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.



Rare Disease Day 2018

Today is a big day for us spoonies.

It is the official Rare Disease Day, an observance held to raise awareness for rare diseases and their impact on the lives of patients.

While the purpose of today is to spread awareness for diseases and disorders that affect only a small percentage of the population, I’d also like to take this time to say a big thank you to the spoonie community for making me realize that there is hope, especially during the worst of my years.

Thank you for doing the best you can with what you have and where you’re at and inspiring me to do the same.

Please take a moment today to validate yourself for the progress you’ve made and for the strength and courage you exhibit despite your daily struggle.

I’m ever so grateful to have found to have found this community. You serve as a reminder for me that we are in this together. Thank you for being you, for sharing your story and spreading awareness for all things invisible to most eyes.

Keep going one day at a time!

Friends and family,

If you’d like to show some support and help share awareness, log on to, click get involved and download the material which you can then share on social media. Alternatively, drop me a DM and I can share some material with you.



#showyourrare #showyoucare

#rareillness #rarediseases #awareness #2018 #february28 #rarediseaseday #ehlersdanlos #ehlersdanlossyndrome #eds #hypermobility #pain #brainfog #migraine #dislocations #sublaxations #fatigue #health #mind #body #inspiration #motivation #onedayatatime #love #support #community

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🤗❤️✨

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.

Look back…

If you ever forget how strong you are, pause for a moment and look back – look at all the times you fell and stood up, not just stronger but courageous enough to try over and over again. Look back at the times you could have shut yourself to love and pain, and built a wall around your heart, but you chose to remain soft and let light in anyway. Look at the times you showed up; for people and yourself. Your story makes only a part of you, and the lessons your learn and how you evolve, make up the rest of you. Ask yourself, “how has my story changed me for the better?” If ever you doubt your strength, your ability to love, your discernment and authenticity to walk your own path, look back… look back and see how far you’ve come. It’ll make it easier to continue moving ahead if you realise how unstoppable you’ve been up till now.



#strength #soft #courage #grow #love #acceptance #life #chronicillness #relationships #chronicillnesswarrior #ehlersdanlossyndrome #hypermobility #friendship #pain #suffering #family #illness #rare #light #journey #pause #unstoppable #keepgoing #faith #trust


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