Sometimes having limitations really gets to me. I think it would get to anyone in my shoes, especially as I wasn't always disabled. I always had problems with my chest, but I didn't get this bad until I was 21 and this whole thing started. I don't care much anymore about who did what and so on, the important thing is that I learned to live with it. There are days though that I wish I'd not gotten in to the situation I did and wonder if life would have been different but then I remind myself that had I not been through what I have, I wouldn't have the same compassion for others.
I guess the main thing is that despite everything, I am still here. What annoys me though is the pure ignorance of other people. I was sat in my garden earlier today and this elderly woman walked past, not caring to lower her voice as she said how disgusting I was with "that thing" on my face. Unfortunately "that thing" is keeping me going. I could have stood up and told her to mind her own business but I chose to just pretend I'd not heard her. I carried on relaxing and talking to some of the local kids about the animals outside. The rabbits and guinea pigs were happily lazing around in the grass. I was surprised that I didn't have the kids asking 1000 questions about things. One did ask and I told them straight that it's there to help me breathe better.
Its weird how one end of the scale, a child of 8, can be more understanding than someone in their 70s or 80s. I know they grew up in a different time and sometimes a different culture but it doesn't make it any less cruel. I've had people shout all manner of nasty things and this one woman came up and told me that in her home country people like me are locked away and not allowed out of the house. How backwards is that?! Saying that because you have a disability, you aren't entitled to a life outside of the house. Its mad. Then again, this woman has a habit of being ignorant, pushy and then cries "racisim" if she's confronted by anyone, yet she is often the one who is rude or prejudiced towards others. I could go on, but I would only be giving her a reaction, instead, its a bigger show of defiance that I am still going out and living my life.
I've always maintained that just because I have a disability, doesn't mean I have less of a right to live the way I want to. I found it funny at the doctors, there I was in my chair wearing my cannula and yes, people whispered and one or two gawped but like when I was on the trains, they didn't effect me one iota. Ignorance is just that, whether it is born of self-righteous opinions and expectations or just not stopping to ask why. Someone asked me what was wrong and why I was the way I was, and I didn't mind much because they were polite about it, not judgemental and I love to think that I educated another person.
I have taught a lot of people, even some medical staff, about brittle asthma. I do a lot to spread the awareness because I think it needs to be seen. All forms of asthma need to be seen and people should be aware of what kind of damage it can do to a person, their families and even the cost of the NHS. The fact of it is that people die. It's scary but true. Most of them died unnecessarily because doctors didn't try and help because they were fixated on one thing, oxygen saturations. Not good when you retain until the critical point. It seems to be a common thing and its the kind of ignorance that needs to stop. There is a doctor at my local hospital and although I can't say too much here, he is going to have a nasty shock soon because the fact of the matter was that I was discharged far too soon, readmitted after 3 weeks and have been left with lasting damage which now means my life has been changed. Is it for good? Only time will tell.
3 years ago