I woke just before 5 am, just long enough to check the time and drift off again. Sleep wasn’t long lived as suddenly I was aware that there was something in my mouth. I could feel it sitting right at the back of my mouth almost over my throat, it was large, not huge but large enough that it could easily have choked me. I managed to move it first to the side of my mouth and finally to the front. It was definitely soft, almost like a marshmallow and I could think of nothing that could just appear like that that was anyway similar. I put my hand to my mouth and carefully put my fingers to it to remove it. The second I touched it, I knew what it was, it was an earplug. Somehow in my sleep I had clearly pulled it out of my ear and probably decided due to its size and cylindrical shape that it was a sweet and just popped it into my mouth. I know that my memory is bad and that due to my muddled mind I have done some rather stupid things, but this one, well it’s taken it to an almost new level, I say almost as something similar happened last week. I manage to get up without taking my earplug out of one of my ears and didn’t notice it was still there until I was sat here. I took it out and just put it on the desk to return to the bedroom later. I actually had to get up and put it away as several times I had caught it out of the corner of my eye and had the same thought, there’s a sweetie. I had even reached out a few times and when I touched it, remembered its true identity. Why there should be a sweet on my desk, who knows, as there never is. Clearly somewhere in the back of my mind, I have decided that they look like sweets but trust me they don’t taste like them. Luckily, I don’t often take them out of my ears when asleep, but I guess it’s just one more danger in my life that I have to be aware of. I was so lucky to be woken by the odd sensation, a few seconds later I would have been choking. How I stop it happening again? I don’t have the slightest clue.

The doorbell just rang and it was the bag for my wheelchair arriving. I haven’t opened it yet as it has tape and stuff all over it that Adam finds a lot easier to deal with than I do, but it is at least here at last. Having said that, I didn’t actually expect it to be here until next week as there was an email from Amazon the other day saying that my payment had been refused. I was shocked as I knew without a doubt that the money is there. I went to their site to investigate and the reason wasn’t just clear, but glaring. I had entered the wrong expiry date. They, like many sites, use one of those scroll-down systems for picking the month and year. I had either somehow put in the wrong date, or more likely scrolled down, clicked and without checking that the date had held, moved on. I seem to be making more and more of those silly little errors. I don’t know why, but the sillier and smaller the error, the more irritating it is. Like the fact that the burn I did several days go and had looked after so well, just had the swollen bubble scrapped across the box that arrived as I tried to juggle with it in the doorway. Now it’s stinging and looking worse than it did this morning. It took two days to swell and develop the blister, I hate to think how long it is going to take to heal over and stop looking so angry. I know I have said it loads of times, but that won’t stop me from saying it again and again. Website designers have to start taking into account that there are people using their sites with poor eyesight, poor dexterity, and half a brain. OK, they can’t do anything about the latter, but they can about the first two, just make things bigger! Why do all these date selector and drop downs have to be tiny and or fiddly?

Yesterday, I discovered that having my nebulizer in the living room, isn’t such a good idea. I had gone for my nap and I woke up after maybe 40 minutes at the most with a searing heat in my right lung. It felt as though someone was putting weight no it from the outside and breathing was shallow and sharp short breaths as there was nothing else I could manage. I decided to gibe my nebulizer a try and headed for the living room. When I got there, I discovered that I wasn’t the only person having a nap, Adam was stretched out across its entire length. I had no other choice than to wake him, it is anything but an abnormal position for him. During the weekends, he frequently will doze off there and most nights he spends at least a few hours asleep there, before joining me in the bedroom. The result would mean that I would be waking him up both night and day by needing to use it, something that is hardly fair on him. Clearly the bedroom is out of bounds for exactly the same reason, and as yet, I can only come up with one other place, the dining area. I discounted it due to the fact that I would have to get out of my wheelchair to reach it, as my chair just wouldn’t fit through the gap to the dining area in the kitchen. It’s not ideal but when you live in a small flat, ideal isn’t always possible. I have to say that much to my surprise, though, using the nebulizer did actually make my breathing easier. I guess that even when my PRMS is the cause, which I don’t have the slightest doubt that it was, that it helps to open up those tiny tubes to compensate. If though I were to use that as a reason for puffing away on Salbutamol, I would have been on it nearly all the way through yesterday afternoon and evening. My diaphragm and intercostals were in one of their definite moods and simply refused to relax and stay that way. I guess for now, that it is trial and error, I will eventually work out when and what will work best for me.

I suppose because I was more intent about writing what the result of my visit to the hospital, that at the time I didn’t write about some the consultant said that I fear is true and sad at the same time. It was when we were discussing the fact that my Dr didn’t come out to see me, nor that he sent me to the hospital. He said that there was, unfortunately, a truth about medical care, if not life. What he said was “These days it is those who shout the loudest, rather than those who need it the most, who get the care they think they need.” I had never really thought about it, but I find it so sad that our world has dropped to that level. I have no doubt that it is true, as both Adam and I are by nature quite and polite. Don’t get me wrong, I can get angry along with the best of us, but I was always taught you don’t shout at Doctors. In fact, I was taught that you don’t even question them, these days I do, but still normally after the fact. I knew when he said that that he had read us well and knew that we had spent 5 days worried and wondering exactly what to do for the best. There wasn’t a single day that either Adam or I brought up the subject of whether or not I should be in hospital rather than at home. Neither of us did anything about it, as both of us also kept saying, “the doctor knows best.” How is it that we have landed up with such a selfish and sorry world? I know for a fact that this isn’t the world that I grew up in. To me if someone is truly ill, they shouldn’t have to shout about it. In fact, I have very much come to the conclusion that those who shout are the ones who actually least need it but get it just to shut them up.

Is it wrong of me to expect that when your medical professional knows your history, should they not treat you based on that and that alone. My GP is well aware that I don’t run to him every few seconds, I expect I am probably one of his chronically ill patients he sees and hears the least from. I have after all only seen him once in 8 years. So when I do pick up that phone and ask to talk to him, there is something really wrong. I am not getting at my GP by the way, I am just using this as an example. As I fear that if we had called 999 and landed up at the hospital, that we would have been faced with the same attitude. We would have sat there quietly waiting to be seen while people who shouted and demanded attention, came and went. I do understand how our medical system landed up like this. I can fully see that no hospital or Doctors surgery wants loud demanding patients disturbing and upsetting everyone else. Nor do they want to have to deal with the modern love affair with lawyers, being sued isn’t something anyone can afford, financially or reputationally. Without examining Mr. Shouty, you can’t be sure that he isn’t dying loudly in front of everyone. Gone is the time when you could just shout back at him and tell him to shut up and sit down, or get out, or better still, take him by the collar and eject him from the building. It truly appears to be the case that these days, being polite, considerate and a normal human being, doesn’t pay in any way. I don’t know the answer, but if this has happened in the past 50 years, I hate to think what it will be like in another 50.

Please read my blog from 2 years ago today – 13/09/2013 – Do I want to be here?

I at last have my safety net, a pack of morphine fast acting tablets that means I no longer have to fear that I will find myself in pain that I just can’t deal with it. It actually feels like a huge weight has been lifted off me, one that personally I will never understand why I have had to go through in the first place. I just hope I am not jumping the gun as I didn’t need……