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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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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If you have a story, write. If you have a story that changed you for the better, write for sure. Because when you do, you heal and create a safe space for others to heal.

There can never be enough stories of struggle and harsh realities which lead to strength, courage and acceptance.

Don't let your story confine you.
Let it become a catalyst for your growth, your ability to adapt + respond and your enthusiasm for life.

Love,
MD

#throwback to December 2012

This is me just four years back (4/9 joints down) – a point in my life I would never want to go back to, even if someone paid me a million dollars for it.

I had received a diagnosis just two months before this photo was taken. My parents’ divorce was at its peak and there was so much uncalled for responsibility around it. My career and life plans were falling apart. My boyfriend of 5 years and I were going through a very painful break-up. I was popping 8 painkillers a day + 6 muscle relaxants + non-addictive sleeping pill and yet finding no relief. I had migraines which drove me mad and there was this annoying, buzzing noise at the back of my brain which just never stopped.

I couldn’t close my eyes or be alone in a room because I feared my body might fail me in some way. I rarely slept and if I did, I got nightmares and I’d wake up drenched in sweat. At times I was afraid I’d never wake up. I had palpitations and sudden fall in blood-pressure a number of times in a day. I would lose balance as I walked. I couldn’t wash my own hair or even dress myself. The creative inside me was no where to be found. My body needed energy and I couldn’t eat. I was hospitalized a few times because I started reacting to some medicines.

I only got weaker.

I was trying to hold onto my life, every bit of it, and the harder I tried, the more defeated I felt. My body was screaming at me and I didn’t listen. People around me wanted things out of me that I simply couldn’t give. I needed myself more than anyone else and I kept putting everyone else before me.

There was nothing familiar left about me or my surrounding. I didn’t trust my body and I didn’t trust anyone else either. The fighter in me could no longer fight. I thought I knew what strength was all about but I clearly didn’t.

I needed to let go.

And after what seemed like eons,

I finally started learning to let go,

to accept what can’t be changed,

and to work with my body.

There is more to learn + create,

but right here today,

It’s all okay.

Sunday Afternoon Before Napping

IMG_4791Hello. Meet my Left Shoulder. It decided one fine day, about 5 years back, that I needed to stop. That I needed to breathe and let go. And that I had to be there for myself before anyone else. It is this shoulder, my left shoulder, which took me from being in Design class at 6:00pm one evening to an MRI machine at 9:00am next morning. It is this shoulder that first gave me a signal that my body wasn’t doing fine. That I really needed time for myself. I fought to be fixed. I fought really hard. But my body continued to weaken. There were more joints lined up after my left shoulder and I had no clue. I really didn’t know better. That’s where this journey began, in the midst of not knowing. This journey to come home to my own body. To be okay with where I am, to know that it’s okay if things looked different from how I once thought they would be. To learn that different doesn’t mean bad. It simply means different. Different can mean better; just not the same. To know that strength comes only from within. To be alright with emotions. To be okay with falling, and to stand up again stronger. This journey has opened me up to a new world. A world where nothing is more important than health. A world of love and acceptance. Of the body, no matter how wobbly it is. Not matter now unstable it can be. To be grateful for it, not because it could be worse, but because it isn’t. To know that pain and suffering is real but not feel defeated by any of it. To realize that sometimes we are where we are  for a reason and to dig deeper into that reason so that one day when we look back, we see how much we have learnt. How much we have grown. To live in the present moment, focus on things we have control over and things that can be changed. And to come to terms with things that we can’t fix. To be okay with limitations and to think about possibilities. To wake up everyday and smile. To keep moving forward one step at a time. To look back once in a while, not at how things were supposed to be, but to see how far we’ve come. And see that we still have it in us to continue. To be our own inspiration.

❤︎

Still Need More Time And That’s Okay.

 OKAY. de137adfd5d1e012c45110808210e67dI still don’t feel all that well. I still feel mentally drained out.

You know how it is like when you have exams? The actual exam period obviously gets very stressful, but once you’re done with your final paper, you still take a few days to recover from the exhaustion you experienced during and before exams.

I’ve been feeling like that somewhat. The post-exam fatigue.

Except worse.

I stayed up quite a bit last two weeks because my body was in a lot of pain AND because my brain had lots of things to sort out. A few things happened last week that completely zapped my energy away. I mean, dealing with pain in the body is one thing and when coupled with something emotionally or mentally triggering, I’m just left too charged up for anything else. It then takes me about a week after that to really regain all the energy and finally come back to my routine. My body requires EVEN more care and patience when I feel this way. But it’s during these times that my attention also shifts to my mind and heart. I tend to give more importance to how I think, how I feel.. my thoughts and my emotions, and not just the physical pain that I experience51926853745859c2fd95141ee3735e18.

It’s these times when I see what it is like to really be human. Experiencing physical pain makes me feel alive enough I think, but to experience all kinds of emotions and thoughts together with that is a different story altogether. That’s being human, that’s being more alive than ever.  I don’t hide away from these things now. I think it requires some amount of courage to look straight at your thoughts and emotions and to figure them out, one by one, with patience and care. Just like my body needs my time, my mind and heart need my time as well. I’ve taken a while to understand this.

I gave myself this week to recover, to work through things slowly, without any kind of rush. Clearly, I’m not there yet. It’s Thursday already, but I require more rest. So even if I take a few more days to start feeling normal, that’s okay. I’ve been totally off routine this week –  I haven’t been able to go for Pilates, go into the pool as much or even walk like usual. Things are sort or and sort of not going according to my goals for this week. My main goal this week was to recover, which is happening slowly. But everything else.. not really.

