Angels do exist

Posted on August 10, 2016 by livinginalimitedword

I can’t believe just how different I feel from a couple of days ago, to today. There are two people that I really need to thank for it, and both of them are district nurses. I didn’t realise that when I agreed to haveing the enemas done that I would find two such angles amongst those administrating them. Yesterday, the nurse who I think is the boss of the whole group was here and she has not put my mind at rest totally. Even though I knew that I didn’t need a catheter right at this minute, the whole thing about calling for help if I had problems was still bugging me. Anyone who has been reading for a while will already know the palaver that leaving the house and going to and from a hospital is, and although I had been told that I could call NHS 24 who would probably call one of the district nurses out, there still was a huge issue niggling at me.

The district nurses who come to see me, work out of a local health center and although they have a range of different things to hand, it isn’t like a hospital where everything for every possibility is there just waiting. If they did get the call, it would depend on my luck if they could help me or not, simply due to what or what wasn’t, in the store cupboard that day. I might still land up finding myself sitting here waiting for them to find either an ambulance with a stairclimber or a four man crew, to get me down all the stairs to the street. Getting there is usually the easy part, hopefully, made easier due to it being an emergency, it’s getting home that is the nightmare. I could be waiting for hours just to get home again, the worst to date was 7 hours. I didn’t need to explain this to the nurse here yesterday, she was very aware of the horror stories, it was then that she suggested the most logical thing yet, that has been said in this whole thing. She asked if I would like her to order a kit for me, so that if I couldn’t go to the loo, all I had to do, was call them, and someone would come to my aid, knowing I had everything here waiting. As she said, “if it never gets used, it doesn’t matter, it’s there just in case.”

The weight that lifted off me was far greater than I realised when she said it. It was just two weeks ago that I found myself sitting in the kitchen chain smoking and in tears because my bladder hadn’t emitted even a drip for over 10hours. I wasn’t in pain, but I was dreading the outcome, that was becoming more likely by the minute, that call that might have just found me once again at the mercy of the ambulance service. Until we get my bowels working to an acceptable level, it is something that could happen again with ease. When I told Adam later that evening that they were putting together a kit for me, he admitted that he too had been worrying about just the same thing. He has suffered alongside me on many occasions, and he knows as well as I do, what the effect on me is. I hate to say this, but it is so rare to come across someone in the NHS who works on logic, not procedures. I really feel that I have found a group of angels, who are going to do whatever they can to make my life easier. Although I haven’t yet spoken to them about it yet, I know from the little they have told me about their work, that they are also the people who will be with me through to my end. They provide the palliative care that I was so lost about months ago.

Actually, the whole plan that I was putting together stalled, when I found out that Jefferys’ grave, was in my ex-husband’s name. That is now all sorted out and the grave deeds have been transferred into my name. I don’t know why I haven’t picked up from where I left off, but I didn’t. I guess there was so much going on when the corrected deeds returned from Aberdeen, that it all sort of landed up shelved. I know they say that when you don’t carry through a plan, it’s because you don’t want to, that’s not the truth by a long shot. All those who matter, now knows my wishes for what happens after I die, and that I have found the funeral directors who actually have the package that I want for my funeral or “none funeral” would be closer. I just need to make a phone call and get the whole thing set up and paid for.

We do now have the whole issue of carers sorted out and we have made our first contacts with the social work department, so we are moving forwards with other pieces of what will happen as the end get’s closer. It’s just things haven’t quite happened in the order that I had them planned in, but that’s life I suppose, best-laid plans and all that. I guess when I started this post by saying that I am in a very different place from just a few days ago, is the reason why I once more feel that I can even think about my plans. I have been in a constant state of flux for a long time really. I’ve moved forward one step and found myself going backward before I even noticed. I now feel that I have the right people around me, so if anything else tries to knock me over, they are there to help me get back to the surface again, and that’s something really special to have.

Please read my blog from 2 years ago today – 10/08/2014 – No friends

It’s one of those rare Sunday’s, I am typing in peace, no snoring from the settee as Adam has actually decided to sleep in our bed. I really shouldn’t mock it has been several years since he chose to start sleeping on the settee just so I could get the undisturbed sleep that is essential. At first, he would sleep here until I appeared and then head off to the bedroom, but slowly that stopped, he…..

It shouldn’t be this hard

Posted on June 30, 2016 by livinginalimitedword

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…..

