{Baby Moon}

IMG_7817{grateful} Believe it or not, I think she came into my life to help me move forward. I went to get here but I was called to get her — does that make sense? It does to me. I had plans of getting a protection dog here (service dog isn’t a thing in India yet) because I needed some peace of mind that I’ll be okay. The move from Singapore to India has been hard on me but that’s also not surprising. And then one day, I’m looking for kittens online with the name ‘Luna’ at the back of my mind.

The next day I find Luna, the day after I go and pick her up. She made me get out of the house and out of my mind. I went by car to get her (I can’t stand car rides) and I took her to the vet on my own when she was ill. It was my very first time stepping out on my own in India. First time ever. I’ve always been accompanied by someone or the other all my life (whenever in India) and here I was, with a kitten in my bag, travelling deep into a highly-overwhelming city looking for a vet I’ve never met before.

Nursing her back to health (doc said she was so weak we could’ve lost her) sort of took away the extra noise in my mind. The worry. The uncertainty. The fear around having moved to a new place. It didn’t vanish completely (I doubt it will for a while) but it faded away into the background. It made me pause and focus on what was important: my health and Luna’s recovery. I was just about starting to walk after being bedridden for 6 weeks so looking after myself while looking after her was rather difficult. But I knew it had to be done. We were meant to meet. Sometimes our intuition guides us in ways we don’t fully understand. It was subtle but clear for me that Luna and I were going to meet. I love her like my own child. And, looking after her has validated it for me that I do not want kids of my own. Of course, I do have a list of reasons why and deep down, I feel like that’s my truth. We’ll see how things go. Grateful to have met Luna. Waking up next to this face warms my heart 😍

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“distract yourself or find a hobby”

Most people think that people like me who spend a lot of time at home are in need of hobbies or distractions of some sort. You know, something that can take our focus off our pain and suffering.

After ten years of dealing with Ehlers-danlos Syndrome Hypermobility Type, I can tell you this — while you can’t get your focus off pain entirely even for a fraction of a second, you can learn to acknowledge its existence, know that it’s going to be there with you and  still find ways to work with and around it. 

People like me who have had to leave a full-time job and figure out new ways to become financially independent (whether fully or partially), will once every while come across someone who tells us to distract ourselves from our experience or find hobbies since we have nothing else to do (according to some).  The thing is, not all of us are looking for distractions or hobbies.

Whatever you see me doing outside of my health routine are things I WANT to do for  reasons you may not always know. There is usually a detailed thought-process behind things I choose to do or not do.

I am currently completing a life coaching certification not because I am desperately in need of a hobby but because it’s been a personal and professional goal for me. It is something that calls for my strengths and aligns with my purpose. I want to be able to extend support while trying to support myself. I’ve always wanted to do it with the intention of setting up a business, one which doesn’t jeopardize my progress and allows me to work from home or bed for that matter. It might take time but that’s okay with me. I’m not doing it because I have nothing better to do. I’m doing it because I WANT to do it.

I taught classes throughout last year because working with people, helping them channel their creative energy, creating a space where people from all walks of life come together and open up is what I wanted to do. It was catching up big time and just then we decided to move countries. For me, conducting group classes centred in creativity and healing was a step in the right direction. Something that now makes me feel prepared to be a coach.  I didn’t do it because I needed a distraction. I did it because it felt right. And just like most people my age, I wanted to be able to at least partially pay for myself. 

I write (and share) because I believe writing is healing. I write with the hope of building a connection and community. Again, not because I need distraction. 

I cook because I’ve always been passionate about cooking for myself and people. It’s basically a way for me to express my creativity, apart from other art forms. Considering that I’ve had to leave dance and my career in design behind, cooking and making food look good keeps my creative energy running. I’ve had to train myself in the kitchen from scratch after not being able to prepare a cup of tea for myself at one point. I don’t cook for distraction. 

I volunteered with kids from troubled childhood because, given my personal experience, I’ve always had a soft spot for kids and believe so much in ensuring that children receive love,  the right kind of support and opportunities for growth. I didn’t do it because I needed to pass my time. 

It’s so easy for people to assume that if we’re at home, we’re bored or lonely or missing out. Sure, not all days are great but that’s the case for anyone else too. Personally, though, I’m not bored or lonely, and I rarely experience the fear of missing out (fomo). Yes, there are limitations and sometimes it sucks but on most days, I’m happy, grateful and at peace with where I’m at. More so because I know where I’ve come from. Honestly, I’ve probably never been better and I say this despite having lived pain-free at one point. I love being at home, prioritising my health, stepping out when I feel like it, going to places that feel right, hanging out with people I love, doing things that make me happy and finding joy in little things. I, for one, don’t need any form of distraction. 

Distraction is yet to prove itself to me. It has never worked. In fact, when I tried to distract myself from reality, things got worse. What you resist, persists. When I pushed myself, tried to act “normal”, I suffered more – mentally and physically. My health deteriorated at a very rapid pace. It took a lot of self-hate, pushing beyond my limit and attempting to distract myself from reality for me to finally press PAUSE, look at my priories and figure out a new way of living. Coming face to face with my reality, every raw bit of it, is what got me where I am today. 

Point being, don’t suggest distraction as a coping mechanism unless we clearly say that’s what we’re looking for. 

Trust us when we say we’re trying our best to create a different life. Who said different = bad anyway?

Support us because you believe in what we’re doing rather than from a space of sympathy or pity. Show us that you see past our illness. Tell us that you think we’re capable of embracing the illness AND following our dreams at the same time. Ask us if we need help in getting there. 

Love,

M

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.

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

A mandatory selfie to capture the memory of being out in 9 degrees (felt like 6?), under the sun, on my own, at 7:30am, in my gym pants, with a strange sense of comfort, no sensory overload, and of finally… FINALLY being in my own body, focused on every step because nothing else around me requires too much of my attention.

I walked around 1.2km, got us coffee, sat on a bench in peace, listening to the birds and felt a sense of calm in my heart. It was the feeling you get when you feel at home, a sense of safety and comfort, even though a place is new. And then my eyes filled up at the thought of how much I missed this.

A sense of quiet and stillness makes me feel at home… and lately it’s been far from that.

Thankful to be here today despite all the not so nice things in life.

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

Not quite home

An old post which was left unpublished for a while

————

This place still reminds me of pain and suffering. A pain that held me back for years and has taken me years to let go.

This place isn’t quite home. It never felt like home and I’m not afraid to say so anymore.

This place was more of a refuge from another place claiming to be home but all it did was caused more suffering.

I searched everywhere for a place I’d want to come back to and only found places I wanted to run away from. Farther and father, every year.

Soon I realised I had to create a home for myself and that this process had to begin from within. That safe space I so terribly craved and needed had to be created with love, first towards myself.

I had to learn to be my own pillar of support and for that I had to unlearn the idea of constantly supporting and accommodating for everyone else.

To create a home for myself, I  had to first be willing to accept my story; one that is way more than what I speak about.

Today, I am thankful to have a safe space for myself. A sanctuary of my own where I get to take care of myself mentally, physically, emotionally and spiritually.

A space that allows me to hear my own voice and follow my heart. A space where my creativity runs wild. A space where I get to build new relationships and tend to those that matter. A space that protects me because I have learned to protect it with healthy boundaries.

I am thankful to have found silence. That stillness, which some would run away from because it’s just too much to handle. I am so thankful to have realised that once you do truly come home, there is never any need to seek it else where.

And if ever I need to rebuild a home for myself all over again, I know exactly where to start.

-not quite home

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!

💕