Sensations go deep

Would someone please cut off my hands and give me some peace! Please!! Sorry, I’m whining. It’s not like they are the most painful things I have ever had attached to my body, it’s just they won’t shut up and won’t give me even a seconds peace. I thought that the steroids would have done the trick, that today, they would have been as close to normal as they ever are, but their not and it’s not just them. You know that feeling, when you have just come inside, on a bitterly cold day and your skin is so cold, that it feels like it is on fire. Well, I have that from my elbows down to my fingertips, (worse on the back of my hands), my cheeks, lips and nose and oddly, at the top of my spine and on my front, are disks about the size of a side plate. Not so intensely, it is also inside my mouth and down into my stomach. Add into this, the fact that my eyesight is also totally screwed and I can’t see anything clearly. When I woke this morning I was so tired that all I wanted was to go back to sleep, but I had twitches so bad, that staying still was impossible, usually, lying down clamps my body still, but not even that was working. I gave up trying at 7:30 am. My body is still screaming out for sleep, I’m dizzy and I would just love to throw up. PRMS really sucks at times!

This flare isn’t showing the slightest sign of going anywhere. My doctor said if they didn’t work, that I should call the MS Nurses and see if there is anything more modern to try. I haven’t called them, but I have looked online and there is nothing. I have searched and searched, but not even the research papers showed a glimmer of hope.

Feelings and sensations don’t really sound like much, but they can be both distressing and overwhelming, especially as I haven’t had total peace from them for over a week. Everyone alive has had things like pins and needles, but in most people, they last maybe ten minutes, they’re annoying for the time they are there, then they are gone. This is far more intense than pins and needles, but try just for a second, imagining your living with them right now and they aren’t going anywhere. They have plagued you for a week and all that seems to be happening, is they are getting worse. There is no escape, nothing that will break them, even for a few seconds and you’re isolated inside this mess of constant sensation. Skin isn’t supposed to crawl, it’s not meant to be beyond alive, it’s just supposed to be there, doing nothing. When nerves are going mad like this, I have to admit, that I get scared by it. The past has shown me, that it can all too often, be a prelude to them stopping doing anything at all. This is a mirror of when I lost my hand, it too started with sensation, built to weakness and then died. For that to happen to two hands and my face, well I’m sure you can understand my fear.

Jane, my carer is due here again today, although I wasn’t even slightly aware of thinking about her coming, I suppose that there is a chance that her visit, is also playing a role in my not being able to go back to sleep. Everyone has been so supportive, so many great messages and people telling me that I am in their thoughts. I know that it’s not, but it still feels so stupid that something as simple as someone helping you shower and dress, feels so huge an event in life. I am beginning to get myself past the point of “I just can’t do this”, after all, we are three days past her first call, and I haven’t died.

In an odd way, Adam has helped me a lot with the whole process and he has done it without even knowing. Because I am struggling so much with life just now, he has been stepping in to assist me. I know that this might not make sense to some, but because my tremors are so bad, he decided on Thursday that he was going to try and stop them. I have written before about how physical contact between us is difficult, due to the pain I am in, the pain he thinks he will cause, and simpler things like the positions that I sit in and because I rarely sit still. I was in full flow of tremor that just wouldn’t give in, he suddenly slid across the settee, pushing himself as close to me as he could, then clamping his arm around me. He hasn’t held onto me like that, on the settee, for what feels like a really long time. I have to admit that at first, I was really uncomfortable with it. Not because of how he was holding me, but emotionally. It has been a long time since he has done such a thing, that anyone has really touched me, outside of goodbyes and goodnights. Physical contact in that way felt alien to me and I realised that that was part of the problem, no one has really touched me, in any way at all, for years. Outside of Adam, I haven’t even been touched by another human being for years, not even a handshake.