So much good, from the bad

Posted on June 25, 2016 by livinginalimitedword

Yesterday should have been a really good day, as I got the long awaited letter from PIP. Yes, I know that the assessor told me that there shouldn’t be a problem, but you never really know. Well…….. OK, she was right. Not only have I been awarded what I had been on before, they have actually increased the amount by over £100 a month, much needed now that we have the bill for the carers to cover. Without a doubt, it was the high point of the day, one that didn’t actually start well at all. It happened again, a second night where I soaked the bed through, and just as the first time, I was totally unaware of it happening. I woke for no reason I could find, to discover what had happened, and the guilt started at that second and lasted the whole day. Adam has taken a few days off, with the idea of just relaxing and resting, instead, he spent it washing, tumble drying and shopping for incontinent towels as clearly the towels I had in the house for leakage, just weren’t up to it at all. I had hoped, they would see me through to our next shopping day, when I could discreetly purchase some pads that would supply more safety.

I know that Adam is from a different generation, he doesn’t bat an eyelid at going to the supermarket to buy such pads for me, but I come from a generation which meant asking him, was incredibly difficult. When you have been brought up in a world where women don’t have periods, nobody goes to the loo or passes wind in front of another and only babies need nappies, a lot of things don’t come easily. My embarrassment meter has been way of its highest scale now for several days, but it still didn’t make it any easier. He set out from here after I had shown him the most common brand online, so he could find them with ease, even he admitted it is an aisle that he really doesn’t hang around in. He totally surprised me by coming back with not just the two different sizes I asked him for, but even a totally different brand as well, so I could see which suited me best. He surprises me all the time with acts like that. He has told me so many times that he wants to do more, to be more involved in my care, so that my life can be made easier, and it has been me over and over that has blocked it. Not just for those reasons, but yesterday would have been impossible without him.

I had to phone the doctor again yesterday morning, as I had noticed over the last few days that my feet had been badly swollen, not just their normal puffy, but grossly deformed with fluid. It was so bad that they were actually painful and when I did the press test, the crater left in my upper foot by my knuckle, took ages to refill. They didn’t just not feel like my feet, but I was also for the first time quite sure, that the swelling went all the way up my legs. When I woke in the morning, they had only gone down a little, and my hands were now so swollen that my rings were cutting in. I take Furosemide already, 10ml dose twice a week and a 5ml dose in between. Normally that is enough, but it’s not touching this at all. He has increased my dose to 40ml for the next 5 days to see if that helps, plus he is sending the district nurse out to take some blood, just to rule out that anything else is happening. As soon as I spoke to him, Adam poured out the top-up amount as I had already taken some earlier.

No matter how much fluid I passed, my feet kept growing. When I switched off my PC at 6pm, they were killing me. The pain just kept increasing and I didn’t know how to sit any longer. It was Adams idea that we tried walking to see if I could break up the spasms that were appearing all over the place. We slowly walked back and forward the length of the living room. I held his hands tightly as he walked backward and I wobbled all over the place. It didn’t work, the spasms kept coming. Out of desperation, we decided to take my socks off. The ones I am supposed to wear as I am at risk of a deep vein thrombosis. It worked wonders, socks gone the pain subsided, as long as I didn’t try to stand. The skin on my feet was pulled so tight, that they felt as though they might split. My feet looked worse than the night before. This morning, the problem hasn’t changed the slightest, they are still swollen and already painful. Despite the Frusemide I haven’t really passed any urine at all this morning, I’m just hoping the nurses will be here today, so they can see what is going on and report back to my GP.

I really don’t know how I would have gotten through yesterday without Adam being here. It was one thing after another, including yet another argument with our internet provider. Emotionally, I would have been a crumpled mess, physically a total disaster and there was no way, I could have washed all the bedding yet again, I’m still recovering from the first time. The good news there, the bed and I were dry this morning. So much went wrong yesterday, that not even the good news from PIP really got greeted with the joy it should have been. You could look at yesterday as mainly bad, mainly filled with stress and overpowering emotions, not the good sort, but it wasn’t like that at all. Yesterday taught me much especially about Adam and his commitment to caring for me no matter what it entails. Yes, I know the words have been said again and again. Yes, he has shown it by taking on so much and already doing so much for me, but yesterday was different. Yesterday was a full on “me” day, from start to end, and not once did he pull away from, or seem begrudging about his involvement. He showed me nothing but caring and understanding throughout. We haven’t had to live through such an intense “me” day, to date, the worst have been bullet points in a week, those bullet points became hourly yesterday. There is a huge difference in someone saying, “Don’t worry, it doesn’t matter what happens, I here for you” and them actually having to live it. I never doubted him, not at all, but I somehow I didn’t expect the total grace that he handled it all with. There wasn’t a single sigh or face pulled, none of those things I am used to seeing and hearing when he’s asked to do something he rather not, right then, or sometimes ever, but still he goes ahead and does it. Yesterday was totally different, and in an odd way, I’m glad my life went mad and it all happened as it did because it has shown me just how committed he really is, when it comes to being my carer.

