Living With Brittle Asthma
So here goes. I guess I’ve never really thought that I had anything really worthwhile writing, or more to the point, that anybody would want to read. I read peoples blogs, some with lung conditions, some with eating disorders and I find them extremely helpful to me. So I’m thinking that even though I might think what I write isn’t that great or interesting, maybe someone out there will read it and be able to relate and find it helpful.
Sometimes I forget how different my life is compared to most young women my age. I have always lived it like this, so it’s pretty normal to me. Brittle Asthma has been part of my life for as long as I can remember. Even before I started spending time in the Sick Kids Hospital every few months.
You see Brittle Asthma already had a devastating effect on me and my family. My Mum died aged 29 from a severe attack when I was 8 years old and my sister was 5 years old. Twenty years ago now, yet I remember it like yesterday. She had been poorly through the night and had asked me to set up her nebuliser. I set it up and put it in the kitchen for her. She had asked me to phone my gran to come over but we didn’t have a house phone at the time, so I went to a neighbour's house.
When I came back mum was lying on the kitchen floor, grey and unconscious. I panicked and grabbed my sister and ran from the house to get help. That was the last time I saw my mum. She was pronounced brain dead a few days later in the Intensive Care Unit. Mum was a organ donor and saved 5 lives the night she got her angel wings. I’m so thankful that somewhere out there my mum lives on and 5 people had the chance that night to wake up to a healthier life.
I can remember my first severe attack at the age of 6. I had been poorly with the cold and had begun to get really breathless and was sent home from school. I don’t remember much from when the ambulance was called but when I woke up in the Intensive Care Unit I clearly remember having a very sore throat. I now know that I had spent three days on a ventilator and had become very sick extremely quickly. From then on, Ward 6b became more of a home from home than a hospital. Every few months I would be admitted spending around 10 days in hospital. Nebulisers, medication, Peak Flows and EpiPens had became a huge part of my life.
By the time I was going to high school, I not only had my bag for school but a bag full of pills and potions too. School had became harder and harder to keep up with; being a perfectionist I hated being behind on my work. Although I attended school in the hospital most days I was never well enough to concentrate. I hated not being the best and not being able to attend school made me fall into the grips anorexia. My world was so out of control that the one thing I thought I could control was food and what went in my body. My weight quickly dropped and it was picked up on at one of my monthly appointments to the Brittle Asthma Clinic. My respiratory nurse, at the time, was concerned about how much weight I had lost since my last visit.
After a few months it became clear that I couldn’t hide the fact that I wasn’t eating. My body was picking up infection after infection which was resulting in more frequent admissions to the Intensive Care Unit. It was decided that I had to be admitted to a adolescent psychiatric unit. I was 12 years old; the youngest on the unit full of teenagers with a mix of psychiatric conditions. I was placed under a six month section and had my first encounter with the dreaded Nasogastric tube. The taste of plastic and the smell of Osmolite became all too familiar. My time in the adolescent unit was coupled with emergency admissions to the local general hospital for my asthma. Sometimes I didn’t know where I was waking up, I was shipped about that much.
I spent the majority of my teenage years in the unit or in the Sick Kids Hospital. When I was 17, I was transferred to adult services. Gone was the fluffiness and protected little world of the kids hospital, thrown in to the deep end of the adult hospital. Admissions were a lot less pleasant and the reality of how serious my lung condition was, hit home. Medication regimes became more and more, admissions to Intensive Care Unit became more frequent and lengthier. Sub-cut Bricanyl was added to my ever growing list of medication, and shortly after that, oxygen at night. Nasogastric feeding was now part of my everyday life to stay on top of my weight. I had several admissions to Eating Disorder Units but my anorexia was diagnosed as ‘chronic’ and ‘untreatable’ and I’d be sent home to continue with feeding.
My Lung Function has continued to deteriorate to where I’m at now. My LF is 25%, I am on 24 hour oxygen along with s/c Bricanyl 24/7. My medication list is forever growing to the point I take medication to counteract medication side effects! On a good day I can go out as long as I have my liquid O2 and on my not so good days I sleep and sleep, hoping not to wake up in hospital.
I guess reading this back I can see my life is different from most people, but I have never known any different and I can either choose to keep fighting or wallow in self pity at the fact I’m not ‘normal’. And the people who know me will know I ain’t the type of person to think ‘woe is me’! Yes, it’s tough but I’ve come this far and I’m not a quitter! And I don’t intend to start now!
So buckle up, and smile and join me in my journey! I have spent more time in hospital; the day before New Years Eve, I was rushed in blue light with a grotty chest infection. Felt so done in and really a bit annoyed that I hadn’t managed Christmas in hospital. I guess I can’t be greedy though as I got the first New Year’s out in 3 years. Then it was my 30th birthday on the 7th of January which thankfully I managed to escape for, with a lot of persuasion and begging on my part. I had a wonderful day and received lovely gifts and cards from all over.
My sister, who is my rock, held a surprise party which was such a nice thing to do. I got to see friends that I hadn’t seen in years because I’m just not well or physically able to go out and see them any more – or it gets cancelled due to the fact I’ve been taken into hospital. I also got a surprise little kitty called Bella. My good days didn’t really last that long, I was up for an MOT (as I like to call it) LF and Xolair 6 (Anti-IgE) injections on 10th. The results weren’t what I’d hoped. My LF is 17% and I’m now in severe stages of Type II respiratory failure (T11RF) and nothing else can be done. Needless to say my emotions were all over the place, and I was crying at slightest thing. This coupled with the fact I had started producing the most luminous green mucus from my chest made me see sense – the doctor wasn’t at all impressed and kept me captured in Costa Del NHS which is a running joke.
So until next time. As my favourite Lil fish Dori says… “Just keep swimming” and feel free to tweet me!
Muchas Luv Gilly x <3
If you have any questions, or would like to talk to Gilly, please feel free to get in touch.