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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#marathimuli

After more than two weeks of thinking through whether I wanted to or if I was even in the mood to host a mini Ganesh Chaturthi dinner, I finally figured I had to do it this time. I got a couple of messages from friends who were looking forward to it and I knew it wasn’t going to be like last year. This time round,  everything was going to be different.

Because it is different.

Things change, times change.

What remained the same as last year was the feeling of love and joy, dressing up & being around a few people and knowing that no matter where life is heading, you’d always have some memories to look back upon and smile. To feel grateful for.

Ultimately, that’s really all I care about when it comes to festivals. If you’re like me, spiritual enough to respect that people get to have their own set of religious beliefs and, you’d agree that if any festival is celebrated with the people who love you and people you love, people who have been there for you and people you’ve been there for, and if you’re present in that moment, do a small ritual and feel immense gratitude, it is more than enough. You get to choose how you want to live your experience.

Amongst all the amazing photos captured that day, these three will always remind me that despite everything,

you have a choice.

To pick a family,

To dream freely,

To hope without fear,

To laugh without guilt,

To cry with your heart,

To love with your mind,

To sing your very own song,

To live with what you have and make the best out of it.

P.S. if you’re wondering what’s happening up there… you know, we were just trying to dance on “raat ke dhaaii baje” and “pinga” for very obvious reasons. Also, did you notice my freakishly bendy fingers?

Mini Gluten-free Pancake Stack

 
Mini Gluten-free Pancake Stack 

Oats flour (GF) + a bit of rice flour + buckwheat flour + coconut flour + soy milk + vanilla essence + baking powder + just a bit of coconut sugar (I didn’t want them too sweet) 

I’m not vegan (yet?) but at times I don’t like eggs in my pancakes so that ends up making them vegan too, since there’s nothing else in them that could possibly make them non-vegan :)

I got too tired to make them all pretty with yummy stuff on it… I’m sure some of you can relate! #chronicillness #pain #fatigue #spoonielife

I made really mini ones (they’ll last me for a few days) as I’ve been bloated for too long now – I could honestly do without eating much right now but considering the amount of medicines that I’m taking, I end up having to eat a little more anyway. Experience has taught me how not having enough food in your stomach and taking too many pills could lead to horrible gastro-issues. So no thank you.

It’s annoying that there is a tendency of this strange bloating leading to unnecessary weight gain in the future. I mean, I’m not being all “oh my god I’m so fat” but I do realize how excess weight could possibly burden my joints even more. It’s just a matter of being a tiny bit extra cautious.

All this is a part and parcel of dealing with such illnesses and we always wil find ways to manage it. At least that’s what I tell myself :)

So, gluten-free & vegan pancakes anyone?

Happy Weekend, all!

❤︎