Update: Two days later, left shoulder is still pretty off position. Pain wise, I’m at about 7/10. There is a fair amount of tightness along my neck and around the shoulder blade which is rather normal. When a joint goes out of position, the muscles around that joint tend to work even harder, tightening, to hold the joint in place. The effect of which is basically over-compensation of the entire body, leaving you feeling more fatigued. The tightness in the muscles around the joint tends to cause more pain than the actual, baseline pain due to sublaxation.

Take a look at my photos and try comparing it with the photo of anterior dislocation. You should be able to see some dents, areas darker than the rest. If you take a closer look at the first photo, which is actually taken two days after my shoulder sublaxed, you’ll be able to see that my humorous is slightly off the glenoid.

In a couple of days from now, I hope to go back to strengthening of the shoulder. You have to give it enough rest before starting the strengthening work, however, the longer you take to start the strengthening process, the longer the shoulder takes to recover. I usually rest it out long enough – i wait till my body gives me a green light or till I have enough confidence to start the strengthening process.

Unfortunately, the strengthening process in itself causes more pain, more tightness and someone a bit of muscle spasms. I end up needing more rest and more trigger point release once I begin the strengthening process. Keep in mind that everyone’s body is different and how it responds is vastly differently too.

Go at your own pace. Know when to listen to your body and when yo listen to your physiotherapist.



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


Goodbye vibes!

Goodbye vibes! You’ve been my favourite apartment of all time and I will always love you. Here’s me trying to pose when I could barely even stand. I haven’t slept well in days and my body hates the crap out of me. I’ve been functioning on high dose of anti-inflammatory and pain medications, pretty terrible food choices (because there’s too much on my plate right now) and lots of positive self.

Gone are the days when I could get a million things done all by myself and as much as I wish I could do more today I can’t and that’s okay. I am able to acknowledge when I need help and ask for it and that in itself has been a great progress. That said, I can’t be more grateful for people who’ve willingly helped whenever I needed and in any way they could. A big thank you to @shreya.j90 without whom I couldn’t possibly have made it through days of sorting, packing and running errands. I’d have loved to meet up with a few more people who have been an integral part of my life here but unfortunately, I have been in a bad shape and couldn’t have pushed myself. I love every single one of you and you will always hold a special place in my heart.

I’m in so much pain right now I’m just resting in @shreya.j90’s bed on an ice pack wondering how I’m even alive. Yet, I do believe that all is well. Everything is taken care of. If could say anything more, I’ll just add that I am definitely proud of how far I’ve come in the last 9+ years of dealing with a chronic illness. It’s been a journey of lessons and blessings which I probably wouldn’t exchange for anything. Until next time, lots of love and happy vibes🤗❤️✨



My first major symptom showed up just a few months before I turned 18. Before that, I was dealing with some minor symptoms which we assumed were rather normal for a relatively sickly child with a not-so-strong immune system and assumed that my frequent spraining of ankles and injuring ligaments was probably because of my passion for dance.

Five years of internal resistance (18-22) + pushing my body in every way possible, 3 injections, a total of 20-30 doctors/physiotherapists, 1 open-surgery and a couple of minimally invasive surgeries later I was finally diagnosed with EDS Type 3 — a label that has since been attached to my name.

There was a major confusion about the terms “EDS Type 3” and “Hypermobility Syndrome” (and now we have hEDS) but I knew life wasn’t going to look the same, no matter what the world wanted to refer to this condition as. I remember knowing deep in my core, that life was at a major turning point and there was no going back. I felt so relieved when my day to day experience was validated and that for once, I wasn’t “too young to have pain”. At that time, having a label that summed up my experience, a logical reasoning behind my suffering mattered so much and that attitude helped me pave my way towards getting a diagnosis.

Sometimes when I look back, I believe everything had to unfold the way it did in order to bring me where I am today. I wouldn’t have been here had I not trusted a part of me that just knew something was off balance; that my body needed more of my attention. That persistency was necessary to find a label to my symptoms. Today, this label helps me in making practical choices towards my health. It helps me when I need to find the right kind of help or seek medical attention. It helps me when when I need to keep up with the changes and advancements in science and technology. However, this label doesn’t change anything for me on a day to day level. It doesn’t change the fact that my body functions in a more complex manner and has very specific needs which must be taken care of.

Of course, while the underlying symptoms of all those dealing with EDS (same type) might be similar, how one experiences these symptoms, the intensity and degree of severity can be vastly unique to each person. I share my symptoms and experience with the world and I’m fully aware that they may look very different for others. There is absolutely no comparison or competition as to who is more sick when the truth is that we are each living in a dysfunctional body which affects our internal and external experience.

