#butyoudontlooksick #butidontcare

Please tell me what ‘sick’ looks like✌🏼favourite spot in my new apartment: my lovely B E D ❤️ Also, till sometime last year, I couldn’t even sleep/lie-down on my tummy because my shoulders, elbows and wrists couldn’t weight bear without sublaxing or dislocating. I still can’t spend too long like that but hey, something is better than nothing!

20 years later

Experiencing the monsoon in India after a good 20 years. It’s beautiful outside. This is what I wake up to every day now and it’s been lovely. I was dreading my life here during summer just a few months back. It made managing my symptoms so much more challenging! Thankfully, it’s 22 degrees now which feels quite calming to my system. I’ve returned from Canada (strange how it felt so much like home) with so much more clarity than when I left but the question that still lingers is whether India will ever be home. I’m going to let the question rest for a bit and allow the answer to come up on its own. Despite knowing for a fact that I’m very open to giving this place a chance, I didn’t exactly feel welcomed here when I landed. I still haven’t found words to the experience on the airport but I know for sure that it was traumatic. It was trauma that I need time to recover from. At this point, I believe that creating a safe space + health routine that is grounding and supports my well-being would be a good starting point. Last couple of days were a stretch but I wanted to make sure my space is set before my recovery starts. To be very honest, the only place I find some refuge right now is in my very own apartment. It’s my sanctuary.

“Do you ever get tired of looking after your body?”

A question I often get is whether I ever get tired of looking after my body. Yes. All the time. It’s a lot of work, much like looking after a hyper active kid who wouldn’t let you rest and requires all your attention because you never know what he might knock over or set fire to. Of course it’s tiring!

Over the last few years I realised that sometimes it’s almost impossible to find a direct link between what you do and what happens to you. The right thing to do then is to do your best based on the info you have. Can you imagine the kind of questions we’d have answered by now, in the realms of chronic illnesses and life if it all worked on a very distinct cause and effect basis?

I’ve personally noticed that there could (not always) be a cumulative factor to it instead. Ten different things added together may lead to a particular favourable or unfavourable result.

For example, sticking to my daily routine in terms of self care and rest, my nightly routine, my weekly physio and pilates, all my strengthening exercises, medications, spending time in my safe and healing environment, following my specific diet, all my doctors’ appointments, not signing up for any societal obligations and exercising the power of saying NO, usually allows me to manage my health symptoms better and sometimes even do more.

Similarly, not being able to do any of the above causes my body to start de-conditioning and overtime I start to lose my day to day strength. Now, add that with significant movement from traveling and a few days of too much activity and my health starts to deteriorate. Hence why I speak of sticking to a daily routine, setting flexible goals and drawing boundaries for yourself. It can become the difference between me fighting a chronic illness versus managing one — and that’s a big deal.

Over the last ten weeks, i was somehow managing my symptoms but not doing a very good job of it. Sooner or later, my body was going to begin to de-condition. It’s happening now. After a horrific night of painsomnia and lack of sleep, I just spent the entire day curled up in bed.

I think I’ve hit my limit and all I want to do is rest. #chronicillness

Devil’s Punch Bowl

We skipped the actual hike down to the Devil’s Punch Bowl because it would’ve been just too much for my body. I’m glad I made it till the top of the bowl and was able to walk around a fair amount. I don’t remember the last time I did something like this. It’s definitely a big deal. A few years back I couldn’t have imagined being able to visit such places.

While I’m not big in traveling due to the pain that comes along with it (it doesn’t even make me sad and nor do I feel like I’m missing out because I’d rather be in less pain, suffer less and have manageable symptoms rather than travel, not be able to enjoy much and deal with unpleasant consequences later), I do love the nature and believe that it has a powerful, healing effect on me. Sometimes, I need that more than anything so I make a conscious choice to push myself a little bit in order to let me experience nature to some extent.

#ProjectCanada

💗 Proud moment 💗

This was literally the main objective of my trip to Canada.

I was in tears during the ceremony as I recollected bits and pieces of our past and the very fact that I could make it to Canada to celebrate my brother’s big day.

If you had asked me four years back about traveling to Canada (for that matter, traveling anywhere), I’d have told you it was a dream that might not come true. It fills my heart with immense gratitude thinking about everything that has gone behind making this trip possible for me.

M

The secret life

While I’m very open and honest about my personal experience with EDS Hypermobility, there is also a ‘secret life’, what I call the back end management which not only is something we (the chronically ill) often choose to not share but also something we often can’t share due to the complexity and implications of actually dealing with the illness 24/7.

Most people I know in the community of the ‘chronically ill’ live as authentically as possible and try very hard to share their stories, both to create awareness and for their personal healing and I find that truly inspiring and amazing.

That said, it’s important to keep in mind that it is NOT the whole story. It can’t be, unless you know us personally. No matter how much we try to put our experience out there, it is not the same as living with us and seeing us live — which is something only our near and dear ones get to see.

On my instagram, I try to share both the good and the bad. Whenever possible, it is as raw as it gets. But the truth is, for the number of times my shoulder (or other joints) clicks in and out, for the hours I spend in bed with ice packs and hot packs and the number of times i get palpitations, brainfogs etc., it is practically impossible to be both having the actual experience and sharing it.

I think that’s the reason why so many people who don’t know me well enough, whether biologically related or not, are under the impression that if I smile I am pain-free or I’m not struggling. And sometime, instead of asking, it is assumed that I am fine. Or better.

Similarly when I am bedridden, it is quite commonly assumed that I am sad to the core. Which again, is an assumption.

The truth is, the ‘chronically ill’ have figured a way to be smiling and struggling at the same time. I know it can get extremely confusing for the rest, but if you ever wonder how we’re doing, I suggest you ask instead of assume.