I wonder why I cannot shake this feeling. The feeling that a day in the life of me is scary, complicated and leaves my body bereft of feelings, yet completely awash with emotion.

It is with trepidation that I think about the coming year. There is always an opportunity to start anew, it doesn't always have to be a particular date or new year. But somehow it makes it easier to cope with the downfalls and disappointments by knowing, or maybe pretending, that you are leaving it behind, in a place you can't go back to.

I'm never quite sure if  I'm doing the right thing. I still feel that my body doesn't cooperate,  My mind and body don't seem to connect at the right times.  I often go to sleep with a strong resolve and by morning I fight with myself , wondering how far I'll make it through the day without breaking. There are days it's easy, other days I don't even make it out of  bed without knowing what the day will hold, an anticipatory response. Today I was in hospital for my four weekly gamma globulin transfusion. I slept soundly for the first 2 hours, then wrote in my journal and read. I'm not sure how many times I thought about getting through the day pretending that I wouldn't think about certain things, but by the hospital I'd already decided that my brain wouldn't function without the negative thoughts. So be it. I don't know if it will ever go away.

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.

Today I told myself it might be a good thing to go backwards to get forwards. Even though I know those things I once did, I did through a twisted lens of not being able to see straight. I remember a night going back to a bed I was confined to (somewhat against my will) feeling totally and utterly devastated that I was unsure of my next move. Funny how one emotion can be so strong yet you know you don't to feel it.
Since that night and since that dilemma in my mind, I've not been able to go back to who I was.

The last two nights I have slept fitfully, vivid dreaming, waking in fright, waking to hot, waking to cold, waking to an intense scream only to realise it was me. It's left me drained and sleepy. Tonight I wish for a peaceful sleep and to wake to a bright new day.

I like how my mind and body feel when I have let a sense of calm settle in. It's a wonderful warm feeling that makes everything seem easier. It's hard to be angry when there is nothing but calmness.

Tonight I felt that sense of doom. It hit me out of the blue. Perhaps I'm missing something, somebody, some sort of feeling of not really being here. It sometimes suprises me to look in the mirror. Sometimes the person I see in the mirror doesn't match what I think I am really like. Sometimes seeing a photo of myself makes me think somebody has been superimposed over the top of the picture and I struggle with trying to reconcile the girl in the photo and the girl in my mind. But alas that doesn't account for the sudden and overwhelming feeling that floods my body with fear and an acute sense of impending doom. I try and try to pretend it's not there or distract myself with seemingly meaningful things. It works for about 3 seconds and then the horrible sensation floods my body again. Perhaps it's time to sleep and hopefully wake up to a better time and place.

I have failed to write for a while. Maybe not 'failed' but neglected. Perhaps my mind has been still enough that I've not needed to, or perhaps my mind has been so frantic that I couldn't sit still for long enough to write something. My mind constantly flucuates between these states. Today my mind is frantic but my body is still. Some days I wish my mind was still and my body frantic. I suspect that would be more productive. I would be at my most productive if both my mind and body were frantic but it's hard to get to that level without the fear of crashing. I don't mind the crashing, if only it were easy to get back up again. Tomorrow I'm willing my mind to be somewhat frantic. I need my mind and my body to sustain me at an above normal level of frenzied activity. It needs to last for 28 days. Twenty eight days is the bare minimum required to for some kind of new habit.

Today is one of those days when you wonder if you really can continue on like this. I wonder how I'll get through this. It's not just the turmoil in my mind, it's the absolute physical pain that goes with it. I know my immune system is so broken that there are days I wonder why or how I'm still alive. I tend to just keep going, pretending I don't have a choice and I try to put it to the back of my mind and pretend it's not happening, like I don't have to deal with it all. Then there are days where it's the only thing I can think about and it makes me angry, scared and completely and utterly sad. Today is one of those days.

I wonder if I'm alone. Could someone else be reading my thoughts while I'm thinking them. It reminds me a little of the book 'Sophie's World'. When I lay down at night and slip into sleep does someone else take my place in a waking state somewhere else in the world? When I dream, is that reality? When I'm awake, perhaps it's really all a dream. It confuses me somewhat to try and figure out just what is reality. But does it even really matter which state I think is the real reality? It doesn't. Sometimes when I wake from an amazing dream I wish it could have been longer. If I'm still in the dream when something is waking me I can easily slip back into the dream and continue the story. Even during the day when I'm day dreaming I can do this.