It is also during such times that I have to be honest with people around me and tell them I’m not in a state to deal with anything new. If I need to, I make sure to tell people that I’ll catch up with them when I’m better. I simply can’t take in more information from anyone else when I have so much to sort out internally for myself. Since young I’ve had a tendency to listen to other people’s problems and to help them out – but these days I need to put myself before anyone else.

I’ve noticed what hela2454ac9d3e89a7ff709038bb5beeaa0ps me feel better (other than sitting with myself) during such times is talking to complete strangers about something totally unrelated and light, or spending time with people who know that I take my time through things. I have my own way of processing thoughts and emotions, and I don’t appreciate being rushed through this. For a moment I may feel like dancing on “Desi Look” or “Chittiyan Kalaiyan”, and the next moment, I may want to run to my room to calm myself down or cry my heart out. Having this sort of a freedom is so important to me now!

There is a general pattern to how I  function and I’m okay with it – I feel like crap, I let myself feel like crap, I work myself out of the crap and I don’t feel like crap anymore :) So right now I’m some where between working myself out of the crap and not feeling like crap.

I allow myself feel what I need to feel, I look at my thoughts and keep the healthy ones, and then I slowly bring my focus back to present, back to where I am and where I’m headed. Sometimes this takes longer than usual. But so what?

OH. And I eat a lot of dark chocolate. 

The Saree Secrets.

Just a couple of weeks back I got a chance to wear a saree after ages . I’m not sure what it is with me and sarees but I have a thing for them. I’m yet to figure this out :) I think I was fascinated about wearing sarees (since 13 or so!)way more than being able to drink, drive, party or anything else people are generally excited about around that age.

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Thank God for self-timer!

Being in Singapore, you don’t always get a chance to wear all your beautiful Indian clothes which are otherwise just catching dust. I have always liked wearing Indian clothes so there were times I would just imagine an occasion for myself and wear kurtis and patiallas to Design School, or be the only 17-year-old wearing a black and turquoise saree at a New Year’s Party.

I thought Arijit Singh’s concert was pretty decent an occasion for a saree! It seems it was also the Rare DiseaseIMG_3451 2s Day. I didn’t know about this till the next morning, but it was surely a big enough reason to wear what felt good. I chose to not wear a sling that day – I let myself do this sometimes. Only SOMETIMES.  So when I  do make a choice like this, I am usually prepared in other ways — 1. I had taken extra pain medication, not just for my shoulder but because the night before I couldn’t get a decent sleep and that made my lower-back feel worse. 2. I  had spent the earlier part of the day being even more kind to my right shoulder, lower-back and knees, and 3. I was out with friends who knew my condition a bit better than the rest, and that always helps. 

With a lovely golden blouse, an elegant black saree, matching earrings and accessories, I think I looked like a perfectly normal young lady on the outside. The truth is, all the not-so-normal things were underneath my saree giving me the right kind of support I needed for that night. And no one even knew!

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I wore my Hush Puppies Body Shoe. All I can say about them is that they’re really ugly but useful. They are not anti-slip, which is scary, but they’re so amazingly comfortable to walk in. I threw away the black pair just a few days back so I had to wear the brown ones.  And of course, my knee guards! There is no being out at a concert (or anywhere) without them!

On the days I need to be out of the house for longer or make sure I don’t need to be carried around by someone, I must have proper footwear. I need shoes which provide me with right kind of support for my high-arches. I need shoes which give my feet enough cushioning so that my lower-back doesn’t cry in pain later. And, if I want to reduce the chances of my kneecaps dislocating even by a small percentage, I’ve got to have my knee guards on. It’s not as if I feel no pain just by wearing Orthopaedic shoes and knee guards, but it’s just that if I didn’t do these things, managing my pain later gets almost close to impossible. I have gradually become okay with the need to wear ugly shoes (sometimes!) with a saree or black knee guards with a short skirt.

About six months back, I threw away my entire collection of heels – right down the chute, one pair at a time. I used to love wearing heels! I could even dance in them easily if I felt like it.  I cried quite a bit that day because it was a massive step forward. I really cried a lot. I let myself cry a lot. I think it’s natural to feel sad each time you have to let go of a part of your past – it’s like giving away a piece of yourself or your old self. I had those shoes in my wardrobe for far too long! I was holding onto the hope that someday, I’ll be able to walk in heels again. Sure, someday I might be able to! But that someday isn’t today. Or tomorrow. Or anytime soon. I realized I was only making things difficult for myself. I wasn’t letting myself accept my changing body and  my new needs. I had to let go of those shoes so I could let go of memories that were holding me back.  And I did.

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The next day I woke up feeling lighter and emptier in a good way. I still felt a sad. But it felt like I had more space in my heart for something new. Anything new.

I had the most amazing time at the concert, even though I was wearing ugly brown shoes that didn’t match my saree at all. I don’t think it even matters that much to me anymore. I’m not always wearing shoes that don’t go with my clothes, but when I have to, I try not to let that drag me back into the past. Really, if it weren’t for these ugly but useful shoes, I wouldn’t have been able to enjoy the concert as much. I got a chance to wear a saree, take lots of photos, watch Arijit Singh perform live and have a nice dinner with a group of close friends after that. I think that was enough for me to say that I had a brilliant day! I had to deal with extra pain later but that’s okay – that’s just how it is usually. It takes me a couple of days to recover from being out at such events.

Slowly but steadily, I’m starting to let myself be what I am right now. It’s not as if I don’t feel bad when I have to pick unattractive Orthopaedic shoes over gorgeous high-heels or make any such choices, but I surely don’t hate myself for having to make these choices. The times I feel upset about these things, I just let myself be upset for a bit. After a while, I come back to respecting the fact that I have a rare body with really rare needs.