Community: Real Life

Me and my fragile body

Hannah, 22, says she's finding it difficult to take control of her health, despite the fact if she doesn't it could kill her.

Hannah

In this, my third and final year of university, I realise that it is time for me to actually take responsibility for myself instead of pretending that I am. I'm not talking about having to leave the comfy cocoon of education and going into the big bad working world, but more about the fact of me actually staying alive.

Although I am a relatively 'normal' person and appear to be so, I have cystic fibrosis and rheumatoid arthritis. As you would expect, these two things affect my life enormously, but I cannot expect you to understand because you never will unless you are me.

Cystic fibrosis is an inherited disease of the lungs and digestive system that means I cannot absorb fat as normal people do. Also due to persistent chest infections, which cause sticky mucus and damage, my lungs are slowly degenerating. Rheumatoid arthritis by comparison is not so bad, bar the pain it can cause. It is a disease in which the joints, usually small joints but sometimes larger joints also as in my case, attack themselves. This leads to erosion of the joint surface and deformity, although this can and usually is curbed and controlled by strong medication. These definitions are fairly generalised and with both illnesses many complications can arise.

The only way is down

So, I am at a point where it is time to make a decision and stick with it: the metaphorical fork in the road. I have always been very bad at looking after myself properly, such as taking nebulised medication, doing physio, taking vitamins etc.  This is especially true in the last three years with the added stress of university.

"I find myself in a position where my lung function is at a point where if I were to carry on with this sporadic care then the only way is down."

But now I find myself in a position where my lung function is at a point where if I were to carry on with this sporadic care then the only way is down. So I must take control of the situation either I take my medications properly and take good care of myself. Or I do the incredibly stupid thing and carry on as I am, in which case my health will deteriorate rather quickly, my lungs will fail, I will not be given the opportunity for lung transplantation and I will die. Death is something I am so indescribably frightened of.

I know what you're thinking: take care of yourself then! I wish it were so simple. I constantly strive to do everything that I must to stay well but the minute I become busy with university or even just get stressed all the hard work and care goes out of the window. I tell myself that tomorrow or next week I will begin all over again but even then it is difficult to get back on track and I wish I knew why I behave in such a way especially when I really do want to be good and do the right things.

Lucky with your health

I hoped that in writing this I would discover for myself why I treat my body this way when I know it's fragile but still can't find a reason and am beginning to wonder whether it's just in my nature to give up easily - my mother did always tell me I'm defeatist! For now I must just carry on trying my best and hope that once university is finished I will find myself a steady routine; yet I feel this isn't good enough.

As for my future I am always curious about what is and is not possible for me. I wonder whether I'll be able to work full time (I don't think so) even though I want to; I wonder whether I will ever be able to have children, which is still wholly unknown to me. But mostly I wonder-although it is somewhat morbid, for someone in my position you cannot help it-how long I have left if put rather crudely; and I consider the things I will miss out on.

Yes it is a cliché but if you are healthy you do not know how lucky you are. Lucky to be able to get up and go to work everyday; lucky to know that you can become a parent; lucky to be able to watch your friends get married; lucky to be able to do a thousand and one things in a day and still go out that night; lucky not to wake up most mornings feeling crap...I could go on. But above all you are sincerely lucky to not have to struggle to care for your body in the knowledge that it is failing you anyway. If you have your health then treat it wisely.

Updated: 03/03/2009


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