The hardest thing I have ever done was to tell my family, particularly my mum, how dire the situation with my health is. I'm going to get through it, with their love and support as well as amazing friends, a boyfriend who loves me and of course my adopted brothers and sisters. My carers have been fantastic since I got out, my primary carer is someone I feel like I can talk to, he's old enough to be my dad but I think that helps too. I never realised before how much nurses and care workers have to do and how it must take a certain breed of person to do it.
Due to my condition, I am a frequent visitor to the Respiratory High Dependency ward, one of 2 respiratory wards at my local hospital. The staff on there are lovely and without them, I don't think I would have coped with the bleak news. The woman who did the lung function tests was lovely too, she remembered me from 10 years ago! We spent the time having a good old catch up and doing the actual tests. I don't know what I was expecting, perhaps I was desperate for "normal" results so that I could get back to normality and not have to face it. Knowing your condition can be daunting and knowing something, you can't just unknow.
The nurses all gave me comfort, a shoulder to cry on when I was sat there on the bed trying to take it in. I knew it wasn't great and I knew my lungs were getting to the point of not being able to heal anymore. All I could think was "why?" Its all anyone thinks when this kind of thing happens isn't it? I felt angry too. This is harder than anything I've ever had to contend with. The thing that annoys me most was that had it been dealt with better last year, perhaps by now I would have been better controlled but for what ever reason, the local consultant didn't seem to be all that interested in that, to be honest I don't understand it myself. I do want to task that part of it further but for that reason alone I'll not discuss that here. Not yet at least. I would love to name and shame the doctor whose lack of basic common sense and the trust that let me down. I would love it for them to experience what my day is like and then have them understand what they did by becoming fixated on how many meds I have and not testing to see what the extent of the damage is! I'm hoping that lessons will be learned and no family will have to get the huge shock mine has had again.
Because, let's be fair here. This doesn't just affect me. This has also affected my family, friends and everyone I hold close. They're going to have to see me get ill and they're all as powerless as I am about it all. I can't even begin to understand how my mum feels, she gave me life and did everything as I grew up, no mother should have to watch their kid suffer and have to face a very real prospect that one day, they may have to bury their child. So this isn't about just me, this is about all of us and knowing that it would have been prevented had the consultant acted sooner isn't really too much of a consolation prize. If anything I think it makes it worse and its just the tip of the iceberg, this kind of thing is happening all the time.
Asthma isn't being investigated properly across the country and its not taken seriously by doctors. The annoying thing is that 90% of asthma deaths could (and should) have been prevented had doctors taken it more seriously. 3 people die from asthma each day in the UK and its those families who are torn apart, and all for the arrogance and backwards thinking of doctors who are more interested in targets and saving NHS funds than helping people. I find it shocking and disturbing! Going in to hospital shouldn't feel like taking a huge gamble, you shouldn't be left wondering "if I go in, will I make it back out again?"
If it wasn't for the consultant's arrogance. And no. It wasn't Dr Brocklebank, he was one of the few who tried helping me at Christmas. We seem to have an understanding and we actually get to chat every so often. Its funny, I think that I have taught more doctors about brittle asthma than they have learned in books. I'm something of a living legend (or as Dr Brocklebank puts it, an expert at what I know) and people who hear my story and see my condition first hand are interested in what this means to someone who is young, vibrant and generally tries to make the best of it. I don't think I'm particularly strong or brave, I just don't have the time to waste in being down all the time. Not to say that I don't have days where it all piles up and I have to let it out. I do have days where I want to scream and scream until my breath is gone and I curl up breathing hard and tiredly.
I'm not going to stop here, I need to get justice for this or make a difference to save a life later on. If I can help one other person get a proper diagnosis and treatment, then I have done my part.