Spending the next few days and possibly even the rest of the week in bed. I tried to push through last week, hoping the tightness and spasms in my lower back and sacrum subsided but unfortunately, there has been no progress. Strengthening is on hold for the time being and we’re trying IFT + manual work on my lower back during physiotherapy.

About six days ago, i fell right on my bum while taking a photo of a friend and since then, my already triggered lower back pain got much worse. Having a sublaxed tailbone and two slipped discs makes pain unbearable sometimes. Add injury or impact of any sort and that takes it to another level. My reaction was to get more physiotherapy done, tend to it using all my pain management techniques and increase my dose of analgesics and anti-inflammatories.

Yesterday, however, just as I was trying to get out of bed, I realised I couldn’t possibly let this continue. I had to finally pause and listen to my body. I need to provide it with a conducive environment to heal and recover. I now need to allow it time and give myself permission to rest without guilt. Starting today, I’m going to do just that. I’ll work on my coaching coursework and do what is possible from my bed, pacing and resting when necessary. It’s time to give it time.

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

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.

“Do you ever get tired of looking after your body?”

A question I often get is whether I ever get tired of looking after my body. Yes. All the time. It’s a lot of work, much like looking after a hyper active kid who wouldn’t let you rest and requires all your attention because you never know what he might knock over or set fire to. Of course it’s tiring!

Over the last few years I realised that sometimes it’s almost impossible to find a direct link between what you do and what happens to you. The right thing to do then is to do your best based on the info you have. Can you imagine the kind of questions we’d have answered by now, in the realms of chronic illnesses and life if it all worked on a very distinct cause and effect basis?

I’ve personally noticed that there could (not always) be a cumulative factor to it instead. Ten different things added together may lead to a particular favourable or unfavourable result.

For example, sticking to my daily routine in terms of self care and rest, my nightly routine, my weekly physio and pilates, all my strengthening exercises, medications, spending time in my safe and healing environment, following my specific diet, all my doctors’ appointments, not signing up for any societal obligations and exercising the power of saying NO, usually allows me to manage my health symptoms better and sometimes even do more.

Similarly, not being able to do any of the above causes my body to start de-conditioning and overtime I start to lose my day to day strength. Now, add that with significant movement from traveling and a few days of too much activity and my health starts to deteriorate. Hence why I speak of sticking to a daily routine, setting flexible goals and drawing boundaries for yourself. It can become the difference between me fighting a chronic illness versus managing one — and that’s a big deal.

Over the last ten weeks, i was somehow managing my symptoms but not doing a very good job of it. Sooner or later, my body was going to begin to de-condition. It’s happening now. After a horrific night of painsomnia and lack of sleep, I just spent the entire day curled up in bed.

I think I’ve hit my limit and all I want to do is rest. #chronicillness

How do you define work?

https://themighty.com/2018/02/unable-to-work-because-of-illness/

Every bit of this resonates with me.

It’s a constant struggle for people like me to remember our worth when there is so much stigma around being sick (especially young and sick) and not being able to work.

It often makes me wonder, how do you define work anyway?

Does work = I bring money to the table every single time? does my voluntary work with kids with troubled childhood which doesn’t earn me anything but makes me feel valuable and like I’m making some difference count as work? Does me trying to help an individual who is newly chronically ill/struggling with their health mean anything in the society at all?

What about the times I teach classes hoping they help those who participate — does that count as work even if it’s not always sustainable? What about the job I did as a receptionist at a pilates studio hoping I’d be able to stick with it and then got bedridden — does that count at all? Is that seen?

Does it matter that people like myself at one point had great aspirations and goals too and had to leave those behind, grieve our old selves and learn to accept what we’re presented with? Does anyone ever see the pain and the courage behind having to leave what brings most of us financial stability and freedom in order to prioritise health?

What about the work you put in day in day out to look after a faulty body? Imagine having to look after an extremely mischievous and sick child who doesn’t listen to you for twenty four seven. No break whatsoever. Not even when you sleep.

It’s easy for people to ask, “what do you do?” because it’s the most common way to start a conversation. It’s also very understandable and I have a standard answer ready. But you won’t believe the number of people I’ve come across up till now with the mindset that if you’re not working, traveling and or working out, you’re probably doing nothing. Or not doing enough of something. Or aren’t ambitious enough. Have no goals. Have nothing figured out.

What makes so many people think that those who’re sick are lazy or not ambitious enough? Couldn’t our ambitions and priorities have changed? Can we not bring empathy, compassion and kindness to the table instead of money? Is it not possible for us to do our part in some other way? Can we not be the people you turn to when things aren’t going right? Can we not support the family and household in other ways?

Or how about this: is it not possible that by us doing our self-work and learning to accept and tend to our illness allows us to manage the illness a little better and hence take some load and burden off those who are trying to support us? Isn’t that work too?

20 degrees and sunny and loving it. Yes, yes, I know. There will be snow, my joints will hurt, winter gets depressing blah and blah and blah. Sure, but what matters right now is that I’m here today and that at one point, I didn’t think it was possible.

This place is making me dig deeper, unravel yet another level and is sort of making me feel lost in a guided way. It’s not the kind of lost that makes you feel afraid. It’s quite the opposite. I’ve been waking up every morning to a renewed sense of curiosity which is nice and refreshing.

I’m looking at things around me, some familiar some not. But I’m seeing them differently. Maybe I needed this. A break, an opportunity to put other things aside for once and be, even if it’s for a while.

I’m not talking about a break from being sick. No, that doesn’t happen. I’m referring to a shift in focus. Not distraction. But to zoom out and see the bigger picture one more time. From constantly *having* to figure out and find solutions quickly (this year is my 10th year of being sick, 6th since diagnosis) to allowing myself some grace.

From being bedridden for 6 months last year to starting to teach again to having to stop again to moving to India to figuring out a million and one things in a new environment (new societal and cultural norms) to adrenaline fatigue and flares of different symptoms, I just haven’t gotten a chance to truly take a long enough pause and realign myself.

And for this reason, it’s quite likely that Canada will hold a special place in my heart. ❤️

#thankyou #canada #2018 #chronicillness

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

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.