Finding it tough.

I always try and remain positive and see a light when all seems so dark. People often comment on how positive I am and how fantastic it is, yet this is only a mere reflection of what I want people to see.

I do try and stay positive, but in doing so I actually push the negative feelings down and bottle them up - hasn't anyone ever thought that me being positive all the time was a bit strange considering all that's gone on?

Recently it's as if the lid of the bottle has reached maximum capacity and won't hold in any more. I have a feeling where it's like I want to end it all, give up the fight which I've been fighting so long. I've had a lot of feelings like this for a long time, however I remained strong and fought them one by one.

I've helped a lot of people along my path one way or another, but I've not helped myself. I've been hiding myself away, rather than expressing my emotions - I've kept a positive appearance and hidden the true emotions deep down inside. Struggling from day to day is not easy, especially when no one knows how much you struggle on a daily basis. When asked the simple question "how are you feeling today" instead of answering with the emotional side, I answer from a physical perspective, therefore not allowing people to know if I am coping or not. At least by answering from a physical point of view I am letting people know the days when I physically can not manage.

When alone with those with whom I am close to, I drop hints of how I feel; it seems as if these fall upon deaf ears. Such hints which I have dropped have been along the lines of, "If I was to end up needing resuscitation, it is obviously my time and I'd prefer not to be resuscitated.", "If I died, I'd rather not be burried in a churchyard" and many more along the lines.

It's been about ten years now where I have led a life of non-existence; a half-life. I'm living, but I'm not alive. I don't want to keep on like this, I want my life back. I can't cope like this.

I spend most of my time doing creative stuff, stained glass, making cards, jewellery, felt decorations and the suchlike, which I sell for the Crohn's and colitis charity. The remainder of my time is spend on-line, a fraction of which is in a couple of support groups which I set up.  Although I have a lot of craft stuff, which yes, I do enjoy a lot; it isn't a life, or rather, not the life I would rather have.

I'm not allowed out on my own, my mum takes me out a fair amount, but its not the same. I seldom get taken out by my best mate and other mates, well they are all too far or simply on-line companions (mainly from my Crohn's and Colitis group) who I have not had the opportunity to meet. To go outside more would be lovely, to do the simple things in life and do the stuff which I want to do. I don't really have much I want to do, I just want to do "normal" things which "normal" people do. I wish my friends would take me out more; it hurts when they don't see me often, or if they make plans to see me and let me down.

I would love to work and have independence in my life. I didn't particularly enjoy my last job (cleaning toilets in McDonalds) I mean, who would enjoy that? I enjoyed the company of my work colleagues, the customers and the independence which it brought. To feel that I had a role, a purpose, a structure in my life meant a great deal to me. s what I miss. I want a life, at the moment it is hard to see what the point in life is. If my purpose is to help others, then that's what I'm doing, but why must I suffer the consequences of such an illness in order to help them.

The ability to eat normal food has hit me strong this summer, the amount of times in this heat when all I've fancied eating was a lovely refreshing salad or fruit, yet my limited meal options due to a stricture has made this impossible. You wouldn't get many people complaining about missing salad, but I sure do!!!

It's been almost ten years and not a lot seems to have changed, except for the fact that my health has deteriorated and my independence totally gone.

Next year the doctors are planning on doing surgery, this as written in a previous post is a huge fear of mine. Also I'm worried about the fact that surgery only seems to help people for about 5-7 years until they need further surgery; at my young age, 7 years doesn't seem a very long time at all. To comprehend the importance of surgery is very hard when I am faced with the dilemma of the Crohn's spreading and more surgery needing doing along the way. of losing my entire digestive system and needing a bag. A LOT of people in my group have said how surgery has been great for them and helped them regain some form of life. It may have helped them, but the whole idea is still really scary to me. It wouldn't give me my life back as I would still have my other health conditions such as blackouts which is what makes my life isolated in the first place.

At the moment, the last year at least, I've had extreme maternal feelings; some would laugh at this as a few years ago the whole idea of ever becoming a parent was something I was set against. Now, with knowledge that my condition actually has affected a huge amount of previous relatives (unknown until recently) I don't wish to carry on my family line. So adoption, yes, I would love to adopt, give a child a home and the love that they deserve. I can't adopt though in my health, blacking out all the time. I'm needing a lot of care myself and it wouldn't be fair on my mum to take on my needs as well as those of a child.

I don't know if it would be easier if I was born this way and not to have had the opportunity to have experienced the fun and freedom of life. To have had a life of freedom, only to have it suddenly ripped away hurts. The saying, it is better to have loved and lost, rather than to have never loved at all comes to mind; but is it really better to have experienced some form of a quality life just to have it snatched from you?

There are no IBD support groups near me, I have requested many people to help me set one up with no luck at all. My G.P suggested counselling, but at this moment and having experienced counselling many years ago, I know this is not what I need and would not help me.

I need my life back. A cure would be great. The ability to get out of the house and do the stuff I want to do, to live a normal life, no boundaries and no limitations would be excellent.

If it wasn't for my great fear of what would happen if I killed myself, then trust me, I'd be out of here in a shot. Just I can't, because I have a fear that I'll be punished as a result of it not being a natural death. All of those years of church and things has cast a message into my mind that it's unforgivable, a burden that remains with your soul forever. I don't want to be punished just for trying to escape the punishment that life has handed me. Escape punishment to receive extra doesn't seem much justice, so I remain struggling and fighting, just taking each day as it comes.