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?

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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

A box from the past

#rarediseaseweek #2018

Just yesterday, I found a box filled with all my design stuff which I hadn’t seen in many years. It seems I had forgotten about it and left it with my dad because I wasn’t ready to accept my new reality (and discard anything) and nor was I able resist it. I was experiencing the most horrible internal conflict of all time

To hold on or to let go.

My heart knew well that I needed to let go because I had fought enough and my body was changing. But my mind wouldn’t let me.

Holding on would mean disrespecting and dishonouring the one and only vessel I had for the rest of my life. I had to learn to accept it for what it is but how could I let go of all the things I loved, planned and wanted so much? I was suffering in every way possible.

I knew I had to pause but it was hard to put away my dreams and aspirations for a long period of uncertainty, of not knowing and having answers. And that was scary. But I did it any way because I could no longer neglect the messages from my body.

So when I decided I was ready to jump off the cliff, leave my full-time job, learn to live on my own and put my body first, I told myself I’d deal with this box when I am able to see my past as just one part of my life and not a reflection of my worth . Leaving the box behind, I remember feeling as if a burden of expectation to be the “perfect one” was lifted off my shoulder and at the same time, a heavy sense of grief towards my old self engulfed me.

Who am I without my dreams, I thought.

I know nothing off this path I have carved and imagined. I will be lost. I am lost. And what if I am never found again? What if, despite all my effort and desire to leave my old self behind, I can’t do it? How will I live from here, with the burden of having and wanting to be perfect and knowing that I was born in an imperfect body?

Does honouring my body, which feels like the right thing to do, equate to failure?

Will I be a failure in everyone’s eyes?

Am I a failure in my own eyes?

Here I am now, all set to let go of this box and its contents because they don’t serve the present me.

Maybe it all made sense to some extent then, at the age of 20 and in that once healthy body. I knew nothing more. All I knew came from old, expired programming that I grew up with and around. Today, I believe I am a better version of myself and I’m proud of how far I’ve come.

Of course, my past has served a purpose; it lead me to this day. It taught me the importance of tapping into my inner strength, finding courage to do what is right for the sake of my body, mind and soul without letting the external factors lead me into believing that what I knew was the only truth.

Today, I understand that those around me need not understand me, and that it doesn’t matter if one thinks of me as less but it can be disastrous if I ever let myself think I am not enough. Because I am. And while my path is new and least travelled, it reflects a truer version of myself. It is taking me to a place of peace with my body. I believe and I’ve noticed that this internal shift brings me closer to a life of joy and purpose, one where I wake up everyday knowing I’m making a difference whether or not it is visible to whole wide world and where I live each day as gracefully as possible.

Here I am now,

ready to let go of this box,

both literally and figuratively,

and make space for the new.

With a heart full of gratitude and a lightness, I am ready to give this part of my life a complete closure because I had already said goodbye a long, long time ago.

#chronicillness #ehlersdanlos rarediseaseweek #ehlerdanlossyndrome #hypermobility #EDS #rare #illness #2018 #awareness #pain #suffering #fatigue #brainfog #past #lettinggo #memories #interiorarchitecture #goals #dreams #aspirations#acceptance #health #mind #body #soul #purpose #healing #love

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Favourite spot

Thank you, for being that one safe and healing space where I could just be without having to worry about what I am “supposed” to be or need to be.

Thank you for reminding me of the power in being soft and letting things unfold at their own pace. You’ve taught me how to find beauty and to come back home to myself whenever I had no where else to go. You’ve been wonderful.

Seek

Throwback to when I could still swim and position my arms a little more comfortably than right now. And now even though I end up walking in the pool or swimming with every move calculated and rehearsed thrice in my mind, I still find some peace being in the water. There’s something absolutely healing about water and I can’t find words to describe it. Leaving behind swimming 15-20 laps a day was hard because swimming was my escape or meditation (and it kept me physically fit enough) I thought, until I couldn’t escape anymore. Until I couldn’t run away from home, from a space I could barely breathe or be alone in, to really listen to my heart beat and know I was still alive. Until  my body forced me to stay in bed and find a way to deal with reality, with love and compassion for myself first.

Again, it doesn’t hurt so much anymore so I can actually share these things with you. In fact, this is so freeing, realising that I’ve learnt to let go of things I tried holding on to for a very long time, almost hoping they’d come back and fit together into this picture-perfect life; things that I thought made me who I was. Perhaps the way it happened wasn’t the best but I’m grateful to have realised very early in my life what truly matters. What I was never wrong about was that I was constantly seeking peace and a reason to be happy and activities like dance and swimming kind of gave me a taste of both.

Today, I am thankful my experiences have taught me that true source of peace and happiness, the kind of peace and happiness that makes you really glow, is within us. I can be in bed and in pain and still be at peace, still be somewhat happy knowing what I  now know for sure. Getting here took equal parts faith (in my body and something bigger) and conscious actions (because even when you think you don’t have control, you still have a choice to remain stuck or take the next best step), and maybe a dash of sparkles. ✨

Six ingredients chicken broth


Maybe this is a more Indianized version of chicken broth or soup. Each time I caught a flu or fell terribly sick, I’d have this made for me. It’s super easy, doesn’t require much effort and is extremely delicious and nourishing. If you’ve got a sensitive gut like me, this is well worth a try!

You can trust me on this one!

Ingredients:

  1. Chicken with bone (any part)
  2. Black Peppercorns (as per your preferance)
  3. Ginger (small pieces)
  4. Salt to taste
  5. Lemon
  6. Cilantro

Method:

All you have to do is dump in all the ingredients (except cilantro and lemon) into a pot, add water (enough to cover the chicken or a little more than that) and let it boil for a good 30 minutes. Lower the heat, add more water if needed and let the chicken slow cook for another 30 minutes. The chicken cooks so well it practically starts falling off the bone :)

If you’d like to have a thicker broth, you could add and reduce the water a few times. Three times works perfectly.

Bowl it up. Squeeze in some lemon and garnish it with cilantro. That’s it!

Optional – 1 teaspoon of coconut cream/milk.

Enjoy!


Don’t let anyone rush you through your healing process. It is not selfish to take the necessary time that you need in order to heal wholly. Don’t let anyone tell you that taking time to heal is selfish. In fact, it is selfish to rush others through their process just because your pace is different.  Forgive and continue on your healing journey.