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

How do you define work?

https://themighty.com/2018/02/unable-to-work-because-of-illness/

Every bit of this resonates with me.

It’s a constant struggle for people like me to remember our worth when there is so much stigma around being sick (especially young and sick) and not being able to work.

It often makes me wonder, how do you define work anyway?

Does work = I bring money to the table every single time? does my voluntary work with kids with troubled childhood which doesn’t earn me anything but makes me feel valuable and like I’m making some difference count as work? Does me trying to help an individual who is newly chronically ill/struggling with their health mean anything in the society at all?

What about the times I teach classes hoping they help those who participate — does that count as work even if it’s not always sustainable? What about the job I did as a receptionist at a pilates studio hoping I’d be able to stick with it and then got bedridden — does that count at all? Is that seen?

Does it matter that people like myself at one point had great aspirations and goals too and had to leave those behind, grieve our old selves and learn to accept what we’re presented with? Does anyone ever see the pain and the courage behind having to leave what brings most of us financial stability and freedom in order to prioritise health?

What about the work you put in day in day out to look after a faulty body? Imagine having to look after an extremely mischievous and sick child who doesn’t listen to you for twenty four seven. No break whatsoever. Not even when you sleep.

It’s easy for people to ask, “what do you do?” because it’s the most common way to start a conversation. It’s also very understandable and I have a standard answer ready. But you won’t believe the number of people I’ve come across up till now with the mindset that if you’re not working, traveling and or working out, you’re probably doing nothing. Or not doing enough of something. Or aren’t ambitious enough. Have no goals. Have nothing figured out.

What makes so many people think that those who’re sick are lazy or not ambitious enough? Couldn’t our ambitions and priorities have changed? Can we not bring empathy, compassion and kindness to the table instead of money? Is it not possible for us to do our part in some other way? Can we not be the people you turn to when things aren’t going right? Can we not support the family and household in other ways?

Or how about this: is it not possible that by us doing our self-work and learning to accept and tend to our illness allows us to manage the illness a little better and hence take some load and burden off those who are trying to support us? Isn’t that work too?

20 degrees and sunny and loving it. Yes, yes, I know. There will be snow, my joints will hurt, winter gets depressing blah and blah and blah. Sure, but what matters right now is that I’m here today and that at one point, I didn’t think it was possible.

This place is making me dig deeper, unravel yet another level and is sort of making me feel lost in a guided way. It’s not the kind of lost that makes you feel afraid. It’s quite the opposite. I’ve been waking up every morning to a renewed sense of curiosity which is nice and refreshing.

I’m looking at things around me, some familiar some not. But I’m seeing them differently. Maybe I needed this. A break, an opportunity to put other things aside for once and be, even if it’s for a while.

I’m not talking about a break from being sick. No, that doesn’t happen. I’m referring to a shift in focus. Not distraction. But to zoom out and see the bigger picture one more time. From constantly *having* to figure out and find solutions quickly (this year is my 10th year of being sick, 6th since diagnosis) to allowing myself some grace.

From being bedridden for 6 months last year to starting to teach again to having to stop again to moving to India to figuring out a million and one things in a new environment (new societal and cultural norms) to adrenaline fatigue and flares of different symptoms, I just haven’t gotten a chance to truly take a long enough pause and realign myself.

And for this reason, it’s quite likely that Canada will hold a special place in my heart. ❤️

#thankyou #canada #2018 #chronicillness

Sometimes I wonder if there’s any limit to the pain I experience. Then I suddenly remember that there is only limit to the suffering around the pain and the limit is my mind. The pain is in my body. The suffering is in my mind. Everyday I wake up and choose to lessen my suffering instead of only trying to rid my body of pain which I know has reasons; of which some are beyond my understanding. Thankful to be here today, despite all the different kinds of pain in all the different joints and partly unexplained pain that we are currently investigating again. Happy weekend!

💕

So I’m sitting in my living room listening to mantras, my palo santo burning near my bookshelf, and i suddenly realize how quiet my entire apartment is. Everything is quiet. I’m in a noisy country but at this very point in time it’s all so quiet around me. I love this. I crave for this so much. This quietness is something I want and need to live this life to my very best.

There’s been far too much movement in my life lately (or should I say, all my life) that these moments of stillness is what brings me a sense of stability and peace. It allows me to connect with myself, which has been a little hard lately considering how terribly off track I am in terms of my daily routine and rituals that help me stay sane and manage my health. I can’t possibly stress enough how much a routine and some personal rituals have helped me to get here.

As the unpacking ends and the actual settling in begins, it looks like I can finally let go a little, slow down and focus a lot more on my health.

For the last eight months or so, my health took a backseat as I simply had to get through this move. I’ve been feeling sort of out of my element, you know, kind of scattered and all I know is that it’s not where I like to be. Despite dealing with a lot more health issues throughout 2017, I’ve had to push myself and make things happen. My thought was, the quicker I got things done, the quicker I got to rest. And now that my sanctuary has come alive to quite some extent, it’s time to prioritise health and self-care and work towards my next goal. More on that later.

Okay, I’m going to keep my phone away now and get back to sitting still. To listening to my heart beat. To watching those crazy thoughts come and go. To noticing pain.

To being thankful for being here.

#sanctuary #quiet #evenings #peace #calm #love #home #mantra #meditation #chronicillness #pain #suffering #eds #ehlersdanlos #ehlersdanlossyndrome #illness #routine #rituals #onestepatatime #gratitude #thankyou #health #mind #body

Rare Disease Day 2018

Today is a big day for us spoonies.

It is the official Rare Disease Day, an observance held to raise awareness for rare diseases and their impact on the lives of patients.

While the purpose of today is to spread awareness for diseases and disorders that affect only a small percentage of the population, I’d also like to take this time to say a big thank you to the spoonie community for making me realize that there is hope, especially during the worst of my years.

Thank you for doing the best you can with what you have and where you’re at and inspiring me to do the same.

Please take a moment today to validate yourself for the progress you’ve made and for the strength and courage you exhibit despite your daily struggle.

I’m ever so grateful to have found to have found this community. You serve as a reminder for me that we are in this together. Thank you for being you, for sharing your story and spreading awareness for all things invisible to most eyes.

Keep going one day at a time!

Friends and family,

If you’d like to show some support and help share awareness, log on to rarediseaseday.org, click get involved and download the material which you can then share on social media. Alternatively, drop me a DM and I can share some material with you.

Love,

Manasi

#showyourrare #showyoucare

#rareillness #rarediseases #awareness #2018 #february28 #rarediseaseday #ehlersdanlos #ehlersdanlossyndrome #eds #hypermobility #pain #brainfog #migraine #dislocations #sublaxations #fatigue #health #mind #body #inspiration #motivation #onedayatatime #love #support #community