I am more than MG

Almost 2 months ago I landed my absolute dream job – helping with administration for Rare Diseases South Africa.  It has relit a fire within me & reminded me about my passion for helping others.  It has woken up my brain (it was starting to turn to mush not doing much at home since July) & really made my heart happy.  I feel like I lost a part of myself over the past few years & was simply floating along doing what society expected of me, & I was allowing others to squash me & my dreams.  I allowed negativity into my life & was more focused on the “sick” part of me, without realising I needed to take care of myself as a whole!

Last week we travelled to Stellenbosch for RareX (an international conference on Rare Diseases – the first of its kind to be held in Africa) & I feel like I really learnt so much.  I met people from all over the world; was privileged to listen to speakers from different areas of the rare disease society; & medical professionals, patients & pharma companies were intermingling without any feeling of “not being good enough”.

  

Our welcome to Spier conference centre

The Rare Diseases SA stand with some of our "Rare Bears"

"Support in a Shoebox" explaining MG in simple terms - of course lots of snowflakes, a spoon, a ragdoll, an explanation of MG, & some of my medicine containers.

Although I pushed through long days, was on my feet for hours & chatted to everyone I could; I was happier than I have been in ages.  Every night we had something going on – dinner with friends, a cocktail party, a gala dinner, or just an evening in the bar.  I made new friends; drank wine; danced like a crazy person & laughed until my stomach & cheeks were sore.  My endorphins were out of control & I finally felt like the old Megs was back!  I allowed myself to have fun instead of just being boring & responsible – as per usual.  It was also so amazing telling people I had Myasthenia Gravis & they knew exactly what I was talking about, & could even offer some advice/encouragement.

Shevaun, Kelly & myself on day 1

 I have realised that for so long I didn’t allow myself to have fun because I was so scared of the after-effects on my health; but also I allowed other people’s unkind words to control what I could & couldn’t do.  I realised people aren’t judging me when I start slurring, & friends will always laugh with me – not at me.  I felt like I was floating throughout my time there, & it has continued since I returned home.

With my new friend, Christina, from Kenya

It was a great reminder that Myasthenia Gravis isn’t all there is to me – I am still Megan Toni & I need to take care of all aspects of myself.  It is important to still have fun.  Take time to rest & take care of yourself; but still nurture every other part of yourself – emotionally, mentally & physically.  Make your heart happy; tell jokes; feel free to make a fool of yourself; don’t allow yourself to become a ‘plank’; laugh as often as you can; & make new friends wherever you are.  This will all help bring out the part of yourself that may have completely disappeared over the years of being chronically ill!