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……

Dreams caught in time

Having just enjoyed one of my favourite treats, oatcakes and as it is breakfast I ate them with ginger marmalade, I am now suffering the problem of having not been to the dentist in 8 years. No, I don’t have toothache, just two broken teeth that everything of that texture seems to take pure joy in lodging themselves in and can’t be shifted by my tongue alone, probably why it used to be fashionable for toothpicks to be in every home, they were needed daily. I know there is a dental service available at the local hospital for people who are housebound, it has to be within a hospital as to get there clearly I need an ambulance with a stairclimber just to get me out of here and home again and they are only available if you are going to a hospital. I find that so maddening, it is almost as though by being housebound, we suddenly don’t have the same right to health and is the reason why I don’t ever really see my GP. I don’t expect them to assist to take me out just for the hell of it, but surely seeing our GP’s and dentist should fit into the same bracket as seeing a hospital consultant, it is after all, still our health. Either way, I still might not have been to the dentist any sooner as I so hate that stair climber and the whole process as I have said before, of just getting ready to fo anywhere is draining and best to be avoided if at all possible. Just sitting here thinking about it has made me decide that I can live a bit longer with strange gaps where tooth enamel once was.

It’s odd how all our values change once we are ill, so many of the things that we held as important and life essential, seem to just fade and become a dusty memory and of no value at all. Chronic illness doesn’t just destroy our health, it destroys our dreams and diminishes our belief in not just ourselves but in everything that once seemed so clear and so simple. When Adam and I got married, I knew without the slightest doubt that our dreams were very different from each other, not because we had spoken about them, we were still at that stage of love when words aren’t needed as be felt we understood the other without them. I didn’t need words to tell me what I knew was a fact, because I was 38 and he was 21, I knew his head was filled with wild hope about riches, success and a long extravagant life together and all those other fantasies we believe will just happen at that age, mine was filled with stability, planning and financial security. It was Adam who wanted to buy a house, I was strongly of the opinion that they were nothing but money pits and unless you were going to have children to pass on your home and money to, not a great move at all, but I couldn’t say no to him, his wide-eyed fantasy was possible, but on my terms. I refused to have a huge mortgage around our necks, it had to be affordable and it had to mean we could still have a life, not one spent living on baked beans and water. So we bought our flat, the one I am now so much in love with and he wishes I hadn’t given in over, as now we would be housed somewhere more suitable for me. I didn’t have the time to secure our future, to build up a nest egg that would mean I could retire and enjoy a life with Adam for as long as it lasted, or the slightest chance of securing a future for him once I was gone, as within 2 years, I was too ill to be allowed to dream.

Being diagnosed with a progressive degenerative condition takes away all our options. From the day I had to walk into my office and tell my employers that I had PRMS, I also knew that was the day when I lost all power over my future. I lost the biggest and strongest bargaining position that employees have, to leave and find a new job if they don’t pay you what you are worth. Other than the annual increment that every employee received, I never had a pay rise from that day on. They knew just as I did that I couldn’t just leave and get another job and as my health got worse and I needed at first a stick, then a wheelchair, the harder they drove to get every single penny of what they paid me and more. 10 years on the same wages meant that I was miles behind what others in other companies earned for doing half what I did and every last dream I had was snuffed out. Yes, there are laws out there to protect those in my position, but use them and it goes without saying you really will never work again and I needed I thought to do everything I could to build up our home and make it the best I could, while I could. My ambition and only one became to work for just one more day, week or month, to have a wage for just one more day, week or month, that was my only focus, not my health or what was happening to anyone else, I had to make things as perfect as I could right then as I might not be here tomorrow to do so.

I no longer had or have, any dreams that look any further into the future than those same days, weeks or months, at least not for me, my health has taken them all away. Becoming housebound whilst still working, put me in the oddest position, but one that allowed me to live in a very different way and changed my future even more. I don’t know why but it gave me back a strange feeling of control over what was happening to me, a limited life had it’s advantages and it’s bonuses that I wish I had seen long before and once I was made redundant and eventually I had totally broken that fear of not earning a wage again, I found freedom. Once there is no possible future left, well oddly other than depressing, it is actually liberating. My health has taken every single thing that we have in our heads about what having a future means and replaced it with total freedom. I have lost the concept of weekdays, weekends and holidays, I no longer have to think beyond this hour as what can the one after it hold other than more of the same, freedom of thought and of heart. No matter what we like to believe, true freedom of thought doesn’t exist when we are locked into the world of work, a world we are told is our right and what our dreams can be achieved through, but it’s not.

