Every time I think I'll start anew - something happens to let myself makes excuses. Something that I let get in my way, stop me doing what I say I'll do until tomorrow. It's like I'm addicted to procrastination. Shame when it's something that's stopping you from getting on with what you dreamt your life might be like. It's just that staying how you are is the easy way. Staying how you are allows you to keep up the 'dream' of having the life you want. I get so many plans, ideas and movtiviation in my head. But I never seem to to be able to take the first step. 

This year I've been trying to do a photo a day and post them to facebook (or anywhere for that matter!) at the end of each week. This week I failed to take a photo everyday and scrambled around yesterday wondering how to get some decent last few photos to make up the weeks worth. But I quickly chose a place and took enough photos that I was happy with. While I was taking photos near a church I noticed all the textured walls and the vast array of windows everywhere. 

It got me thinking that I should set a theme for the week. So while the last few weeks images have been random I've decided to start setting myself a theme for the week. I imagine it will be easier as I'll only have one thing that I'm looking out for while I'm out driving or walking and keeping my eyes peeled for the 'right' shot.

Here's a couple of images from the week that was. This week my theme is ............. windows.

It's not like you promise yourself. A moment of ingenuity while you're in a haze of alcohol..........well that moment never transpires. It bugs you intermittently and then life gets in the way and you forget about it again.

I let all the feelings swill around in my head and never release them. They build up and your body, your mind has to find a way somehow to release them, which sometimes has devastating effects.

The beginning of a new year startswith people making resolutions and promising to keep those resolutions. People vow to to get healthy, drink less, lose weight etc etc etc........but come February........alas much of that motivation has been lost.

What does it take to make us form new habits or give up old ones, even when those old habits make cause us to suffer, especially when we choose to continue such habits. It would be so much easier if we could intellectually analyse those behaviours and look at all the negatives (which usually outway the positives by far) and make a rational decision to stop those habits. Unless you're a robot our brains just don't work like that. Some people just seem to be wired to crave bad things that momentarily make us feel good, even if we  know the consequences will be horrible.

So how you stop. I don't know. I wish I knew...........................

I miss writing. I let it swirl around my head without all the thoughts being able to get out. There is some relief or satisfaction when I take a photo or do a painting that conveys a single moment, thought or look that captures my ideas perfectly. The problem when you are incredibly busy, running around after children, getting ready for work, helping out at school, trying to fit in study and exercise around 24 hours, you lose time for sleep. If I slept too much I would miss finding the time to do some of the things I am passionate about. But for me, sleep is also a passion, because it is there that I dream of strange, wonderful and sometimes scary things. But it keeps me going. I don't belive you can be much without a rich and interesting dream life, whether it be day dreams or sleep dreams.

The other night I had a dream about death, lies and deception. There was a white room in an immaculate house. Along the main wall in the living room were 4 distinct cut outs that looked like big ticks. But theses cut outs had been created by bullets. Perfectly formed. The cut outs were a result of murders. Each of the four daughters in the house had been killed. The four girls had heard gunfire outside and instinctively worried that they were going to be shot. The girls had been running through the house to reach safety when  the person who was shooting could see them running and with precise shots killed each girl as they were running. Where the bullets had penetrated the wall they had created a perfectly formed tick √. The four ticks were spaced evenly apart. On the surface the parents appeared to be in grieving. But strange things such as the father frequently visiting a secret room beneath the house which backed onto a lake, began to be viewed with suspicion. The mother became increasinly distressed. She was wavering in her ability to keep the secret. Despite the girls being dead, at some point they came back to the house to see their parents. The way their father was acting they began to think he was hiding something from them. They tried to coax their mother to come with them. She had to make an excuse to leave with the girls, and even though the father was suspicous he allowed his wife to leave with girls. He followed them part of the way. When they stopped at a building along the way to rest, the father found them. Thankfully the people who lived in the building sensed they mother and the girls were trying to escape the father. Everyone managed to bluff him and the people helped the girls and their mother escape.

On the 16th July I went to hospital. I wasn't due in for a few days but had another big bleed so went in earlier than planned. So I had blood transfusions while I waited for the day of surgery.

I was actaully excited about the surgery, hungry for a new life, a better life than I've had the last 2-3 years. The last few years I have had severe and uncontrolled bleeding intermittently from my bowel and have constantly required blood and iron transfusion. I was used to feeling half alive, no energy and simply existing until the next transfusion so I would get a small boost of energy and then watch the same thing happend again and again and again.

