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

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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.

Line

I wonder why things have to be so extreme out here.

Either people help you or they don’t give a shit. Either you’re expected to need help all the time or not need any. If you ask for help too much, you’re considered helpless. If you don’t need help (they want to help) and you say, “No, thank you!”– that’s rude.

If you expect people to look out for you, you get no say as to what’s okay and what’s not. You don’t get to draw a line and drawing that line is so necessary! People hover over you day in day out as if you’re in need supervision when all you need is perhaps for them to check on you once in a while. If you tell them you need space, they take it personally as if it’s all about them when it’s more about your personal space and what helps you heal.

I’ve noticed that out here, you are forever expected to entertain and be entertained when all we need sometimes is some quiet time and letting each other be. I fail to understand how a group of people can start chattering away at the crack of dawn and continue chattering away throughout the day, only taking breaks to use the loo and shower, and perhaps to sleep.

I see how there could be some positives to spending time together and doing things together — I mean, I love it too! Cooking and dining together, sitting around and catching up, playing games as a group… all that is great for bonding! What is beyond my understanding is how people don’t need pockets of their quiet, personal time to tend to themselves.

(I mean, sure, we all function differently and by no means am I saying it has to be just one way or the other, but let’s just say, it’s absolutely hard for me to relate to. Just like my illness and my lifestyle is hard for others to relate to.)

It’s such a misconception that tending to yourself means you’re selfish.

Self-care is neccessary.

When you learn to tend to yourself, you are able to be at your best self for others. When you learn to give to yourself first, you learn to give wholeheartedly to others. It’s through learning to set healthy boundaries for yourself that you learn to respect those of others. It’s through sharing quiet moments with yourself that you can truly share time with others. From my understanding, for us to forge deeper relationships with those around us, we must begin with forging a deep relationship with our ‘self’ first. And maybe this concept is too foreign for some parts of the world but personally, it has made the greatest impact in my life and how I’ve come to terms with my illness. The journey of self acceptance has a lot to do with self-care. And self-care has a lot to do with drawing a line.

If there is anything that I truly wish for, it is for our culture to introduce concepts like self-care and healthy boundaries from a young age. Imagine how far we’d come.

-M

Not quite home

An old post which was left unpublished for a while

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This place still reminds me of pain and suffering. A pain that held me back for years and has taken me years to let go.

This place isn’t quite home. It never felt like home and I’m not afraid to say so anymore.

This place was more of a refuge from another place claiming to be home but all it did was caused more suffering.

I searched everywhere for a place I’d want to come back to and only found places I wanted to run away from. Farther and father, every year.

Soon I realised I had to create a home for myself and that this process had to begin from within. That safe space I so terribly craved and needed had to be created with love, first towards myself.

I had to learn to be my own pillar of support and for that I had to unlearn the idea of constantly supporting and accommodating for everyone else.

To create a home for myself, I  had to first be willing to accept my story; one that is way more than what I speak about.

Today, I am thankful to have a safe space for myself. A sanctuary of my own where I get to take care of myself mentally, physically, emotionally and spiritually.

A space that allows me to hear my own voice and follow my heart. A space where my creativity runs wild. A space where I get to build new relationships and tend to those that matter. A space that protects me because I have learned to protect it with healthy boundaries.

I am thankful to have found silence. That stillness, which some would run away from because it’s just too much to handle. I am so thankful to have realised that once you do truly come home, there is never any need to seek it else where.

And if ever I need to rebuild a home for myself all over again, I know exactly where to start.

-not quite home

So I’m sitting in my living room listening to mantras, my palo santo burning near my bookshelf, and i suddenly realize how quiet my entire apartment is. Everything is quiet. I’m in a noisy country but at this very point in time it’s all so quiet around me. I love this. I crave for this so much. This quietness is something I want and need to live this life to my very best.

