I’m a twenty-six year old dealing with Hypermobility Syndrome (HMS), which is sometimes categorized as Ehlers Danlos Type (III). I was finally diagnosed about four years back and have since lived with tapes, slings and guards on most parts of my body. It’s been one hell of a life-altering ride.
I don’t claim to be an expert in HMS or EDS and I defnitely don’t have it all figured out. I’m just one of the many out there who suffer from a rare, chronic and invisible illness and keep going. My intention here is to simply put together all aspects of living and dealing with HMS/EDS, including the loss and gain – both of which, I believe, are essential to who I am today and who I become tomorrow.
I read, write, dream and create.
I tend to be very honest towards my pain and its needs. I think pain is real and there’s no need to hide it or distract ourselves from it – it’s a part of our experience and exists for a reason. Pain is nothing but our body’s attempt to communicate with us that something isn’t quite right; that something needs to change. I’ve realized that distracting from pain leads to a lot more suffering than one can even imagine. My approach is to listen to pain, tend to it, and let it guide me to what needs to be done next.
Currently, I volunteer as a coach, or a guide to children with troubled childhood. I’ve always believed that our childhood environment affects us deeply and having some form of a strong support system is the least we need during our initial growth period. I’m happy to be a part of someone’s support system, and to do what I can do with what I have.
I also teach Art Meditation (well, I teach Art & Art + Meditation) to both kids and adults. I believe our creative energy and potential can be effectively utilised to remove the not-so-nice things out of our system and to help us deal with stress better. I teach how to use art and intricate patterns as tools to look slow down, look inwards, practice mindfulness and gratitude. It’s a great way to kick-start your meditation journey if you’re new to it.
Also, out of pure interest in essential oils, I create and blend various types of oils meant for different purposes. Oils have long been, and continue to be a part of my self-care and Ayurveda routine. Having seen how some blends have helped me, I sell some of my beautifully handcrafted oils online (INFUSED, by Manntra) and receive both local and international orders. My best-selling blend at the moment is the Rose + Marjoram, a blend specific to your heart centre.
Pain might be a part of life for now but I choose to suffer less, make necessary lifestyle changes and manage my predictably unpredictable life to the best of my ability.
One of the greatest lessons I’ve learned from my life up till now is to always have a sense of direction, and, to remember that life can have completely different plans. It’s not so much about these ‘plans’ as much as it is about how gracefully one can adapt to an unexpected situation. I’ve come to a conclusion that when life takes an unanticipated turn, the best you can do is take it #onedayatatime.
In the future, I hope to make use of all the different coping techniques, the knowledge and experience I’ve gained, to extend my help and support to others in need. I’ve realized that personal and patient empowerment are both imperative to healing and this journey that we are on. My goal is to continue empowering myself so that I’m able to help others empower themselves.
This is my journey. My tape story.