Most people think that people like me who spend a lot of time at home are in need of hobbies or distractions of some sort. You know, something that can take our focus off our pain and suffering.
After ten years of dealing with Ehlers-danlos Syndrome Hypermobility Type, I can tell you this — while you can’t get your focus off pain entirely even for a fraction of a second, you can learn to acknowledge its existence, know that it’s going to be there with you and still find ways to work with and around it.
People like me who have had to leave a full-time job and figure out new ways to become financially independent (whether fully or partially), will once every while come across someone who tells us to distract ourselves from our experience or find hobbies since we have nothing else to do (according to some). The thing is, not all of us are looking for distractions or hobbies.
Whatever you see me doing outside of my health routine are things I WANT to do for reasons you may not always know. There is usually a detailed thought-process behind things I choose to do or not do.
I am currently completing a life coaching certification not because I am desperately in need of a hobby but because it’s been a personal and professional goal for me. It is something that calls for my strengths and aligns with my purpose. I want to be able to extend support while trying to support myself. I’ve always wanted to do it with the intention of setting up a business, one which doesn’t jeopardize my progress and allows me to work from home or bed for that matter. It might take time but that’s okay with me. I’m not doing it because I have nothing better to do. I’m doing it because I WANT to do it.
I taught classes throughout last year because working with people, helping them channel their creative energy, creating a space where people from all walks of life come together and open up is what I wanted to do. It was catching up big time and just then we decided to move countries. For me, conducting group classes centred in creativity and healing was a step in the right direction. Something that now makes me feel prepared to be a coach. I didn’t do it because I needed a distraction. I did it because it felt right. And just like most people my age, I wanted to be able to at least partially pay for myself.
I write (and share) because I believe writing is healing. I write with the hope of building a connection and community. Again, not because I need distraction.
I cook because I’ve always been passionate about cooking for myself and people. It’s basically a way for me to express my creativity, apart from other art forms. Considering that I’ve had to leave dance and my career in design behind, cooking and making food look good keeps my creative energy running. I’ve had to train myself in the kitchen from scratch after not being able to prepare a cup of tea for myself at one point. I don’t cook for distraction.
I volunteered with kids from troubled childhood because, given my personal experience, I’ve always had a soft spot for kids and believe so much in ensuring that children receive love, the right kind of support and opportunities for growth. I didn’t do it because I needed to pass my time.
It’s so easy for people to assume that if we’re at home, we’re bored or lonely or missing out. Sure, not all days are great but that’s the case for anyone else too. Personally, though, I’m not bored or lonely, and I rarely experience the fear of missing out (fomo). Yes, there are limitations and sometimes it sucks but on most days, I’m happy, grateful and at peace with where I’m at. More so because I know where I’ve come from. Honestly, I’ve probably never been better and I say this despite having lived pain-free at one point. I love being at home, prioritising my health, stepping out when I feel like it, going to places that feel right, hanging out with people I love, doing things that make me happy and finding joy in little things. I, for one, don’t need any form of distraction.
Distraction is yet to prove itself to me. It has never worked. In fact, when I tried to distract myself from reality, things got worse. What you resist, persists. When I pushed myself, tried to act “normal”, I suffered more – mentally and physically. My health deteriorated at a very rapid pace. It took a lot of self-hate, pushing beyond my limit and attempting to distract myself from reality for me to finally press PAUSE, look at my priories and figure out a new way of living. Coming face to face with my reality, every raw bit of it, is what got me where I am today.
Point being, don’t suggest distraction as a coping mechanism unless we clearly say that’s what we’re looking for.
Trust us when we say we’re trying our best to create a different life. Who said different = bad anyway?
Support us because you believe in what we’re doing rather than from a space of sympathy or pity. Show us that you see past our illness. Tell us that you think we’re capable of embracing the illness AND following our dreams at the same time. Ask us if we need help in getting there.
