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How do you define work?

https://themighty.com/2018/02/unable-to-work-because-of-illness/

Every bit of this resonates with me.

It’s a constant struggle for people like me to remember our worth when there is so much stigma around being sick (especially young and sick) and not being able to work.

It often makes me wonder, how do you define work anyway?

Does work = I bring money to the table every single time? does my voluntary work with kids with troubled childhood which doesn’t earn me anything but makes me feel valuable and like I’m making some difference count as work? Does me trying to help an individual who is newly chronically ill/struggling with their health mean anything in the society at all?

What about the times I teach classes hoping they help those who participate — does that count as work even if it’s not always sustainable? What about the job I did as a receptionist at a pilates studio hoping I’d be able to stick with it and then got bedridden — does that count at all? Is that seen?

Does it matter that people like myself at one point had great aspirations and goals too and had to leave those behind, grieve our old selves and learn to accept what we’re presented with? Does anyone ever see the pain and the courage behind having to leave what brings most of us financial stability and freedom in order to prioritise health?

What about the work you put in day in day out to look after a faulty body? Imagine having to look after an extremely mischievous and sick child who doesn’t listen to you for twenty four seven. No break whatsoever. Not even when you sleep.

It’s easy for people to ask, “what do you do?” because it’s the most common way to start a conversation. It’s also very understandable and I have a standard answer ready. But you won’t believe the number of people I’ve come across up till now with the mindset that if you’re not working, traveling and or working out, you’re probably doing nothing. Or not doing enough of something. Or aren’t ambitious enough. Have no goals. Have nothing figured out.

What makes so many people think that those who’re sick are lazy or not ambitious enough? Couldn’t our ambitions and priorities have changed? Can we not bring empathy, compassion and kindness to the table instead of money? Is it not possible for us to do our part in some other way? Can we not be the people you turn to when things aren’t going right? Can we not support the family and household in other ways?

Or how about this: is it not possible that by us doing our self-work and learning to accept and tend to our illness allows us to manage the illness a little better and hence take some load and burden off those who are trying to support us? Isn’t that work too?

20 degrees and sunny and loving it. Yes, yes, I know. There will be snow, my joints will hurt, winter gets depressing blah and blah and blah. Sure, but what matters right now is that I’m here today and that at one point, I didn’t think it was possible.

This place is making me dig deeper, unravel yet another level and is sort of making me feel lost in a guided way. It’s not the kind of lost that makes you feel afraid. It’s quite the opposite. I’ve been waking up every morning to a renewed sense of curiosity which is nice and refreshing.

I’m looking at things around me, some familiar some not. But I’m seeing them differently. Maybe I needed this. A break, an opportunity to put other things aside for once and be, even if it’s for a while.

I’m not talking about a break from being sick. No, that doesn’t happen. I’m referring to a shift in focus. Not distraction. But to zoom out and see the bigger picture one more time. From constantly *having* to figure out and find solutions quickly (this year is my 10th year of being sick, 6th since diagnosis) to allowing myself some grace.

From being bedridden for 6 months last year to starting to teach again to having to stop again to moving to India to figuring out a million and one things in a new environment (new societal and cultural norms) to adrenaline fatigue and flares of different symptoms, I just haven’t gotten a chance to truly take a long enough pause and realign myself.

And for this reason, it’s quite likely that Canada will hold a special place in my heart. ❤️

#thankyou #canada #2018 #chronicillness

A mandatory selfie to capture the memory of being out in 9 degrees (felt like 6?), under the sun, on my own, at 7:30am, in my gym pants, with a strange sense of comfort, no sensory overload, and of finally… FINALLY being in my own body, focused on every step because nothing else around me requires too much of my attention.

I walked around 1.2km, got us coffee, sat on a bench in peace, listening to the birds and felt a sense of calm in my heart. It was the feeling you get when you feel at home, a sense of safety and comfort, even though a place is new. And then my eyes filled up at the thought of how much I missed this.

A sense of quiet and stillness makes me feel at home… and lately it’s been far from that.

Thankful to be here today despite all the not so nice things in life.

Medicine inventory

These are just my daily medications and supplements. These are things that keep me functioning; help me get out of bed, to say the least.

Then there’s another bunch of medications which are basically for emergency + other symptoms management medicines and I carry them in a pouch all the time.

Every couple of months and especially before I go on a holiday, I go through the inventory, calculate, order and make sure I don’t go days without a certain tablet. EDS is a multisystemic disorder which means there is more than just the joints to take care of and there are also more medicines.

Sometimes, because of a brainfog or something, I miscalculate or under plan and end up with really harsh consequences which are basically like withdrawal symptoms. It’s like my body goes into a shock and reacts with palpitations, low blood pressure, nausea, extra fatigue and what not— just not worth it.

I admit, dealing with EDS often feels like a full-time job or like looking after a very sickly child. It requires you to tend to it with a lot of courage and love, every single day. The more pain you experience, the more love you need to find within yourself. It’s a lot of conscious work, finding that love and befriending your body despite all the reasons you have to hate it.

Stocking up my little pharmacy and handling my prescriptions used to get quite stressful at one point. Today, however, it has become a practice; a part and parcel of life. The thing about EDS is that it is as predictable as it is unpredictable and there’s only so much one can do. All the ifs and buts need to be taken into consideration because quite honestly, you never know what comes next.

Over the years, as I slowly came to terms with the complex nature of this illness and its implications on my lifestyle, I’ve also become more patient in responding to its complexity. If I need to depend on certain medications and supplements to live at my best, then I need to embrace the situation for what it is.

💗