Seek

Throwback to when I could still swim and position my arms a little more comfortably than right now. And now even though I end up walking in the pool or swimming with every move calculated and rehearsed thrice in my mind, I still find some peace being in the water. There’s something absolutely healing about water and I can’t find words to describe it. Leaving behind swimming 15-20 laps a day was hard because swimming was my escape or meditation (and it kept me physically fit enough) I thought, until I couldn’t escape anymore. Until I couldn’t run away from home, from a space I could barely breathe or be alone in, to really listen to my heart beat and know I was still alive. Until  my body forced me to stay in bed and find a way to deal with reality, with love and compassion for myself first.

Again, it doesn’t hurt so much anymore so I can actually share these things with you. In fact, this is so freeing, realising that I’ve learnt to let go of things I tried holding on to for a very long time, almost hoping they’d come back and fit together into this picture-perfect life; things that I thought made me who I was. Perhaps the way it happened wasn’t the best but I’m grateful to have realised very early in my life what truly matters. What I was never wrong about was that I was constantly seeking peace and a reason to be happy and activities like dance and swimming kind of gave me a taste of both.

Today, I am thankful my experiences have taught me that true source of peace and happiness, the kind of peace and happiness that makes you really glow, is within us. I can be in bed and in pain and still be at peace, still be somewhat happy knowing what I  now know for sure. Getting here took equal parts faith (in my body and something bigger) and conscious actions (because even when you think you don’t have control, you still have a choice to remain stuck or take the next best step), and maybe a dash of sparkles. ✨

Alive

🤷🏼‍♀️💃🏼🤦🏼‍♀️

🌸Do what makes your soul smile. If that’s dance and you can’t dance, find a way to feel like you’re dancing. Feeling is everything. Find ways to keep your spirit alive while you have to deal with and work around a not-so-healthy body. It’s hard enough on a daily basis and you’re allowed to find ways to make it a tad bit lighter on yourself, okay? You don’t need anyone’s permission for that. You are doing your best with the cards you’ve been dealt.

I can’t dance/perform like before, I can’t just stand up and let loose and dance freely but I can imagine doing it in my mind. I can imagine dancing, performing and choreographing like before and I can FEEL it as if it’s true. It makes me smile from within. That said, I know my body has its limitations and I know what’s right for my health. I don’t have it in me to be stupid and push my body in ways I tried to back in the past. You see, I might have had to leave dance behind but my love for dance will always stay with me and you know what?…that’s enough for me.

This isn’t some law of attraction discussion and I’m not going to say “imagine and you’ll have it” because if you don’t get it, you’d think you didn’t want it enough or you haven’t tried hard enough. If that were really the case, if only imagining solved all my problems, I’d be doing different things at this point because trust me, I’m bloody good with my imagination. All I’m saying is, be true to who you are and things that keep your fire going. Be a little #crazy in your own special ways. Keep those things alive; things that keep your enthusiasm for life going. Keep working on finding ways, finding solutions. Be open to possibilities while being aware of your #reality. I’m not going to tell you to have high expectations out of yourself when you have REAL LIFE limitations and when you’ve worked so hard to leave your old life behind.

Acknowledge your present with your heart and mind. Please do not work on going back to the life in your past which doesn’t serve you anymore today. Please don’t force yourself to walk backwards and create more suffering. Past is gone for a reason. Walk forward with what you have and what you can do. Be very practical + imaginative where necessary 🌸 #chandralekha #bollywood

Hello there spoonies and other friends!

So while I was off social media, I took some time for myself and made sure I brought my interaction with people to a bare minimum. I met just a few people apart from my pilates instructor, physiotherapist, ayurveda therapist and naturopath but I made sure to look at my phone and laptop less. In fact, I wrote more in my journal and typed less on my phone.

Some of the experiences I had just over this week made me think through a lot about how far I’ve come and how far I’m yet to go. When you really make an effort to disconnect with the noise around you and connect with what is already within, you finally hear the noise within you loud and clear. And if you dig deep enough, and have the courage to dig further, you find that there’s so much wisdom residing in there that you barely ever need to seek answers from outside. A lot of what we need to know, we already do.

