Deni

Well, you can’t do things that other people can do. Even just like making a cup of tea or lifting the kettle or boiling potatoes like hot or having to do all the housework. Normally, I would be able to get all my housework done in a day and now I have to pace it over four or five days because I can only do one task at a time, like hoovering or lifting the washing in and out and shopping. I can’t carry bags in my hands any more. I have to rest it on my arms, which is then starting to put strain on my elbows, which is now, and, you know, and then the shoulders and they’re both joints that can potentially be affected. So I worry about the way things are changing and how I’m going to have, you know, it’s shameful. It is shameful because you can’t do it for yourself.

Well, my earliest memory of a hospital was, like I said, I remember being on this bed thing with these people looking at me I don’t know that, I’ve got that and I remember also like to the left of me there was a little boy, because I was on a ward, and his name was [name] and he was really sick and he died but he was like my friend like at the time and to this day, I’ve never ever forgotten about that wee boy because I used to put like little pockets up because he was in this like plastic thing that had holes in it. I think it must have been like an incubator type thing but he was older than me and he was smaller than me. He looked like a baby and I used to put puppets up and try and make him laugh and things and I remember him and he was there and then he wasn’t there and that was really weird at the time. Like to this day I use his name for everything, passwords, all my dolls were called [name], my first pets were called [name]. I don’t know, I’ve always remember that wee boy and it kind of scared me because of this big plastic thing and these people looking at me. That was the first kind of thing I had and then there was other occasions when there was a trainee nurse, I think I was about five, six and the doctor asked if she could take my blood and she put the needle through my arm. She done it wrong and she broke my like she burst my vein and oh, it was awful and my mum was so mad at me for screaming and saying, “You’re making a scene. Will you be quiet?” And dragged me out and there I am blood pouring everywhere. This woman has just hurt me and I’m like, “I’m the one that’s, you know, been hurt here and I’m the one that’s getting into trouble.” So I think just I’ve always associated being in hospital and being sick with negative thoughts and me doing something wrong, me not behaving properly and, you know, there being something wrong with me and I don’t want to feel like that, so I just don’t go.

It’s lit a little fire in me just hearing that so, you know, like to go away for a weekend with a rheumatologist to have that that resource there, just to be able to ask a question without it being as formal as being in a hospital, maybe that would, especially for me. Being inside a hospital freaks me out and I think that’s because of being in a hospital when I was so young and not understanding what was going on. It’s really, became something quite bad for me to have to deal with. So I think from a younger age, to have that rheumatologist just speaking to you like you’re a normal person and giving out information would have helped me I think. Out of the hospital environment, I think that’s a very clever idea.