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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Line

I wonder why things have to be so extreme out here.

Either people help you or they don’t give a shit. Either you’re expected to need help all the time or not need any. If you ask for help too much, you’re considered helpless. If you don’t need help (they want to help) and you say, “No, thank you!”– that’s rude.

If you expect people to look out for you, you get no say as to what’s okay and what’s not. You don’t get to draw a line and drawing that line is so necessary! People hover over you day in day out as if you’re in need supervision when all you need is perhaps for them to check on you once in a while. If you tell them you need space, they take it personally as if it’s all about them when it’s more about your personal space and what helps you heal.

I’ve noticed that out here, you are forever expected to entertain and be entertained when all we need sometimes is some quiet time and letting each other be. I fail to understand how a group of people can start chattering away at the crack of dawn and continue chattering away throughout the day, only taking breaks to use the loo and shower, and perhaps to sleep.

I see how there could be some positives to spending time together and doing things together — I mean, I love it too! Cooking and dining together, sitting around and catching up, playing games as a group… all that is great for bonding! What is beyond my understanding is how people don’t need pockets of their quiet, personal time to tend to themselves.

(I mean, sure, we all function differently and by no means am I saying it has to be just one way or the other, but let’s just say, it’s absolutely hard for me to relate to. Just like my illness and my lifestyle is hard for others to relate to.)

It’s such a misconception that tending to yourself means you’re selfish.

Self-care is neccessary.

When you learn to tend to yourself, you are able to be at your best self for others. When you learn to give to yourself first, you learn to give wholeheartedly to others. It’s through learning to set healthy boundaries for yourself that you learn to respect those of others. It’s through sharing quiet moments with yourself that you can truly share time with others. From my understanding, for us to forge deeper relationships with those around us, we must begin with forging a deep relationship with our ‘self’ first. And maybe this concept is too foreign for some parts of the world but personally, it has made the greatest impact in my life and how I’ve come to terms with my illness. The journey of self acceptance has a lot to do with self-care. And self-care has a lot to do with drawing a line.

If there is anything that I truly wish for, it is for our culture to introduce concepts like self-care and healthy boundaries from a young age. Imagine how far we’d come.

-M

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.

 

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

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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🤗❤️✨

Label?

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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 

 Kittens/puppies
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Dark chocolate

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Warm shower/bath

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Essential oils

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Journal + Pens

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Books

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Flowers

Tea or coffee

 Comfy clothes

Bed with a good mattress

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Pretty nails

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Peace + Quiet

Meditation + Mala

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Good food

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Friends/Family

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

सेलfie/LE/

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.

#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.