EDS may be a big part of my journey but it isn’t everything ❤️

I’m starting to see how this illness is a vehicle for me to look inwards, to become a better person and to live a more fulfilled life.

I’m not grateful for the pain I experience but I’m definitely grateful for the lessons and blessings that have come along with being made out of faulty collagen.

The more I accept this illness and the body that I’m in, the more I realise that I am more.  That I am whole despite the brokenness that often follows an illness.

I’d like to believe that as I continue to do the work I need to do for my own healing, I am more equipped to offer the same to the world. One thing is for sure, I’m learning to own this illness but I’ll never let the illness own me.

Love to all

-M

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Dear Readers

Dear Readers,

There’s been a lot on my mind lately and I’ve been thinking all this while whether these things were appropriate to be shared on my blog. These things are somewhat personal and sensitive but I remembered my very purpose of starting this blog in the first place — it was to create a safe space for me to be exactly who I am, share my experiences openly knowing that my account, while helping me make sense of my experiences and live life to the best of my ability, may even help someone else in their journey.

So keeping that in mind, I finally decided that sharing my experiencing and expressing my opinions out here is definitely worth it.

My recent move to India has brought up so many thoughts and emotions for me. For sure, some of it has to do with my childhood and leaving my home of twenty something years. However, a larger part of it has to do with my inability and struggle to make sense of how the system and culture functions out here. I agree that I grew up around lots of Indians and that I didn’t fully lose touch with my roots, but I remember very clearly and from a very young age, feeling very strongly that I don’t fit in.

Let me try and be a little more specific here.

I was seven or eight when I left India. My parents, like many other parents, were highly protective of us. Basically, I have barely any memory whatsoever about the world outside of the comfort of my home in India. Ask me about my pre-Singapore childhood experiences at home and I recollect them as if they happened yesterday. Quite frankly, I remember every painful experience inside of the four walls. Somewhere, as a very young girl, I believed that the world outside was a perfect place. You could say I was rosy-eyed; believing there was peace and love everywhere because somehow that was all I cared about. Naturally, I was naive and didn’t know enough about the actual world out there.

Then, after moving away to Singapore, India became a vacation spot we’d visit once or twice a year.Obviously by then Singapore has started to feel like home. India, to me was this place I’d visit for a limited time, meet limited people and well, say goodbye and return. It was great meeting everyone but a part of me always craved going back. Almost as if I already knew at that age that something about the environment didn’t sit well with me. Or, as I said before, I didn’t fit in.

As I grew older, that feeling got stronger. My views about my homeland started to change drastically, as if blossoming into a young woman brought along a threat I wasn’t quite aware of. While I truly enjoyed my time with family and friends in India, I got more and more uncomfortable about the culture, certain family dynamics and gender roles. As I write, I’m trying very hard to remember at least ONE holiday where something didn’t stand out for me, or that I didn’t feel threatened by some men outside family, or where I actually felt like I could connect or relate with the women I came across. There was just too much out there that made me feel terribly uncomfortable. Being a highly-sensitive child, I didn’t need to fully understand things; the vibe around a situation were good enough.

Today, twenty something years later, I’ve returned to this place again, no longer as a teenager who couldn’t entirely relate to her own culture or who felt threatened as a girl, but as a healthy-looking grown woman, confident in her individuality and her choices AND ALSO as someone suffering from a chronic illness.

For the kind of internal work I have committed myself to for a few years now (I make mistakes but I’m consciously working on myself every single day and seek guidance when needed), I have returned to India knowing very well that the transition isn’t going to be a walk in the park. That said, I find that I am open and willing to embrace this place and all that is in store. I am willing to put some of my most traumatic and painful experiences away and look at this place with a new pair of lenses.

Initially I thought the approach of camouflaging (not fitting-in, that’s different) will get me through circumstances here. You see, you don’t have to fit in, but you could just camouflage your way out, no? Not stand out too much. Watch what you say. Watch what you wear. Watch what you share on your blog. Be nice all the time with everyone. Watch your voice. Don’t react even if people are condescending towards you etc. But as the days went by, I reached a conclusion (for the millionth time) that fortunately or unfortunately, there is absolutely NOTHING camouflageable about me. Not my face, nor my body, not my personality, nor my lifestyle, not my story, nor my parents’ story…etc. etc. and that is just how it is. My life experiences, in general, are nothing less than a cultural shock to most people here. All the work I’ve done to accept myself, set healthy boundaries and evolve as a person is such a waste of time if I focus on camouflaging!

So, I stopped. I don’t want to fit in and nor do I want to camouflage my way through life here. Trying to be anything less or more than who I’ve become makes my days feel less fulfilling. Living on someone elses’ terms or expecting my story to be understood as is, both, eat into my precious energy.

