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?

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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

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

Measured steps

My back is in a terrible shape again. I haven’t been able to get out of my bed since last morrning, after my short walk. It’s been spasming pretty badly, making it difficult to rest.

Clearly, it can’t handle much activity at the moment. And, that’s fine too. It’s only understandable.

Last 5 days or so have been rather busy (strenuous for my body) with hospital visits and I also attempted walking a small distance yesterday and day before. Obviously, it doesn’t feel great seeing that my back has lost so much strength due to a flare up at the start of this year.

I haven’t fully recovered yet and I can tell that recovery is going to take MUCH long than what I first anticipated. In fact, somewhere after 4 months of being bedridden, I stopped wondering when I’d be okay because it was only making things harder. I was doing everything right, putting all the tools I’ve learned over last so many years to use, resting as much as possible and yet my back wasn’t improving.

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Once again, I realized that the only thing in my control is/was my response. I was doing my very best. My body was going to take its time to heal and I couldn’t magically put my back together and make it okay. That’s not how it works :) All I could do was continue doing things that could potentially help my back recover. I figured I’d rather accept the new baseline, the present, and learn to work around it.

Comparing myself to last year wasn’t helping just like comparing myself to pre-illness didn’t help when I was learning to accept my new reality. It made me feel stuck. I’m now at a point where even if I accidentally happen to push it, I might get bedridden all over again and I’d hate for that to happen.

Learning to work around new a baselines (and we may have many new ones in future since it’s a chronic illness) is the only way forward. Unfortunately, you take a risk each time you attempt taking a small step forward — you can’t fully be sure it won’t hurt you and you won’t know till you try. #chronicillness

See where you’re at, listen to your body and take a measured step forward. If it works, be patient and continue to take slow, measured steps. If it doesn’t, be EXTRA gentle with yourself — rest, adapt and try all over again.

Happy Rare Disease Day to all the wonderful spoonies out there!

I’ve been too fatigued and in so much pain that I just couldn’t get myself to post anything ,but, seeing my Instagram feed filled with  so many amazing posts trying to create awareness for rare diseases brought me immense comfort and a sense of relief – we’re definitely not alone. I’m so thankful to have come across such a courageous and inspiring community on Instagram. Knowing that I am #rare and yet there are so many others out there just like me gives me strength to keep going, even through the most miserable of my days.

Here’s to finding cure, and until then, having hope and faith for a much better future.

#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.