OK I have been meaning to post something a bit less about my personal politics and actually really have a talk about what my asthma really means to me, how it limits my life and if I could change anything, I would not have it at all, like so many of us. So here it is, an asthma rant which some of you may agree with, some of you will be wondering why it has never been said outside of forums and maybe some of you may be facinated with the life that 2.6 million people in the UK have to put with when it comes to being a brittle asthmatic.
Before I start however, I would like to note that Brittle Asthma is something that is usually diagnosed by a trained doctor who specialises in Asthma and Respiratory Disease and not by a standard General Practitioner. Unlike other asthma, this sub-type is very unheard of and the general public have never had to know what BA actually is and what it means to those of us who are unlucky enough to suffer with it. My diagnosis came from 2 consultants, Dr Vathenen (Respiratory) and Dr Mansur (Clinical Lead of SBAU, Heartlands, Birmingham) repectively.
So, here we go, 10 Reasons Why Asthma Sucks:
1. You have to use your medicine in public.
I hate this because people always stop and stare and I hate that. I hate the fact that kids will look at you funny and people even come up and ask you to refrain from smoking!!
Being me, there is one thing in life that I cannot stand and that is limits imposed upon me by persons or in this case an illness which makes me feel so poorly at times. There are days when I can't even get up, walk to the loo and then go back to bed without having to prepare and know there is a nebuliser waiting for me, and by the time I get there, I guess I am so in need of it that the fact I feel so contained some days that it is hard to smile and feel cheerful.
3. It can be hard to make yourself heard.
Sometimes it is a struggle to make people understand what it is I am trying to say or even my instincts being ignored. Asthma management is sketchy all over the country and it can be a gamble especially in an emergency, in some cases, my life has been put at risk by nurses or paramedics who have not looked after me properly, only to have my ass saved by the doctor just at the right time.
4. Having to go equipped:
Going out for me sometimes is like planning a military operation. I have to be careful and make sure I carry enough drugs (often enough to feel like I am carrying a small chemist), a nebuliser and batteries if needed, inhalers, spaces, peak-flow meter and if these are forgotten, it is so important that they are gone and retrieved.
5. Hospital Appointments...
I hate being poked and prodded by the best of times, but when I have to go to a Doctor's Appointment or a Hospital Appointment, I am usually tetchy as anything. I hate being examined as it feels like I am being used as a guinea pig or something, that or a lab-rat on a wheel. Then there is the physical exam which, when it is a doctor I barely know, I feel like it is an invasion of my privacy and dignity.
6. Drugs and Side Effects:
I have touched on my medicines before and how I have to carry a lot. But it does get me a lit down when I see my repeat prescription and all 16 items on there. Knowing that about 12 of them are for my asthma and hayfever alone makes me feel a bit worse because it is a bit depressing that at 23, my prescription is 3 pages long and takes about 40 mins to be dispensed at the local chemist! Then there is the side effects, because of uneven amounts of prednisolone, my bones are weakened and break easy as well as my immune system compromised. Not to mention the really horrible way that it makes me all puffy and bloated at continued high doses! Then the bronchodiolator drugs which help my breathing, cause all kinds of weird cramps. It can be a pain in the backside at times to work out what is caused by what!
7. Hospital Admissions and A&E visits:
Because I have type 1 brittle asthma and I am bad, pretty much all the time, I can never quite tell when an admission can happen, all I know is one minute, I can be a bit off, but coping OK with it and using my home drugs and then as soon as you can say "asthma attack" then I am pretty much fighting for my breath! I have had several really bad ones in the past where I have been in such a bad way that how I came out of them without any repercussions baffles myself and the medical staff. So when these happen, it is like my life gets rattled about a tiny bit... It can be frustrating to say the least.
Not something that effects everyone, but I get hayfever and it is a pain in the arse because suddenly, my asthma becomes even more twitchy and easy to set off. I had a particularly bad time with it recently and my body erupted in hives and I ended up with an infection again!
9. "I thought Asthma just meant a blue inhaler"
Lack of understanding is such a major problem when it comes to asthma, especially those of us who have to use more extreme ends of the scale just for quality of life. People who don't understand asthma or BA tend to think that if it is not cured with a puff or 2, then it is not real. This is a big problem. People should really learn more about BA before they decide to make snap judgements like that, because unless you are going through it, how on earth can you begin to understand my world? Unless of course you have the decency to ask me and listen to what I am saying.
10. Sleepless nights:
With my asthma, I have nights where it is so bad and I am so unwell with it that I wind up having sleepless nights and nights of pain and frustration as I can't sleep. But I want to. But I can't so that circular argument starts, or I have nights where I am nebbing every hour or so. It can be horrible because I just want to sleep most of the time!
So there we are, a look in to the side of my asthma which to be honest isn't all sunshine and rainbows, but I guess I needed to vent a little and say something about how I have been affected by this and how it makes me feel or I would be lost within myself and I would never feel like I could speak freely about anything. There are days where yes I do feel like I could cry and want to scream and punch things just to let it out, but all that ends up in is a shattered Wendy with several broken bones and lungs which are closing up and painful.
2 years ago