Continuing with the guest blogs this next one comes from Wendy. Wendy too suffers from more severe asthma aka Brittle asthma. I got to know Wendy I think initially through AUK perhaps and latterly on asthma groups. I think Wendy’s blog was one of the first blogs I started reading many many years ago and took comfort knowing I was not alone in my struggle with my asthma. Here Wendy shares her story.
When you see me in the street, what is the first thing you notice about me? Is it something cosmetic like my eyes, hair, facial piercings and tattoos? Is it my style of dress? Or, is it that I am sat in my wheelchair and wear an oxygen cannula? Many people stop and stare at me in my chair and whisper to themselves. Sometimes though, people ask me about what it is, what it does and why I have to wear such a thing. The simple answer is this, I have severe asthma.
When I was first diagnosed that my asthma had well and truly returned (as my asthma followed a rather atypical pattern though my childhood and only started to re-emerge when I was about 15, then it went away again for a few years) I was 18 years old. I had developed this weird cough, which never went away, and sometimes I got out of breath just doing what was normal for me back then, things like singing in a band or walking around to the local guitar shop/practice rooms. Back then I never realised just what path my life was about to take. I remember taking the first ever puff from the blue inhaler I was given and thinking “OK, so this is going to be part of my life from now on” and for a while, I was constantly back and forth to the doctors to find the right treatment. I was sent to a consultant who did tests to see what my lung function was (back then, it was 89% which is very good) and I was given better inhalers and Singulair tablets, and for many years, that was enough and I was able to enjoy the rest of my teenage years.
Although, sometimes, as hard as I tried, I still had severe attacks every so often but there were only 2-3 of these in a year. I’d go to A&E, given nebulisers and sometimes the odd steroid injection, pred and other medication and I would be fine. I even used to work as a cleaner at the local hospital and for a time at a bowling alley with dreams of starting my HND in Media Studies and getting my own place. At age 20, I finally started on that path and I remember the day I moved in to the first flat of my own. I’d been to view the place and had fallen in love with it. It was an attic room with its own separate bathroom (which was almost as big as my room but was weirdly laid out, also I used to pile my washing up in there and do it on the weekends, which was always a bit weird but hey, for nearly a year it worked). The view from my bedroom window (well, the big one) was always a stunning lookout at the woodlands. I was so happy and I was so ready for my life to begin.
Unfortunately it wasn’t to be. I won’t bore you with the intricacies of who did (or didn’t) do what and when or what could have happened/should have happened. Those things aren’t important now, all that is important is that due to poor care in the beginning, consultants not understanding and trying to deny asthma as a disease and chronic infections my life is so different to what a typical 27 year old would be. I am on over 20 different medications, including oxygen, nebulisers and countless tablets a day. My lung function is 30-40% on a good day and I am reliant on carers to look after myself effectively.
The problem is that a lot of doctors are dismissive of asthma and how it can affect the lives of us who live on it. It’s a horrible and limiting condition and has changed my life so much over the last 7 years. Had I known sooner any way of preventing this, be it from pushing for better diagnosis sooner (all too often, people are too intimidated by doctors because they believe that the doctor knows best) then maybe I would have been spared the end result. It took me years to get my voice heard and it wasn’t even noticed until I had an attack which could have killed me.
I will never forget the first ever “life- threatening” asthma attack I ever had, well what I know about it. The first time I ever had a “life-threatening” attack, I was 21 and I had been staying in a squalid flat with my boyfriend at the time (we found out later that I had severe bilateral pneumonia which had been caused by this place). I remember during the day, we went out to town and I brought some models, whenever I see them I remember that day, and we were returning to the place when I was showing signs of not being well. I had decided to take a nap and then I woke up in a white room. I had a team of doctors around me, all talking indistinctively. My top had been cut off and my chest was bruised from compressions. A nurse was behind the bed holding a mask on my face and squeezing a bag to breathe for me. I found out later that they were moments from intubating me; I’d stopped breathing in the ambulance and they were worried that my heart was going to stop. The next thing I remember, I woke up properly a couple of days later on a ward with a nasal cannula on and being told that I was lucky to be alive. I’d apparently slept straight through and they were looking to move me from HDU to ITU. When I eventually left the hospital, I remember how it took ages to build my strength up and I had missed 2 months of college. But it opened my eyes.
Asthma is a real condition. It devastates lives and can kill. If doctors looked at it and saw it the way the people who live with it see it, then I honestly believe that the mortality rate and negative impact the illness leaves us with would be significantly reduced. Please read this as a cautionary tale. Don’t ignore asthma.
(Author of “My Journey Every Step of the Way.”)
Go and visit Wendy’s blog at: http://myjourneyeverystepoftheway.blogspot.co.uk