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Tag: support

Stronger Together – MS Fundraising Dinner

Posted on June 1, 2018 by Rania

What an amazing night! Thanks to all our supporters! We are absolutely stronger together!

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Walking out of your Ocrevus infusion like THANK YOU, NEXT 💁🏻‍♀️ • There’s the door, see you NEVER...jokes see you in 6 months 😒 • P.S. I’m still not feeling great so I’m accepting it and have basically just slept myself into oblivion. The worst parts have been feeling extremely lethargic like my legs don’t even work and the bloating which feels like my organs are about to exit my body through my mouth 🤢 • I chose not to take Phenergan last night and I couldn’t sleep so I think it’s more a reaction to the methylpred they give you before the Ocrevus. I’m going with slow and steady wins the race and hoping tomorrow is a better day ❤️

Round 3 👊🏽 • Three is my lucky number... not really but today it’s going to be 😂 • We are hooked up and ready to smash it 💪🏽

Best way to spend my last weekend before treatment 💃🏻 celebrating this #legends Hens Night @miss_leese love you to the moon and back 💖 • The countdown is on 3 more weeks 😍 #cantwait #lisagetsrobbed

Sometimes when I’m busy blocking out the negative thoughts a reminder about your next dose of Ocrevus gets sent to you and somehow through the tiny little cracks the negative thoughts manage to surface 🤷🏻‍♀️ • The thoughts that make you think I am in fact not as strong as I think and I am in fact not super human and I am in fact a big fat sook but I need to remind myself and every #mswarrior that you are in fact entitled to have these moments and should allow yourself to. • I hate these moments and I hate when I let them seep through the cracks because I HATE feeling anything but happy but I know you need to let every emotion take it’s place. • I just got really overwhelmed knowing I had another dose very soon and they seem to just bloody creep up so quickly. Just when you feel like you’re feeling better and got your groove back BANG POW 💥 you’re in the chair again, in this constant rat race. I just started stupidly imagining this constant life with constant infusions and although I’ve lived like this for almost 10 years this year I feel my emotions have come crashing down. I believe it’s because I am 30 this year and I am questioning every single little detail and decision that has led me to today. It’s hard, I act like yeah totes got it together but sometimes behind the smile there is lots of worry and pain 😪 • I know I need treatment and I know that I’m lucky to be on Ocrevus and I know that I’m lucky that I’m still mobile and I know that it could be worse and I am so grateful for being well looked after and I tell myself this on repeat but sometimes just sometimes the cracks show and it’s really bloody hard to be grateful for constantly being poked, prodded, in MRI machines, dealing with side effects and just in general feeling like shit. • So my point today is allow yourself to feel these emotions and surround yourself with a kickass crew that will let you snot on their shoulder and remind you it is ok not to be ok and you’re still a bad ass 💪🏽👊🏽 even if you’ve snort cried for half an hour and end up looking like you’ve been stung by a family of angry wasps 🤧😭😂🐝❤️

Happy International Women’s Day! I love the theme this year #balanceforbetter and I am so proud of the organisation I work for who enable and encourage their people to create balance in their work life and home life. • Today I heard a number of thought leaders share their insight into what balance for better means to them. • I heard about unconscious bias and the importance of being conscious of your bias to empower better decision making. • I heard about greater possibilities of creativity and innovation when there is equality in business. • I heard about 2029 – the workplace of the future being gender-balanced and the optimism of how we are successfully closing the gender gap not by replacing men but by working with them and being #diverse • Everything I heard today gives me hope, not only in my career but my home life where I often struggle with dreams of where my career will lead with such an invisible disability that even as recent as this week kept me at home because my white blood cells wouldn’t re-generate. It gave me hope to hear these men and woman in leadership positions make promises to lead with balance for better. To hear that we must keep searching for balance for imbalance is harder in the long term, that balance is so rich in possibility but not without challenge and that balance is crucial for productivity and sustainability. • This last line especially resonated with me and made me feel so much better about being at home for a week and made me realise that to sustain my health and energy I MUST prioritise balance both at home and in the workplace. • I love the thought and the conversation that this day evokes and I love taking a moment to document what this day means to everyone. So what will you do to create balance for yourself, in your work life, your home life and your environment? 💁🏻‍♀️💜

When you escape house arrest for a couple hours 🕺🏻 • I didn’t take the decision to leave the house lightly but sometimes there’s more risk in becoming mentally and emotionally strained when you’ve been at home for days on end then the risk of getting out for a couple of hours. • Chronic illness is relentless, it’s constant and it NEVER GOES AWAY 😑 You spend half your life working out what to eat, when and how, while trying to reduce inflammation and feed your mitochondria, then you cop about 50 punches from other ‘issues’ your treatment causes 🤦🏻‍♀️ • Your hair is falling out because your thyroid has taken a hit, you lose weight and gain weight quicker than a yoyo spin, your gums bleed, your toe nails fall off, you feel someone is constantly throwing bricks in your face and then you walk around death staring people who cough because you’ve become THAT PERSON that should just live in a bubble because at this rate it would seem WAY EASIER!!!!!!!!!!!! 💀😷 • Lol it felt good to get that out 😂 in short I’m so grateful for how my disease has been managed but sometimes it’s all too much and sometimes you feel like you’re going a little crazy 🧟‍♂️ SO LET IT OUT....please rant below and tell me I’m not the only one who has these moments where I’m plotting my next move to escape my body so I don’t have to spend another 10 years calculating every single food item and outing just to keep well!!!

Recent Posts

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Public Speaking
Ocrevus and me…
Mental Health Awareness
Stronger Together – MS Fundraising Dinner

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