So, obviously, I made a list of ten things that came up for me in the course of this one week. I took some time to journal and think through each point even more and I figured I have so much to share and so much to learn at the same time. I wasn’t too sure if I wanted to share this list with everyone but I’ve made up my mind to do it anyway. Who knows, it might resonate with someone out there.

1. Listen more; to your inner wisdom and to those who need to be heard
2. Express more gratitude
3. Have the courage to ASK for your needs to be met
4. Be brave and say ‘NO’ if/when necessary
5. Preserve your energy; it’s everything
6. Reframe your past, refocus on your present and reimagine your future
7. Return to the thoughts of peace, love, health and success
8. Validate yourself for every progress you’ve made
9. Make your own decisions. You know what is best for you.
10. Trust that you will always be supported if you’re willing to jump off the cliff. Keep doing your best and being your best even if you’re at your weakest.

The most important thing I realized was that I NEEDED this time. Unless I make a conscious effort to create a space for myself, I will always be a part of something I don’t need to be a part of. Love, Manasi ❤️ #chronicillness #selfcare

So proud of this girl!

She sent me a message on Instagram right after reading a post (Measured steps) on my Instastory. Check it out!

I shared this screenshot on my Instastory with my response in pink. It’s meant for everyone who’s dealing with an illness and serves as a reminder to myself.

(Dis)ability and In(Dependency)


Last few days highlighted my disability and helplessness in ways I have and continue to learn and make peace with.

I fell at a shopping mall and hurt my knee (falling down or getting into an accident is a big nightmare from someone like me), I saw a beautiful cat get hit by a car and realized how I couldn’t do much to save her only due to my physical limitations (post coming up) and the emotional pain of partial dependency and coming to terms with it you when you’re chronically ill (none of us choose dependency as option one. We didn’t consciously ask to be ill or unhealthy. And while we find ways to adapt and make peace with it because health is wealth, look at lessons and opportunities to evolve, it isn’t an easy process. Being sick is hard even if we figure out ways to make it slightly more tolerable. It isn’t easy knowing your strengths, your capability, your personality and attitude, your education, your drive and passion and then having to accept some amount of dependency due to physical limitations/dis(abilities). Do not get me wrong – I don’t regret having made certain choices and decisions, all I’m saying is that these were some of the most difficult and brave decisions I’ve made in favour of my health and I’m glad I did. I don’t know where I’d have been today had I not followed my guidance, despite all the external resistance. Just because something is right for you, doesn’t mean that it will be comfortable to come to terms with. However, you feel at peace deep within knowing you’ve honoured your health/stood up for yourself) came up for me through a rather time-wise unexpected, but intuitively anticipated news.

I won’t say anymore.

For now, I just need to be present and allow these emotions to run through me. It’s okay to have all kinds of ‘feels’ and feel ridiculously uncomfortable sometimes. Trust the process even if it seems unbearable for there is light within you and at the end of the tunnel. Feeling is being human, feeling is being alive. Let yourself have the time to process/work through emotions and once you’re ready, stand up, show up and take necessary actions to move forward.

How I try to cope with the unpredictable nature of my health

How I try to cope with the unpredictable nature of my health (8.5 years and counting)

1. I make all decisions related to my health on my own because no one else knows my body better. Patient empowerment is so important when dealing with a chronic illness.

2. I trust that my body will respond if I give it enough time and care. I need to allow it time + listen to it closely.

3. I choose to work on acceptance rather than fight the inevitable. It allows me to work with my circumstances from a space of love rather than hate.

4. I acknowledge limitations, suffering and pain and put more focus on opportunities, dealing with emotions and recovery.

5. I choose faith over fear; vulnerability when necessary over strength all the time (it can be pretty unrealistic to be strong all the time).

