The Lonely Disease

When you have CF and you are on your Ivs, or feeling unwell or anytime really, you soon come to the realisation that this doesn't change much. If people are under the illusion that family and friends offer to cook you tea, do your shopping, take you out etc like they would in a film then you are mistaken. People don't rally around to help you or to raise money for a charity, they don't feel inspired to do anything extra because of your illness and the difficulties it causes. Pete is the first person i've known since I can remember to raise money for the CF Trust. In Emmerdale last night the whole village was seeing if they could be a bone marrow donor for Sarah, I doubt this happens very much. My own husband doesn't donate blood, his choice, I can't make him and I'm not going to nag him because that would be me pressuring him to do something I wish I could do myself (I can't donate blood or anything, I've researched it). Most people I know are on the organ donation list, least that's something!

There is a part in the film 'The Beach' where a guy is taking ages to die and the main character says 'You see, in a shark attack, or any other major tragedy, I guess the important thing is to get eaten and die, in which case there's a funeral and somebody makes a speech and everybody says what a good guy you were. Or get better, in which case everyone can forget about it. Get better or die. It's the hanging around in between that really pisses people off'


I think people with long term illnesses are like this, people are supposed to die or get better. But we don't do either, we sit somewhere between, keeping going but never quite one or the other. This confuses healthy people, they don't understand it as they have never experienced it. They judge people with long term illnesses and make assumptions. He/she seems to manage OK, he/she doesn't seem that ill, he/she wants to be treated like a normal person, he/she is stronger than other people. I probably do it myself about others such as elderly people or people with children, I assume they are managing although I would try to never be judgemental about something I don't know about.

I imagine when I was first diagnosed with CF, my family were worried and anxious, eager to help out how they could. As years go on it just becomes the norm, people become complacent, one of my brothers doesn't seem to even acknowledge I have CF and if I mention it he thinks its some kind of excuse I'm using and sighs at me. I feel I have to push all the time to remind people, even my own husband who lives with me and sees how much I have to do, how tired and ill I can be, he sometimes expects me to be able to do everything I need to do, as if I have become immune to feeling exhaustion and pain over the years. Like I can push it aside and be tired when its convenient.

We went to a surrogacy social event on Saturday and stayed over 2 nights, being on my IVs made this day very stressful and non stop for me. I was exhausted on Sunday and still am to some degree, nobody even appreciates how much effort went in to me making that social event, but why should they? To them I was there just like everyone else. Why do I even want them to appreciate the effort it took? It won't make a difference to anything! I guess I feel like my achievements go un-noticed because to others they are nothing, but to me they are everything.

My eyes are so puffy and red and my headaches are clouding my mind and incapacitating me. I've asked to not be put on ceftaz again unless really required, I always say I will take it easy when on my IVs but it never seems to happen even though I don't seem to do much! Why do people always seem to ring you when you are trying to have a sleep? Why do I feel like people are calling me all the time, but the phone call is never to see how I am or if I need anything?


At the end of the day people like me are supposed to be dead, if it was survival of the fittest I'd have been gone long ago, even though I think mentally I am stronger than most. The thing is, I can do it on my own because of my strength. I can't remember the last time someone came to a hospital appointment with me because I don't need anyone to be there, I don't need someone to do my physio or tell me to do it, or do my IVs for me although Pete often offers and do you know what, its great when he does, to not feel alone in this quest for me to feel better. To know I could do it if I needed but the offer to be there to make things a little easier. My Nana pays for a lady to come and clean our house every week, its one of the best gifts anyone has every given me, not just the cleaner itself, but the recognition that I was struggling with the cleaning.

I like that I am independent most of the time, I don't want to rely on others to get me through, it's my CF and my responsibility, this makes it hard for me to ask for help and its mostly my fault as I don't ask. The thought of going in to hospital and someone else taking over my care frightens me as I know whats best for me. I like people see me as managing and getting on with life because that's my aim. I suppose I just wish that I didn't feel so lonely, CF is a hidden disease but also very lonely at times.