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|
|"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|