While we were sat there, things started to click together in my head. Without a doubt, I know the biggest thing with Jane coming here, is my loss of independence, but it was also followed abruptly, with the fact that no one has seen me naked, or even semi-naked, touched me or been involved in my life, outside of Adam, for as long as I have been housebound. Just having Adam holding me, opened up things I didn’t expect, and showed me, just how much I have really been isolated. As we sat there, I felt myself putting all of this together and I understood, even more, why I have been beating myself up, stressed to the max and so uncomfortable with this new phase of my life. Being showered by someone, brings together all those things I haven’t been involved in, or felt for years. Understanding is always the first step in living with anything. We have to understand before we can accept anything.

I’m not at ease about today, but I am far more at ease than I was on Wednesday. If I felt well, then I don’t think that today would be half as bad as the last visit, I just feel so bad and that is something I can’t change at all.


Please read my blog from 2 years ago today – 12/06/2014 – Somethings don’t change

It is only, 7:27am, extremely early, well it would be if I hadn’t been awake since just after 3am. I woke again as I did the other day with mad sensations, throughout my entire body, not painful, but when your skin is alive and burning, sleep doesn’t come easily. I did try, in fact, I lay there for half an hour before getting up for a cigarette in the hope that just being upright and moving would be……

The price of help

It was Friday morning that the Social Services rep came to see us. I don’t remember her name, not because of anything bad about her, quite the opposite, she was an extremely nice person and wonderfully understanding of our position. I had thought that it was going to be another PIP type interview, and although there were similarities, it felt nothing like it. She wanted to see, not just talk about how I was dealing with my life. To watch me transit from my chair and the all the places where I had to, not just make her own pictures in her mind. We went from room to room, and I we talked about what worked and what didn’t for me. Not just because of how things are arranged as an OT does, but what the problems I encounter in every way. We landed up having a discussion about incontinence in the bedroom, weight in the bathroom and almost everything else in the kitchen. Somehow, that was the room where we landed up chatting about everything from food to meds, my issues with strangers and inability to deal with things like the mail. It was while we were there, that my Doctor called me back and the decision that Steriods were what was needed, to see if we can fight off whatever is happening to my arms. Which by there the way, there is a little improvement, apart from my legs decided to join in yesterday, but I have after all only taken three doses so far. Adam fetched them in the early afternoon for me, but I decided as they can cause issues with sleep, to leave them until the next morning. I am so glad that I started writing my posts a day in advance, as it allows me to handle my new stilted typing style, and the even stronger than usual case of dyslexia, that is centered in my fingers.

My body was a mess on Friday, it is almost as though, it for once was actually ready to perform to a stranger and to show them what life is really like. When we eventually made it back to the living room, it was then that we talked about what help I need and how to go about it. It was also then that we were told about what it would cost and how the two different systems work. The straightforward one is an assessment of our incomes, which would once they have decided what we can afford would shape the amount we would pay. If I have just one visit a week, the charge would be £25 at the full rate. I panicked when I heard that as I immediately, as I thought that that would be the charge for each and every call they made. Not so, they do understand that people couldn’t possibly pay out several hundred pounds a week or day, depending on how much help they need. There is apparently a cap. and once that is reached, the rest is free. My case worker would be the women who was here on Friday, and she would allocate the person coming out to me.

I need at that point to tell her about my fear of how such visits might go, due to a nurse who was coming to see me a couple of years ago. She was here, because of the problems I have with my bowels. They wanted to try giving me suppositories every second day, something I couldn’t do, because of my dexterity and the angles that my arm had to reach in. On three occasions, she left me crying on my bed. She hadn’t done anything wrong, but I couldn’t deal with someone sweeping into my home, shoving something up my backside and without even a goodbye, leaving me lying on my side, a position I have issues with as I can’t roll with ease, and then letting herself out. I just found the whole thing distressing, despite the fact I totally understood why she was rushing and I didn’t expect her to stop for a chat, but I did think she could have been friendly enough to make sure I was at least comfortable and at ease. I was reassured that nothing like that would ever happen. They too wouldn’t have the time to stop and chat, but they would never leave me if I was upset. If there was any sign of my not being my normal self, they would stay as long as possible, and phone the office with their concerns, whereupon Adam would be called.