Please read my blog from 2 years ago today – Becoming desperate

Last night turned out to be the worst evening I have had for a while, I just didn’t know what to do with my body. I spent the entire evening trying to break the feeling in my muscles, they were tense all the time and no matter what I did, there was no relief at all. Trust me I really did try everything, I stretched them in directions I didn’t think possible to twist my arms into, I pushed again solid objects, I pulled…..

Beyond black and white

Posted on June 16, 2016 by livinginalimitedword

I was at the hospital yesterday, the last of a list of appointments that I knew were ahead of me, back in January. Yes, it has taken that long to get an appointment, and it was the longest appointment I have ever had. Nothing to do with getting there or back, it honestly was the appointment. Both Adam and I were so sure that it was going to be the perfect trip. The appointment was nice and early, and that usually meant we were seen and home within a couple of hours, so we left here light-hearted, even though we were without a doubt late for the allocated slot.

We arrived in the waiting room at 9:40, twenty minutes late, but we were whisked straight into a consultant room. The door shut and we expected it to be opened in minutes by Dr. Hair. It was, but just long enough for him to put his head around it and tell us that he wanted one of his colleges to see us, to see if he might be able to come up with something he hadn’t thought of when he saw us 18 months ago. It was Dr, Hair, who put me on to psyllium, and a range of other things that we tried without much luck, and told me to throw away all the different laxatives, that my GP had me on. Since we saw him, I have had psyllium in my daily diet and he was totally right, it does help. The actual production and getting rid of stools is much smoother, but it hasn’t fixed the problem that I have with pain throughout my intestine. Since that visit, my gallstones have also flared up many times, and the combination of pains has made me far more than just miserable at times. Not even taking my booster dose of 10mg of Morphine always deals with the pain, it just keeps coming.

We sat there waiting, with the odd head appearing every now and then, but none of them coming into the room. One of them, eventually told us, that the doctor we were waiting for, was coming across from the Sothern General, to the Victoria, to see us. It is a good half hour drive between the two, so we eventually understood why we were waiting. It was in fact, a full hour and fifteen minutes we were sat there before he arrived. I’m sorry, but his name escapes me now. He for once, though, had read my notes and had a good idea what he was faced with. I filled in what had been happening since and why I was once more sat there. For once, my intestine hadn’t done what it often does, emptied just prior the appointment, I had a full gut and the perfect condition for him to palpitate and examine. Then it was down to what he had to say. He totally agreed with what I believed, that the nerves to my guts are dead or dying. They can not and will not supply the messages to push things through me and it’s a case of it all packing in tightly until it lets go of a length from inside me, then slowly packing in again. The pain is from my intestine being overstretched. The occasions when I throw up is because they are quite simply, unable to move things in any other direction. So what to do about it.

We firstly discussed the option that I dread, a stoma. Both of us are in agreement, that as long as we can make them move at all, it is an option that I don’t really want. For me, it’s the physiologic issues of having a bag of poo, stuck to my side forever. For him, it is the medical complications that go along with such an operation, complications that he thinks for me would be vast. What I really want, is to get rid of some of the pain that I am plagued with, after all, that is why I was there. He explained that even if they did do that operation, it didn’t mean the pain would end, with there being so much damage done to my nerves, it might continue, gut’s or not. Then we went to my gallstones. I thought, one quick operation and it would be done, surely they could do that for me. He told us all the horrors that such an operation could bring with it. According to him, it isn’t the quick operation that I had in mind. Once he went through all the nightmares he could think of, he added in, “and then, it is if the anesthetist is willing to put me under an anesthetic, something I’m not sure they would, with your current medical state.” I was sat there feeling totally deflated and feeling as though I was as always, stuck alone dealing with it all.

There was only one question I had to all he was telling me, “Is there nothing you can do without surgery?” It was then that he told me that there is a drug they sometimes use to dissolve gallstones, it’s not always wildly successful, and they have to be sure that the stones aren’t calcified, but yes, we could try that. As for my bowels, well the only thing he came up with, is trying to stimulate my bowels to let go without storing as they do. To do that, I will require the district Nurse to visit every couple of days and give me an enema. Yes, that was tried four years ago, but only for a couple of weeks, not long enough to see if it will actually work. One x-ray of my gallstones later, and a couple of cigarettes and to our total shock, we were on our way home again.

