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




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. ✨

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

Day 35: Lower back MRI update (Latest)

Day 35: Lower back MRI update (Latest)
I got my MRI done last Wednesday and I have  a good news and a not-so-good news to share.

Good news – There is no new or major injury. I’m still maintaining my count at 9 affected joints (major) and my spine does not show any significant injury caused by me going out for dinner on December 31, 2016.

Not-so-good news – My spine has been degenerating over the years and there’s not much that can be done about it. I’ve got 2 disc protrusions, reduction in intervertebral disc height, disc desiccation, osteophytic bone ridging, mild scoliosis, mild foraminal steniosis, degenerative hypertrophic arthosis of facet joints, grade 1 anterolisthesis, mild nerve impingement which is worse on the left and correlates with all the symptoms I experience.

Conclusion 1 – None of the above can be considered “normal” for a 26 year old. While none of it calls for any urgent medical attention, it does call for personal attention and understanding. It also isn’t a surprise because EDS is a degenerative disorder so your body will inevitably tend to degenerate faster than the rest. The idea is to work on preserving, maintaining or trying to slow down the degeneration and avoiding other injuries.

Conclusion 2 – From my first spine MRI in June 2012 to the second in July 2015, my spine showed a number of new things to take note of. The degree of degeneration from 21 years of age to 25 was absolutely abnormal. However, July 2015 to February 2017, while there has been an increase in nerve impingement, the other main points of concern remain the same and of the same degree. This in itself is something to feel good about and I can’t help but correlate it to how my journey has been from 2009-2012-2015-2017. I can’t help but to believe that the choices I’ve made, no matter how painful, have been in the right direction. It’s extremely validating and I’d understand if no body understands. Most of it required a great deal of consistent internal work + faith in the future + action in the present + open-mindedness to try things which seemed right, all from a place of acceptance.

When you’re dealing with a connective tissue disorder, meaning that your body produces faulty collagen resulting in weaker connective tissues, it is important to note that every little issue, minor structural or musculoskeletal change and degeneration can add up and translate into immense pain and inflammation. The same symptoms might look and “feel” very different in a healthy body, resulting in a vastly different experience. Unfortunately, not all doctors are aware of how every patient experiences a disease differently as it may not necessarily fit their knowledge from medical books.  Hence, I think it becomes extremely necessary to track your personal progress, the rate at which things are changing, and the degree to which they’ve changed as part of your personal illness/disease management programme. 

Action plan-

Moving forward, I’ve got two options:

1. Go to a spine specialist and get injections in my back to help break the pain cycle. As much as these tend to help others, people with connective disorders may not respond too well to them. Coming from personal experience, I can say they did nothing for me and I don’t feel a pull towards trying them again. In fact, apart from other symptoms, the fact that my body didn’t respond “as expected” to some injections + some minimally invasive procedures was what pointed us towards the direction of my diagnosis. I also know that I’m quite sensitive to certain procedures requiring contrast or sedation and end up getting random infections.

2. Continue to give my back the time to heal, continue doing what works for me in terms of pain management (physiotherapy, ayurveda therapy, essential oils, medications, meditation, herbal supplements, respect my nap and bedtime etc.), and slowly build it back to where it was a few months back. This means that I introduce a few minutes of walking every day, a bit of hydrotherapy, then a 30 minutes of Pilates session, then a 60 minutes session and finally 120 minutes of Pilates per week as my back starts to respond. From there on, I start to re-introduce and take on more work and other activities.

Of course, I’m going with option two. Even if option two means having no answer as to WHEN exactly things would improve, it makes me feel a little more in control of the choices I make. So while there is a fair amount of uncertainty around it (which isn’t in my control), my experience over the last few years and the progress is definitely considerable enough for me to trust that I am capable of working with my body and building it up again. As I’ve said in my older posts, I don’t enjoy  needing help for things I’ve  learned to do on my own or even having to take a few steps back in terms of work again. However, if that’s what my back needs right now, I must come to terms with the present. Denial or distraction haven’t done any good for me and I’m not going in that direction anymore.

Lastly, I must say that I am so very grateful for the love, support and guidance I’ve found/ had over the last few years. It’s just been a small group of people working with me,  volunteering themselves to help, learning to accept my limitations as I learned to accept them myself, trusting me for knowing my body and needs the best, and, never failing to remind me in some way or the other that there is so much more to life and so much more to me than a life-altering chronic illness.

Love to all,


#throwback to December 2012

This is me just four years back (4/9 joints down) – a point in my life I would never want to go back to, even if someone paid me a million dollars for it.

I had received a diagnosis just two months before this photo was taken. My parents’ divorce was at its peak and there was so much uncalled for responsibility around it. My career and life plans were falling apart. My boyfriend of 5 years and I were going through a very painful break-up. I was popping 8 painkillers a day + 6 muscle relaxants + non-addictive sleeping pill and yet finding no relief. I had migraines which drove me mad and there was this annoying, buzzing noise at the back of my brain which just never stopped.

