I will spare you the full story because that will take all day but part of it is pretty important and relevant right now so keep reading and it will make sense. At 4 years old I was diagnosed with a rare form of Muscular Dystrophy called Nemaline Myopathy and I mean rare. Even when I say the condition to medical staff they have to google it!
The way I have the condition is different to others with the same diagnosis though, even Great Ormond Street Hospital couldn’t get to the bottom of it all (pretty impressive in a way right?). So with this in mind there is always bumps in the road that aren’t necessarily expected for my condition and other time there are things completely typical to my condition! Confused yet? Everyday is an adventure to say the least.
So I work, as you probably know, and recently a nasty virus has been working its way around the newsroom and when Geoff who sits next to me went down with it over New Year I knew it was me next. The start of this week I got a cold and was managing pretty well considering and recent tests showed my lungs were clear and working at 98/99% in terms of oxygen levels.
Now if you were to get a virus you rest up a few days with some cold and flu and then get back to it. Well it doesn’t work like that for someone like me. In 2012 on the Monday I had a cold and by the Friday I was fighting for my life which is a scary thought.
So right now I am home with what began as a cold and became a virus which luckily isn’t affecting my breathing (yet) so preventative measures are put into place in a heartbeat.
I have Vick Vaporub on my chest as well as mixed with hot water in the room. I am sniffing Olbas oil and using Cocoa butter on my nose to try and stop it getting sore from blowing it so much. Hot showers are also good for trying to clear your airways. All of these are thing you could do when unwell but using a cough assist and ventilator aren’t things you have to do are they?
I first starting using a ventilator way back in 2008 and I have to admit its one element of my condition that I have always hated and rebelled against. The first vent nurse I had, Hayley, has the patience of a saint! In 2012 when I was unwell I had to use the vent more to get my lungs working again but since around 2013 the vent now only comes out if I am unwell to keep my lungs going to prevent anything going onto my chest. The cough assist has a similar concept. I cannot make myself cough, and if I do have a cough when unwell its pretty useless, so the cough assist helps keep everything moving so nothing can settle on my chest.
Like I said this is an element of my condition that I’m not a fan of and have always tried to keep hidden but I realised today when I put it on watching Suits that actually these machines help keep me alive and well so I really should appreciate it instead of hiding it (from myself and the world). I bet I am not the only one in this position either. As a 21 year old who is fairly independent person I don’t want to believe there is something I can’t do but every now and then I have to realise that actually my lungs can’t do it if it gets down there so sitting with a mask on for a couple of days isn’t the end of the world … but not using it could be!
So if you’re reading this and you’re the same as I was. Please stop and think. Yes it’s “not cool” but it is saving yourself, so let it! Don’t be stubborn and just sit down for awhile and get yourself well again!