When I woke from the surgery they told me that anaethetist had punctured my lung while putting in a central line. I was absolutely terrified. I begged them to put me back under but they claimed I had to be awake and they proceeded to insert a tube in the side of my ribs. While the whole memory is hazy I just remember feeling so scared and petrified something was going to go horribly wrong. The one thing I remember  clearly is seeing John when I first woke. He was standing behind several nurses and doctors with a look of absolute fear on his face. I could see him trying to move forward toward me but the nurses and doctors were holding him back and everyone was talking really loudly. The gut wrenching feeling of John trying to get to me and him being held back will never leave me. It's seared into my brain like a photograph.

I spent 3 days in ICU, where my lung improved and recovered. However I had so much pain inside my stomach that I assumed was from where they had cut the bowel inside. Once I was back on the high dependency ward 3 days later the pain was almost worse. On Sunday I noticed a red rash around it. I asked the nurses to call the ward doctor who tried to assure me it was probably nothing. But when it worsened during the day I asked for the doctor to come back. He phoned the surgeon and I was put on oral antibiotics. I felt like they thought I was over reacting. When the surgeon came the next morning I told him I must have a low pain threshold as it was incredibly painful insid my stomach and I assumed it was where he had rejoined the bowel inside me. He told me the join was mostly over the other side on my stomach.  Then he looked at my stomach and I saw his face fall. It was obvious something was wrongs. Admittedly I didn't have a high temperature or abnormal blood results that clearly indicate and infection so it wasn't as easy to identify as it usually is. The surgeon immediately sent me for a scan, which took place within minutes. Then I spent the rest of the days waiting and waiting for the results. By the afternoon I was scared. I knew I'd obviously had this infection since the surgery and it had gone unnoticed. It begs the question why was my stomach and wounds not looked at regurlarly enough that the redness and inflamed site was not noticed. I felt completely helpless and so so scared that something bad was going to happen and no one seemed to care. I was crying and asked the nurses to please get the results. This went on for several hours and they told me the surgeon would give me the results when he came into the next day.  I cried even more saying I reall;y expected him to see my tonight to figure our what was happening. The nurses should have called the surgeon to ask him to get the results so I could be told what was happening. It was only by sheer chance that my gastroenterologist came in to see me. She phoned and got the results straight away and assured me there was nothing too bad going on, no mass or lump or anything gone wrong with the surgery. It looked like an infection in the abdominal wall. I'd been put on IV antibiotics that morning. When the surgeon did come in the next morning I told him taht I'd been upset and incredibly worried that he hadn't been able to get the results for me the day before. He shurgged his shoulders and said 'I can't help it if I got cuaght up in a meeting'. It made me angry. The infection was slow to respond and increibly painful. Now more than 3 weeks later there is still some pain and the infection still has not completely gone. I simply hope that it gets better and I can be completely well again.  I literally feel quite traumatised  at what happened and I'm desperate to get past this and start living a normal life.

I have see the surgeon in a couple of weeks. I'm petrified. I had surgery 10 years ago and had myriad post surgery complications and spent far too much time in ICU and had something like 13 blood transfusions. I was a wreck after the surgery, both pysically and emotionally. So, yes, the thought of having bowel surgery again fills me with fear. It's easy to say I was unlucky last time and there's no way this time would be as bad. Now all I have to do is make myself believe that. Today, again I spent the day at home, slightly dizzy and resting for most of the day. Back to work tomorrow, which suprisingly I'm looking forward to. I guess over the next couple of weeks I can make myself as well as possible and be in a good pysical and mental state before surgery. I let my brain ramble on and on, thinking of all the possibilities and the things that might be or might not be. I look at people who 'look' well and wonder if they to are sick. If they have any secrets they are hiding, hoping that no one can see inside their head. I wonder if when people walk past me, they can momentarily view the scene playing out in my head. One never knows.

Here I am in hospital - yet again. Having crohns disease and common variable immunodeficiency means regular hospital stays. I bleed. I bleed a lot! The tests are inconclusive and now they will do a pill camera study. Quite amazing that you can swallow a tiny camera and it will record what's it sees on it's way through me. When I was first diagnosed with crohns disease years ago the technology was quite lacking by today's standards. I've become so used to being sick that when people express their 'sorrow' I am often surprised ad I forget that most people think it's a big deal just to have a blood test. I have the best vein (nurses love it!) for taking blood and if I look carefully I can actually see loads of tiny puncture marks. Not pretty!

