MG from a sister's point of view

I recently asked my sister to wrote a guest post for my blog, to show another side of MG - that of what the family goes through.

Our very first picture together!

With my sister & brother

MG does not just affect the diagnosed member, but rather the family unit as a whole.

My sister has been there since the very first day that I was diagnosed (in fact I remember squeezing her hand as we were finally told what was wrong with me), & has not left my side throughout this journey.  She has made me laugh throughout & kept my spirits up through the darkest times of my life.  She has researched frantically to see if there is anything else that could help; she has done fundraisers overseas for MG & joined a support group in the UK.  She has never ever doubted me or put me down, but rather encouraged & loved me throughout this entire journey I have been on.

I could not imagine my life without my sister & I am truly grateful to have her in my life.  She is my best friend; my go-to-girl; my own cheerleader & an irreplaceable blessing in my life.  She always makes time for me & seems to know when I need a hug/message.  Throughout my life she has been such an example & someone I have looked up to as a role model since I can remember.

Thank you Katie for taking the time to write this (and for making me cry just reading through it!).  Katie I can't wait to make more memories with you.  You are one in a million xxx

P.S.  My sister is better than yours!

Isn't she just beautiful?

Living with Myasthenia Gravis - My life, as a sibling

Diagnosed in 2004, when Megs was only 15, after quite a few misdiagnoses … initially thinking it was a form of anorexia as she was struggling to swallow so eating VERY little, then diagnosed with depression as she started withdrawing and didn’t speak to us very much and finally we came across Dr Judy Green who instantly diagnosed our precious baby with Myasthenia Gravis and told us we could have killed her, had we left it any longer.  Poor Mum felt dreadful as we had been to about 6 doctors already in the past 4 months and the common diagnosis was “globus hystericus” so the mixed emotions of having a proper diagnosis was one of relief but the severity of that one comment was massive …. Little did we know what lay ahead!

At least Megs was admitted into hospital immediately for further tests and medicated so that we could start seeing some relief for her.  It has been an absolute roller coaster ride ever since but I cannot be prouder of my little sproglet.  She has faced everything head on with guts and determination.  From chemotherapy, major surgery, the list goes on … The doctors and nurses know her by her cheerfulness and something pink as she literally does brighten up a room.

She used to have plasmapheresis and asked for day passes to go shopping or when she was at school, to go to be allowed to matric balls – nothing was going to stand in her way!  She was discharged the day before her 21^st birthday after having had heavy doses of chemo, was lying on the couch, feeling dreadful, but pulled herself together as Jane Linley from East Coast Radio had organised The Big Favour for her, so we went to the Sharks match in a stretch limo and then onto Suncoast Casino for a Black and Bling party.

Megs always looks on the bright side and so facing her operation where they were going to remove her thymus gland, I stayed over with her the night before as I didn’t want her to be anxious… we watched America’s Next Top Model and so she decided to model the surgical underwear they provide, to make light of the situation – and is now quite proud of her “cleavage implant” she has from where they cut her ribs.

I have never come across someone who is as positive and makes as little fuss as this little angel.  She frequently can’t swallow and has to toss her head to help the food go down. Speaking is an effort, so has to rest her head so her body focuses on less muscles, yet she oozes love and positivity.  People don’t understand and frequently say hurtful things such as “at least you don’t have cancer” or “you’re so miserable and never join in conversations.” My heart breaks for her as she needs drugs to survive every single day. Breathing can be an effort. Her own body is attacking itself. There is no cure. She relies on hope. Hope for the future that there will be a breakthrough. I want to wrap her in cottonwool and protect her. I want to preserve her positivity and shower it over everybody. I want people to understand and give her a break. I want people to live a day in her shoes. I want people to be patient. I want people to be kind and loving. I want people to feel free to ask if they don’t understand but don’t judge – just because she looks beautiful doesn’t mean there isn’t a war going on inside and she’s struggling. So don’t hurt her emotionally as well – she’s dealing with enough!  She’s been coping for 13 years and it’s not getting easier. I have the greatest respect for her – I would be worn out by now, but she’s going strong and trying to raise awareness and still keeping her chin up!  She is truly remarkable and I have the utmost respect for her – my little source of inspiration.