My memories may be muddled now and my body crippled but I don’t remember ever feeling as free as I do now. I don’t have the money to do any of the things I once thought important, I don’t know where the money will come from just to cover the bills at times, but we always manage somehow and most importantly we still have each other. For everything that the outside world would say I have lost, I have gained something in its place, I just wish that I didn’t have to live in pain to have it. Adam is approaching the age I was when we first met and he has suddenly discovered the ambition for financial security, I truly hope that he too will eventually understand the freedom I feel, but without any of the pain or physical confinement.

Please read my blog from 2 years ago today – 25/02/13 – Something ODD? 

Well an hour ago I know I had something that I needed, really needed to write about today, I just wish I had the slightest idea what it was now. Yes I know it is a constant problem and one that you would have thought I would have taken the logical step of writing things down when they are in my head, but I always forget to do it……………

A "service", it’s not

Right now I am already exhausted, but as I woke up that way, it really isn’t that much of a surprise. Yesterday was yet another NHS farce, not the medical side, no that was great, but it was once more the transport. They arrived around the time I thought they would and with the confidence that everything possible had been done here I actually left the house with some confidence and ready to just get it all over with and to get home again. As always getting down the stairs was horrendous, not being a fan of being flung around like I was on a fairground ride, the journey on the stair climber was hellish. I reached the ambulance feeling nauseous and without any of the brightness I had felt just 10 minutes earlier, the attendants as always were bright and chatty, but with the way I felt, just that bit too chatty. When you feel like throwing up, what you really want is silence and fresh air, what I got was endless noise and extreme heat and stuffiness once on board. They had allowed Adam to come with me, with the usual “well don’t tell anyone” attitude, but he was there with me, we had explained to them that I need him with me, as without him I get anxious and agitated, I had no fear that the NHS would see no physical harm come to me, but this is a brain damage and without him, well I doubt I would hold it together should anything unexpected occur.

We weren’t going straight to the dental hospital they had to pick someone else up and drop off before we went there. I don’t know if you have been in an old British ambulance, they use the out of date ones for patient transport and their suspension isn’t quite what it was, nor are the roads if I am being fair, it was a combination, but it bumped and swayed it way to the next pick up with me feeling more and more sick all the way. Pick up made and it was off to the hospital they were going to, but we hadn’t been moving for even five minutes when I had to ask them for some fresh air, oh and a bowl. Feeling sick in public is one thing, throwing up is another, it just isn’t something you want others to see, so I sat there fighting, not to hold on to anything as I hadn’t eaten my lunch as I knew what the stair climber could do to me, I didn’t expect the ambulance to be worse. Luckily the air did the trick, but I can’t remember feeling so relieved for a long time, when we finally got to our destination and I was being wheeled through to wait to see the consultant. As is always when you are using hospital transport, you are put to the front of the cue, that way they rush you through so that when they return you are ready to go and it was all going so well. Glasgow dental hospital is a teaching hospital and you always see a student first, they make their conclusions and then the consultant appears to give theirs, both concluded the same thing, I had had two ulcers, with no clear reason for their appearance which had left damage not fully healed as they could see what I could only feel. The consultant wanted me to have a new type of x-ray, I had never heard of, you sit with your head not tightly clamped, but enough to stop you moving, the machine moves round your head quite quickly and quietly, getting one long x-ray of all your teeth. Nothing was found, it is was just to make sure that there were no wells of pus waiting to come to the surface, the only thing I did actually fear as the skin is taking a rather long time to settle back to it’s normal shape.

They had completed the x-ray and we were just waiting to see the consultant when the ambulance returned to pick me up, they wouldn’t wait, saying they weren’t allowed to, but the receptionist was calling for a replacement to take us home. It was just after 3pm, so I thought no more of it and we chatted to the consultant about getting me on to the list of a dentist who would be happy to come to our home, I didn’t know there was such a thing, so I was happy of his help. I didn’t remember until today, I did have a dentist here about 5 years ago, who did come to the house and look at my teeth, but then I was so terrified of being carried down the stairs, I refused to go the hospital and have the work done, I preferred to just put up with my broken teeth. Stupid, I know that now, but well at the time I didn’t know about stair climbers and the last time an ambulance crew carried me down this many stairs, all I remembered was the feeling I was going to tip off their chair and fall the rest of the way. We returned to sit in the waiting room once more, having checked with reception that the ambulance was booked, by this time it was just pass 3:30, the start of what was going to be a very long wait.