There’s been far too much movement in my life lately (or should I say, all my life) that these moments of stillness is what brings me a sense of stability and peace. It allows me to connect with myself, which has been a little hard lately considering how terribly off track I am in terms of my daily routine and rituals that help me stay sane and manage my health. I can’t possibly stress enough how much a routine and some personal rituals have helped me to get here.

As the unpacking ends and the actual settling in begins, it looks like I can finally let go a little, slow down and focus a lot more on my health.

For the last eight months or so, my health took a backseat as I simply had to get through this move. I’ve been feeling sort of out of my element, you know, kind of scattered and all I know is that it’s not where I like to be. Despite dealing with a lot more health issues throughout 2017, I’ve had to push myself and make things happen. My thought was, the quicker I got things done, the quicker I got to rest. And now that my sanctuary has come alive to quite some extent, it’s time to prioritise health and self-care and work towards my next goal. More on that later.

Okay, I’m going to keep my phone away now and get back to sitting still. To listening to my heart beat. To watching those crazy thoughts come and go. To noticing pain.

To being thankful for being here.

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I’ve been practicing setting healthy boundaries for over three years now. Initially, it used to feel scary, the thought of setting boundaries even with your loved ones or those you once loved but over time, I realised that it is okay to feel terrible about it and yet want to draw a line between yourself and anyone else.

It is important to protect your space; both internally and externally. That fear, that terrible feeling which sometimes feels like guilt is usually temporary and when you do in fact start seeing some positive shifts and change from learning to set healthy boundaries, that temporary feeling does disappear. Soon, you experience a very light, freeing feeling. I know this for sure.

I found peace in knowing that I’m doing what I’m doing for my the sake of my well-being and it always seemed worth it.

Setting healthy boundaries in your close and distant relationships is an integral part of self-care. It does not mean that you don’t tend to others. It means that you learn to tend to yourself first. Shifting your focus and attention towards what or who really matter frees up space and energy which can definitely be directed towards other greater things. There were many times in my life when events and situations around me made me feel helpless, as if there was no form of separation between me and others. I found that I was running low on energy for myself and that it was affecting my entire being.

It took me years to learn to set healthy boundaries and say ‘no’, firmly and politely where necessary.

Sometimes I catch myself slipping off my practice as well but I’m quicker to find my space and bring myself to stand my ground. You are allowed to go to any extent to ensure that your peace, solitude and sanity are well taken care of.

You can be kind and assertive at the same time 💗Say no when that’s exactly what you want to say. Also, ask yourself who you’d like to explain yourself to and who you can do without having to.

Seek

Throwback to when I could still swim and position my arms a little more comfortably than right now. And now even though I end up walking in the pool or swimming with every move calculated and rehearsed thrice in my mind, I still find some peace being in the water. There’s something absolutely healing about water and I can’t find words to describe it. Leaving behind swimming 15-20 laps a day was hard because swimming was my escape or meditation (and it kept me physically fit enough) I thought, until I couldn’t escape anymore. Until I couldn’t run away from home, from a space I could barely breathe or be alone in, to really listen to my heart beat and know I was still alive. Until  my body forced me to stay in bed and find a way to deal with reality, with love and compassion for myself first.

Again, it doesn’t hurt so much anymore so I can actually share these things with you. In fact, this is so freeing, realising that I’ve learnt to let go of things I tried holding on to for a very long time, almost hoping they’d come back and fit together into this picture-perfect life; things that I thought made me who I was. Perhaps the way it happened wasn’t the best but I’m grateful to have realised very early in my life what truly matters. What I was never wrong about was that I was constantly seeking peace and a reason to be happy and activities like dance and swimming kind of gave me a taste of both.

Today, I am thankful my experiences have taught me that true source of peace and happiness, the kind of peace and happiness that makes you really glow, is within us. I can be in bed and in pain and still be at peace, still be somewhat happy knowing what I  now know for sure. Getting here took equal parts faith (in my body and something bigger) and conscious actions (because even when you think you don’t have control, you still have a choice to remain stuck or take the next best step), and maybe a dash of sparkles. ✨