“distract yourself or find a hobby”

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. 

Love,

M

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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.

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

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.