They couldn’t guarantee that I would see the same people every day, but they would try to as much as possible, as we had made them aware of my difficulties with strangers. Different tasks are allocated a time slot, not just in the day, but in the length of time, they have for performing whatever they are here for. If it should prove to not be long enough, the time slot would be extended. It would clearly at first be a case of working things out to suit, but I was also told they wouldn’t really be able to sit and have a long chat, as they have tight routers to work through every day.

The other system, which will require another visit from someone else in about 6 weeks, who will go through all that we did on Friday again, then a claim would be placed from which we would be allocated a budget. It would then be up to us, to choose which company we would prefer to supply the care that I want, clearly their budget would always need topping up by us. It would mean that once we have the company we prefer, we would hopefully have more say about who was here and the amount of time, I needed them for, but again, that would depend on cost as well. She couldn’t tell me a great deal more about it, just that outline.

Even though we are unsure of the cost, we are starting with the first system this week. I am to have two visits each week, starting this Wednesday and the following Sunday. I have asked for help with showering, as it is the one thing that I am really struggling with and I’m not comfortable asking Adam to help with parts of it, plus of course, Adam is at work during the week. I don’t think I could handle having a more than two showers, but I honestly, would like to have more than one, especially during the summer.

It is amazingly difficult and tremendously emotionally exhausting to admit that you need help with something so personal. I think that I cried from half way through the time we were in the kitchen, right up until almost the time she left. There is little that I can put into words about how that feels. It is a bit like saying I have jumped over that line from still able in some ways, and on to what I know is a slope that can only ever go in one direction. I am going to let a total stranger into my home and have them help me with something that is about as intermit as it gets. Oddly, the hardest bit without a doubt is that mental leap, like stepping backward into childhood. It’s hard, so damned hard to do. I just want to scream, “How have landed up here?” not one, nor just loud enough for someone in my home to here. I want to scream it thousands of times and keep screaming, until every single person in this world, manages to give me a reasonable answer. Life shouldn’t be like this. My life shouldn’t be like this, and it doesn’t matter how much I know it’s just the way it is, or who dares to tell me that, I still don’t want to accept it, I just know that I have to.


Please read my blog from 2 years ago today – 06/06/2014 – A simple lesson

I am totally behind with everything this week, nothing to do with my health and everything to do with the TV! For a history lover and one who also is still learning about WW2, there is so much to watch at the minute, how am I supposed to choose between two things I totally love, reality and the past. I know even Adam can’t understand why I watch so many programs which seem to be about the same thing, well it’s…..

Facing facts

Putting on make up is something that I don’t do a lot, well when you’re housebound, there aren’t a lot of people to see you. Before anyone says what about Adam, well make up is one of his pet hates. He constantly mentions it when we are talking about women on TV, so my laziness doesn’t bother him. I actually find it quite funny, as he constantly comments on skirts being too short, tops too tight and faces caked in makeup, as all of those things, could have been said about me when we met. Sorry, I digress, when I was putting on a fine layer of powder and some eyeliner, about all I can manage these days without making a total mess of it, I made a horrific discovery. I had brought a small mirror here to my desk so that I didn’t have to stand in front of the bathroom one. Placing the mirror on the desk, meant that I could see the underside of my chin clearly and what I saw was highly depressing. So OK, yes, I had sort of noticed in the last year the first sign of jowls, something most women feel depressed about as it shows we’re aging, but I quite honestly hadn’t expected to see them so soon. The mirror showed me quite clearly the sagging that has started to show in my neck.

