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

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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.

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?

EDS may be a big part of my journey but it isn’t everything ❤️

I’m starting to see how this illness is a vehicle for me to look inwards, to become a better person and to live a more fulfilled life.

I’m not grateful for the pain I experience but I’m definitely grateful for the lessons and blessings that have come along with being made out of faulty collagen.

The more I accept this illness and the body that I’m in, the more I realise that I am more.  That I am whole despite the brokenness that often follows an illness.

I’d like to believe that as I continue to do the work I need to do for my own healing, I am more equipped to offer the same to the world. One thing is for sure, I’m learning to own this illness but I’ll never let the illness own me.

Love to all

-M

Judge me all you want

Your judgement is nothing but a reflection of your own mind and its ability (rather, inability) to open and grow.

I’m currently working on giving zero f*ks about what this society thinks and trying to focus on living in integrity with myself.

I guess my conclusion that I would rather not be liked by too many people than to exchange my peace of mind, self worth, and my lifestyle for their approval is constantly validated out here.

I see my empathy and sensitivity as my strength and they’ve proven to be in so many circumstances. It’s exactly what allows me to connect with people at a depth which makes many others rather uncomfortable.

However, I’ve also learnt to show up for myself when my empathy is taken advantage of and when my kindness is taken for granted. Today I’m doing just that — showing up for myself and learning to be comfortable in my choices.

So go ahead, judge me all you want.

P.s. I feel so grateful to have been brought up in a different place. A place that allowed for expansion of my heart and mind, and, encouraged me to stand in my authenticity despite the opinions of others.