Wednesday 17 January 2018

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!