this.❗️acknowledging pain doesn’t make you weak❗️I understand the concerns of most healthy people but I’m sick of receiving messages asking me to stay strong. Just as being busy is glorified, so is being strong. What’s with people telling people to be strong all the time? I am strong and I am in unbearable pain. How about we get more comfortable speaking about pain and suffering rather than covering what’s uncomfortable by glorifying being strong? Real strength lies in being vulnerable and reaching out. Speaking about pain makes us stronger, on our own and together. Please, also, don’t ask me to preoccupy my mind with something else or distract myself from the pain. Maybe with a fracture or a sprain, sure. And for the sake of love, don’t ask me to smile through pain. It’s not possible with the kind of pain I’m talking about today. If you’ve been following me for a while, you would know my approach to dealing with this illness — I have a more holistic and soft approach to co-existing with pain and limitations of the illness. You’d know that I am always in pain, always sublaxing a joint or the other, managing some other symptoms out of the many and yet doing my best. Distraction of any sort hasn’t helped once in ten years of living with Ehlers Danlos Syndrome. In fact, when I was in distraction mode and tried to push through, things got worse. What has helped is listening to pain; listening to the wisdom of my body. I so understand that everyone means well and I mostly don’t react to certain things people say because I see they’re trying to be nice. BUT, please, consider that there are times when people like me are experiencing excruciating pain which you simply won’t get unless you are chronically ill yourself. 💞If you don’t know what to say, try a more empathetic and compassionate approach — ask how someone’s doing, if they need any help, tell them it’s okay to take a break, tell them you’re proud of them for living with pain, tell them there is no way you can ever relate but you’re there for them. 💞 #unbearable #chronicillness #invisibleillness #pain #chronicpain #ehlersdanlossyndrome #hypermobility #dislocations #sublaxations #flareup #lowerback #spine #slippeddisc #tailbone #inflammation #patience #chronicpainawareness

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Roasted curried veggies with coconut milk

Roasted curried veggies with drizzled coconut milk for lunch today. There’s literally a farm in here. Roasting stuff has been helping me save some energy because I just chop everything up, dump all the spices and throw it into the oven. No more standing by the stove waiting for things to cook. Anything raw doesn’t sit well with me so salads is kind of out of question these days. I mostly make more of stir fry and roast good quality meat and veggies. Also, cooking makes me so happy and I’m realising that I enjoy creating cooking videos too! All I need is an assistant 😛 Volunteers anyone?🙋🏼‍♀️#roastedveggies #cooking #passion #vegetarian #vegan #plantbaseddiet #glutenfree #grainfree #dairyfree #quick #lunch #sibo #spoonielife

A small something

I was diagnosed with EDS type 3 in 2012, and have since been learning to live with theeillness. Before my diagnosis, I spent a good four years searching for a reason behind my deteriorating health and found no answer. Imagine being 18, three months into the course you loved, and suddenly starting to fall ill day by day. I tried everything that was “supposed” to help only to find out that it’s not a one size fits all kind of a situation. No one knew what was wrong with me and some refused to believe that someone in their late teens and early twenties could possibly be in so much pain. The struggle was real and it was beginning to affect my lifestyle. At one point, I thought I was living someone else’s life. It was devastating and unexplainably miserable. All it took was one medical professional to sit with me and really listen to my complaints and put together all my symptoms since young, which really didn’t seem out of place at that point.

After years or greiving over my old life and resisting what was coming, I finally started to work on acceptance and letting go. I could no longer run away from the fact that this was a chronic illness and the only way to move forward was to make peace with it as though it’s part of who I was, because it is. Sure, It doesn’t define who I am, but it plays a major role in every little or big decision in make in my life. It affects my energy levels, makes me put emphasis on bigger and greater things in life and hence also changes how I choose to live my life.

Things were only getting from bad to worse. The longer I held on, the more I struggled. The more everyone around me struggled, too. When I could no longer push, when my body started to scream and not just whisper, I figured it was time I made major lifestyle (my passion/activities I enjoy, the people I spent time with, my daily routine etc) and career change in order to accommodate and honour my health. And so I did.

I no longer see a point in creating suffering for myself by trying to push my body beyond its limit. It’s hard but I’ve realized that you have to make a choice every morning, to get up and do the best of your ability. Whatever your best is, is good enough. I’ve also realised the importance of staying true to your personal experience no matter what anyone says and also finding people who trust you.

Over the last few years, I’ve been working on adopting a new perspective towards my health and the choices I need to make. Firstly, I tell myself that these choices and decisions are FOR my health, not BECAUSE. Secondly, I choose to believe that I am fighting my illness by loving my body. Thirdly, I take conscious steps towards forgiving and letting go of what I thought my life “should” have been and adopt an attitude of gratitude as far as possible.

I won’t lie – living with chronic illness is tough. It complicates your life and makes you feel as if there is nothing more to life but being sick. It makes you feel like you have to climb this never-ending mountain all yourself and that no matter what you do, it’s not enough to change anything or make a real difference. It makes you think about the meaning of pain and suffering. Question your abilities and sense of self. I know the extra suffering that comes along with the physical pain.

