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.