All my life I have looked young for my age, and although I had seen some signs of premature aging in other places, this one really upset me. I quite honestly couldn’t really make any sense of it, why there and why now? Not being able to walk and really exercise as I used to, well, I accepted the rest of me not being exactly toned. Then I realised the horrible truth, it isn’t just my body that is no longer exercised, neither are any of my facial muscles. Being housebound for 9 years has a side effect of my not talking very much, add in the fact that I don’t eat that much, well all those once toned muscles are heading south. It appears I have discovered yet another side effect of being housebound.

This, though, I believe I can fight back on. I may not have the energy to lift weights, but surely to God, I can manage some facial muscle exercises. I mean how tiering can it honestly be, just pulling faces for a ten or so minutes every day. Trust me, it is amazingly knackering! I honestly don’t think, that I had hit the two-minute mark when I started to sweat and feel as though I had just run around the block. Every time I tried to move my face in any way, just even a smile, it hurt. Life has moved into a place I don’t recognise. Yes, I know that if you suddenly start using muscles you don’t usually, they don’t like it, but come on, your face? I guess that if I am going to have the slightest chance of turning back time, I’m going to have to start out a lot slower than I ever thought. The things that this stupid condition has done to me, go way further than the surface, being disabled, is only the start of it, and it just keeps going, and going, and going.

The biggest lesson that I seem to be learning from this process is, it never stops taking. That doesn’t mean that you can’t change some things, make some things different from the way they are “apparently” supposed to be, and it doesn’t mean that I am going to stop trying to rectify my face, of course, I’m not. If I did, well if I did, I wouldn’t be me, but sometimes it just seems so unfair and so hard to fight against. When you are first diagnosed, it is just the major things that you fear, those things that jump out of all those lists of symptoms. You don’t know how much I would like to take all those lists, off all those websites, and rip them to pieces. Over the years since my diagnosis right the way through to today, it hasn’t been those major things that have upset me, it has been the endless list of little things, my neck issues being the latest. It could as easily have been, the day I found I could no longer cut my toenails or the first time I found myself feeling totally lost, in a place that I knew, any of them will do, as all of them make a mark in your life, that you didn’t see them coming. All of them hurt, all of them mark a change no one ever told you would come.

Today I feel a hundred years old and I probably look it, which I know that I don’t. But when two minutes of using your face muscles to do nothing more than what they should, leaves you knackered, well how else am I supposed to feel. Yet life goes on and after a good nights sleep, I will feel better, maybe even younger, but I’m just a little worried that I won’t be able to smile, talk or eat. Well, isn’t that what usually happens when you over-exercise muscles, they hurt so much that you can’t even use them the next day.


Please read my blog from 2 years ago today – 03/06/2014 – Still here

I can say already that this is going to be a day of discomfort, pain, and tiredness. It’s less than three hours since I got up, but already my backside is sore as though I have been sat here all night rather than sleeping, trust me I was asleep. In fact, I think I slept well, I don’t remember waking at any point or of even having one of those dreams where you know you are more awake than asleep, as the dream is more a commentary on something that has happened at some……

Step by step

Taking time out from blogging is starting to open up my life again. There has been a list of things waiting to be done, that I just didn’t have the energy to do. The other day, I started work again on what now feels like a long ago dreamed up list of the things that I need to know to put my mind at rest, when it comes to the subject, of my future. The other week I had broached the subject with Adam, about getting in contact with Social Services in regard as to what help they can and can’t give us. I did write about it, but it took a second discussion and my finding both the email address and phone number, before Adam contact them, at the beginning of this last week. Several phone calls later, and we have managed to arrange for someone, to come here and talk to us. Someone will be coming out to see us, at the end of next week, which just proves what I suspected, nothing happens as quickly as we want. If we had waited until it was to us an emergency situation, we would have been struggling for weeks. The next on the list, well it was, of course, sorting out the issues with the grave that I thought I owned in Aberdeen. Somehow, when my son died, the documents for the actual plot, landed up in my ex-husband’s name. To my surprise and delight, when my daughter took the documents to him, he too was shocked and signed all the papers needed, for the name change to take place. The next step would be really simple for most, but not for me. I had to make a phone call. This time, I knew that it had to be something that I did, and not something I could hand over to Adam.