I’ve now reached a point where I realise that it isn’t the label that matters as much as your understanding and response towards your illness. It’s YOUR personal, day to day experience and no body else gets to tell you that it’s not true or unreal.

Being honest about my health with myself and those around me has helped me immensely. It’s this transparency that created a space for me to then work towards acceptance. Dealing with an illness that is especially hard for others to wrap their heads around requires even more self-validation and trust. Even now, I have family members, friends and medical professionals who find it rather challenging to make sense of this illness. The question really is whether you can trust your experience rather than seek external validation.

Of course, we would need and hope that a few people try and understand what’s happening to us but we also need to realise that it is impossible for anyone to get it until they get it. I’ve realized that the more I understand my body and become aware of it,

1. The more I’m able to verbalise and communicate my experience

2. The less I need anyone else to fully understand it

What I do need and look for instead is for those around me to let me have my experience, give me the space I require, without rushing the process. To me, it’s more important that my loved ones understand that I am having a hard time and that I am in pain (or that they ask me how I’m doing or if I need help with something) rather than be able to fully relate to every little thing that’s happening to me. Honestly, It’s pretty difficult for someone outside my body to relate to it and accepting this fact makes it easier on me. It also takes some stress off others to try and make sense of an experience that isn’t even theirs to begin with!

Whether you have a condition that is medically ‘named’ or you’re still struggling to find a diagnosis, please continue to trust your body and its subtle messages. Often times, our bodies are much wiser than our minds.

Flare up essentials 

Dark chocolate

Warm shower/bath


Essential oils


Journal + Pens





Tea or coffee

 Comfy clothes

Bed with a good mattress


Pretty nails


Peace + Quiet

Meditation + Mala


Good food




Plus of course, all ‘medical essentials’ (long list) depending on your specific condition and symptoms.


सेलfie/LE/ because, why not. Haven’t gotten a chance to really post much on here as my trip has been rather hectic and I haven’t been feeling too well. It’s my third week of antibiotics and fifth week of stronger muscle relaxants and I wish I could say I was doing better.

Nausea and migraine on top of aches and pains and wobbly joints feels like shit because there’s more that needs to be done over the next few weeks and I’m forced to take things slower yet again. It’s a challenge to be sick and do things ‘normal’ people can so easily manage so I try to break down bigger tasks into smaller, more achievable steps and get through them one thing at a time.

Well, I could’ve been a lot worse at this point, so all in all, I think I’m doing quite okay.


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.

Days of nothing but exhaustion.

People ask me where and how i find strength to get through days like today and while i have a long version of my entire journey up till now + my on-going process,

the shortest response i have is:

“With kindness, patience and love towards my body. It’s a struggle sometimes but sticking to a practise of self-care and self-work is a choice i continue to make every single day. And somewhere in between all that conscious work, i find strength, courage and acceptance.”

//Manasi D


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. ✨



🌸Do what makes your soul smile. If that’s dance and you can’t dance, find a way to feel like you’re dancing. Feeling is everything. Find ways to keep your spirit alive while you have to deal with and work around a not-so-healthy body. It’s hard enough on a daily basis and you’re allowed to find ways to make it a tad bit lighter on yourself, okay? You don’t need anyone’s permission for that. You are doing your best with the cards you’ve been dealt.

I can’t dance/perform like before, I can’t just stand up and let loose and dance freely but I can imagine doing it in my mind. I can imagine dancing, performing and choreographing like before and I can FEEL it as if it’s true. It makes me smile from within. That said, I know my body has its limitations and I know what’s right for my health. I don’t have it in me to be stupid and push my body in ways I tried to back in the past. You see, I might have had to leave dance behind but my love for dance will always stay with me and you know what?…that’s enough for me.

This isn’t some law of attraction discussion and I’m not going to say “imagine and you’ll have it” because if you don’t get it, you’d think you didn’t want it enough or you haven’t tried hard enough. If that were really the case, if only imagining solved all my problems, I’d be doing different things at this point because trust me, I’m bloody good with my imagination. All I’m saying is, be true to who you are and things that keep your fire going. Be a little #crazy in your own special ways. Keep those things alive; things that keep your enthusiasm for life going. Keep working on finding ways, finding solutions. Be open to possibilities while being aware of your #reality. I’m not going to tell you to have high expectations out of yourself when you have REAL LIFE limitations and when you’ve worked so hard to leave your old life behind.

Acknowledge your present with your heart and mind. Please do not work on going back to the life in your past which doesn’t serve you anymore today. Please don’t force yourself to walk backwards and create more suffering. Past is gone for a reason. Walk forward with what you have and what you can do. Be very practical + imaginative where necessary 🌸 #chandralekha #bollywood