Month: August 2018

Once a dancer always a dancer

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So I was busy decluttering my to-be home office, discarding the old and making space for the new. It’s a ritual that I take seriously because it allows me to work with my feelings about the things I own, my past, present and future.

Determined to pull an all-nighter according to Canadian time so that I can peacefully fall asleep at night, I decided to play a list of fast Bollywood songs which is specifically created to lift my spirit up from time to time. I thought it was helping me stay up and get work done.

Just then, this one song plays and I’m like nahhhh, everything can wait. Everything must wait. I need to do this.

Think about it for a moment:

With the dark cloud of chronic illness constantly hovering above us, what can we do to lift our spirits?

What sparks true joy within us?

Could we be letting our disability confine us more than it needs to?

Can we not find ways to work within our limits and still experience similar feelings of passion?

I think we can.

We’re all different, with different illnesses, different degrees of severity, different scale of limitations, different support systems, different biographies which could very well translate into a drastically different experience altogether — there’s absolutely no reason for us to even make that comparison. All said and done, each of us is doing our best to work with the cards we’ve been dealt.

BUT. In the midst of the pain and suffering, I think it’s possible to find ways to work with or around things we truly enjoy. I can’t dance like before, nor can I move with as much energy, but I do know for a fact that when I’m on my roller chair and if symptoms are manageable for the day, I might be able to move a little and FEEL that same feeling I experienced when I danced in the past. I do have to be careful though but I’ve reached a conclusion that you can’t take dance out of me.

It makes me feel alive and so I do it very often :) I hope you enjoy my crazy and find something that makes you feel a tad bit crazy too.

Lots of love,

Manasi

#onceadanceralwaysadancer #bollywood #dance #passion #love #joy #wholehearted #chronicillness #pain #fatigue #suffering #smile #invisibleillness #ehlersdanlossyndrome

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#butyoudontlooksick #butidontcare

Please tell me what ‘sick’ looks like✌🏼favourite spot in my new apartment: my lovely B E D ❤️ Also, till sometime last year, I couldn’t even sleep/lie-down on my tummy because my shoulders, elbows and wrists couldn’t weight bear without sublaxing or dislocating. I still can’t spend too long like that but hey, something is better than nothing!

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I don’t see a reason why we need to entertain toxicity or things/people who trigger us in our space. I do believe in self-reflection, though, so I make sure to sit with my thoughts for a bit. three things I keep in mind are:

1. People are the way they are for their own reasons and their judgement or behaviour has nothing to do with you. More often than not, it’s a reflection of their own insecurities and sometimes they may not even be aware of it

2. It’s your responsibility to maintain your sanity. Do what needs to be done to protect it, whether that’s to say a clear no or a yes. Show up for yourself.

3. Do the self-reflection. Ask yourself what is triggering to you and why because that’ll give you some insight and show you where work needs to be done.

20 years later

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Experiencing the monsoon in India after a good 20 years. It’s beautiful outside. This is what I wake up to every day now and it’s been lovely. I was dreading my life here during summer just a few months back. It made managing my symptoms so much more challenging! Thankfully, it’s 22 degrees now which feels quite calming to my system. I’ve returned from Canada (strange how it felt so much like home) with so much more clarity than when I left but the question that still lingers is whether India will ever be home. I’m going to let the question rest for a bit and allow the answer to come up on its own. Despite knowing for a fact that I’m very open to giving this place a chance, I didn’t exactly feel welcomed here when I landed. I still haven’t found words to the experience on the airport but I know for sure that it was traumatic. It was trauma that I need time to recover from. At this point, I believe that creating a safe space + health routine that is grounding and supports my well-being would be a good starting point. Last couple of days were a stretch but I wanted to make sure my space is set before my recovery starts. To be very honest, the only place I find some refuge right now is in my very own apartment. It’s my sanctuary.

Thank you, Canada!

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It makes me a little emotional (in a good way) as I write this. I’ve been in Canada for the last three months and I’m now left with just three days.

I’ve had all sorts of days here — days when I was completely bed bound, days when I had to cancel plans last minute or call people over and days when I was out at a stretch surprised I could even get out of bed the next day.

It would be inaccurate if I said I didn’t struggle at all. I did. But it would be wrong to say that I didn’t have an absolutely amazing time here. I needed it. My brother and I managed to cover at least 80% of our must-do list, spent hours laughing + crying + talking + cooking, and, managed to set up his very first apartment — that’s A LOT!

What clearly shows I’ve come a long way is the very fact that despite doing so much, there were no times when my body gave up on me. Not a single time that I needed urgent medical attention or had to be rushed to the ER which was pretty much a bimonthly occurrence in the past. Not once did I hate on my body for being in pain or holding me back either. We were on the same team, throughout.

I managed to stick to my strengthening regime at least 65% of my time here and walked whenever I could. SIBO diet was my basic guideline in terms of food but I allowed myself the freedom to mostly have everything for the time being. I was also able to stick to my meditation and self-care ritual which I can’t do without anymore.

It helped be surrounded by people who were supportive and gave me space to own my health.

All my friends and those of my brother’s, were so helpful and loving. I was blessed with physiotherapists who respected my pain-management plan and made sure I got what I needed. In all honesty, I couldn’t have asked for more during my three months here. This has been a dream come true.

Canada, I’ll always have a soft spot for you. Thank you for the clarity you brought into my life.

Thank you for the time and space you created in the midst of a massive transition.

I feel more prepared to return to Pune and focus my precious energy towards things that truly matter. ❤️