Thank you, Canada!

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. ❤️

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#home

Thank you for the safety, refuge, healing and all the joy and laughter under one roof. You’ll always be home. This photo is also making me miss my chosen family @shreya.j90 @rohant @rowanity @botakbaba + Raj @drishtisk @prachh_p @abhikdamani ❤️🌙✨📿🧘🏼‍♀️

“Do you ever get tired of looking after your body?”

A question I often get is whether I ever get tired of looking after my body. Yes. All the time. It’s a lot of work, much like looking after a hyper active kid who wouldn’t let you rest and requires all your attention because you never know what he might knock over or set fire to. Of course it’s tiring!

Over the last few years I realised that sometimes it’s almost impossible to find a direct link between what you do and what happens to you. The right thing to do then is to do your best based on the info you have. Can you imagine the kind of questions we’d have answered by now, in the realms of chronic illnesses and life if it all worked on a very distinct cause and effect basis?

I’ve personally noticed that there could (not always) be a cumulative factor to it instead. Ten different things added together may lead to a particular favourable or unfavourable result.

For example, sticking to my daily routine in terms of self care and rest, my nightly routine, my weekly physio and pilates, all my strengthening exercises, medications, spending time in my safe and healing environment, following my specific diet, all my doctors’ appointments, not signing up for any societal obligations and exercising the power of saying NO, usually allows me to manage my health symptoms better and sometimes even do more.

Similarly, not being able to do any of the above causes my body to start de-conditioning and overtime I start to lose my day to day strength. Now, add that with significant movement from traveling and a few days of too much activity and my health starts to deteriorate. Hence why I speak of sticking to a daily routine, setting flexible goals and drawing boundaries for yourself. It can become the difference between me fighting a chronic illness versus managing one — and that’s a big deal.

Over the last ten weeks, i was somehow managing my symptoms but not doing a very good job of it. Sooner or later, my body was going to begin to de-condition. It’s happening now. After a horrific night of painsomnia and lack of sleep, I just spent the entire day curled up in bed.

I think I’ve hit my limit and all I want to do is rest. #chronicillness

Jenna’s mobility fund

Hi All,

I know an eighteen year old girl from Instagram (her name is Jenna) who is fighting Dysautonomia/POTS (Postural orthostatic tachycardia syndrome) which causes a sudden and abnormal spike in heart rate just from change of positions (lying to sitting etc.)

She is currently in need of $500 to get herself a mobility device (a seated walker or electronic scooter) which will allow her to feel a little more independent and help her have a better quality of life. Even being able to step out for a walk on your own makes a big difference!

Please read her story below. If any of my friends here want to and can afford to make a donation, here’s an opportunity to do your part and help someone out there. I‘ll be donating right after uploading this post and I hope some of you do the same! It will mean the world to Jenna and I’ll be happy that I have friends who want to help 🙂

Here’s the link: https://www.gofundme.com/jennas-mobility-fund

Update: we have raised $100 just today and need about $400 more to go! Even a small donation could go a long way.

Lots of love,

Manasi

Devil’s Punch Bowl

We skipped the actual hike down to the Devil’s Punch Bowl because it would’ve been just too much for my body. I’m glad I made it till the top of the bowl and was able to walk around a fair amount. I don’t remember the last time I did something like this. It’s definitely a big deal. A few years back I couldn’t have imagined being able to visit such places.

While I’m not big in traveling due to the pain that comes along with it (it doesn’t even make me sad and nor do I feel like I’m missing out because I’d rather be in less pain, suffer less and have manageable symptoms rather than travel, not be able to enjoy much and deal with unpleasant consequences later), I do love the nature and believe that it has a powerful, healing effect on me. Sometimes, I need that more than anything so I make a conscious choice to push myself a little bit in order to let me experience nature to some extent.