I know I don’t look sick (whatever ‘sick’ looks like anyway) but guess what, I don’t need to look a particular way to be sick. Ten years of dealing with a life-altering chronic illness and I can now say that making others believe what I’m going through is a waste of my precious time and energy. My job is not to try and prove to the world how sick I am or obsess myself with trying to be inspirational. It is to do my best with what I have, work with my body and its limitations and most importantly, live as authentically as possible. This illness is a major part of my experience on this planet but it isn’t my entire story. #sick #invisible #invisibleillness #ehlersdanlossyndrome #hypermobility #chronicpain #chronicillness #sibo #guthealth #acceptance #reality #selfcare #selflove #embraceyourself

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when i find myself bedridden once in a while, the one thing i still struggle with is letting myself rest without guilt. i’ve come a long way in terms of allowing myself grace when my body is not doing well but when a flare continues for over a week or two, the feelings of guilt need to attended to.

what has helped me is to look at the concept of rest differently. i was subconsciously programmed to think that sleep was for losers and to work while others rested, but as my body started falling apart and resting became imperative to my health, i started seeing how resting when needed + scheduling rest days into my planner just as i would a doctor’s appointment was more like an investment.

the more i become okay with doing less, the more i could take on physically. the more i prioritised needed rest, like one needs food or shelter, the more i could focus on other priorities. try to do the math yourself and see how if you made peace with resting now, you’d recover and return to things you wish to do sooner.

p.s. i’m going for my MRI later today. it’ll confirm if there’s any new injury due to my recent fall and if medical attention is needed. if not, I’ll peacefully continue with my usual action plan of rest, recovery and rehabilitation until i’m back on my feet again.

this.❗️acknowledging pain doesn’t make you weak❗️I understand the concerns of most healthy people but I’m sick of receiving messages asking me to stay strong. Just as being busy is glorified, so is being strong. What’s with people telling people to be strong all the time? I am strong and I am in unbearable pain. How about we get more comfortable speaking about pain and suffering rather than covering what’s uncomfortable by glorifying being strong? Real strength lies in being vulnerable and reaching out. Speaking about pain makes us stronger, on our own and together. Please, also, don’t ask me to preoccupy my mind with something else or distract myself from the pain. Maybe with a fracture or a sprain, sure. And for the sake of love, don’t ask me to smile through pain. It’s not possible with the kind of pain I’m talking about today. If you’ve been following me for a while, you would know my approach to dealing with this illness — I have a more holistic and soft approach to co-existing with pain and limitations of the illness. You’d know that I am always in pain, always sublaxing a joint or the other, managing some other symptoms out of the many and yet doing my best. Distraction of any sort hasn’t helped once in ten years of living with Ehlers Danlos Syndrome. In fact, when I was in distraction mode and tried to push through, things got worse. What has helped is listening to pain; listening to the wisdom of my body. I so understand that everyone means well and I mostly don’t react to certain things people say because I see they’re trying to be nice. BUT, please, consider that there are times when people like me are experiencing excruciating pain which you simply won’t get unless you are chronically ill yourself. 💞If you don’t know what to say, try a more empathetic and compassionate approach — ask how someone’s doing, if they need any help, tell them it’s okay to take a break, tell them you’re proud of them for living with pain, tell them there is no way you can ever relate but you’re there for them. 💞 #unbearable #chronicillness #invisibleillness #pain #chronicpain #ehlersdanlossyndrome #hypermobility #dislocations #sublaxations #flareup #lowerback #spine #slippeddisc #tailbone #inflammation #patience #chronicpainawareness

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.