To say the least, it’s been quite a challenge being a young, single, work from home (or not, if health doesn’t allow), chronically ill and pretty woman in a place like India. That whole combination somehow doesn’t seem to help. I’m award that women like me in other parts of the world struggle too but for the sake of this post, or collection of posts, I’ll be writing about my experiences here in India.

It’s been harder than I thought. You know how knowing is one thing and actually experiencing something is another? I’ve not known enough about India (from my personal stories and reading) to make informed decisions but never have I had to experience the culture the way I need to this time. I’m seeing things around me that I don’t quite like (never did) and I’m learning to respond in a way that honours my present self.

If you know me personally, you’d know that writing is extremely healing for me. It helps me process my thoughts and allows my emotions to move through my system (who wants that gunk sticking around inside anyway?) more easily. I usually write for myself, some of which I share and some I don’t.

Over the years I noticed that as I write and put things out there, I also directly and indirectly connect with people around the world. Maybe me sharing my experiences as I manoeuvre my way through this transition and issues like sexism and ableism, could potentially make someone else out there feel heard and less alone.

At the moment, the closest of my relationships consist of men — my brother, my dad, one of my best friends who is a guy and a male cousin. While they can try and understand how I feel, they cannot possibly, even if they wished, fully grasp or wrap their heads around the actual intensity. Of course, they’re around to help but certain sensitive topics require more than just that. They require being put out there. Being spoken about, often publicly too.

My closest girlfriends, on the other hand, share the same opinions as I do too but once again, being chronically ill takes things up a notch. Your environment and how things function in it affects your health to a level not understood by most.

This is going to be a step up in my journey. As I learn to own my story once again (this time in a very unfamiliar setting) show up for myself and become completely okay with not fitting in, I hope to keep my posts on here rather raw and as unedited as possible. Obviously that means if you’re expecting a level of political correctness, my posts are not for you :)

Do wait up for more posts coming in as they come in. I will only be writing if my health permits.

Lots of love,

Manasi

P.S. I will even be turning off the comments section on some of the stories I share. Please feel free to reach out to me on my e-mail if need be. Should you have anything defensive to say about my stories, please remind yourself that our experiences can very well differ and neither are necessarily invalid.

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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 rarediseaseday.org, 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.

Love,

Manasi

#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

Latest update

Last few days have been so ridiculously exhausting. I spent most part of my birthday and Diwali week just running around hospitals, popping strong anti-inflammatory tablets and muscle relaxants and getting scans and tests to figure out the cause behind this maddening, deep ache in my right lower back, abdomen and hip (I find one-sided aches more challenging to manage).Honest to heaven, I haven’t experienced pain of a similar kind ever before in my last nine years of dealing with ehlers-danlos hypermobility type. This is not to say that I haven’t experienced pain of this intensity; no, I’ve dealt with higher magnitude of pain and much worse symptoms too. It’s just that I can easily and clearly distinguish between my ‘normal’ aches, pains and sensations and this strange, relatively new kind of discomfort, which initially seemed much like a muscle spasm. Let’s hope it’s not something I have to get used to. At this point, there are a few possibilities which we’re trying to explore and nothing can quite be said for sure till next week, sometime after my appointments with the specialists. Last couple of evenings have been just nice, calm and festive at the same time and filled with love and light (apart from food). Also, I’ve got a trip coming up real soon which I’m super excited about! Hopefully I’m healthy enough to travel and get by fairly well! There’s so much happening over the next few months I can’t even begin to explain out here…things are moving and they’re moving fast! I hope everyone’s been good. A very Happy Diwali, all!✨💕

#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.

Seek

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. ✨

Keep on going on 

There’s so much I’ve been thinking about lately and want to write about but my health has been keeping me terribly busy and I’m almost alway too exhausted for anything else.
My back, shoulders and knees have been screaming at me all at once with my right wrist, left thumb and neck taking turns. It’s tiring on all levels, especially with the brain fog kicking in every once in a while. Maybe this is the new exhaustion and fatigue level I need to learn to work around now that I have a new “normal” or new baseline to consider. It feels like I’m either resting/doing things that involve looking after myself or teaching/working on classes but to be honest, there is so much more going on in between! I’m doing a lot and I need to keep telling myself that.

Sometimes in the midst of trying to figure out everything, I forget that I’m doing my best and that there is only so much I can do given the circumstances.

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Sometimes we create our circumstances and sometimes we’re born into them. Either ways, we can only learn to respond to what is.

Keep on going on! You’re doing everything.

Have a happy weekend 🌺