Spending the next few days and possibly even the rest of the week in bed. I tried to push through last week, hoping the tightness and spasms in my lower back and sacrum subsided but unfortunately, there has been no progress. Strengthening is on hold for the time being and we’re trying IFT + manual work on my lower back during physiotherapy.
About six days ago, i fell right on my bum while taking a photo of a friend and since then, my already triggered lower back pain got much worse. Having a sublaxed tailbone and two slipped discs makes pain unbearable sometimes. Add injury or impact of any sort and that takes it to another level. My reaction was to get more physiotherapy done, tend to it using all my pain management techniques and increase my dose of analgesics and anti-inflammatories.
Yesterday, however, just as I was trying to get out of bed, I realised I couldn’t possibly let this continue. I had to finally pause and listen to my body. I need to provide it with a conducive environment to heal and recover. I now need to allow it time and give myself permission to rest without guilt. Starting today, I’m going to do just that. I’ll work on my coaching coursework and do what is possible from my bed, pacing and resting when necessary. It’s time to give it time.
this is a photo from last year when I stepped out of my apartment for the first time after being bedridden for seven months. Apart from the trips i made to the hospital for tests and appointments, i was completely bedbound due to a massive lower back flare which caused excruciating pain and muscle spasms in my entire lower body. i was also undergoing a treatment for #sibo, following a highly restrictive diet which was helping my physical symptoms and also changing my relationship with food for the first time. With support from my close friends and a couple of family members, i somehow survived those seven months in my own apartment, walking not more than 200 something steps per day. i think i’ve dealt with times worse than that and have come out a little wiser and stronger each time in my entire life. Despite spending countless nights in pain and doubt of whether i’d get out of bed the next day, i’m still here today. Not ‘fixed’ or magically cured. Just doing my best and allowing myself some rest. And so are you. And I promise, if you’ve come this far, you can go even farther.
So I was busy decluttering my to-be home office, discarding the old and making space for the new. It’s a ritual that I take seriously because it allows me to work with my feelings about the things I own, my past, present and future.
Determined to pull an all-nighter according to Canadian time so that I can peacefully fall asleep at night, I decided to play a list of fast Bollywood songs which is specifically created to lift my spirit up from time to time. I thought it was helping me stay up and get work done.
Just then, this one song plays and I’m like nahhhh, everything can wait. Everything must wait. I need to do this.
Think about it for a moment:
With the dark cloud of chronic illness constantly hovering above us, what can we do to lift our spirits?
What sparks true joy within us?
Could we be letting our disability confine us more than it needs to?
Can we not find ways to work within our limits and still experience similar feelings of passion?
I think we can.
We’re all different, with different illnesses, different degrees of severity, different scale of limitations, different support systems, different biographies which could very well translate into a drastically different experience altogether — there’s absolutely no reason for us to even make that comparison. All said and done, each of us is doing our best to work with the cards we’ve been dealt.
BUT. In the midst of the pain and suffering, I think it’s possible to find ways to work with or around things we truly enjoy. I can’t dance like before, nor can I move with as much energy, but I do know for a fact that when I’m on my roller chair and if symptoms are manageable for the day, I might be able to move a little and FEEL that same feeling I experienced when I danced in the past. I do have to be careful though but I’ve reached a conclusion that you can’t take dance out of me.
It makes me feel alive and so I do it very often :) I hope you enjoy my crazy and find something that makes you feel a tad bit crazy too.
Lots of love,
#onceadanceralwaysadancer #bollywood #dance #passion #love #joy #wholehearted #chronicillness #pain #fatigue #suffering #smile #invisibleillness #ehlersdanlossyndrome
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!
Do the work + give it time ✨
You know you’ve come a long way when you can actually throwback to a beautiful photo from *by far the weakest* (mentally, emotionally, physically and spiritually) time of your life without hurting like before. Thank you for sticking by my side through all these years, @rohant! 💗
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