an hour and a quarter, and I didn’t have the tiniest drop of energy left, twenty-four hours on, and I’m still not revived. It appears that I somehow managed to empty, far more than just my bowels.

It’s Tuesday now, that means I am alone today, this is one of my peace days that I knew so well, but every second of it so far feels, like I am working towards finding the energy for tomorrow. The morning will find me once more with the nurse, and another enema, although I doubt there is much there after yesterday’s spectacular success. Tomorrow afternoon will see my carer here for my shower. How am I going to make my way through all that, and still be alive enough to enjoy my evening with Adam? A double whammy, that right now sounds like something that is going to leave me beyond wiped out, but I have no choice, this is the agreed plan, the way things are to be until we know exactly what works and what doesn’t, for my bowels. It goes without saying that I am more than hopeful that the space between each enema in time will be expanded.

It is bad enough that I feel so out of control of my body, but to throw in the sensation that my life has been taken over and planned by others, well, it’s left me just a little numb right now. Yesterday, the chemist arrived with yet another new drug, something else for me to swallow on the instructions of my doctor. It feels right now as though all I do is swallow and breath in medications, and when that fails, the nurses take over and insert it where I can’t. If anyone can think of any orifice they have missed, well please keep it to yourself. I always thought that our bodies were supposed to carry us through life and to bring us pleasure along the way, life now is all about medications, just to make it work at all. That pleasure piece, well, it’s still there when there is the time, just a little harder to find, and far less fun than I remember.


Please read my blog from 2 years ago today – 06/07/2014 – Some scares never heal

I feel that bit more under control today, not as lost and as though I am grasping at anything in my mind to keep me in line and still moving. It’s mad how something you knew, but didn’t want to hear, can really through you into the worst of muddles and make you just want to stop the world in it’s tracks for a while. I would even go as far as to say that my determination not to be beaten, is returning, not in the angry…..


It shouldn’t be this hard

I feel so weak, I don’t have a clue why I should feel like this, but I do. In fact, I started feeling like this a couple of days ago, but it has only become worse, not better. Every time I try to stand, my limbs are weak and don’t want to hold me, or even push me into an erect position. At first, as I said the other day, I put it down to the tremors and twitches, but I have begun to wonder what is truly at fault, is it my PRMS, or is it something else.

I spoke to my Dr on Monday, he phoned to tell me that he has at last received the letter from the consultant I saw about two weeks ago. As I knew, he is starting me on a drug that will hopefully melt my gallstones, plus he is arranging for the district nurse to visit me every couple of days, to give me an enema. As it is clear that my bowels are no longer capable of clearing themselves, they hope that the enema will stimulate them to move. At the moment they are bulking up until there is nowhere else to go, which is decidedly uncomfortable, if not painful. I took the opportunity to talk to him about the fluid retention and how it is now clear that I have been swelling up for far longer than I thought. Over the days that I have been on the higher dose of Frusemide, my entire body shape has changed, so he suggested that I stay on the 40mls to stop it from returning. I forgot at the time that there is an issue with my being on such a dose as I have Vasovagal. When it was diagnosed with it, I was warned about taking Frusemide as it might aggravate it. For those who don’t know, Vasovagal can and has made me pass out with incredible ease. Which is exactly how I feel, as though I could do at any second. I can’t be sure, but I think that could also be aggravating the twitches and tremors. Adam and I talked about it last night and agreed that I shouldn’t take it today and see what happened. By mid-afternoon, nothing had changed, despite me drinking as much I possibly could, without throwing up, another sensation that is hanging around, but we will see.

I know all too well that I might just be grabbing at straws. We all do it when we feel out of control, whatever we can come up with, has to be a better answer than the one we don’t want to face, that this just might be what it is, a new way of living all over again. So I’m holding tightly to that straw, no matter how thin, as I don’t know how well I would cope with that dreaded reality.

