Wednesday update! 

To be honest, I’m super beyond fatigued. There are times I wish things looked different, or that my health was like that of any 25 year old. Sometimes I feel that’s the kind of life I’m more familiar with and had plans for.

What happened then? 

Well, I know what happened. Life (actually) happened.

Lots of things went wrong and many others went right for me to be where I am today. Both ways, I’m grateful because I’ve grown as a person and figured so much out! Dealing with a chronic illness is painful and challenging as anything can be – to live with it in your body and make choices that honour your health, which involves making some really tough decisions. REALLY tough. You have to find ways to embrace your limitations and open your eyes to new possibilities – and believe me, it takes time. Ages, sometimes. At times you feel great, and at times you don’t.


Every day brings new opportunities and new challenges – sometimes both, and you don’t know what to do. I’m always trying to make choices from a place of my ability rather than my disability… But frankly, on days like today, it just doesn’t work. You want the day to end. You want to be in bed and wait for all your energy to come back to you.

I can’t say I hate life or the circumstances I’m dealing with – no, it’s a part of me. A part of who I am. My experience is now a part of my biology. And my biology is a huge part of my life. It is what it is and I’ve largely come to terms with it. It has made me who I am today and it is making me into who I can be. I strongly believe that I own this illness and don’t let it own me – on a greater scheme of things, I’m learning to manage. Even then, it is still very physically, mentally and emotionally tiring at times.

It’s only 3pm and I feel as if I’ve been up for 3 days, ran 3 marathons and been on anaesthesia since. Seriously, I want to hibernate for a long time. This week has been crap and tiring. I can’t wait for it to end :) Enough already! I think next week will be better.✨

Love to all



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