At times I think I could do with 2 grande sized flat white a day.

Then I realize, who am I kidding? I’d be flat in my bed with palpitations if I tried that. That’s a grande Mocha for me and a Caramel Hot Chocolate for a friend.

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A perfect gift from my ex-physiotherapist. Serves as a reminder — do what you can, with what you have today. Seven years later, I still forget that I can’t take life at the same speed as everyone else. I need to take it one ‘sip’ at a time and that’s alright. It’s your personal progress that counts and progress looks different for each of us.

#notsoinvisibleillness

When reality hits you in the most unexpected moment, 

Look. 

Feel. 

Don’t distract. 

Look again. 

Feel again. 

Breathe. 

Let go. 

Breathe again. 

Let go. Again. 

Breathe once again.

Let go. Once again. 

Everything is okay in this very moment. 

You are okay. 

Had a terrible experience at the hospital today – I had to wait for some 4 hours to complete a breath test, which required me to blow into a bag every one hour. I knew the procedure but little did I know that they won’t have a place for you to rest while you wait.

Perhaps next time I’ll have to ask in more detail, though I really thought that the full test will be carried out more professionally. I can’t be waiting around at the hospital, just sitting on a couch that looks comfortable to everyone else. When your spine is causing you pain which makes you wonder how you’re even alive (I know, doesn’t show on my face or the last few photos I posted) and you don’t get a place to just lie down, you want to cry. The thought of lying down on the floor did cross my mind a couple of times. The only reason I dumped that idea was because I would’ve had a difficult time standing right up again. If I can’t sit, walk for too long or stand much and I just need to lie down, are you seriously telling me that you don’t have a bed for me?

The only option I was given was to pay $50/hour for a bed at the A&E.

Thankfully, I am done with it and I’m back home resting in my own bed. I’m looking forward to my Physiotherapy session later – I don’t think I need anything more than that at this point in my life. The last thing I want is for today’s experience to get me bedbound again for more days to come. It’s time to rest up, recover and try to get back on my feet again by this evening. So glad that I had the energy to get through last night with my friends – couldn’t have asked for a better evening 🙏🏼✨

Lots of love,

MD

GBM My Style

It’s Ganesh Chaturthi today, the birth day of Lord Ganesh and basically …

I don’t know enough about it (but Google does!).

(Oops.)

However.

What I do know FOR SURE is this –

🔸This day always fills me up with excitement each time

🔸It’s an occasion that used to bring my entire family together and I’ve got some incredible memories of this festival

🔸I am aware of the basic rituals – a little prayer that you do, certain dishes you prepare (I’m not sure why you make each), general overview of the days you celebrate (5,7 or 11 days I think) it.

🔸It is a great opportunity to dress up

🔸I miss my brother

P.S. Whatever you’re reading right now is being typed as I get ready

I wouldn’t call myself particularly religious; definitely not like my parents or family. I think I am “religious” about things that work for me and I believe in them. I’ve always been given the freedom to have my own belief system and hence I am fine with everyone else choosing what works for them – whatever helps one feel happy and peaceful from deep within + helps him/her get through the hardships of life. You might have guessed  by now that religion is really not one of my favourite topics.

Having said all of the above, here’s how I’m doing it –

I’ve set up my altar, with a beautiful statue of Lord Ganesha resting on coral beads. I haven’t specifically decorated my altar because my alter is rather personal and symbolic in itself. Every little thing on it is there for a reason. All I did was just cleaned it up, added some fresh flowers, lit some candles and rose incense sticks – that’s it.

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Beautiful coral beads

I’ve invited a couple of really close friends over to my house. We’ll sing along one or two devotional songs (okay okay, I do know the lyrics of some. It happens when your family has been singing it for years you know?) and have a mini dinner, which we’ll probably call for. My dinner is going to look rather different from their’s as I’ve got a SIBO test on the very next day. More on that next time.

Oh, here’s an important bit. We’ve decided to dress up too because HEY!! We don’t get a chance otherwise! Who gets a chance to wear a nath these days anyway?! Nath, by the way, is a Maharashtrian style nose ring and I’ve been dyingggg to wear mine (I don’t get a chance to wear it these days anymore since I don’t perform much). I can’t wait for my friends to show up now!

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It took me approximately 2 hours including 4 ice-pack breaks to look like I do here

As prashad, we’re having (my friends) some dark chocolate (instead of these sweet rice dumpling kind of a thing called ‘modak’) and I believe Ganesh ji is going to like my modern twist to his birthday celebration.

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How about a ‘modak’ shaped oversized Hershey’s Kisses?

I also plan to FaceTime my family and my close friends later in the evening. Everyone’s all over the world this time so I’m freaking thankful for FaceTime. I’m beyond grateful for a small set of close friends I have today – they’ve done so much for me up till date. Sometimes they willingly become my extra pair of hands, helping me with things I simply have no physical ability to do. Other times, they patiently sit next to me (they get me dark chocolate quite often) while I just lay down in pain. I can’t thank the Universe enough for a bunch of loving people around me.

Let’s see… I think that’s it. That’s really it. That’s my version of a mini Ganesh Chaturthi celebration in my sweet little apartment. We’ve got Ganesh ji + positive vibes +  food + friends + a grateful heart + good clothes + technology to keep in touch with the rest of the world – what else can anyone ask for?

This photo was added later

By the way, in case you’re wondering,GBM stands for ‘Ganpati Bappa Morya’, which supposedly means ‘Lord Ganesh Bless’. For me, it’s something you happily and enthusiastically yell out a number of times through the course of this festival.

Happy Lord Ganesha’s Birthday everyone! *Yell GBM now*

Pocari 

You don’t really need to sweat to need Pocari sweat. For some of us, just living and dealing with a body that is different needs a lot more energy than one could imagine.

In some ways, we’re always hiking up mental and emotional mountains, taking on non-existent physical marathons or triathlons  and working out ways to manage limitations. Every bit our existence requires tremendous effort to simply not fall apart.

If I were to try and put it in other words, living with an illness like HMS/EDS feels like you’re doing a full-time job seven days a week 24 hours a day or babysitting a child (which is nothing but your own body) every minute of your life (okay, you don’t get a proper rest either) Now imagine  having to do either + experience debilitating pain.

Anyone could do with more isotonic drinks after that. I usually opt for coconut water, Pocari sweat or 100 Plus Edge. Coconut water is always my first choice, unless I just want a change. 

P.S. Holding up a 2L bottle was a bad bad bad idea. Please do not even try if you’ve got a wobbly wrist because I do and I messed up.