Roasted curried veggies with coconut milk

Roasted curried veggies with drizzled coconut milk for lunch today. There’s literally a farm in here. Roasting stuff has been helping me save some energy because I just chop everything up, dump all the spices and throw it into the oven. No more standing by the stove waiting for things to cook. Anything raw doesn’t sit well with me so salads is kind of out of question these days. I mostly make more of stir fry and roast good quality meat and veggies. Also, cooking makes me so happy and I’m realising that I enjoy creating cooking videos too! All I need is an assistant 😛 Volunteers anyone?🙋🏼‍♀️#roastedveggies #cooking #passion #vegetarian #vegan #plantbaseddiet #glutenfree #grainfree #dairyfree #quick #lunch #sibo #spoonielife

A small something

I was diagnosed with EDS type 3 in 2012, and have since been learning to live with theeillness. Before my diagnosis, I spent a good four years searching for a reason behind my deteriorating health and found no answer. Imagine being 18, three months into the course you loved, and suddenly starting to fall ill day by day. I tried everything that was “supposed” to help only to find out that it’s not a one size fits all kind of a situation. No one knew what was wrong with me and some refused to believe that someone in their late teens and early twenties could possibly be in so much pain. The struggle was real and it was beginning to affect my lifestyle. At one point, I thought I was living someone else’s life. It was devastating and unexplainably miserable. All it took was one medical professional to sit with me and really listen to my complaints and put together all my symptoms since young, which really didn’t seem out of place at that point.

After years or greiving over my old life and resisting what was coming, I finally started to work on acceptance and letting go. I could no longer run away from the fact that this was a chronic illness and the only way to move forward was to make peace with it as though it’s part of who I was, because it is. Sure, It doesn’t define who I am, but it plays a major role in every little or big decision in make in my life. It affects my energy levels, makes me put emphasis on bigger and greater things in life and hence also changes how I choose to live my life.

Things were only getting from bad to worse. The longer I held on, the more I struggled. The more everyone around me struggled, too. When I could no longer push, when my body started to scream and not just whisper, I figured it was time I made major lifestyle (my passion/activities I enjoy, the people I spent time with, my daily routine etc) and career change in order to accommodate and honour my health. And so I did.

I no longer see a point in creating suffering for myself by trying to push my body beyond its limit. It’s hard but I’ve realized that you have to make a choice every morning, to get up and do the best of your ability. Whatever your best is, is good enough. I’ve also realised the importance of staying true to your personal experience no matter what anyone says and also finding people who trust you.

Over the last few years, I’ve been working on adopting a new perspective towards my health and the choices I need to make. Firstly, I tell myself that these choices and decisions are FOR my health, not BECAUSE. Secondly, I choose to believe that I am fighting my illness by loving my body. Thirdly, I take conscious steps towards forgiving and letting go of what I thought my life “should” have been and adopt an attitude of gratitude as far as possible.

I won’t lie – living with chronic illness is tough. It complicates your life and makes you feel as if there is nothing more to life but being sick. It makes you feel like you have to climb this never-ending mountain all yourself and that no matter what you do, it’s not enough to change anything or make a real difference. It makes you think about the meaning of pain and suffering. Question your abilities and sense of self. I know the extra suffering that comes along with the physical pain.

Then again, every day is a new day and all we can do is acknowledge our pain and learn to work with it. It might require you to reassess your path every now and then and do what is in alignment with your health. That choice to work with your body while taking one little step forward towards what you love, or what frees you and makes you feel at peace is what reflects your strength and courage. It’s not your illness that defines you, it’s how your choose to live with it that does.

You have the choice to do something every day that makes you experience a small victory. And many victories put together allows you to overcome the burden of living with a life-altering illness.

Keep in mind that this ‘something’ I’m referring to doesn’t have to an incredibly big task or fit the expectation of the society in any way. It could be something as basic as getting out of the bed, holding a brush and writing a letter, doing an extra shift of your part-time job, washing your own hair, maybe cooking yourself a meal, meeting someone you love, reading a book to nurture your mind… anything that makes you feel like you’ve taken a step forward on that given day is a good enough start.

One day at a time.

One step at a time.

and, remmeber, you’re allowed to pause for as long as you need to before starting again.

Love,

MD