Following my last post about a crowd sourced map of people with myasthenia, it got me thinking about other digital tools we can use to tell the myasthenia story.
As my job is in the digital sector, I’m always investigating different tools and I’ve recently been trying Flipagram.
So in this blog I’m passing you over to this Flipagram I’ve put together of some of the highlights of my 2015 year of blogging.
The idea of taking photos every day was to show the fluctuations in my condition and this tool is a great way to give a quick overview.
I’ve used Twitter, Instagram, Vine and Facebook before this to get the message out about MG and this blog. I also want to use Ted lessons to create an animation about Myasthenia. But, as part of my raising awareness agenda, I’m going to try out a few other tools like Flipagram to tell MG stories in a more creative way.
Let me know if you’ve got any ideas for other tools to try.
Have any of you played the ‘if you were a superhero what would your superpower be’ game? If I had an open choice, mine would be time travel – geeks, just let me have my fantasy. But, if the choice had to be based on something you are particularly good at, in the real world, mine would be having a super nose. That’s right, I’ve grown up with a super sense of smell and want to use my power for good. Sure, the costume wouldn’t be as sexy as Catwoman’s, but who wants to be a leather wearing cat when you can smell danger a mile away. Hound girl is going to sniff you out!
Back to the point…you know when you’re young and all your mates put their matching school jumpers in a pile? When it was time to go home and to pick out the right jumper from the collection, my nose came into it’s own. I used to get asked to tell them apart by sniffing which jumper belonged to each person. I rarely failed in my mission.
Research I’ve been reading over the weekend, from the University of Pennsylvania, has found that Myasthenia can impair your sense of smell and taste. It wasn’t until reading it that I thought about my super nose and wondered how super it is these days. Being on the immunosuppressant’s constantly makes me have a sniffly nose, which makes it hard to tell just how badly my sense of smell has been affected. Over the weekend, I came across some incredible flowers but, as you could see, I had to get up close and personal to take in their scent.
The research found that, similar neuro degenerative diseases like Parkinson’s, an impaired sense of taste and smell can be the first sign of MG. Has your sense of smell been impaired by your MG? I’m not entirely sure whether mine has or not – might need to regroup my primary school class to do a thorough test.
You may remember me letting the secret slip that after my thymectomy in September I developed a super power. Ok, I’m not sure how ‘super’ or useful setting off shop alarms on entry and departure is but it’s certainly a unique skill. Just me and the serial shoplifters. Well, after feeling all special, the trip over the weekend has made me consider whether I’m just a normal afterall.
Both on the way through Luton security and in Copenhagen, I didn’t set the alarms off. In fact, I wonder if I’ve passed my powers on to Elaine as she managed to set it off on both occasions.
After asking the Myaware community, I was told in no uncertain terms by people who have also had thymectomies that it is odd that I’m setting shop alarms off. My consultant explained the different technology used in shop alarms, magnetic something or other, in comparison to alarms looking for metal. He agreed that it was strange and that I should try to see the surgeon. I did try to organise it but the appointment didn’t work and I’ve not heard back since (task for today’s to do list).
People in the Myaware Facebook group did mention that airport security alarms have gone off for them because they are triggered by metal – which I have in abundance in my chest thanks to breast bone being knitted back together with what looks like chicken wire.
On this occasion, I even mentioned to the security guard that it would probably go off. In this instance, it was straightforward as both sets of security guards spoke perfect English but I have worried about what could happen when I’m further afield. Would I get put head first through the bag check to scan my chest? Actually, that sounds quite fun.
Anyway, the situation now is even more unclear and I’m hoping my surgeon will be able to reveal all if I can get another appointment lined up. In the mean time, I’m still thinking about my costume – a wooly hat seems to be my trademark in the photos so far so that will be included. Does it make me an unsuspecting badass or a mere mortal with a penchant for comfort?
Today I want to share one of the weirdest things that has happened to me during my time as a myasthenic. My consultant has now verified that it is indeed odd so I feel comfortable letting know about my secret powers.
It all began when I left hospital following my thymectomy. A couple of days after returning home, I felt the crush of cabin fever and knew I needed to break free. I wanted a relatively easy walk – preferably inside as the weather wasn’t great. As I was recommended against keyhole surgery, I chose the full open chest option and was still feeling very fragile. This meant anywhere too hectic was also out for fear of being bumped into.
Elaine, my mum and I decided to go to a nearby shopping centre as it met most of my requirements. When we walked into the first shop and the alarm went off, we didn’t think anything of it. But when the alarm in the second shop we entered, and then the third, fourth and fifth, started ringing as I stepped over the threshold – we all looked at each other puzzled.
I had made jokes about the surgeon leaving a piece of medical equipment inside me, but I didn’t think there would be many shop tags in the operating room. However, I’ve found since that day, in certain shops, I set off the store alarms going in and out. Usually my ‘I’ve got metal in my chest’ line covers it even though I was sure that shop alarms don’t go off with metal. I guess it’s the embarrassment factor that stops the shop security guards giving me a pat down.
Explaining this to my consultant, we discussed the technology used in shop alarms and both thought that it was some kind of radio frequency. He suggested that it might be the way the wires holding my breast bone together have been inserted. That somehow they are communicating with the machines, but did say he hadn’t heard of it before. I think I know better.
Naturally, I believe that during my operation I must have gained some superhero powers that I will be able to utilise for good as soon as I find out how. A letter to my surgeon should confirm or deny this. In the mean time, I’m going to be working on my name, theme tune and outfit.