I couldn’t close my eyes or be alone in a room because I feared my body might fail me in some way. I rarely slept and if I did, I got nightmares and I’d wake up drenched in sweat. At times I was afraid I’d never wake up. I had palpitations and sudden fall in blood-pressure a number of times in a day. I would lose balance as I walked. I couldn’t wash my own hair or even dress myself. The creative inside me was no where to be found. My body needed energy and I couldn’t eat. I was hospitalized a few times because I started reacting to some medicines.

I only got weaker.

I was trying to hold onto my life, every bit of it, and the harder I tried, the more defeated I felt. My body was screaming at me and I didn’t listen. People around me wanted things out of me that I simply couldn’t give. I needed myself more than anyone else and I kept putting everyone else before me.

There was nothing familiar left about me or my surrounding. I didn’t trust my body and I didn’t trust anyone else either. The fighter in me could no longer fight. I thought I knew what strength was all about but I clearly didn’t.

I needed to let go.

And after what seemed like eons,

I finally started learning to let go,

to accept what can’t be changed,

and to work with my body.

There is more to learn + create,

but right here today,

It’s all okay.

Paddle Boat 

Let me tell you a short story about yesterday.

So I left home with a friend, expecting to go to a flea market and be back home within two hours. The flea market turned out rather pathetic so we landed up in this adorable cafe and had traditional Chinese milk tea + an almond cake. Then, since I was extremely excited about finally being out (not a medical appointment for once) after my flight back from India took a toll on me, I thought I could handle a couple more hours of staying out. We decided to go this beautiful place and sit by the water and think about life.

What happened next was totally unexpected and impulsive – instead of just sitting by the water, we went on a paddle boat for an hour. At this point, I must tell you that I love water (I think it has some healing effect on me) and I’ve always enjoyed water sports as a child. Just about seven years ago, I was close to getting a kayaking license and was looking forward to kayaking to some nearby island.

Okay, back to the present – some memories came flooding in and I was surprised that none of them made me sad or upset. Past is gone for a reason and my reason here (health) is of immense value, something most chronically ill people understand. I realized that paddle boating was probably the closest I was goinh to get to any form of water sports now so why not just give it a shot?

 The seats didn’t exactly look comfortable and were clearly at an angle that’s bad for my back. The paddles too, were located at an angle not quite right for my knees but even then… I wanted to give it a shot. I trusted my friend to take over when I needed a break so we hopped onto the paddle boat and went paddling away.

Well, we had a blast. We literally blasted Bollywood songs and laughed our heads off. Unfortunately, the winds were pretty strong and the waves were kind of harsh so we needed to be towed back after our time was up. I was kind of tired anyway so I’m glad we got a quick ride back.

So today, I woke up with noticeably high pain levels and extreme tightness in my lower back. It’s a challenge to walk around the house and I had to cancel Pilates just to stay in and rest my inflamed lower body. My calves, hamstrings and glutes really did a lot of work last evening. You might think that’s good, but trust me, this isn’t your after-workout-feel-good-and-sexy kind of pain I’m talking about.

Anyway, to conclude my little story. I’m super happy that I attempted something new. Something from my past but not quite. Something more present. And, I realized that it’s something that didn’t quite work for me – which is fine because I’ve got more information about my limitations. So do I regret getting on it? Yes and no. Yes, because dude pain is never fun. And no, because a part of me would’ve continuously longed for that experience and the sheer possibility of it perhaps not hurting me would’ve bothered the shit out of me.

Now I know better and next time, I’m taking one more person along with me so I can rest and the other two can paddle. Royal treatment? Sure, that’s better than being royally screwed (by pain) later.




When reality hits you in the most unexpected moment, 



Don’t distract. 

Look again. 

Feel again. 


Let go. 

Breathe again. 

Let go. Again. 

Breathe once again.

Let go. Once again. 

Everything is okay in this very moment. 

You are okay. 

6 years ago 

I could lift my arms up, to any height, hold them up for as long as I wanted to and I didn’t feel any sort of pain or discomfort

Well, I could stand for hours  ay Design school, get home and swim, hang out with my friends, work on my projects and not have to worry about not being able to get out of bed the next day

And of course, I could just bend at my knees  easily as and when, for as long as I want 

That’s Me.
Six years ago when my left shoulder was just a “one-off thing”, my health was already showing me signs but we thought they weren’t a big deal, I was still heading on the path of becoming an Interior Architect, teaching and choreographing Bollywood dance, swimming and kayaking used to make me feel alive, goals and success had a different definition altogether and I used to think making everyone else happy was the key to my happiness.I didn’t know what it was to be in pain twenty-four/seven. I can’t believe life had to put in so much effort to slow me down :)  SO much had to fall apart and indirectly fall in place for me to be where I am today – I’m able to look back and think and see the lessons I’ve learnt, the choices and decisions I’ve made, the friends who’ve stayed, the people I’ve come across in this mad journey, those who have inspired me to continue and have been inspired by me and I actually feel alright with how life has turned out. There’s still lots that needs to fall in place (and probably fall apart too) but I’ve realized there’s no race to run and that even if there is, it’s not the kind of race I’d like to be a part of anymore. There’s no tomorrow if you can’t live today. With some amount of direction in my mind, one day at a time is still my mantra and will be for the rest of my life. Six years (and counting for all the years to come) of fighting and struggling against my own health and body has made me who I am and is surely making me who I’d like to be. This is different and I’m okay with it being different now.