So here I am, with the facts all in my head and the final confirmation from a doctor that my body is failing step by step. There isn’t a single part of me that this damn illness hasn’t worked on destroying. Follow that Vagal nerve and it’s branching and you have the full picture of what it’s playing with, and what it’s destroying. People see MS as a condition that affects limbs and minds, no one really talks about how it also destroys everything inside you as well. I believe, that all I have left that it hasn’t had a go at yet, is my liver and kidneys, but it might have, I just don’t know. There is nothing they are willing to do for me right now, which actually means, there is nothing they are willing to do, full stop. As my health is only ever going to get worse, well this is it. They will tinker at the edges, play about with those odd possibilities, but as for the major stuff goes, forget it. The biggest answer that I had from them, was to take more Morphine to deal with the pain. I guess that is the story of my future, just take more Morphine until something fails totally and it’s over. I guess that I sort of knew that before I went there, but having it said to you so clearly, well, it puts a new edge on it. I still have much to think about, not least that I will have to have someone else coming into my home, to “care”for me, because I can’t. I knew a few months ago that life was changing, I just didn’t realise by how much.

Please read my blog from 2 years ago today – 16/06/2014 – Setting Summer out

Summer is beginning to appear, yesterday for the first time I was aware of a true change in the temperature. Clearly it has been rising for a while, otherwise, I would still have the central heating on, but yesterday the house felt just that bit too warm and I actually put my embarrassment to one side and ditched my dressing gown, I haven’t even bothered to put it on today. Now I know most people……

Through hell and back

Posted on May 25, 2016 by livinginalimitedword

I hope you are sitting comfortably, as the tale I have to tell, has nothing comfortable about it. A simple hospital visit, that turned into a total nightmare. It should have been straightforward, the ambulance should arrive with plenty of time to take us to the hospital, see the doctor and another ambulance to take us home again. It should have been that easy, but it was nothing like that at all.

My appointment was for 11:15, but as always, we had no idea other than what we had been told by ambulance control, as to the when the ambulance would actually arrive. They as always had told Adam that it would be here, anytime after 8:30 am, the time my alarm would normally wake me for the day. So yesterday, my alarm was reset, for 6:45, a somewhat ungodly hour that I wasn’t looking forward to at all. For me, an hour and three-quarters, is a lot of sleep to lose, but to be ready, what other choice did I have. As 8:30 arrived, both of us were now ready and there was nothing more to do, other than wait for the doorbell to ring. I went about my normal morning routine and found myself by 10 am, playing games just to fill in the time. Adam was pacing about, looking out the window in hope of seeing it approaching then sitting again for a few minutes until he thought he heard something. That is a game that I have given up on long ago, but it is a character that I recognise in myself from years ago.

It was 10:40 when the buzzer rang and the crew started their way up the sandstone stairs to our flat. Even before Adam had our door fully unlocked and the storm doors held open for them, I could hear the noise of the stairclimber. As much as I hate those things, I have to some extent become used to them, but the racket they make is unmistakable. I had turned off the computer and had my coat on and sat in my wheelchair when the noise in the hallway changed. I even said to Adam could they have made more noise if they tired, as their voices were echoing around the stairwell. Then there was silence. Just for a few seconds, before their voices appeared again, but without the unmistakable noise of the climber. There was the odd sound of it trying to move, but the sound only lasted seconds, before we were back to the over loud attendants. I headed to the door, intrigued by this point as to what was going on.

I arrived there at about the same instance as one of the attendants. The climber had broken down half way up the stairs, they couldn’t get the chair up nor down the stairs and were going to have to call into control for another two-man crew, so they could carry me down, or for another climber. We were just going to have to wait and see what would happen. As 11:15 arrived and went, Adam phoned the hospital to say we would be late. He returned to the living room, to let me know that it wasn’t a problem, we would be seen that day, either as soon as we got there, or we would be added to the afternoon list. Not perfect, but at least we were going to be seen. As luck would have it, the second crew arrived quite promptly and were made it to the hospital, before 12. During the trip, we were told that the stairclimber had just returned into service, after spending the last 7 months in Germany being repaired. The crew were hopeful, though, that it just needed a properly charged battery.True to their word we were seen promptly and were back at the ambulance station within the hospital, to wait for our return trip by twenty past.

We were with the consultant for about 15 minutes, discussing what had happened in the past six months. To be honest, I didn’t have a great deal to report, as my chest has been really quite good, just the odd difficult point which he put my mind at rest about, in fact, things have been so good that he suggested that we didn’t need to return, unless I was having problems. With Adam working in the same hospital, he can go and talk to them at any time if needed, so we are in a different position from many. Right to the point that he has said he can just drop of a sputum sample without even talking to them, should I be having new problems. It was at the point where we should have probably been leaving when I suddenly remembered that I had forgotten to bring my DNR with me, as I wanted it added on to my hospital records so that no mistakes could be made in the future. I had to once again show that I wasn’t depressed and that I knew what it meant before he agreed. But he congratulated me on my ability to have looked forwards and to have made this decision so that it didn’t have to fall on Adam in the future.

