Last night, I climbed into bed, tired and more than ready to sleep. The TV schedule on a Saturday, are constantly shifting, so I was a little later than normal, that, though wasn’t the reason I was so tired. I have been finding the last few days draining. When my mind doesn’t want to shut up and only full on distraction seems to be of any aid at all, my strength fails quickly. Despite going to bed as always in the afternoon, I don’t think I actually slept. I just lay there, with stuff flying in every direction in my head. When I was once more back in the bedroom, ear plugs in place and the last scraps of light blocked out by my mask, I feared that the night was going to mirror my last visit there. When I had been getting ready for bed, almost as soon as I entered the bathroom and distraction vanished, I found myself thinking about the final paragraph of yesterday’s post. I kept wondering if I had written the final sentence correctly. Was it fine as it was, or should I have actually worded it slightly differently, so that it ended with a question mark? Once in bed, I was almost decided that I should change it, as it is a question, will I be able to just accept, or is that more a blind wish. There was a tear running down my cheek, this was the first time in my life, where I was seriously facing my own mortality.

It’s easy to say, we all have to die and to sit and think about when and how ours might happen. That isn’t facing your mortality, that is admitting it, facing it is a totally different thing. Just like that image that appeared, so did that tear, without permission or thought. One tear, not the flood that you might expect, just that one. Tears won’t change the fact, or make it less painful, but it’s not the type of pain that requires them to flow. It was odd, I wasn’t happy about what I saw, or the fact that it is approaching me, but there is an acceptance already there that I don’t actually remember either giving or working on. Tears would be appropriate if someone suddenly put a gun to your head, as that isn’t what any of us expect, our mortality would then be imminent, mine isn’t. It’s still out there in the future, what has changed, is that it is in sight, that’s the only, but a really big change, it now has a tangible reality. Just as I know that the time where I will need more care, someone to come in and assist me to do things that Adam can’t or I don’t want him to, is closing in on me, so is this. Yet, it still feels like yesterday, that I was working, going out every day and living like everyone else. Yesterday, I got angry because my day had run away with me, and there was suddenly not enough time left in the day, to do all I had planned. Adam said something along the lines of “who cares about the hours, it’s the years that worry me”. I corrected him by saying, “No, it’s the hours that matter, the years take care of themselves”. The truth in that statement felt and still feels starkly real, the years will take care of themselves, as I won’t be able to take care of them.

Today, though, is about getting both mentally and physically ready for tomorrow. No, that isn’t some kind of statement that links in with the above, this is something totally different. Once again, I’m on my way to the hospital, at least this time, I have the novelty of visiting a different department, I’m heading for Dermatology. A few weeks ago I wrote a post in which I explained that I had found a mole on my back that was doing something rather odd. I had emailed a photo to my doctor and he doesn’t think that it is anything to be worried about, but that due to the change, it should be checked anyway. So once more, I am heading for the hospital and today, I have to shower, wash my hair, tidy up any that needs removing and generally get ready for being out of my bed an hour early tomorrow, which is when the real fun begins.

To anyone else it wouldn’t be a problem, to someone like me, the whole thing is an unwanted nightmare. The last time I went, I was lucky, I don’t think the Ambulance crew thought so, but I was delighted when there was no stair-climber available. Trust me, being carried in a chair, by four people, up and down six flight of stairs, is a hundred times better than that monster of progress. If you don’t like fairground rides, you too would hate the stair-climber. It’s violent rise and fall action, that pushes your stomach into your mouth, is enough to upset most people, and part of the reason for my early rise. I am lucky enough to have a supply of anti-nausea pills, I have them as nausea is, unfortunately, another symptom of my PRMS, but the tablets do take a little while to work. With the Ambulance possibly here as early as 8 am, I need to be dressed, fed, drug program completed and even my hair and a little makeup added for vanity. Yes, I do have a little of it left. It is going to be a long and tiring day, and like all the rest it is going to take me a few days to get over it, and that is if it all goes to plan. Our unfortunate experience says that it is quite likely going to do anything but. We frequently find ourselves through the doctor side of the day with ease, it is getting transport home again that makes it such a drain. Hours of just waiting, sometimes right into the evening, isn’t uncommon.

I just remembered to plug in two E-cig batteries so they are also charged and ready to go, the first tick off my to-do list. The last two times I have been out, I totally forgot about them. I have had to charge two batteries, not because I think we are going to be out long enough to use one, but because I haven’t used them for ages, I didn’t want to take the chance that one might die. All the hospitals in Scotland, now have a policy that says that you can’t smoke a real cigarette, anywhere within their grounds, not that anyone really pays any attention. Adam is perfectly happy to wheel me outside to where all the other illegal smokers stand, but my nicotines levels dip quite quickly, a side effect of constant availability at home. Here, sat in my home, I don’t need to worry about charging and all that fuss. I use one that works off a USB, so it always works perfectly, but not much use anywhere else. If there is one place that a nicotine addict needs their drug, it is sat waiting and waiting in a hard hospital wheelchair, no, I’m not allowed to take my own. Rules, rules, and more rules. I’m waiting for the day to arrive, when you have to take a test, just to be allowed in their precious property. At least we have managed at last to get them to bring Adam with me in the Ambulance, they have at last accepted I need him with me.

On one level, I fully understand why patients go to see their doctors, rather than the doctor coming to see them, but on another, I don’t get it at all. To get me there and back again will take two, possibly four, if the stair-climber isn’t available again, with between two and four Ambulance crew, twice over at this end. The cost of that alone isn’t cheap. Clearly, if tests need to be done, then the patient must go to them. But a lot of the time, it is a chat without even an examination, which could be done over the phone, and if an examination is needed, then the doctor could actually go to them. The hospital is a ten-minute walk, or more likely, a two-minute drive from my flat. The doctor with a nurse for security, could in one car, be here and back in under 15 minutes. If a patient can get to the hospital, without transport having to be laid on, all is well, but surely it would cost less if they had a monthly list of those who are not able, to which the doctor could be the one making the visit. Especially, if the impact of going out, is detrimental to the patients health. I know that would take joined up thinking, but if it makes sense to me, how come it doesn’t make sense to them? Isn’t it time that the NHS used joined up thinking and started to use things like Skype, to cut down cost and improve patient satisfaction. Yes, you can smash tradition to bits and start again!

Clearly tomorrow I don’t have the slightest clue if I will or won’t have time to write a post. Don’t worry, I will be back on Tuesday if I don’t, just remember where I am and don’t worry about me, I am fine.

Please read my blog from 2 years ago today – 18/10/2013 – Shifting the focus

There are always day when strange thoughts and feeling seem to take over, ill or not, I know that the human mind has a huge capacity to to invent and create things that should never have been there. I have always been that individual…..