Things that make me feel grounded and bring me back home to myself 💗🌿✨

#selfcare

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You know you’ve come a long way when you can actually throwback to a beautiful photo from *by far the weakest* (mentally, emotionally, physically and spiritually) time of your life without hurting like before. Thank you for sticking by my side through all these years, @rohant! 💗

#friendship

#ProjectCanada

💗 Proud moment 💗

This was literally the main objective of my trip to Canada.

I was in tears during the ceremony as I recollected bits and pieces of our past and the very fact that I could make it to Canada to celebrate my brother’s big day.

If you had asked me four years back about traveling to Canada (for that matter, traveling anywhere), I’d have told you it was a dream that might not come true. It fills my heart with immense gratitude thinking about everything that has gone behind making this trip possible for me.

M

The secret life

While I’m very open and honest about my personal experience with EDS Hypermobility, there is also a ‘secret life’, what I call the back end management which not only is something we (the chronically ill) often choose to not share but also something we often can’t share due to the complexity and implications of actually dealing with the illness 24/7.

Most people I know in the community of the ‘chronically ill’ live as authentically as possible and try very hard to share their stories, both to create awareness and for their personal healing and I find that truly inspiring and amazing.

That said, it’s important to keep in mind that it is NOT the whole story. It can’t be, unless you know us personally. No matter how much we try to put our experience out there, it is not the same as living with us and seeing us live — which is something only our near and dear ones get to see.

On my instagram, I try to share both the good and the bad. Whenever possible, it is as raw as it gets. But the truth is, for the number of times my shoulder (or other joints) clicks in and out, for the hours I spend in bed with ice packs and hot packs and the number of times i get palpitations, brainfogs etc., it is practically impossible to be both having the actual experience and sharing it.

I think that’s the reason why so many people who don’t know me well enough, whether biologically related or not, are under the impression that if I smile I am pain-free or I’m not struggling. And sometime, instead of asking, it is assumed that I am fine. Or better.

Similarly when I am bedridden, it is quite commonly assumed that I am sad to the core. Which again, is an assumption.

The truth is, the ‘chronically ill’ have figured a way to be smiling and struggling at the same time. I know it can get extremely confusing for the rest, but if you ever wonder how we’re doing, I suggest you ask instead of assume.