I had realised a few weeks ago that I was putting on weight again. At the time I was totally lost as to why, as I haven’t changed my eating habits, and although my weight had gone up when I was first housebound, by a very annoying and unshiftable 3 stone, it had stayed constant since then. I avoided standing on the scales, but when I was at the hospital, they forced me onto them. I was horrified when they told me that I was just under 14 and a half stone. Another 17lbs, and every single one of them more unwelcome than the first. This morning, I fetched the scales from the cupboard and ventured to stand on them in the kitchen, 13st 4lbs. I’m still not happy about it, but at least the Frusemide has clearly removed the mythical weight as it was nothing other than water. Which leaves me in a total quandary, carry around unwanted fluid and possibly feel better, or be happier about my shape and weight, and feel like death warmed up. Why is it, that the longer we live with our pet illnesses, that the harder the options get and the more likely it is, whatever the result, we’re not going to like it?

Wednesday 29th

I had to stop writing yesterday, I was feeling terrible, so for the second day in a row, I retreated to my bed. By the evening, I was feeling a lot better, not perfect, and the twitches were still there, but smoother if twitches can be smooth. The difference from the day before was marked, Adam and I decided it was worth not taking the Frusemide this morning as well, just to see what happened. Well here we are, the next morning and I don’t feel like I want to pass out. I twitching like a mad twitchy thing, but I don’t want to pass out. I think we have the reason, all we have to do now, is find the balance, what dose will control the fluid without making me feel ill.

The district nurse has been and like some kind of mad whirlwind has taken over my life. Firstly, she took my blood, but then there were a million questions, and chat about every single part of my life. Of course, we started with my bowels and the type and frequency of enema that I will require. She isn’t happy with the type that has been prescribed, it is a Phosphate Enema which she feels it too violent in its actions and in her experience, the smaller more modern ones, are better, but we clearly have to try the prescribed version. I’m hopeful that it will be here by Friday, so she will do the first dose then. She asked if I was having problems with my bladder, so I let her know about the leakage I have during the day and my recent nighttime bed wetting. To my delight, she is the person he should have sent me to, not the hospital continence team. She can supply the towels and pads so we don’t have to keep buying them. She did say, though, that it might still be worthwhile seeing the hospital team as well, as they might be able to offer other options, especially as I can no longer manage to self-catheter.

With the toilet areas all covered, we headed onwards. Next came mobility and how I was managing my wheelchair. She totally agreed that I should have an electric chair and is going to get me referred back to Westmark, the department at the Southern General hospital, who are responsible for the final decision. Then came the fact that I haven’t seen my Neurologist for at least 7 years, if not more. She could see that I was very reluctant when we got onto that area. I went over the last time I was there, and what had been said by all the different departments who I saw back then. I explained how they had all told me the same thing, that there was nothing that they could do for me. She was clearly not happy about what she was hearing, and I knew from what she said that she knew as well as I did, that I had just slipped through the system. There should have been return visits, and something had quite simply gone wrong. She is going to take a look at my notes and see what happened back then and let me know when she is here on Friday.

The stress of her entire visit built and built, by the time she left, I was once again a jibbering, twitching wreck. I know that I react to strangers is my home badly, but this one really pushed me. I had a distinct feeling that she intendeds to sort out my life, and I’m not too sure that I want her to. Yes, there are elements that I need from her, but the actual organisation of it all, I really don’t feel I am up to it. There will be more hospital visits, more people to see and more things to do when all I want is peace and quiet.

Please read my blog from 2 years ago today – 30/06/2014 – The doctor lottery

I seem to be just jogging along the same path every day at the moment, inside all I want to do is sleep, but when I am lying down I find I can lie there without sleep appearing. Yesterday afternoon I lay in bed during the afternoon just aware of once again how dead my arms and legs where and how incredibly tired I felt. I would have sworn that I didn’t sleep at all, but the clock told a very different story, I had slept for well over…..