Living With Home Ventilation
This blog post idea has been floating around in my head for just over a year now and with it being World Home Mechanical Ventilation Awareness Day today I thought it was time to get it down in black and white.
A little background information for people who don’t know, I’ve wore a bipap non-invasive ventilator overnight since I was 8 years old and that is because due to my muscle weakness, I struggle to breathe overnight as our bodies relax more and there was a risk of me stopping breathing. Therefore, my overnight ventilation pushes air into my lungs in a certain rhythm to support my breathing. The rhythm of the air I receive also reduces the carbon dioxide in my body, reducing the chance of headaches and giving me more energy. This is through a full-face mask and even though it took me 3 months to even put it on my face whilst in hospital it was my lifeline for 20 years as it gave me the energy I needed to live my day-to-day life. I still wear my overnight one daily however, 2 years ago my breathing during the day started to deteriorate more and I had to start using a bipap ventilator during the day too. It isn’t as much of a powerful air rhythm as my overnight ventilation but I just started to need that continued support during the day.
It was a difficult transition to get used to wearing my ventilator during the day and I’m not going to lie, I resisted doing it for so long. I first started using my full-face ventilator whilst transferring in my hoist from chair to chair, I then started putting it on after I had eaten in the privacy of my own flat and then I reluctantly spoke to my ventilation team to trial different masks to allow me to eat and essentially communicate easier whilst out in public. This is where my nose mask came into play. COVID was a very helpful time as well because I was able to hide my ventilator mask under my face mask, except for the random tubing sticking out of my ponytail, no one knew it was there.
I must add though I have never been ashamed of my ventilator as it has so many benefits that I’ll explain soon but, I was worried that people would think I was seriously ill and treat me differently. I was even worried that people I knew would find out that I had started wearing it as it was more of a visual representation that my condition had deteriorated.
I will always remember the first time I felt comfortable wearing it in public. I had visited the Crieff Hydro Hotel for afternoon tea with my friend/carer, I didn’t wear it whilst having our afternoon but after I’d eaten I was struggling with my breathing but still wanted to explore the hotel so I went to the ladies toilet to put it on. Two little girls came in with their mum which instantly made me nervous as children stare and are very inquisitive, I said “hi” like I usually do to show children disabilities aren’t scary but instead of staring or asking questions one of the little girls just said to her mum “look that girls getting her hair done”. Now I know she might have asked questions once I wasn’t there but it just made me feel so much better because she didn’t focus on my ventilator, she just saw me. I actually vlogged that weekend away which you can find here and you can probably see how more comfortable I was finding wearing it throughout the vlog.
As I mentioned my ventilator is my lifeline, if I didn’t have it I wouldn’t be able to breathe for too long independently. Without taking the big step to start wearing it in public I wouldn’t have been able to continue working, wouldn’t have been able to travel to Disneyland Paris, be a bridesmaid for my best friend or to be honest I wouldn’t have been able to leave my flat at all. And for those who know me that would not have been an option, I hate being in the flat as I’m forever out and about. With my daytime ventilator, I’m also enjoying food more as I used to just have a few forkfuls and stop eating as I couldn’t breathe, my friends and family are so surprised now when I actually finish a meal. I still don’t eat huge main meals, but I wouldn’t of even finished a starter before.
Finally, it really helps that my ventilator is so portable in a bag that the NHS gave me so I can have the ventilator securely on the back of my wheelchair and the external battery is able to be connected throughout the day so that when my ventilator battery starts to die I can quickly get the external battery switched on. So, if you ever hear me beeping I’m still breathing, I just need to switch on my external battery.
In all seriousness though and I’m very grateful for the home ventilation I have and would say it definitely has a positive impact on my life. It is very strange now looking back at photos of myself without my day ventilator however, it is just a visual representation of the different chapters of my life and I’m very exciting to see what is next.
