“Do you ever get tired of looking after your body?”

A question I often get is whether I ever get tired of looking after my body. Yes. All the time. It’s a lot of work, much like looking after a hyper active kid who wouldn’t let you rest and requires all your attention because you never know what he might knock over or set fire to. Of course it’s tiring!

Over the last few years I realised that sometimes it’s almost impossible to find a direct link between what you do and what happens to you. The right thing to do then is to do your best based on the info you have. Can you imagine the kind of questions we’d have answered by now, in the realms of chronic illnesses and life if it all worked on a very distinct cause and effect basis?

I’ve personally noticed that there could (not always) be a cumulative factor to it instead. Ten different things added together may lead to a particular favourable or unfavourable result.

For example, sticking to my daily routine in terms of self care and rest, my nightly routine, my weekly physio and pilates, all my strengthening exercises, medications, spending time in my safe and healing environment, following my specific diet, all my doctors’ appointments, not signing up for any societal obligations and exercising the power of saying NO, usually allows me to manage my health symptoms better and sometimes even do more.

Similarly, not being able to do any of the above causes my body to start de-conditioning and overtime I start to lose my day to day strength. Now, add that with significant movement from traveling and a few days of too much activity and my health starts to deteriorate. Hence why I speak of sticking to a daily routine, setting flexible goals and drawing boundaries for yourself. It can become the difference between me fighting a chronic illness versus managing one — and that’s a big deal.

Over the last ten weeks, i was somehow managing my symptoms but not doing a very good job of it. Sooner or later, my body was going to begin to de-condition. It’s happening now. After a horrific night of painsomnia and lack of sleep, I just spent the entire day curled up in bed.

I think I’ve hit my limit and all I want to do is rest. #chronicillness

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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

Wake up tomorrow, look around, say a word of thank you for the things you have. Take a deep breath, close your eyes and say thank you for people who are still in your life; for those who have showed up for you. Walk to your mirror and say thank you to the person you see. Make a promise to yourself that you won’t settle for any less than what you need. It doesn’t matter who says what. It doesn’t matter who “settles down” at what age, or achieves what when you know you’ve chosen a different path, one that is least followed, understood and accepted. Look inwards, for you know what is best for you. Look inwards, for you’re filled with love you’ve tired to find outside. Look inwards, for you’ve once given away too much love that you now owe to yourself. Look inwards first, always.

#inwards #settle #society #selflove #selfcare #love #path #home #friends #family #thankyou #gratitude #valentinesday #celebratelove

I haven’t been updating my Instagram or blog much lately and I don’t feel great about it because I really haven’t been writing much. Writing, for me, has been healing. I generally write a lot, whether or not I share my writings with anyone, but I do need that time and space to just be with myself.

Unfortunately, I haven’t been able to sit with a pen and paper in my quiet sanctuary where I pour my heart and soul out onto the paper. I know for sure that as my safe space starts to come together, and as my self-care routine becomes my primary focus once again, I will spend more time writing and sharing again too.

In the last two weeks, my ability to respond appropriately to my surrounding dropped drastically. It only makes sense, given that I have been dealing with too much at once. After sitting with this thought for a while, I realised that responses were coming from a place of fear and a sense of instability.

In 2017, I was once again required to make a hard choice for (not because) the sake of my health. Nonetheless, it seemed like the right thing to do and I’ve been okay with it. However, the physical of transition became so real in the last two weeks, it started taking a toll on me. I’ve been desperately trying to put things in place quickly so that I can finally let my body rest. The fear of what would happen if this transition caused my health to deteriorate even further worried me to an extent which reflected in how I responded to things around me.

I keep reminding myself that one of my strengths is and has been in my ability to adapt to the most challenging of circumstances.Unfortunately, though, I do have a tendency to be a little harsh and less compassionate with myself. Possibly a pattern from the past.

The truth is, it is extremely natural to freak out when things are moving too fast around us. This is how I see it: Transition = change = temporary instability = temporary disruption of routine = an opportunity to create a new, more present one = ability to transform & grow.

Over next couple of weeks, my goal is to allow myself the time and space to adjust. There is no need to figure out ten things at once. Some things may require my energy and others will sort themselves out.✨

Latest update

Last few days have been so ridiculously exhausting. I spent most part of my birthday and Diwali week just running around hospitals, popping strong anti-inflammatory tablets and muscle relaxants and getting scans and tests to figure out the cause behind this maddening, deep ache in my right lower back, abdomen and hip (I find one-sided aches more challenging to manage).Honest to heaven, I haven’t experienced pain of a similar kind ever before in my last nine years of dealing with ehlers-danlos hypermobility type. This is not to say that I haven’t experienced pain of this intensity; no, I’ve dealt with higher magnitude of pain and much worse symptoms too. It’s just that I can easily and clearly distinguish between my ‘normal’ aches, pains and sensations and this strange, relatively new kind of discomfort, which initially seemed much like a muscle spasm. Let’s hope it’s not something I have to get used to. At this point, there are a few possibilities which we’re trying to explore and nothing can quite be said for sure till next week, sometime after my appointments with the specialists. Last couple of evenings have been just nice, calm and festive at the same time and filled with love and light (apart from food). Also, I’ve got a trip coming up real soon which I’m super excited about! Hopefully I’m healthy enough to travel and get by fairly well! There’s so much happening over the next few months I can’t even begin to explain out here…things are moving and they’re moving fast! I hope everyone’s been good. A very Happy Diwali, all!✨💕

#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.

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.

Days of nothing but exhaustion.

People ask me where and how i find strength to get through days like today and while i have a long version of my entire journey up till now + my on-going process,

the shortest response i have is:

“With kindness, patience and love towards my body. It’s a struggle sometimes but sticking to a practise of self-care and self-work is a choice i continue to make every single day. And somewhere in between all that conscious work, i find strength, courage and acceptance.”

//Manasi D