Only 4 more slots available! ❤️
Only 4 more slots available! ❤️
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
D I G I T A L D E T O X – With my classes and workshops starting again this year, I haven’t had a chance to go on my usual monthly digital detox for a while now. However, it looks like the time has come! I’m in a desperate need to disconnect from the world for a while and do things that help me build up on my energy levels. My health hasn’t been all that great lately and all of a sudden I have a tonne of other things to juggle and deal with. I’m predicting next few months will be rather fast-paced for me, which means I need to make sure I give myself more time and care so that my body doesn’t experience some kind of a shock. So there’s my brain trying to think of the quickest and most effective way to get things done, bringing out the old workaholic and control-freak in me and here’s my body doing its thing, being wise and reminding me to go slow. When I work at the speed of my mind, my body suffers for sure and life gets really R E A L L Y hard. When I allow my body lead and let my mind do the supporting role, things seem to work a little more in harmony which in turn keeps my spirit going. Up until today, each time life got too fast-paced (which gives me a bit of a high), learning to mindfully slow down and squeezing out some time for myself is what helped me tremendously. Mindlessly going with the flow has never worked in my case.
I’ll be right back!
Sending everyone lots of love and spoons,
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.
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.
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.
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 💗
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! ❤️
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.
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.
Beautiful day. Beautiful space. Beautiful people. Beautiful artwork. Beautiful lessons.
Here’s me setting up everything, one pen at a time. And check out my wobbly left shoulder holding on to its dear life. 🌷
I had such a wonderful time teaching the Mandala Making Workshop last weekend. Somehow, those two hours made me feel more alive than anything else has in more than half a year now. The most beautiful thing about the experience was the very fact that it brought people from different walks of life together, for one shared purpose: to give a break to their busy minds and let their creativity run wild.
We had a retiree who was looking for ways to keep her mind active, a yoga teacher exploring ways for self-expression, a mandarin language teacher who had forgotten that she can create, a computer engineer who needed her calculating brain to quieten for once… none of them had ANY background in mandalas or pattern-making, hadn’t done much research and yet they were there because it seemed right…I mean, isn’t this just WOW?!
Even though it is not uncommon, I am still so amazed at how the whole process shifted something for some of the participants. For me, being there and seeing that in itself was such a deeply moving experience. To be honest, I’m still letting it all sink in. Everything from the place, to people and to the tea we had seemed right. I don’t think I could have asked to be anywhere else on that Sunday morning but there, teaching, sharing and learning. I’m fatigued out of my mind and yet so full in my heart. Let’s see how long it takes for me to recover from all of it physically but I know I’ll be okay and I’ll do this again when it’s time. My body needs rest now. Conducting a workshop after half a year of being 90% bedridden is a big step ahead for me. And it didn’t just happen overnight… this big step comprised of many, many small steps over the last so many months and years…
One day at a time
One step at a time.