We were about to leave when he once again gave me his standard warning about not being able to give me oxygen at home if I continued to smoke. I instantly pulled him up on it, and told him that I had read Scottish government policy that said the total opposite. As I went further in quoting some sections, he showed quite clearly, that he too had read it. Although not word for word, he too started to site parts of the policy document, both Adam and I knew then, it had been nothing but a hollow threat, and we had caught him out. Adam and I chatted about it on the way to the station room, I have to admit, that was quite smug about it actually. I seem to be growing stronger in my old age, as a few years ago, just because of his position in life, I wouldn’t have questioned him. I used to be very much part of the school of thought, as in “who am I to question someone more learned than myself”.

We had been outside for a cigarette and had been waiting for well over an hour for our transport home, when the women who runs the system within the hospital, decided to phone and find out what was happening. We were told they would be there in 20 minutes, a time that came and went. She called again and while on the call, she put it onto speaker phone, ambulance control had just realised they needed another stair climber to get me home. It was then that I started to get uptight and reminded Adam about what I had said, just a couple of days before. I had had the strangest feeling that the whole day was going to be a disaster, one that was going to push me to the limits. Control ordered another ambulance to come for us, we had little faith in their timing of half an hour and it too came and went, but this time for just 5 minutes.

When we arrived back here, well clearly, I thought that was it, it wasn’t. We were half way up the third flight of stairs when this stairclimber also broke down, this time, with me in it. I was in this half sitting, half lying down position and there was no way of getting me up or down, it was totally dead. Adam had run up the stair ahead of us, so he could get the doors open, it took him a couple of minutes to realise the noise in the hallway had changed and to return down the stairs to be with me. At first, I was fine, but when they called in and were told that there were no other batteries to swap over with and that carrying me was the only option, that I started to get wound up. I also heard them say, that not even a six-man crew could lift me and the chair, the whole thing was too heavy and didn’t have anything to hold onto, to lift it by. I was totally stuck. The tears started and my entire body was shaking as different nerves started to react to my distress. They did their best to calm me down and to reassure me that I was perfectly safe where I was, but trust me, it’s a position you don’t feel safe in.

The crew were great and didn’t take the word of their control. They knew where there was a battery and they called the guy who had it. It was on board another ambulance which was at the Southern General, half an hour from our home. I was just going to have to try and calm down and accept what was happening. I had a cigarette and Adam brought me a drink and between the three of them, the took me through several fits of tears and tremors. Adam even took over holding the bottom of the chair so that I could see him with ease, which actually helped a lot. No matter how well trained these crews are, it was being able to see Adam and knowing he was holding the weight at the bottom of the chair, gave me more trust in the fact I was safe.

The second battery arrived and switched them over. At last, we were on the move again. This is where it gets beyond a joke, half way up the final flight, it too broke down. I was once more stranded. It was the first time that luck came into this whole things. As they are apparently designed to do, there was enough power to go downstairs, but not up, so we at least could return to the landing, where we waited for assistance again. Another 15 minutes of waiting and yet another crew arrived, this time, I changed into the chair they can carry, and that was how I eventually arrived home. I know this post is long, but it was a long day and one that that needed to be written about, as without a doubt, it is a mirror to the state of NHS. At 4 pm yesterday, the time I arrived back in my home, there wasn’t a single working stair climber in the entirety of Glasgow. Nor will there be today, as those batteries take a full 24 hours to charge and no, they don’t have spare ones charging all the time.

By bedtime last night, I still had that feeling that I could burst into tears any second, I was right on the edge and I had no idea how to get rid of it. I have to admit, that even writing this, has made me feel that way again. I am sure that you also understand why it has taken till now for me to make a post at all, something, I thought I might have managed to write when I was home yesterday. The bad news is, that I once again have to put my life in the hands of the ambulance service next week. I just hope it is nothing like yesterday.

Please read my blog from 2 years ago today – 25/05/2014 – Facing the facts

I woke at midnight, I wasn’t sure the second I woke what was wrong I just knew something was and that it had broken my sleep abruptly. Then it happened again, I can say that as the second it did I knew that was it, that was what had disturbed me, something really hard to do these days. My lower legs both of them were in pain and not a spasm, this was different almost as though they were causing me pain just because they could. I lay there for a few seconds……