Reflections

2017 was a difficult  horrid trying year for me, & for many others that I have spoken to!  I don't know what it was about it, but it just was not pleasant & I am so glad to have it behind me...

But, this post is not going to be about all the bad times, or the fact that I was hospitalised more in 2017 than I probably have been in my entire life put together (& that's a lot for me!); instead I am going to write about the lessons I have learned.

Happy New Year from Warren & myself!

1.  Family are there for you no matter what - even if they aren't able to be there physically.  
I think I have given my poor family a few grey hairs over the past year, but they still love me.  They message me; visit when they can; FaceTime me at least once a day (ahem - this would be my sister who was living in England & wanted to check up on how I REALLY was!)  They know that we are not exaggerating the situation, in fact we are most probably underplaying just how scary & difficult things are.  Although we are living further away from most of our family than we ever have before, our relationships are stronger than ever & I really feel blessed to have them all in my life - even my bossy aunties!!!!
They love me for me, warts & all.

Mummy & me

With the in-laws at Christmas having some fun

Me & my special mother-in-law

Owen, my precious nephew, & me

Millie, my cousin's daughter & my goddaughter had such special bonding time this year when I went to Cape Town for a doctor's appointment.  It is scary how much she reminds me of a younger me!

My special family - only missing a few here!

My sister; Dawie-darling & me on our trip around London!

2.  Friendships can be found in the most unexpected of places!
I have made such amazing friends here - the type of friendships that you read about in books or see in movies.  Friends that I could phone at 2am & they would rush over to be with me immediately.  Friends that brought me home cooked meals when I was going through chemo so I wouldn't have to cook.  Friends who would send me an encouraging message when I was having a tough day - without even knowing how much I needed it.  Friends who drove out of their way on Christmas Day just so they could come give me a squeeze & we could have a quick catch up.  Friends who get my crazy & love me for it.  Friends who drop everything to take me to/collect me from yet another hospital stay.  Friends who didn't mind me going to lie down on their bed to have a snooze while we were there for a braai.  Friends who added me into their inner circle as if there was always that spot just waiting for me.  Friends who understand that even if I don't always reply to messages, they are always in my heart.
I have made friends in hospital; at an amazing international conference that I was lucky enough to attend; through my support groups; through my job but mostly just from people who were there for me no matter what!  This is a shout out to those friends who make my world a better place - I have never known such support & love; & it certainly makes everything a whole lot easier.

With our JHB "family"

A friendship that has stood the test of time.

With my boss/mentor/friend

FaceTime with Farlz - one of my absolute FAVOURITE people from school days

My beautiful friend Kim (from Canada) who I met in Spain.

Me & Helen on our bonding trip to Spain.  I couldn't imagine my life without her & her cartwheels!

Navasha & I met on a FB group that we were both in & we just clicked.  This girl has been there for me through everything & always finds the time to pop in with a smoothie & a smile.  I am so grateful for her!

Candice is a fellow snowflake & someone very special to me

3.  Opportunities fall into your lap when you least expect it.
I think so often we take life for granted.  Being able to rush around with work & play; run a 5km fun run; attend events; being able to actually swallow & enjoy a meal etc etc.
This past year has taught me my limits, but it has also taught me that I need to appreciate every single moment of every day. 
Read that book; tell people you love them; work harder & with more heart; be kind; & live every day as if it is your last.
This year I got to go on my first ever big overseas trip; I had some amazing interviews to create awareness about Myasthenia Gravis & Rare Diseases as a whole (some when my talking wasn't great; but this helps to show a side of the disease that I often don't want to); & I got to meet & spend time with our beautiful Mrs South Africa - who I can now consider to be a friend.
None of this would have happened if it wasn't for me having Myasthenia Gravis.

Nicole Capper featured me on her "I See You" FB page; we had a whole episode of Bophelong devoted to Myasthenia Gravis & Rare Diseases; I was interviewed by my favourite radio presenter, Jane Linley-Thomas from East Coast Radio; one of my favourite blogs that reminds us of the good in life, Good Things Guy, did a feature on me; my special friend from "I Have A Name" did a feature on creating awareness for invisible illnesses; ANN& Shape Your Life did a segment on living with a Rare Disease; I was featured on The Mighty - with 2 different posts! - here & here; I was one of the patients featured on Rare Diseases SA platform for MG Awareness Month; my mum-duck wrote an amazing article from her heart about being the mother of a chronically ill child; & News24 helped create awareness through this article.
Shew - writing those all down really made me realise how much awareness was created this year!  It blows me away.  Next stop Ellen - hey, a girl can dream right??

With Zahidah (another MG warrior), Nicole Capper (Mrs South Africa) & Jonathan (Top Billing presenter) from our Top Billing experience.

"Wonder" movie premier

Tourist selfie in Spain

With Nicole Capper for her "I See You" campaign on Facebook.

Me, Nico & Kelly at our first ever Patient Huddle

Some special friends I made earlier in the year, & we were all interviewed by Anele!

4. Mental Health is just as important as physical health
For years I was too ashamed to admit that I wasn't coping with my diagnosis & the limits it was placing on my life.  This year I finally owned up to it & was put onto antidepressants.  I was so ashamed; until I realised just how much they helped!  I could cope with life.  I wasn't crying every day.  I wasn't lashing out at people.  I was finally getting back to my old self, my happy self.
Take care of all the different parts of you - emotional, physical, mental & spiritual.  It really does make a difference.

5.  Doctors & nurses are human too
I have been so lucky to have found the doctors that I have here in JHB & Cape Town (my MG specialist).  They truly care about me; give me hugs at the end of my appointments & only want the absolute best for me.  They have cried with me when I have relapsed & done a happy dance with me when things improve.  The nurses have become my friends & I often pop in just to go say hello to them - I am always welcomed with hugs & "when are you coming back?".  They have held my hands; brought me tissues; welcomed me "home" & truly cared.
We often forget that they are people too that have their own lives; their own trials; their own battles...  Yet they put this all aside to care for others & provide support.  They see the real side of patients, yet they still love us & do all they can to make our lives that much easier.
My doctors have never given up on me.  They have fought for me & kept trying new treatments to improve my life.  I wouldn't be here today if it wasn't for them.

6.  Find a job that you love
I was terrified leaving my stable job with a stable income & doing something that I knew & understaood when we moved from KZN.  I wasn't able to find a job here in JHB due to my constant hospitalizations; & this is where Kelly stepped in.  She offered me a part-time job that I could do when I felt up to it so I could still earn a form of income & not put undue pressure on my husband.
Over time, I have realised that this is my passion!  I love what I do.  I love interacting with patients & helping them as best I can.  I love the ladies that I work with & the fun that we have when we are together.  I have never been happier doing any type of job & I look forward to turning on my laptop every day.  No 2 days are the same & I am constantly learning.  I have become more compassionate; more understanding & also finally found my voice in society.

Kelly, Shevaun & myself - some of the team

So, 2017, you have taught me a lot of lessons.  But, you have shown me that there is always sunshine after a storm.  I have learnt to see the positive in every day.  I have learnt to #ChooseKind. 
But most of all, I have learnt to never give up.  Even when it feels like it is the end of the road; we are still on a journey.  Enjoy the views.  Sit back, relax & look forward to what is still to come!

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!