I am sure we have all felt it, that feeling of dread that fills you from nowhere and for no reason. All I know is the entire world feels wrong and it’s worst right here inside me. There never really seems to be a reason as to why I feel it, but it’s there and I just can’t ignore it. I have had this feeling of what I would best describe as impending doom for a couple of days now. Every minute has been spent expectant, just waiting, but nothing has happened. Living a normal everyday life isn’t that easy when inside you, you believe you are about to either fall over dead or the ceiling is about to collapse in on you. Your world is just wrong and you don’t know what to do about. It’s not as though I feel I am going to have a heart attack or an aneurysm, there isn’t a direction or location of this doom, it just there and keeps growing. Last night I was sat on the settee for the final hour of my day, tossing around in my head if or if not to ask Adam to call me an ambulance. I was so convinced that something was seriously wrong yet I couldn’t come up with a single solid thing that would make sense to anyone but me. You can’t call 999 and just say, “I think I am going to die”, not unless you want them to laugh at you down the phone.

I wish I knew where those feelings come from, as they are so strong and so compelling that it’s impossible to shake them off. There is this fear that something somewhere inside of you is telling you the truth and to ignore it, well the outcome is clear, yet every time it happens, I find myself alive the next day. I know I am not the only one who gets them either, as I mentioned them a couple of years ago and because of a plea I put in my post, one brave person said they got them too. But it is hard to believe that something so strong is a total lie, a figment of your own imagination and has no truth in it at all. I am a great believer in listening to our bodies, to sleep, eat and live to it’s demands, rather than those of convention. Having to force yourself to totally ignore a message that is so clear and so strong, is more than just an alien response, it almost feels disloyal. The first time I remember feeling this way, I stayed awake all night, scared to go to sleep in case I died. It was as thought sleeping would be an invitation for it to actually happen. Now, I lie down, close my eyes and sleep peacefully, not because I am inviting it, but because I no longer have that option to stay awake, what will happen, will happen.

I woke in the middle of the night, I was covered in sweat. My attempts to stop myself from escaping the bed is working too well, I can’t even move the covers when I am too hot. Like so many things in life, there doesn’t seem to be an easy answer that suits all possibilities. There is no other thing to be done when you wake like that, other than to get up cool off and take a break from sleep. I moved across the bedroom as fast as I could as I desperately needed to get to the bathroom to dry off my back until then I had to hold my hair clear of my body. My hair is now at a length that means I can sit on it with ease, on the down side it also means that wet skin is a perfect magnet for it. As I was making my way across the hallway, trying not to make a noise to wake Adam, I discovered that there was a great deal of pain in my left foot. Once I was dry, wrapped in my dressing gown and sat in the kitchen enjoying the cooler air and a cigarette, I started to explore my foot. The worst of the pain was in my big toe, if it hadn’t been for the fact that the podiatrist had been here a few days ago, I would have blamed the nail. There was no way that they nail had grown that fast and besides that, I could apply pressure without making it worse. In fact, I could apply pressure in all directions apart from one, without it changing at all. When I matched it to a small area on my heal, I had the answer, it’s pressure pain. From time to time, I don’t only sleep unable to roll over, but I seem to sleep deeply enough to not even move. The result is that the unchanged weight of the duvet from above and the weight of my foot on the mattress below, causes painful areas, like those of last night. I had been lucky to wake when I did as if I had slept much longer like that the pain would have been far worse.

I have gone through spells of pressure pains in the past. At one point, they were so bad that the NHS supplied me with a pressure mattress. It’s supposed to help stop these points getting so bad that the skin ulcerates, something I have been lucky enough not to happen. Ulcers or not, the areas affected do become incredibly painful and finding a different position when you lie constantly on your back, is impossible. Luckily, if they appear on my feet, I do have some subtle changes in position, often enough to bring some relief. I now frequently develop red and painful areas that last a couple of days, but spending 13 hours a day in bed, is always going to cause problems. For now, they are probably nothing more than a huge painful annoyance, they don’t threaten me in any way that open sore and ulcers would. But the longer and longer I spend in bed and because I don’t have the strength to roll over, the more the threat grows. I have tried repeatedly to lower myself onto my side when I first get into bed, in the hope that I might stay there for a couple of hours at least, before flopping onto my back. Every time I try, the result is the same, so much pain that sleep is impossible and I am quickly on my back again. I have no other option but to lie there and just stay there. If I were to become bed-bound, it would only be a matter of time before my skin began to break down, as you can’t stay in the same position forever. I don’t have a clue what the answer is, but it will be one that I will put directly into the hands of the NHS as they are the experts.

This morning all that is left is a dull ache in my big toe. My brain has settled to the fact I am still alive and at this moment, isn’t plaguing me with mad suggestions. I am once again not just tired but feeling as though life still hasn’t stopped, as yet another night has passed without clear uninterrupted sleep. My legs are in one of those states that means staying still is almost impossible. Everywhere is wrong, every position short lived as I have to change them again and again. This constant movement is rapidly fatiguing my thigh muscles, they aren’t happy at all and I dread the next time I have to stand up. My diaphragm is tight and my breathing shallow. My morning headache has just broken leaving behind a growing desire to sleep. Knowing it is far to early to do so, of course, means that my brain is trying to turn sleep into eat, but my stomach is too busy trying to tell me I might just need to be sick. Who knows what today will hold all I know right now is that “normality” is restored, as far as it ever is.

Please read my blog from 2 years ago – 26/08/2013 – The world out there

I often find myself feeling increasingly guilty in not personally answering every tweet, comment and message that I get, but as time goes on it is not only harder because I don’t have the energy, but truly impossible to maintain a…..