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.
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| Happy New Year from Warren & myself! |
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.
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| Mummy & me |
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| With the in-laws at Christmas having some fun |
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| Me & my special mother-in-law |
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| Owen, my precious nephew, & me |
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| 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! |
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| My special family - only missing a few here! |
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| 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.
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| With our JHB "family" |
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| A friendship that has stood the test of time. |
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| With my boss/mentor/friend |
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| FaceTime with Farlz - one of my absolute FAVOURITE people from school days |
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| My beautiful friend Kim (from Canada) who I met in Spain. |
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| Me & Helen on our bonding trip to Spain. I couldn't imagine my life without her & her cartwheels! |
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| 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! |
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| Candice is a fellow snowflake & someone very special to me |
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??
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| With Zahidah (another MG warrior), Nicole Capper (Mrs South Africa) & Jonathan (Top Billing presenter) from our Top Billing experience. |
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| "Wonder" movie premier |
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| Tourist selfie in Spain |
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| With Nicole Capper for her "I See You" campaign on Facebook. |
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| Me, Nico & Kelly at our first ever Patient Huddle |
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| 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.
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| 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!
