World IBD Day 2016

So 19th May marks World IBD Day, and I am supposed to wear purple to mark the day and am probably supposed to say something inspiring about living with IBD. Well, I lack purple articles of clothing that are appropriate for the office, and inspirational isn't my style.

I will say that living with Crohn's Disease is, well, pretty shit.

I will, however, use this opportunity to say that I passed Masters Dissertation with a rather respectable grade, which means that I am pretty much finished my Master's Degree. I am equally happy and relieved about it. Being World IBD Day, I will say that I not only completed this while working full-time, but also while dealing with IBD. I completed one module while in a yet-to-be- diagnosed serious Crohn's flare-up with one third of my body weight melting away, and another while tanked up on Prednisolone and battling serious side effects, including a pred-induced mental health problems. The Dissertation was written while trying to recover my physical and mental health. And all this while battling a medical model that is incapable of seeing me as an individual.

Inspiring? Well, if you think so. I just know it was bloody hard work.

#WorldIBDDay #fuckyoucrohnsdisease

Catching my breath . . .

Bloody hell, it's been busy. Work is always busy, but there's been loads of other stuff going on, including finishing a dissertation for my Master's Degree while working full-time.

It's also spring, which means that I've been outside more. It also means this -

Seriously, I want to scratch my eyes out!!

However, that and various events in Canada over the last two weeks has had another of my health conditions on the brain - asthma.

I generally don't have much to say about my asthma unless I'm sick. I'm very lucky that it is incredibly well controlled most of the time thanks to daily doses of Flixotide (Flovent), and it is unusual for me to reach for my reliever inhaler unless I am preventably taking it before exercise. My asthma nurse doesn't even bother calling me in for an annual review anymore. She told me last time that although my peak flow (how lung capacity is measured) isn't brilliant, I'm one of her few patients who takes her inhalers properly and I am clearly managing it. But believe me, that is not the case for everyone.

Last week, the province of Ontario passed Ryan's Law, which mandates that schools must allow children to carry their own inhalers. http://www.cbc.ca/beta/news/canada/toronto/ontario-law-passes-to-let-asthmatic-kids-carry-inhalers-in-school-1.3055534 This came about because a 12 year old named Ryan had a severe asthma attack at recces and couldn't access his inhalers because the school required these be held with school staff. The staff didn't recognise how severe the attack was and didn't get him his inhalers. He died.

All I can say is that this is a scenario that strikes fear in every asthmatic. Having a severe attack is utterly terrifying. I've been fortunate that it hasn't happened often to me, but as soon as I read about it, that horrible feeling came back to me because I know exactly how Ryan felt in the moments leading up to his death. There are no words to describe the sensation of not being able to breathe. And there are no words because you can hardly talk when having an attack as you can't get breath out. And I strongly suspect what was going through his mind was, 'Just get me my fuckin' inhaler!!!!'

Seriously, the average 12 year old is more than capable of managing their own inhaler. Make sure the staff have a back up one, but otherwise the child should be carrying their own and should know how and when to use it independently. Teaching kids to understand and manage their condition is part of helping them to learn their own body. This will help them to become adults who take responsibility for their own health and who are able to approach the medical community with confidence about their chronic illness.

I think we need to give kids some credit on these things. Kids are generally a lot smarter than we grown-ups think they are. We should treat them as such, and recognise that they are likely more expert on how their conditions affect them than we are.

Upwards of 1 in 5 children have asthma. In some regions, it's much higher (I'm looking at you, Teesside). Just because it is an illness that can be controlled through the wonders of modern science doesn't mean that it isn't serious. Asthma can, and does, kill.

Despite some recent claims that asthma inhalers have become a 'fashion accessory'
http://www.theguardian.com/society/2016/apr/05/asthma-overdiagnosis-in-children-must-be-tackled-experts-warn, we need to remember that inhalers save lives. And an inhaler likely would have saved Ryan's, if he could have gotten his hands on his.