It’s going to be one of those odd days, I know it’s just started, but I can feel it already. There is something about that first hour of the day that somehow does one of two things. It will warn you of what lies ahead, or it will trick you into a false sense of security that you’re actually going to have a great day. I used to put those feelings down to how well I had slept and how much I had ahead of me on my daily ToDo list, I was surprised to find that work actually had nothing to do with it and sleep very little. Even though it is Friday, Adam is snoring gently on the settee, he isn’t starting college until late today, so the fact he actually got out of bed was a bit of a surprise. Usually because of my strict daily routine, what time and where he is during the morning has no impact really on what I do. This morning, this morning for the first time I can remember I wasn’t at all pleased to find out that I could have had at least an extra hour in bed. If he had only mentioned it last night, I would have asked him to reset the alarm and let me sleep just that bit longer. When he told me this morning, I was at first angry with him but I quickly realise that he had no reason to even think I would be thinking that way.

I have noticed all this week that I have left over a desire to lie in bed from last week. I understood it when I was really ill, but now, well I can say with my hand on my heart that I am a lot better, but still I want to sleep. I can’t be sure yet if it is just the fact that my body is still run down, or if I am not actually quite as well as I would like to think I am. I know that they could be one in the same thing, but I really did feel on Tuesday and Wednesday that I had a real energy inside me, the sort that only comes with health, not from just feeling better than the day before. Yesterday, it all crashed back down in a gentle way if that makes sense. As the day went on my desire to just sleep grew and grew, all I seemed able to do was to cough and to feel overly warm in that sticky way that normally goes with being ill. I kept putting it down to not having enough sleep the night before, but I was doing so very much aware of the fact that I didn’t actually believe it myself. Right now, I feel like I did this time two weeks ago when I was on my way downwards. Then I was telling myself all sort of things in the hope that all of them were wrong, but that’s something I think comes with chronic illness. Plus, of course, I was still on that high from seeing the consultant, when I was still under the belief that his ideas might just make my life that bit better. The consultant gave me one good week, one week on a high before my body took exception to one of the new items in my diet and went into a spin.

After spending so many years ill, you would think that you would build up this veneer that doesn’t let you be pulled into false hope. I guess because it was coming from a doctor I didn’t see it as false, I saw it as a true chance, the opportunity if not to be well, to be just that bit better. I stupidly allowed my hopes to be raised and yes, I should have known better. The past has shown me over and over that at best the doctors might just be able to keep me steady for a while, but not one has ever managed to make me feel better, even for a short while. I wanted to believe, I’m no different from anyone else, the one thing I long for is to feel better than I do now, however that now is. Yesterday I was sat here at one point and reality sort of slapped me in my face, I wasn’t going to get better. I might not feel like death warmed up, but I wasn’t going to be without that pain in my stomach, the diaphragm spasms, the struggle to find air or any of the pain that the rest of my body is constantly in. In fact, I have realised that in a lot of ways, that attempt to through diet to keep my body clear of build-up and the pain that it caused, had being shown up for exactly what it was. Being curled up in bed dying for over a week, meant that I really didn’t eat anything, just toast and milk. I kept trying, but I just felt sick, the odd thing is, I am still right through to this morning, still going to the loo and opening my bowels. It doesn’t take a genius either to spot that what I am passing is still the food I ate when I was working on actually eating Psyllium. My body is still more than two weeks behind, things have been moving with ease for the last two weeks, which is better than straining, but it still wasn’t moving any faster. Nothing has changed as far as the nerves working on moving things through me, they are at the same virtual standstill. On the good side, well the good side is that I am sure I am almost empty for the first time in months, but that happens when you don’t eat.

I can’t be sure if it is the Psyllium or the other foods that I had to force into my diet to make it edible that actually triggered the exasperation, I doubt that I ever will know. What I do know is that I still feel sick at the idea or eating and after anything that I do sneak inside me. I know that food and I have never been the greatest of friends and I know that I can’t live without it, but right now, I am both being made ill and thanks to the last fortnight, now have a new wariness towards food. I feel as though I am very much trapped in a lose-lose situation, with the additional fact that no matter what I do, I don’t seem to be getting any better and living in danger of just getting worse again.

I slept well last night, thanks to the cough bottle again. I did try to sleep without it, but my body had other ideas both at 11 pm and 4 am, both fixed with ease and both led me back into a deep sleep. I so wish though that Adam had told me about his late start, as I feel weak and in need of sleep, just as I did all last week, I just want to hide in my bed and sleep the hours away. My chest is jumping madly from water to gunk, nothing, not even my cigs are giving me more than a few minutes without the desire to cough. You don’t know how much I wish that I could go back three weeks and be there sat in that consultants office, armed with all the knowledge of the last three weeks. Right now I don’t know if I am ill, or just chronically ill, which it is that has the biggest hold over me is impossible to say. I don’t understand enough about what has been happening to my lungs, or how two things that I can’t put together with ease in my mind, actually came together to leave me feeling this way. Health used to be simple, either you had it or you didn’t, but when you have a collection of medical conditions that are fighting each other all the way, it is a war.

I know that I said it the other week, but right now there is nothing I would love more than to have one doctor, one person who was in charge of me. Each specialist knows his own area, but the consultant I saw last month knew nothing about PRMS, COPD, Fibro or any of the rest of them, if he had, he would have foreseen the possibility of what actually happened. I am more than happy to put in the work, the tests and the trials to find what my body can take, can do and even the possibility that it might all go wrong, but only if I had a person there to turn to. I am not up to doing all this alone any longer, I don’t have the physical strength or the mental agility to stay one step ahead of it or to keep taking risks that might just make me worse. Without that help, I am left feeling somewhat lost, unsure of who I should listen to, what I should try and if there is even any point.

Read my blog from 2 years ago today – 24/06/13 – Finding the joy in living

They say that life only doles out to you, what you can deal with and to an extent I actually think there is something in that. But I think there are two things that make much more difference to your survival ability, the first and I now think most important is simple acceptance, not giving up, acceptance is a very different thing. I have from where I’m not sure always had an attitude of well this or that has happened, I can’t undo it…….