The phone rang yesterday lunchtime and it was the Dental Hospital calling to arrange my appointment for Monday next week to take a look at the ‘Thing’. Unfortunately, it hasn’t disappeared, so I still have to go and let them decided what it is and what to do about. I am still holding onto the chance that after 9 weeks of living in the back of my mouth, that it might just get fed up and leave, on the good side it hasn’t been oozing, that I have noticed in the last couple of days, but it isn’t any smaller either.

When Adam came home for his lunch we did a quick search to see if we could find a letter from a previous appointment, I know from arranging an ambulance with a stair climber before that they always want my “CHI” number, unbelievably in a house filled with all kinds of medical stuff, we couldn’t find any of them. I actually still believe we have some, but they are in one of the big chests that sit in the bay window, Adams lunch is only an hour and that included walking here and back so time was limited, especially as he had to have his lunch. We decided just to wing it as I was sure they would be able to find me on the computer system from my name and address, it might be slower but there is always a several ways into most databases. It wasn’t me who was going to call this time, Adam was going to set it up for a change, we were hoping that if he called and said he was my carer that they might just once speaking to him, actually allow him to come in the ambulance with me, it didn’t work. The whole system is nuts, I am not even allowed to bring my own wheelchair with me, which with all the floors being totally flat and uncarpeted, I would probably be able to manage to move around by myself, slowly I admit and it would be totally draining, but I would be able to do it. Without my chair I have to use one of the ones supplied by the hospital and they have to be pushed by someone, but of course I won’t have anyone with me, so it will take up the time of someone in the hospital, probably a nurse as the Dental Hospital doesn’t have wards so no need for porters. The whole system is mad and for someone like me or worse still someone with say advanced dementia or Alzheimers, totally terrifying without someone who knows how to put them at ease. My reactions right now to the whole thing is bad enough, the NHS are supposed to be able to deal with all these sorts of issues, but to me, in this area, they are failing totally. Adam made the call but it was just as same as when I call them as he was too told that he wouldn’t be able to go in the ambulance, he has managed to get time off to go with me and right now the plan is that when the ambulance arrives he will call a taxi and head there on his own to meet up with me. There and back it is going to cost us about £20, to me a total waste of money, but I know he is right, without him by the time I get home I would be in a worse mess than having him with me for most of the time at least.

Just like yesterday, I am still so tired that I feel like I could lie down and sleep for a week. I slept well last night, the full time without a single break, but it will take more than just one night to pull me back round to normal. I know that this is one thing that the healthy find hard to get their heads round, because unlike the healthy we don’t just snap back to normal after the following night sleep, it takes days for us to recover. I just sat here for a few seconds trying to remember the last time that I did just pull round back to normality after something small destroying a nights sleep and I can’t. It is almost as though our bodies no longer know what the correct reactions to anything is any longer. Getting over something so tiny and so insignificant has become like recovering from a serious illness. We all know what it is like having been ill with say a bad dose of the flu, you know you are better, that the illness has passed, but it still takes a few days more to be back to your normal self, well that is what 4 hours of disturbed sleep does to me. Place that across your whole life, every small thing that you are held up with and takes longer than you think, every chore that take more energy or strength than you expected, the stress that may have caused by all those irritations of life that the natural response to is being tired, add up all of those occasions you can think of say in the last week. Now add up your recovery time from all those things, how long it takes for muscles to stop aching and for you to stop feeling tired, multiply that by 20 and on top of the total, add in that daily life is 10 times more tiring as well. You have an idea what it was like during most of my adult life when I had kids, I was working and part of the normal everyday world and that was without the flares. Now take your total and multiply by 50 and daily life by 20 and you start to see what it is like for someone like me, but it doesn’t matter if it is my early life or now, just remember that it is only tiredness I am talking about, not the pain or any other symptoms.

Sleepy spells, stupidly it was me that started calling them that, “I’m just in one of my sleepy spells”, I can hear myself saying it as I have said it so many times. It’s odd how we do that, turn things that are actually important or hard to deal with into nice sounding silly phrases or name. I suppose it is a way of trying not to distress others, by making it sound trivial, something that is kind of soft and fluffy, well that’s how sleep sound, cosy and comfortable, but living in a permanently tired state is not fluffy in any way. Exhausted or not, life goes on, you can’t just stop and go to bed, you have kids to feed, money to earn, people to see and a life to live, so we all push on and on until we can’t and we are forced to stop. Sleep alone isn’t the answer to this type of tired, it helps, but on its own, you don’t recover, everything has to be stopped or limited, slowly you recover to a mild everyday tiredness, a level that you can once again function. It took nearly 30 years for me to stop, to give up trying to live like everyone else, I stopped everything, but I am still tired all the time despite doing almost nothing and I am still calling the heightened time “sleepy spells”, maybe I should stop that and just call it exactly what it is “Knocked out and Knackered”.

Please read my blog from 2 years ago today – 16/10/12 – Triggered thoughts

When I am feeling as useless as I do now, I find myself doing a lot of strange thinking, which I guess I have to explain. Strange thinking to me is when my mind starts to coast on its own and jump into things you usually wouldn’t know or believe you are actually bothered about. It is a little like…..