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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

Roasted yellow capsicum + sun dried tomato soup

So the pain and sensitivity due to 2 extractions (which required the dentist to drill through the bone) has reduced slightly, now that it’s a week since the surgery. Unfortunately, I see no difference in the swelling since the last three days. There was a significant decrease in swelling after the 4th day but nothing since then.

I’ve attempted to eat a little more than just soups. Mostly soft food items but I figured I’d rather stick with soups for a couple more days. Anything but soups or puréed food has been making pain and sensitivity much worse, which, obviously I could do without.

As a matter of fact, with EDS, we know that any form of healing takes much longer than what is expected. Unfortunately, sometimes it gets to you and makes you a little impatient, mainly because of the extended period of rest and recovery time starts to affect the rest of your routine etc.

On a positive note, I’ve started strengthening during physiotherapy once again. I had taken one entire week of any strengthening exercises and focused mostly on trigger point and fascia release. I needed to make sure the rest of my body is functioning to its best while I have my extractions some time to heal.

I hope everyone’s having a great Monday!

Lots of love to all

M

Sometimes I wonder if there’s any limit to the pain I experience. Then I suddenly remember that there is only limit to the suffering around the pain and the limit is my mind. The pain is in my body. The suffering is in my mind. Everyday I wake up and choose to lessen my suffering instead of only trying to rid my body of pain which I know has reasons; of which some are beyond my understanding. Thankful to be here today, despite all the different kinds of pain in all the different joints and partly unexplained pain that we are currently investigating again. Happy weekend!

💕

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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