Today, however is my daughters first ballet concert and I'm incredibly sad that I will miss it. I also missed her little choir concert last night. But as my doctor assured me last night there will be years ahead of other concerts and events that I will get to see my daughter in. They will be happy days :)

Every now and then I get a horrible yet familiar felling of emptiness. It's a sensation that that make me feel like something horrible is about to happen, that the world might end. I can feel it in my stomach and my throat. A kind of hollow feeling that wants to be filled. I detest it, yet I wonder if there are times that I crave it. Maybe it's to ensure that I understand when I don't have that feeling, that everything will be okay. There is a sense of guilt, that I've done something bad and I cannot fix it. Even though I crave the feeling of euphoria constnatly, when I have this horrible feeling of emptiness, it reminds me that even just feeling ok, is better than feeling desperately empty. Sometimes it's easy to get rid of the feeling and other times it perists and consumes me for hours, and at it's worst, days. Today I have that horrible feeling. I'm in hospital today having a regular transfusion, so I guess I could lay down and go to sleep and hope that when I wake the feeling has gone.

It does not please me that I've let so much time pass between posts. In my mind not a day goes by where I don't think of  something to write. Whether it be something that has inspired me, scared me or intrigued me. Today I finally wrote down a dream that I had last night. I kept a dream  journal for many years but have not done so in a long time.

My dream last night reminded me of the opening chapter of  'The White Hotel'.  I met a young man and took a train journey with him. However it did not have the histrionics and vulgar happenings of the 'The Gastein Journal'.

So much time has passed. My birthday party was amazing. Despite my ecclectic collection of friends, everyone seemed to have a fantastic time. I loved it. At some point during the night I looked at someone special and thought to myself that we've come a long way and still have a long way to go yet. Then my stomach started with the butterflies, that strange yet familiar feeling of wondering what the hell you're doing and more importantly why the hell you're doing it. I try and push it aside, pretend that it's all ok or tell myself never again will I feel like this.

Yesterday I received 3 units of much needed blood. Then this morning I had an ultrasound that revealed a minor procedure will be required. Some days I forget what that my myriad health issues are all consuming and there is usually something to with every day regarding my health. My iron had become so low after a significant bleed on the weekend that left me feeling like I was walking on air I was so light headed. When 3 different doctors independently phone me I do wonder if I should be more worried than I am. There is something inside me that feels the need to escape from all of this. The problem is that my methods of escaping are potentially harmful to my physical and mental well being. It is easier some days to forget (or rather ignore) that I have complex health issues. When people express concern or shock at what I have to go through on a regular basis just to feel as close to normal as possible it suddenly strikes me that most people can get up every day and feel 'healthy' and go through their day without thinking about if they will have the energy to get through.
Many days I'm just so exhausted that once I've dropped my daughter at school I come home and collapse on the sofa and stay there until I am forced to return 6 hours later to pick her up at the end of the school day. Yet there are other days where I don't stop from dawn to dusk, getting a million little things done. I sometimes feel frantic and a huge sense of urgency to do as Imuch as I possibly can in one day, just in case my energy dissapates and I find myself sapped of energy and unable to complete any tasks for the next few days.
I frequently find myself thinking in an 'all or nothing' manner. When I have the energy I get as much as possible done in preparation for the times when I can barely lift my head from the pillow.
Today was one such day, but I managed to make it through the day and now all I yearn for is sleep. But I fear tonight will be one of those nights where I sleep fitfully and have dreams which wake me with small screams escaping from my mouth and my body shaking from fear. But hopefully tomorrow will be a better day.

I feel somewhat normal today. Strange. I don't know if I like it. Then there are times in the day when I feel completely isolated from everyone around me. There I am in the midst of people going about their daily business and suddenly I feel as if I'm somewhere totally alien from where I need to be. I wonder if people can see that there is something different about me, something that could be clincially classified, yet something that everyone should be able to experience. Life would most certainly be far to mundane to keep existing if I couldn't experience these feelings.

I learnt something new about myself yesterday. After having a long chat with someone and them asking questions I have never thought to ask myself, it triggered a stark awareness in me of the reality of how I think. Or rather, don't think
I'm don't believe that one can change overnight, but I must admit yesterday made me think that you can at least change your attitude overnight. At least now, When ever I don't like something I push it aside or resort to destructive behaviours. But yesterday made me realise that covering up the feelings just prolongs the pain. I'll never deal with it. It's actually quite a relief to finally know how I can work on getting through this.

I am so weak that I continue to fail in promises to myself. I must be totally disconnected from myself.

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.