#2013

It’s been four years since this photo and yet I get goosebumps just thinking about where I was at, both physically and mentally.

I was falling #sick with a cold or a stomach flu every other week, reacting to medicines which were supposed to help, afraid to be alone in my own bedroom, finding it hard to eat, needing help to wash my hair and sometimes even to brush my teeth, hating on my body for being fragile and weak, struggling to protect myself from people, fighting with school because they had no policies in place for people with medical issues, crying myself to bed every night, falling asleep with a strange emptiness in my #heart, waking up to feeling suffocated, hating on my creativity because I couldn’t pursue it the way I wanted to, feeling like every day was an absolute drag… I was claustrophobic in my own #body and #mind.

I wonder if this photo says any of that.

2013 was the year I knew I was done with everyone and everything around, including myself. Something needed to shift and I didn’t know what or how. All I knew was that life couldn’t possibly feel the way it did. Despite feeling like a hostage to my own #existence, there was a glimmer of #hope, a constant knowing that nothing was going to change until I decided to step up to where #life was heading. Stepping up at that point meant pausing and for once allowing myself to let it all sink in. Nothing was going to be anything like I had once imagined and I had to come to terms with that. I couldn’t distract or push myself anymore and I felt horrible. Who thinks about pausing/stopping at 23, right?

The thing is, some of us reach a point in our lives when we are faced with circumstances so real we simply can’t look away from them. Greater things are at play and our personal plans and effort make no sense. Life keeps finding ways to force us to look at what’s being presented and leaves us with two choices – to keep #suffering by avoiding pain OR to acknowledge pain and learn to #rise from there. #trust #acceptance #health #mentalhealth #pause #rest #recover

Looking back, I suppose there were things I had in 2013 which lead me to be where I’m at today. The daily struggle and fight have definitely added to all that I have become as a person and in some ways I’m grateful for it (not for the fight but for what came out of it). Of course, gratitude seemed like the last thing on my mind at that point in time because I was in this terribly dark space. Practicing and expressing gratitude, learning to accept whole and broken parts of me and making choices that honour my health (both mental + physical) has taken time and conscious work. I still have rough days but I’ve made peace with the fact that harder days are part and parcel of learning to live with a chronic illness. Today, I know better than ever before that while life is capable of giving you 5 reasons to fear, hate, complain, it will give you at least three reasons to trust, love and grow.

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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.

#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?

Hello there spoonies and other friends!

So while I was off social media, I took some time for myself and made sure I brought my interaction with people to a bare minimum. I met just a few people apart from my pilates instructor, physiotherapist, ayurveda therapist and naturopath but I made sure to look at my phone and laptop less. In fact, I wrote more in my journal and typed less on my phone.

Some of the experiences I had just over this week made me think through a lot about how far I’ve come and how far I’m yet to go. When you really make an effort to disconnect with the noise around you and connect with what is already within, you finally hear the noise within you loud and clear. And if you dig deep enough, and have the courage to dig further, you find that there’s so much wisdom residing in there that you barely ever need to seek answers from outside. A lot of what we need to know, we already do.

So, obviously, I made a list of ten things that came up for me in the course of this one week. I took some time to journal and think through each point even more and I figured I have so much to share and so much to learn at the same time. I wasn’t too sure if I wanted to share this list with everyone but I’ve made up my mind to do it anyway. Who knows, it might resonate with someone out there.

1. Listen more; to your inner wisdom and to those who need to be heard
2. Express more gratitude
3. Have the courage to ASK for your needs to be met
4. Be brave and say ‘NO’ if/when necessary
5. Preserve your energy; it’s everything
6. Reframe your past, refocus on your present and reimagine your future
7. Return to the thoughts of peace, love, health and success
8. Validate yourself for every progress you’ve made
9. Make your own decisions. You know what is best for you.
10. Trust that you will always be supported if you’re willing to jump off the cliff. Keep doing your best and being your best even if you’re at your weakest.

The most important thing I realized was that I NEEDED this time. Unless I make a conscious effort to create a space for myself, I will always be a part of something I don’t need to be a part of. Love, Manasi ❤️ #chronicillness #selfcare

Thank you


I just feel like saying a big thank you to all those who've loved me through my struggle with finding a diagnosis, leaving an old life behind, resisting a new one, accepting and coming to terms with where I'm at and making drastic lifestyle/career changes in order to manage my health.

Thank you for loving me despite my chronic illness.
Thank you for learning to grow with me ❤️

You didn't have to be family to promise that you'd be around whenever I need – you just chose to be there for me. Thank you!

What it’s like being single with a chronic illness

(What it’s like being single with a chronic illness)

Every once in a while I come across someone or the other who would ask me questions like:

“Why are you still single?!”

“Have you seen yourself?!? You can find anyone! Just go out! Go online! Why do you want to be alone? ” (that’s really beyond the point)

“How are you managing without a partner?”

“Isn’t it better to have someone around at least?”

“Don’t you get bored alone?” (I honestly don’t)

“Don’t you want someone to help you get out of bed?”

“Why don’t you just go out and see what comes to you!?”

Here’s the thing about dating and chronic illnsss – it’s not straight-forward. It’s not ONLY about feelings and love anymore. Living with pain 24/7 and dealing with an illness that’s going to be with you for the rest of your life (well, till science finds a solution or a miracle takes place) changes your perspective about pretty much everything. Every day is a new day and life is as predictably unpredictable as it can get.

What is considered rather “straight-forward” in the context of dating now involves much more complicated factors like compatibility in terms of lifestyle and practicality of the relationship. Often, these are also the topics people prefer not to discuss in detail — who wants to talk about how it is like to wake up and sleep with so much pain?