6. I protect my energy. I’ve learned to say more ‘no’ and less ‘yes’ both politely and affirmatively.

7. I do not track my progress based on what I can do in relation to others.

8. I keep myself updated about the condition + advancements in science. This way, I’m able to make informed and choices.

9. I try to find miracles on a day to day basis. It keeps my hope going for something greater.

10. I am grateful for what I have and who I have around for me (Quality > quantity, as far as possible).

11. I celebrate every little progress I make. Sometimes getting out of bed is progress too.

12. I make flexible plans and routine. Self-care is always at the top of the list.

13. I’m honest about my health with myself and people

14. I do not ask “Why me?” anymore. That question leads to a downward spiral and takes you straight into a shithole.

15. I look at my health as just one part of my experience on this planet. It’s not my health which defines who I am as a person; it’s how I respond to it that does. I can’t just rid my body of the illness but I can definitely work on giving it less power.

I end up having to work with my body as if I’m working with a child. It takes lots of time, effort, love, compassion and consistent practise.

It’s not easy but every response is worth it 💗

Update

Hi all,

I haven’t been too well since the start of 2017. I’ve been dealing with bedriddening pain + gut related issues and the effect of all of it on my activity level has been quite significant.  My health has taken a major dip this year and I’ve spent a large part of my time re-figuring things out.

This is life – it’s never predictable and to stay afloat, we have to keep finding a “new” balance + remember to be patient with ourselves through it. Sometimes it may feel like we’re starting all over again, however, it’s crucial to put our focus on the fact that we’re also wiser, stronger, more courages and a little more ready each time.

There’s been more happening in my gut and I’m currently working with an intergrative GP, a gastroenterologist and naturopath to find the next best step. The amount of decision fatigue I’ve experienced over the last five months is not funny. Apart from a rather serious back flare up + sublaxed shoulders, something so simple, straight-forward and enjoyable like food turned into this massive, overwhelmingly exhausting thing that required/ requires constant awareness and thinking.

For the next three weeks or so, I’ll be going on two very strong medications, known for worsening all existing symptoms. I’ve have been specifically told to not take this treatment too lightly and it might make life seem a tiny bit miserable. As someone who deals with excruciating pain and indescribable fatigue on a daily basis, I honestly don’t know how much worse things can get. However, I have also seen myself at my worst before and hence believe it’s important that I take extra precautions and have help available for me if necessary. Thankfully, I do have a small group of people to count on if needed.

On a brighter note, I’ve got a couple of workshops to teach and close friends to meet so I’m really keeping my fingers-crossed and spirit high :) I’m aware of what may happen, giving my body extra time off, saying more no and less yes (trust me, it’s needed when you are functioning on limited energy) and taking everything one baby step at a time.

I hope everyone’s doing fine.

In case I’m not around much, Happy June! ❤️

Love,

Md

P.S. This post is not about defeat or seeking validation, and most definitely not one asking for pity.  If it sounded like any of these to anyone, please let it go. I’m just sharing and giving an update of how things have been this year. Please keep in mind that it is very much possible to mentally accept and deal with things gracefully WHILE experiencing a great amount of physical discomfort.

#chronicillness

It’s barely ever what you see

Here’s the thing about looking like a perfectly healthy individual when the truth is something else altogether

A bus has to wait for you to get into uber and the driver thinks you’re this fit and fine woman taking her own sweet time when you’re actually calculating every action and movement because both your shoulders are still hanging off loose and no body sees it.

You rush a little bit, your joints dislocate. Everyone’s fine. You’re not. Accidents happen and insurance companies might reimburse you a certain amount but that’s not going to get you your health back.

Well, you can’t expect every other person on the street to know your story and that’s unrealistic. I’m writing this post based on nothing but fear, a very natural fear that doesn’t paralyse me mentally or emotionally (or even physically) but serves as a reminder to stay fully aware because that’s all I can do to protect myself. That’s all anyone with any form of disability can really do. And yet, despite all your awareness and presence, things happen. Shit can go wrong because there are so many other factors at play too.

Point being, let fear serve and guide you instead of  letting it paralyse you. Acknowledge fear as a self-protection mechanism and do what’s needed from there. Whoever says they’re not afraid of anything are definitely lying to themselves and the world.