My body refuses to coorperate. I want it to act as if nothing has ever been wrong. But as much as I pretend it's not happening I always find myself back at the same horrible realisation that my body is so flawed and destroyed inside that I will never be like most people. I was told I look as pale as a ghost today. In fact that happens too frqeuntly for my liking. When I'm well I have no regard for the fact that if I pursue life with utter abandonment it will eventually catch up with me. At a later point I always find myself beaten down, in pain and listless. Nothing left to let me get through a normal day. Everything is an effort, sometimes to the point where I find myself unable to do without a midday rest to try and recuperate some energy to get through the rest of the day. It plays with my mind. I hate being sick and I hate having to compensate for it. Perhaps I falsely believe that if I pretend it's not happening then it will go away. It's cruel and I despise it.

Again I wonder where I really am. I spent the day trying to get rid of the rock that sits high in my stomach, sometimes edging up toward my throat. I hate feeling this way and I'm always looking for a way out from this feeling. Sometimes the easiest answer is not always the best answer. Today it was. There are days when I wake and I feel so strange that I wish I could just go back to sleep and wake in another 24 hours in the hope that I would feel different or better. I hope tomorrow will bring a better feeling. I'm sick of waking or being stopped in my tracks with that overwhelming sense of fear. That sensation that curls around your throat, at times getting tighter, just to let you know that, yes, it is real, and yes it just might get worse. When this overwhlems me, all I can do is hope for a better day tomorrow.

Today I stayed in bed until 3.30pm. When I woke this morning I felt like a part of me had been lost overnight, like a little part of happiness got lost in a dream somewhere. I moped around in my bed trying to concentrate on reading but found myself drifting off into a light hazy sleep, where I began to dream but kept being jolted awake. All day I had that feeling when you are on the verge of sleep and you gently slide into a dream and then your body jolts you awake and you can't quite figure out if you are still in the dream or if you are back in reality. I do that a lot these days. Somedays I have to physically look around to remind myself of where I am. I'm edging back to the days of lucid dreaming. I've not been ablt to do this for a long long time. But the way I've been sleeping and dreaming, I know I can get back to the lucid dreaming that I loved so much.

I have an illness. Well actually I have several. The typical treatments sometimes work, sometimes not. Since I was 18 I've lived my life around how sick or not, I am. The last 18 months or so have not been great. I am often told that I am in denial about the seriousness of how ill I am. That is probably true to some extent. I guess I'm frightened to understand or accept the severity lest I suddenly give in to it and believe that I am too ill to do anything. Even though I wasn't diagnosed until I was 18 years old, in retrospect I know I had the illness long before. So really, I don't remember my life without it. I don't know what it would be like to be able to get up and go to a job everyday and plan all your social activities without a contingency plan of possibly or realistically probably falling ill. I am hopeful thatal new treatment I start soon will solve part of the illness. Omitting one factor should hopefully make the other illnesses easier to bear. I often forget that most people don't have to plan their life around having major medical conditions. I have days where I forge ahead with no problems whatsoever and then I have days where everything is an effort and I wonder if I will ever feel well again.

Today was one of those days where I struggled to get out of bed. Once I did get up I struggled to make even the simplest of decisions about the day. I hated feeling like I didn't even have the mental strength to make a benign decision without feeling like the world might come crashing down on me. I tried to  concentrate on simply thinking about the present moment. I then made the decision to go to the gym. Once I'd decided I then simply focused on getting ready. I tried not to let my mind wander and start thinking about the past or the future, but to simply be aware of what my body was doing and how my mind was responding. It's so cliched, I know, but if it really does help, then just do it. Tonight I feel incredibly relaxed, calm and content. It's exactly the feeling that I wish I could feel all the time.

I do wonder why so many people, including myself, are often compelled to do things we know will possibly hurt us or leave us humiliated. Sometimes it's quite obvious why we would do this there are some situations when you desperately need or crave to be hurt yet don't totally understand why. We often put ourselves in a position where this is exactly what will happen to us. You open and your mind and your soul and wait for a huge hit of hurt and a gentle hit of humiliation. Degrading but necessary.

Today has the feeling of flatness. The sky has been grey and threatening rain.  The clouds hang down as if they are trying to scare you into dullness. I don't feel happy today. In fact, I don't even feel ok today. It's one of those days where nothing feels good or happy. One of those days where I wonder if it would be better to go to sleep and see if tomorrow it better when you wake.

Another hospital trip today for the usual transfusion. The upside is it does eventually make me feel better but the down side is it often leaves me with a headache like no other and a decent temperature that makes my skin burn. It's interesting being at the hospital in the day clinic with the same patients that I see every 4 weeks. Same place, same time and often the same conversation about how lucky we all are. No one seems to dwell on the fact that we all have some nasty disease. Diseases that leave us in different states of physical discomfort and pain. Some of them, like myself, live in a constant state of feeling just 'ok'. Some of them are acutely ill and we know they will only be on the ward with us for a matter of months. They will either die or they will go into remission. The rest of us will continue to see each other every 4 weeks and tell each other how fortunate we are, despite the pain, the tears and the fear that it may never get any better.

I am now at home after a short emergency trip to hospital. I feel a little guilty as I now feel quite fine. I little of kilter but generally fine. I should pride myself on getting in early though as I usually leave these things until I am so ill that it really does become an emergeny situation. It's very hard to describe the intense fear I get when I realise I'm sick. After two days of feeling desperately unwell I became overwhelmed with an intense desire to be back home with the people I love. I am fearful to be alone though. I have such good support and it's nice to know that people have already arranged to come and help us out. After being picked up from hospital we went to the park where I watched my little loved one play. It makes my heart burst with happiness when I see her happy grin while she plays. Even when I feel terribly terribly at rock bottom, seeing a little face give you a smile that begins at the corner of her lips and radiates all the way up to her beautiful eyes, at the very least momentarily makes everything good again. I know this week will be incredibly hard. It's always fearful but comforting to know that things will slowly slowly improve.

Today is the 1st day of October. I question whether the beginning of a new month should compel me to start something new. Maybe a new habit, or the letting go of a habit or bad thought processes. There are so many things I hate about me, but they are always things that I do, rather than intrinsic traits. I can so easily get myself into bad habits, but I can so easily act like everything is ok. While this can be detrimental to coping, it can be a great thing when you need to keep your bizzare and dangerous thoughts to yourself.