“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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#ProjectCanada

💗 Proud moment 💗

This was literally the main objective of my trip to Canada.

I was in tears during the ceremony as I recollected bits and pieces of our past and the very fact that I could make it to Canada to celebrate my brother’s big day.

If you had asked me four years back about traveling to Canada (for that matter, traveling anywhere), I’d have told you it was a dream that might not come true. It fills my heart with immense gratitude thinking about everything that has gone behind making this trip possible for me.

M

How do you define work?

https://themighty.com/2018/02/unable-to-work-because-of-illness/

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?

A box from the past

#rarediseaseweek #2018

Just yesterday, I found a box filled with all my design stuff which I hadn’t seen in many years. It seems I had forgotten about it and left it with my dad because I wasn’t ready to accept my new reality (and discard anything) and nor was I able resist it. I was experiencing the most horrible internal conflict of all time

To hold on or to let go.

My heart knew well that I needed to let go because I had fought enough and my body was changing. But my mind wouldn’t let me.

Holding on would mean disrespecting and dishonouring the one and only vessel I had for the rest of my life. I had to learn to accept it for what it is but how could I let go of all the things I loved, planned and wanted so much? I was suffering in every way possible.

I knew I had to pause but it was hard to put away my dreams and aspirations for a long period of uncertainty, of not knowing and having answers. And that was scary. But I did it any way because I could no longer neglect the messages from my body.

So when I decided I was ready to jump off the cliff, leave my full-time job, learn to live on my own and put my body first, I told myself I’d deal with this box when I am able to see my past as just one part of my life and not a reflection of my worth . Leaving the box behind, I remember feeling as if a burden of expectation to be the “perfect one” was lifted off my shoulder and at the same time, a heavy sense of grief towards my old self engulfed me.

Who am I without my dreams, I thought.

I know nothing off this path I have carved and imagined. I will be lost. I am lost. And what if I am never found again? What if, despite all my effort and desire to leave my old self behind, I can’t do it? How will I live from here, with the burden of having and wanting to be perfect and knowing that I was born in an imperfect body?

Does honouring my body, which feels like the right thing to do, equate to failure?

Will I be a failure in everyone’s eyes?

Am I a failure in my own eyes?

Here I am now, all set to let go of this box and its contents because they don’t serve the present me.

Maybe it all made sense to some extent then, at the age of 20 and in that once healthy body. I knew nothing more. All I knew came from old, expired programming that I grew up with and around. Today, I believe I am a better version of myself and I’m proud of how far I’ve come.

Of course, my past has served a purpose; it lead me to this day. It taught me the importance of tapping into my inner strength, finding courage to do what is right for the sake of my body, mind and soul without letting the external factors lead me into believing that what I knew was the only truth.

Today, I understand that those around me need not understand me, and that it doesn’t matter if one thinks of me as less but it can be disastrous if I ever let myself think I am not enough. Because I am. And while my path is new and least travelled, it reflects a truer version of myself. It is taking me to a place of peace with my body. I believe and I’ve noticed that this internal shift brings me closer to a life of joy and purpose, one where I wake up everyday knowing I’m making a difference whether or not it is visible to whole wide world and where I live each day as gracefully as possible.

Here I am now,

ready to let go of this box,

both literally and figuratively,

and make space for the new.

With a heart full of gratitude and a lightness, I am ready to give this part of my life a complete closure because I had already said goodbye a long, long time ago.

#chronicillness #ehlersdanlos rarediseaseweek #ehlerdanlossyndrome #hypermobility #EDS #rare #illness #2018 #awareness #pain #suffering #fatigue #brainfog #past #lettinggo #memories #interiorarchitecture #goals #dreams #aspirations#acceptance #health #mind #body #soul #purpose #healing #love

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Goodbye vibes!

Goodbye vibes! You’ve been my favourite apartment of all time and I will always love you. Here’s me trying to pose when I could barely even stand. I haven’t slept well in days and my body hates the crap out of me. I’ve been functioning on high dose of anti-inflammatory and pain medications, pretty terrible food choices (because there’s too much on my plate right now) and lots of positive self.

Gone are the days when I could get a million things done all by myself and as much as I wish I could do more today I can’t and that’s okay. I am able to acknowledge when I need help and ask for it and that in itself has been a great progress. That said, I can’t be more grateful for people who’ve willingly helped whenever I needed and in any way they could. A big thank you to @shreya.j90 without whom I couldn’t possibly have made it through days of sorting, packing and running errands. I’d have loved to meet up with a few more people who have been an integral part of my life here but unfortunately, I have been in a bad shape and couldn’t have pushed myself. I love every single one of you and you will always hold a special place in my heart.

I’m in so much pain right now I’m just resting in @shreya.j90’s bed on an ice pack wondering how I’m even alive. Yet, I do believe that all is well. Everything is taken care of. If could say anything more, I’ll just add that I am definitely proud of how far I’ve come in the last 9+ years of dealing with a chronic illness. It’s been a journey of lessons and blessings which I probably wouldn’t exchange for anything. Until next time, lots of love and happy vibes🤗❤️✨

Look back…

If you ever forget how strong you are, pause for a moment and look back – look at all the times you fell and stood up, not just stronger but courageous enough to try over and over again. Look back at the times you could have shut yourself to love and pain, and built a wall around your heart, but you chose to remain soft and let light in anyway. Look at the times you showed up; for people and yourself. Your story makes only a part of you, and the lessons your learn and how you evolve, make up the rest of you. Ask yourself, “how has my story changed me for the better?” If ever you doubt your strength, your ability to love, your discernment and authenticity to walk your own path, look back… look back and see how far you’ve come. It’ll make it easier to continue moving ahead if you realise how unstoppable you’ve been up till now.

 

 

#strength #soft #courage #grow #love #acceptance #life #chronicillness #relationships #chronicillnesswarrior #ehlersdanlossyndrome #hypermobility #friendship #pain #suffering #family #illness #rare #light #journey #pause #unstoppable #keepgoing #faith #trust

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!✨💕