The Dental hospital isn’t a hospital in the normal sense, it doesn’t have any wards and apart from a couple of emergency dentists there until 10pm, the whole place shuts down at 5:30 every night. Yes we were still there at 5:30, and 6:30, in fact they eventually picked us up at 6:45. No one at their control centre seemed to be able to give a straight answer, every call they made the answer was the same, they would be there within half an hour, over and over again, but each call had a new excuse as well. The duty nurse, the nurse manager and one of the dentist, all who should have gone home at 5:30 where stuck there with us, and each took turn to come along and talk to us for a short while. I have to say it was the consultant that I most enjoyed getting the chance to talk to, as there I was with a captive representative of the NHS, I had the chance to put forward my views and suggestions as to how both the patient experience of the housebound and the NHS budgets could be improved, with the use of a system like skype. In fact we spoke about a huge range of ways that the systems could change with more savings, rather than costs and even about the attitude of brushing those of us who don’t make their stats look good to one side. If we had to have a long wait, well that was the pure upside of it, as I really got the feeling that we parted with him leaving with his brain ticking over on things he had never thought about before, he may be a dental consultant, but it doesn’t do harm to plant seeds where ever we can.

The journey home was the total opposite from the one there, no being thrown about inside a juddering ambulance, well yes a couple of times, but not constantly, there wasn’t any discussion as to whether Adam could or couldn’t come in the ambulance with me, he was invited in and made as welcome as I was. About half way through we were sat at some traffic lights and I looked up to see a huge concrete object above us, I turned to Adam and said that I had never seen it before, he asked what and I pointed again. It is the not so new now motorway that passes over part of Glasgow and has been carrying traffic for four years, the last time I had been that direction they hadn’t even started on the foundations, I had been watching it’s beginnings a few miles west as both sections where on my route to work. Just seeing it truly reminded me just how much the world has changed while I have just been sat here in my living room. You know it’s happening, but somehow you don’t even think about the day to day changes that everyone who lives around me sees without even thinking about them as they are just that to them, every day.

By the time we were home I felt really ill, washed out and exhausted, but my day wasn’t over, I still had things to do, if I wasn’t going to make today hell as well. What should have taken me just 20 minutes, stretched itself out to an hour as getting my brain to work was hard, it just wasn’t wanting to work. Even when I closed my PC down again, I still couldn’t go to bed, something made me just want to sit in normality, in front of the TV doing nothing and thinking probably less. Not surprisingly, when my head hit the pillow my brain shut down almost instantly and remained that ways without any argument from the rest of me at all.

This morning, well I don’t feel much better than I did yesterday, I had said two weeks ago that going to the hospital wasn’t needed and was going to be more hassle than it was worth, I just wish others had listened to me. The only person who gained was Adam as he didn’t believe that the ‘thing’ wasn’t worth bothering with, he of course had decided it was something major, so I am at least glad that the truth is known and I was right. I though will be paying the price for several days I believe, as this journey to hospital has taken far much more out of me than any of the previous ones, I am not just fatigued or tired, a day sitting in a wheelchair with spasms being triggered due to the position I was sat in, has left me with muscles that don’t normally hurt, aching and internally bruised, both in my arms and my legs, my legs being the worst. Being unable to stretch my body all day, has left me with new lines of pain in my guts, everything that can ache from my hips to my shoulders is delivering varying amounts of pain and in many ways, I just want to disappear, even from myself. I am sure that those responsible for what went wrong yesterday, don’t have the slightest idea of what they do to people, what is the problem with someone having to wait for 4 hours, well if we were fit and healthy, none, but we need the transport because we are anything but. I didn’t put myself into their hands for a giggle or a little day out, I did it because I had no choice and I needed their help, what I got, well yes they took me there and back, but I just wish they could understand the damage now done and the time it will take to return to normal, maybe someone should put them through it and see if they think it is an OK level of service.

 

Please read my blog from 2 years ago today – 07/11/12 – Control of me

I took sometime yesterday to sit and think through what happens now, it is clear that somethings have to change as I really am getting worse and worse when it comes to all the cognitive issues. I haven’t spoken to Adam about this yet and I know he will read this tonight but I am hoping to find the spot to…..