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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!

💕

So I’m sitting in my living room listening to mantras, my palo santo burning near my bookshelf, and i suddenly realize how quiet my entire apartment is. Everything is quiet. I’m in a noisy country but at this very point in time it’s all so quiet around me. I love this. I crave for this so much. This quietness is something I want and need to live this life to my very best.

There’s been far too much movement in my life lately (or should I say, all my life) that these moments of stillness is what brings me a sense of stability and peace. It allows me to connect with myself, which has been a little hard lately considering how terribly off track I am in terms of my daily routine and rituals that help me stay sane and manage my health. I can’t possibly stress enough how much a routine and some personal rituals have helped me to get here.

As the unpacking ends and the actual settling in begins, it looks like I can finally let go a little, slow down and focus a lot more on my health.

For the last eight months or so, my health took a backseat as I simply had to get through this move. I’ve been feeling sort of out of my element, you know, kind of scattered and all I know is that it’s not where I like to be. Despite dealing with a lot more health issues throughout 2017, I’ve had to push myself and make things happen. My thought was, the quicker I got things done, the quicker I got to rest. And now that my sanctuary has come alive to quite some extent, it’s time to prioritise health and self-care and work towards my next goal. More on that later.

Okay, I’m going to keep my phone away now and get back to sitting still. To listening to my heart beat. To watching those crazy thoughts come and go. To noticing pain.

To being thankful for being here.

#sanctuary #quiet #evenings #peace #calm #love #home #mantra #meditation #chronicillness #pain #suffering #eds #ehlersdanlos #ehlersdanlossyndrome #illness #routine #rituals #onestepatatime #gratitude #thankyou #health #mind #body

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

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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I haven’t been updating my Instagram or blog much lately and I don’t feel great about it because I really haven’t been writing much. Writing, for me, has been healing. I generally write a lot, whether or not I share my writings with anyone, but I do need that time and space to just be with myself.

Unfortunately, I haven’t been able to sit with a pen and paper in my quiet sanctuary where I pour my heart and soul out onto the paper. I know for sure that as my safe space starts to come together, and as my self-care routine becomes my primary focus once again, I will spend more time writing and sharing again too.

In the last two weeks, my ability to respond appropriately to my surrounding dropped drastically. It only makes sense, given that I have been dealing with too much at once. After sitting with this thought for a while, I realised that responses were coming from a place of fear and a sense of instability.

In 2017, I was once again required to make a hard choice for (not because) the sake of my health. Nonetheless, it seemed like the right thing to do and I’ve been okay with it. However, the physical of transition became so real in the last two weeks, it started taking a toll on me. I’ve been desperately trying to put things in place quickly so that I can finally let my body rest. The fear of what would happen if this transition caused my health to deteriorate even further worried me to an extent which reflected in how I responded to things around me.

I keep reminding myself that one of my strengths is and has been in my ability to adapt to the most challenging of circumstances.Unfortunately, though, I do have a tendency to be a little harsh and less compassionate with myself. Possibly a pattern from the past.

The truth is, it is extremely natural to freak out when things are moving too fast around us. This is how I see it: Transition = change = temporary instability = temporary disruption of routine = an opportunity to create a new, more present one = ability to transform & grow.

Over next couple of weeks, my goal is to allow myself the time and space to adjust. There is no need to figure out ten things at once. Some things may require my energy and others will sort themselves out.✨

I’ve been practicing setting healthy boundaries for over three years now. Initially, it used to feel scary, the thought of setting boundaries even with your loved ones or those you once loved but over time, I realised that it is okay to feel terrible about it and yet want to draw a line between yourself and anyone else.

It is important to protect your space; both internally and externally. That fear, that terrible feeling which sometimes feels like guilt is usually temporary and when you do in fact start seeing some positive shifts and change from learning to set healthy boundaries, that temporary feeling does disappear. Soon, you experience a very light, freeing feeling. I know this for sure.

I found peace in knowing that I’m doing what I’m doing for my the sake of my well-being and it always seemed worth it.

Setting healthy boundaries in your close and distant relationships is an integral part of self-care. It does not mean that you don’t tend to others. It means that you learn to tend to yourself first. Shifting your focus and attention towards what or who really matter frees up space and energy which can definitely be directed towards other greater things. There were many times in my life when events and situations around me made me feel helpless, as if there was no form of separation between me and others. I found that I was running low on energy for myself and that it was affecting my entire being.

It took me years to learn to set healthy boundaries and say ‘no’, firmly and politely where necessary.

Sometimes I catch myself slipping off my practice as well but I’m quicker to find my space and bring myself to stand my ground. You are allowed to go to any extent to ensure that your peace, solitude and sanity are well taken care of.

Twenty years

I am filled with so much love and gratitude for this place, it’s hard to even express. And despite the fact that the positive emotions I feel for this place almost equal the negative memories I am still working on letting go, my heart aches knowing that I am leaving a place I called home for the last twenty years.

I made mistakes here.

I experienced pain and suffering here. I was young and naive.

I made friends here. Real friends I’m so grateful to have come across.

I fell in love here.

I spent sleepless nights here. Crying, laughing, secretly believing in fairytales.

I made promises here.

I saw dreams here.

I set goals and achieved them here.

I was betrayed here. By near and dear ones, and by strangers.

I learned to protect myself here.

I was diagnosed here.

I fell apart here. Completely shattered into tiny pieces, I couldn’t myself anymore anymore.

I put back myself back together here.

I faced my very own demons, alone, right here.

I learned to trust again here. Myself and people.

I found my medical team here. My support system, without whom I couldn’t have come this far.

I dared to recreate dreams here.

I learned the art of letting go, here.

I finally found my true voice here.

I learned to speak my truth here and encouraged others to do the same.

I learned to be of support and service to the world, right here too.

I came across my tribe, people like me, right here.

I felt safe here.

This is where I wilted and learned to bloom again. This is where I learned to own my story, fully and wholly.

While I can’t lie that recreating a similar lifestyle and routine else where is going to take time and more patience than ever before, I do genuinely believe that it’s not entirely impossible. Somewhere I trust that the process of wilting and blooming over and over again has equipped me with the ability to deal with uncertainties of all kinds and be okay with not knowing.

You know that feeling when you look back and think perhaps everything happened to prepare you for something that is yet to happen? That’s kind of how I feel right now. As if I have levelled up in this game called life and now need to put my skills and tools to use in order to handle the next level; the next phase. There’s a lot I still don’t know but perhaps I am able to find peace in knowing that I have made it through incredibly painful times before and probably can do so in the future too.

Singapore, thank you for all the blessings and lessons.

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.