Latest update

Last few days have been so ridiculously exhausting. I spent most part of my birthday and Diwali week just running around hospitals, popping strong anti-inflammatory tablets and muscle relaxants and getting scans and tests to figure out the cause behind this maddening, deep ache in my right lower back, abdomen and hip (I find one-sided aches more challenging to manage).Honest to heaven, I haven’t experienced pain of a similar kind ever before in my last nine years of dealing with ehlers-danlos hypermobility type. This is not to say that I haven’t experienced pain of this intensity; no, I’ve dealt with higher magnitude of pain and much worse symptoms too. It’s just that I can easily and clearly distinguish between my ‘normal’ aches, pains and sensations and this strange, relatively new kind of discomfort, which initially seemed much like a muscle spasm. Let’s hope it’s not something I have to get used to. At this point, there are a few possibilities which we’re trying to explore and nothing can quite be said for sure till next week, sometime after my appointments with the specialists. Last couple of evenings have been just nice, calm and festive at the same time and filled with love and light (apart from food). Also, I’ve got a trip coming up real soon which I’m super excited about! Hopefully I’m healthy enough to travel and get by fairly well! There’s so much happening over the next few months I can’t even begin to explain out here…things are moving and they’re moving fast! I hope everyone’s been good. A very Happy Diwali, all!✨💕

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Days of nothing but exhaustion.

People ask me where and how i find strength to get through days like today and while i have a long version of my entire journey up till now + my on-going process,

the shortest response i have is:

“With kindness, patience and love towards my body. It’s a struggle sometimes but sticking to a practise of self-care and self-work is a choice i continue to make every single day. And somewhere in between all that conscious work, i find strength, courage and acceptance.”

//Manasi D

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.

Keep on going on 

There’s so much I’ve been thinking about lately and want to write about but my health has been keeping me terribly busy and I’m almost alway too exhausted for anything else.
My back, shoulders and knees have been screaming at me all at once with my right wrist, left thumb and neck taking turns. It’s tiring on all levels, especially with the brain fog kicking in every once in a while. Maybe this is the new exhaustion and fatigue level I need to learn to work around now that I have a new “normal” or new baseline to consider. It feels like I’m either resting/doing things that involve looking after myself or teaching/working on classes but to be honest, there is so much more going on in between! I’m doing a lot and I need to keep telling myself that.

Sometimes in the midst of trying to figure out everything, I forget that I’m doing my best and that there is only so much I can do given the circumstances.

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Sometimes we create our circumstances and sometimes we’re born into them. Either ways, we can only learn to respond to what is.

Keep on going on! You’re doing everything.

Have a happy weekend 🌺

(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.