Who likes to talk about guards, slings and tapes?

Who wants to run through your pain management programme?

Who wants to know what it’s like to have to take a break during showers because of fatigue?

Who wants to discuss how to deal with an arm that sublaxes? Or what to do when your back flares up and gets you bed-ridden? Who wants to listen to your prognosis?

Who actually wants to educate themselves about someone else’s health?

Who wants to know what it’s like to make a different career choice not because you are incapable, lazy or not ambitious but because your health must be your priority? (I believe it’s a choice I’ve made for my health not because of it)

Who wants to know what it’s like to pretty much build a life all over again from scratch?

Who wants to understand what it’s like to be hopeful, grateful and practical at the same time?

Who’s willing to talk about responsibilities? Partnership? Who wants to talk about hospitals, bills, insurance and disability aid when there are so many other fun things to discuss? Right?!

Who’s willing to see what an invisible illness really looks like?

And most importantly, who’s going to be able to look past that illness, despite it being a major experience for you, and realise that it’s just one aspect of who you are?

Unfortunately, the things that people usually shy away from are exactly the things that need to be talked about. That’s the case with all of us but even more so when you’re dating someone with a body that doesn’t function as per “normal”.

From the last so many years of literally dating myself, hating my body (for a while) and now respecting it so much has taught me such valuable lessons which I wouldn’t exchange for anything. I’m very happy that I chose to give ‘me’ all the time I deserved. Somewhere I had forgotten how much I needed it.

There’s no going back for me anymore. I don’t regret choosing to date myself. I don’t regret deciding that it was time to be on my own and manage with whatever support I had and to make the best out of it. It was painful, every bit of it and yet I say this – i absolutely don’t regret experiencing loneliness and realising how amazingly freeing it actually is. It has brought me closer to who I am as a person, who I always was and has opened doors to so many opportunities.

I couldn’t quite have imagined sharing my story  with everyone and being of help to some people had I let things happen the way the old me thought they were “supposed to be”. I wouldn’t have been here feeling somewhat at peace with everything. I wouldn’t have been able to grow out of fear, trust myself and be grateful for all that I have without leaving a few things behind.

Dating myself for years altogether has only taught me patience (what’s an empowered patient without patience anyway?) and the need for acceptance of self. If I hadn’t learned to accept who I was becoming, I wouldn’t have become so clear about my wants and needs. If I hadn’t learnt to let go of the things that no longer served me, I wouldn’t have been able to embrace my new reality. I most definitely wouldn’t have been able to create space for anyone else in my life.

I couldn’t have imagined having someone else with me through the last few years. I don’t think it would have proven to be helpful for either of us. In some ways, I’m grateful that I spent those years alone, figuring so many things out all at once. Now that I have enough space to embrace who I am, I have enough space for someone else too. Keeping that in mind, no matter how sad it can sound to some people, my full-time job will always be self-care and I can’t be with someone who wouldn’t see that.

It’s really ok to be single and deal with a chronic illness AND it is ok to be sick and be in a perfectly healthy relationship. What matters ultimately is whether you get to honour your health.

Love,

MD

❤️

(What it’s like being single with a chronic illness)
Read the article on themighty.com

Day 26: Bedbound

It seems my lower back is just going to take its time to heal and I’m slowly starting to ease in. Once it starts to show signs of recovery, I’m confident I’d be able to build it up all over again (you fall, you get hurt, you accept, you adjust, you love, you heal, you put yourself together and you keep going) because I’ve done it time and again.

I might need to investigate if there’s any new injury or anything to worry about as this has been a rather severe back flare up in the last few months. Let’s hope there’s nothing new in there. I plan to get it checked in a few days, once I get through a few more sessions of physiotherapy and Ayurveda treatment to see if my back responds. I postponed getting it checked earlier because I’m aware of a couple of factors which could be hindering the recovery process.

I’m done resisting the present, hoping and expecting my back to respond just because I have a time frame in mind. I’m slowly easing in, accepting that despite my plans for January 2017, there was a need for me to slow down. And here I am finally allowing myself to. I can’t be more grateful for the support I have right now which makes it possible for me to give my back a break for the time being. I’ve dealt with a great deal of instability for years altogether and realise the importance of having support/stability AND also being grateful for whatever of it you have.

This is not to say that I can wait for too long to feel more like myself again. I feel like a zombie version of myself right now! Truth being said, nobody enjoys experiencing so much pain or dealing with limitations. I seriously despise being unable to do things I’ve worked so hard to get myself to over the last couple of years. I think it’s always good to pause as long as you don’t quit. The  present situation  calls for me to rest, to let go more so my back heals and regains its strength again. I know I’ll be back on my feet soon enough.

Love to all,

MD

❤︎

To be here 


And today I realized,

I’m quite at peace with where I’m at. 

Of course, there will always be things to work on and move towards,

and every once in a while I will get  overwhelmed with everything that’s going wrong and experience a  meltdown for a while – it’s part of the healing process too.

But to be here,

present in this very moment,

with a fragile body that hurts twenty-four-seven,

and still feel alright deep down

is nothing short of an achievement.

The way things were going,

I didn’t think it was ever possible – this ability to be okay with a disability and exist without too much dependence on someone. 

Nature always does something to me. It gets me thinking (in a good way) and in some ways, brings out the real me in me. 

As I sat there by the water today, looking at the magnificent colours around me,

I knew it was all okay. And going to be okay. 

I was there with my knees swollen but my heart was full of love and gratitude. 

All that I need in this phase of life, I already have. 

A big thank you to all those who are a part of my journey. 

Love,
Manasi