Despite all of the undeniable facts, that I am heading rapidly in a downwards direction, Adam is still finding doing anything that is connected to my death, extremely hard to deal with. I didn’t need to talk to him about that fact, so I knew that regardless how I hate the phone, I had to make this call. I have to admit, that it wasn’t just this dragging exhaustion, that was stopping me, but also the fact that I somehow had to talk to a stranger, and worse still, one I couldn’t see. Without a doubt, it had to be done on a good day, even then, I knew that I was going to have to work up to the point, when I could actually lift the receiver, and dial the number. I tried a couple of times last week but just couldn’t do it. I just knew they were days when things weren’t as good as they should be, so I waited. I know that might sound pathetic to many of you, but it really is something that is that difficult, for me to do. I eventually managed it on Wednesday afternoon. It lasted no more than five minutes, but I was so glad to hang up and take a breath equal to the one I took before I committed myself to action. They hadn’t mentioned it when I phoned to get the forms, a conversation that found me in tears within seconds of saying “Hello”, but still I wasn’t that surprised to discover there would be a charge of £34 to redo the documents. I actually made it right through the call without a single tear, just a lot of stuttering. I actually can’t remember when I last wrote a cheque, but fortunately, I had had the foresight to put my chequebook where I could and can still see it. Which proves I do have a brain occasionally.

Adam took all the paperwork with him when he went to work, so he could post it for me. That evening, when we were just sat watching TV, he turned around to me and said, “I was thinking when I was at the post office, how weird life is. Just 16 years ago, we were happily living in our first flat together, and there I was posting off documents that referred to your funeral. How has this happened? No one should be arranging their wife’s funeral while she is still very alive.” I thought for one horrible moment that he was unhappy about what I was doing, but it turned out that it wasn’t that close, it was more a case of no matter when it just wasn’t right. As I said to him, though, you just need to watch the TV adverts to see that these days, people are planning and paying for their own funeral all the time, it is becoming more the norm, just as it should be.

Quite rightly, both of us actually still find it a hard subject to talk about freely. We do when circumstance brings the subject up, but it’s not a regular topic of conversation. Like most things, though, the more we do, the easier it seems to get. but no one wants to think about the actual event and all the stuff that surrounds it, it still feels a little like talking about it, means that we want it to happen, which of course, we don’t. I know that when I sit here writing about it, it does read as though I am totally at ease with all of it. I am no more at ease with it, than you are about your own death, it’s just I am the type of person who wants to remove all the added stresses of my death, from Adam. I will never remove the pain he will feel, but if I can make the rest easier for him, then I will. Death is a fact, and it does have to be discussed and I clearly believe that things have to be organised and arranged in advance. If I hadn’t started looking into it a couple of months ago, we wouldn’t have had a single clue, that my son’s grave was in my ex’s name. If that hadn’t been discovered until after I died, it would have caused huge issues. Once I have the documents all correct and legal to use, the next step is to once again, contact the funeral directors, and get it all signed and sealed ready for the date it will be needed.

There is for me a strange comfort in getting all of this organised now. I’m not looking forward to the meeting with Social Services, but it has to be done. We both need to know what they can and can’t do for us, and even just getting the first contact in place, so when things get worse, they are there, no hassle, no assessments, just hopefully a phone call and life will go on. Once that one is done, the next and final one on my list is to contact the hospice here in Glasgow and talk to them about their possible role in my life. Thing are moving slowly, but they are now moving.


Please read my blog from 2 years ago today – 29/05/2014 – Out of Control

Another drug is now being prescribed for MS in the UK and once again I have received several really thoughtful tweets from people to let me know about it. I actually had for once beaten them to it as someone mentioned it months ago, of course, I checked it out straight away, only to be once more disappointed as it is for the treatment of relapse-remitting MS and of no use to me at all. Sometimes it nice……

Through hell and back

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……