Then again, every day is a new day and all we can do is acknowledge our pain and learn to work with it. It might require you to reassess your path every now and then and do what is in alignment with your health. That choice to work with your body while taking one little step forward towards what you love, or what frees you and makes you feel at peace is what reflects your strength and courage. It’s not your illness that defines you, it’s how your choose to live with it that does.

You have the choice to do something every day that makes you experience a small victory. And many victories put together allows you to overcome the burden of living with a life-altering illness.

Keep in mind that this ‘something’ I’m referring to doesn’t have to an incredibly big task or fit the expectation of the society in any way. It could be something as basic as getting out of the bed, holding a brush and writing a letter, doing an extra shift of your part-time job, washing your own hair, maybe cooking yourself a meal, meeting someone you love, reading a book to nurture your mind… anything that makes you feel like you’ve taken a step forward on that given day is a good enough start.

One day at a time.

One step at a time.

and, remmeber, you’re allowed to pause for as long as you need to before starting again.

Love,

MD

this is a photo from last year when I stepped out of my apartment for the first time after being bedridden for seven months. Apart from the trips i made to the hospital for tests and appointments, i was completely bedbound due to a massive lower back flare which caused excruciating pain and muscle spasms in my entire lower body. i was also undergoing a treatment for #sibo, following a highly restrictive diet which was helping my physical symptoms and also changing my relationship with food for the first time. With support from my close friends and a couple of family members, i somehow survived those seven months in my own apartment, walking not more than 200 something steps per day. i think i’ve dealt with times worse than that and have come out a little wiser and stronger each time in my entire life. Despite spending countless nights in pain and doubt of whether i’d get out of bed the next day, i’m still here today. Not ‘fixed’ or magically cured. Just doing my best and allowing myself some rest. And so are you. And I promise, if you’ve come this far, you can go even farther.

Anger

Some of us are raised having to justify our anger. We are raised to think that emotion of anger is “bad” and that we are bad people for experiencing that feeling.

Anger is not inherently a negative emotion. It is an emotion that calls for acknowledgement + action. Perhaps what you do with it could be categorised as a negative or positive action.

We need to raise our kids to understand that feeling angry is as natural as feeling happy and emphasize fully experiencing anger and then responding accordingly. Not reacting. Responding.

Really asking, “what is my anger telling me?” instead of distracting the moment you experience the very first sign of anger.
We need to teach our kids to find productive ways of processing anger without feeling afraid of it or feeling guilty for having that emotion.

We need to teach them to sit with it.

Write and share it in a safe space.

Maybe go for a run.

Channel it into a creative project.

Anger and passion are two sides of the same coin. Suppressing one means suppressing the other and consequences of both aren’t healthy.

Growing up in a dysfunctional family, I’ve seen both extremes. One side acted out, the other preferred to suppress and I’ve personally seen how damaging damaging both can be. One can damage your relationship with others, the other can easily damage your relationship with yourself, which then ultimately affects the first.

I’m not advocating reacting in a way that’s hurtful or acting out because that’s giving in to anger and nor am I suggesting holding on to it till it crushes your insides.

We don’t want either.

We want to try to tap into our wisdom and awareness, knowing when to take some time out to ourselves to feel the anger, where to speak about it and most importantly, what to do with it.

Last few years of spending a lot of time alone, I got a chance to work on and let go of the trauma and pain from my past which needed to be looked at. Thankfully, I’ve healed from most of it but I still remember how that emotion has always caused me more pain than it needed to.

I didn’t know what to do with that anger because of what I saw around me as a kid — how was I supposed to experience and overcome anger if I either wasn’t allowed to speak about it OR was surrounded by angry people, yelling and screaming at one another? How was I, as a child, supposed to gauge what is right and what isn’t? So I naturally grew up confused around that emotion — feeling like utter shit about myself for even having that feeling. I held on to it until one day I figured it was eating me up from inside. It took me a while to find productive ways of dealing with my anger and it started with naming it. Being okay with it. Letting myself have that emotion without generating more drama around it.

Sometimes anger just wants to be heard. And I wish someone told me that 20 years ago.

These days I write about it until I can’t write anymore. I cry it out. I call my close friends and request them to be my sounding board. I take a bath. I go for a walk alone. I even speak with my spiritual guidance teacher. If I feel like it, I draw out my feelings and then tear out those papers. Sometimes I keep them to look back. Then I meditate. Take deep breaths throughout the day and sleep over it too. I give myself all the time and space I need to fully experience that emotion before I decide how I want to respond to the situation or the person who triggered the anger in me. At times this looks like having a word with them and at times, it looks like never going back.

Next time you experience anger,give yourself the full permission to feel it without any form of guilt. Remember, it’s both natural and okay to experience “negative” emotions. You’re don’t have to beat yourself up for feeling them. Instead, lean in to those emotions. Listen in.

Be kind with yourself. Find your safe space where you can feel your feelings without being judged and remain there for as long as needed.

<3

Once a dancer always a dancer

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

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

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!

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. ❤️