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.

07/05/17: Mandala Making Workshop

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Beautiful day. Beautiful space. Beautiful people. Beautiful artwork. Beautiful lessons.

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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.

🌷🌿🙏🏼✨


I enjoy making my mandalas as free-hand as possible. Unless I’m making it for someone or teaching a class, I don’t quite bother with guidelines too much. Once you get a hang of it, you intuitively know what to do next. Each one of us knows it and we get better with practice (honestly, I don’t think practice needs to make perfect. If practice makes better, that’s perfect in its own way). There’s barely any “planning” required if really just go with the flow. The best part about making mistakes (if that’s what you want to call them in the first place) while creating patterns is realising that you have the ability to fix them without having to go back. Without erasing or undoing. You adapt, you figure out ways to enhance what you have and work with it.

Paddle Boat 

Let me tell you a short story about yesterday.

So I left home with a friend, expecting to go to a flea market and be back home within two hours. The flea market turned out rather pathetic so we landed up in this adorable cafe and had traditional Chinese milk tea + an almond cake. Then, since I was extremely excited about finally being out (not a medical appointment for once) after my flight back from India took a toll on me, I thought I could handle a couple more hours of staying out. We decided to go this beautiful place and sit by the water and think about life.

What happened next was totally unexpected and impulsive – instead of just sitting by the water, we went on a paddle boat for an hour. At this point, I must tell you that I love water (I think it has some healing effect on me) and I’ve always enjoyed water sports as a child. Just about seven years ago, I was close to getting a kayaking license and was looking forward to kayaking to some nearby island.

Okay, back to the present – some memories came flooding in and I was surprised that none of them made me sad or upset. Past is gone for a reason and my reason here (health) is of immense value, something most chronically ill people understand. I realized that paddle boating was probably the closest I was goinh to get to any form of water sports now so why not just give it a shot?

 The seats didn’t exactly look comfortable and were clearly at an angle that’s bad for my back. The paddles too, were located at an angle not quite right for my knees but even then… I wanted to give it a shot. I trusted my friend to take over when I needed a break so we hopped onto the paddle boat and went paddling away.

Well, we had a blast. We literally blasted Bollywood songs and laughed our heads off. Unfortunately, the winds were pretty strong and the waves were kind of harsh so we needed to be towed back after our time was up. I was kind of tired anyway so I’m glad we got a quick ride back.

So today, I woke up with noticeably high pain levels and extreme tightness in my lower back. It’s a challenge to walk around the house and I had to cancel Pilates just to stay in and rest my inflamed lower body. My calves, hamstrings and glutes really did a lot of work last evening. You might think that’s good, but trust me, this isn’t your after-workout-feel-good-and-sexy kind of pain I’m talking about.

Anyway, to conclude my little story. I’m super happy that I attempted something new. Something from my past but not quite. Something more present. And, I realized that it’s something that didn’t quite work for me – which is fine because I’ve got more information about my limitations. So do I regret getting on it? Yes and no. Yes, because dude pain is never fun. And no, because a part of me would’ve continuously longed for that experience and the sheer possibility of it perhaps not hurting me would’ve bothered the shit out of me.

Now I know better and next time, I’m taking one more person along with me so I can rest and the other two can paddle. Royal treatment? Sure, that’s better than being royally screwed (by pain) later.

Love,

Manasi