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?

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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

Sometimes I wonder if there’s any limit to the pain I experience. Then I suddenly remember that there is only limit to the suffering around the pain and the limit is my mind. The pain is in my body. The suffering is in my mind. Everyday I wake up and choose to lessen my suffering instead of only trying to rid my body of pain which I know has reasons; of which some are beyond my understanding. Thankful to be here today, despite all the different kinds of pain in all the different joints and partly unexplained pain that we are currently investigating again. Happy weekend!

💕

Look back…

If you ever forget how strong you are, pause for a moment and look back – look at all the times you fell and stood up, not just stronger but courageous enough to try over and over again. Look back at the times you could have shut yourself to love and pain, and built a wall around your heart, but you chose to remain soft and let light in anyway. Look at the times you showed up; for people and yourself. Your story makes only a part of you, and the lessons your learn and how you evolve, make up the rest of you. Ask yourself, “how has my story changed me for the better?” If ever you doubt your strength, your ability to love, your discernment and authenticity to walk your own path, look back… look back and see how far you’ve come. It’ll make it easier to continue moving ahead if you realise how unstoppable you’ve been up till now.

 

 

#strength #soft #courage #grow #love #acceptance #life #chronicillness #relationships #chronicillnesswarrior #ehlersdanlossyndrome #hypermobility #friendship #pain #suffering #family #illness #rare #light #journey #pause #unstoppable #keepgoing #faith #trust

#2013

It’s been four years since this photo and yet I get goosebumps just thinking about where I was at, both physically and mentally.

I was falling #sick with a cold or a stomach flu every other week, reacting to medicines which were supposed to help, afraid to be alone in my own bedroom, finding it hard to eat, needing help to wash my hair and sometimes even to brush my teeth, hating on my body for being fragile and weak, struggling to protect myself from people, fighting with school because they had no policies in place for people with medical issues, crying myself to bed every night, falling asleep with a strange emptiness in my #heart, waking up to feeling suffocated, hating on my creativity because I couldn’t pursue it the way I wanted to, feeling like every day was an absolute drag… I was claustrophobic in my own #body and #mind.

I wonder if this photo says any of that.

2013 was the year I knew I was done with everyone and everything around, including myself. Something needed to shift and I didn’t know what or how. All I knew was that life couldn’t possibly feel the way it did. Despite feeling like a hostage to my own #existence, there was a glimmer of #hope, a constant knowing that nothing was going to change until I decided to step up to where #life was heading. Stepping up at that point meant pausing and for once allowing myself to let it all sink in. Nothing was going to be anything like I had once imagined and I had to come to terms with that. I couldn’t distract or push myself anymore and I felt horrible. Who thinks about pausing/stopping at 23, right?

The thing is, some of us reach a point in our lives when we are faced with circumstances so real we simply can’t look away from them. Greater things are at play and our personal plans and effort make no sense. Life keeps finding ways to force us to look at what’s being presented and leaves us with two choices – to keep #suffering by avoiding pain OR to acknowledge pain and learn to #rise from there. #trust #acceptance #health #mentalhealth #pause #rest #recover

Looking back, I suppose there were things I had in 2013 which lead me to be where I’m at today. The daily struggle and fight have definitely added to all that I have become as a person and in some ways I’m grateful for it (not for the fight but for what came out of it). Of course, gratitude seemed like the last thing on my mind at that point in time because I was in this terribly dark space. Practicing and expressing gratitude, learning to accept whole and broken parts of me and making choices that honour my health (both mental + physical) has taken time and conscious work. I still have rough days but I’ve made peace with the fact that harder days are part and parcel of learning to live with a chronic illness. Today, I know better than ever before that while life is capable of giving you 5 reasons to fear, hate, complain, it will give you at least three reasons to trust, love and grow.