A small something

I was diagnosed with EDS type 3 in 2012, and have since been learning to live with theeillness. Before my diagnosis, I spent a good four years searching for a reason behind my deteriorating health and found no answer. Imagine being 18, three months into the course you loved, and suddenly starting to fall ill day by day. I tried everything that was “supposed” to help only to find out that it’s not a one size fits all kind of a situation. No one knew what was wrong with me and some refused to believe that someone in their late teens and early twenties could possibly be in so much pain. The struggle was real and it was beginning to affect my lifestyle. At one point, I thought I was living someone else’s life. It was devastating and unexplainably miserable. All it took was one medical professional to sit with me and really listen to my complaints and put together all my symptoms since young, which really didn’t seem out of place at that point.

After years or greiving over my old life and resisting what was coming, I finally started to work on acceptance and letting go. I could no longer run away from the fact that this was a chronic illness and the only way to move forward was to make peace with it as though it’s part of who I was, because it is. Sure, It doesn’t define who I am, but it plays a major role in every little or big decision in make in my life. It affects my energy levels, makes me put emphasis on bigger and greater things in life and hence also changes how I choose to live my life.

Things were only getting from bad to worse. The longer I held on, the more I struggled. The more everyone around me struggled, too. When I could no longer push, when my body started to scream and not just whisper, I figured it was time I made major lifestyle (my passion/activities I enjoy, the people I spent time with, my daily routine etc) and career change in order to accommodate and honour my health. And so I did.

I no longer see a point in creating suffering for myself by trying to push my body beyond its limit. It’s hard but I’ve realized that you have to make a choice every morning, to get up and do the best of your ability. Whatever your best is, is good enough. I’ve also realised the importance of staying true to your personal experience no matter what anyone says and also finding people who trust you.

Over the last few years, I’ve been working on adopting a new perspective towards my health and the choices I need to make. Firstly, I tell myself that these choices and decisions are FOR my health, not BECAUSE. Secondly, I choose to believe that I am fighting my illness by loving my body. Thirdly, I take conscious steps towards forgiving and letting go of what I thought my life “should” have been and adopt an attitude of gratitude as far as possible.

I won’t lie – living with chronic illness is tough. It complicates your life and makes you feel as if there is nothing more to life but being sick. It makes you feel like you have to climb this never-ending mountain all yourself and that no matter what you do, it’s not enough to change anything or make a real difference. It makes you think about the meaning of pain and suffering. Question your abilities and sense of self. I know the extra suffering that comes along with the physical pain.

Then again, every day is a new day and all we can do is acknowledge our pain and learn to work with it. It might require you to reassess your path every now and then and do what is in alignment with your health. That choice to work with your body while taking one little step forward towards what you love, or what frees you and makes you feel at peace is what reflects your strength and courage. It’s not your illness that defines you, it’s how your choose to live with it that does.

You have the choice to do something every day that makes you experience a small victory. And many victories put together allows you to overcome the burden of living with a life-altering illness.

Keep in mind that this ‘something’ I’m referring to doesn’t have to an incredibly big task or fit the expectation of the society in any way. It could be something as basic as getting out of the bed, holding a brush and writing a letter, doing an extra shift of your part-time job, washing your own hair, maybe cooking yourself a meal, meeting someone you love, reading a book to nurture your mind… anything that makes you feel like you’ve taken a step forward on that given day is a good enough start.

One day at a time.

One step at a time.

and, remmeber, you’re allowed to pause for as long as you need to before starting again.

Love,

MD

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this is a photo from last year when I stepped out of my apartment for the first time after being bedridden for seven months. Apart from the trips i made to the hospital for tests and appointments, i was completely bedbound due to a massive lower back flare which caused excruciating pain and muscle spasms in my entire lower body. i was also undergoing a treatment for #sibo, following a highly restrictive diet which was helping my physical symptoms and also changing my relationship with food for the first time. With support from my close friends and a couple of family members, i somehow survived those seven months in my own apartment, walking not more than 200 something steps per day. i think i’ve dealt with times worse than that and have come out a little wiser and stronger each time in my entire life. Despite spending countless nights in pain and doubt of whether i’d get out of bed the next day, i’m still here today. Not ‘fixed’ or magically cured. Just doing my best and allowing myself some rest. And so are you. And I promise, if you’ve come this far, you can go even farther.

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

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.