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……