EDS may be a big part of my journey but it isn’t everything ❤️

I’m starting to see how this illness is a vehicle for me to look inwards, to become a better person and to live a more fulfilled life.

I’m not grateful for the pain I experience but I’m definitely grateful for the lessons and blessings that have come along with being made out of faulty collagen.

The more I accept this illness and the body that I’m in, the more I realise that I am more.  That I am whole despite the brokenness that often follows an illness.

I’d like to believe that as I continue to do the work I need to do for my own healing, I am more equipped to offer the same to the world. One thing is for sure, I’m learning to own this illness but I’ll never let the illness own me.

Love to all

-M

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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

Sometimes I wonder if there’s any limit to the pain I experience. Then I suddenly remember that there is only limit to the suffering around the pain and the limit is my mind. The pain is in my body. The suffering is in my mind. Everyday I wake up and choose to lessen my suffering instead of only trying to rid my body of pain which I know has reasons; of which some are beyond my understanding. Thankful to be here today, despite all the different kinds of pain in all the different joints and partly unexplained pain that we are currently investigating again. Happy weekend!

💕

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Update: Two days later, left shoulder is still pretty off position. Pain wise, I’m at about 7/10. There is a fair amount of tightness along my neck and around the shoulder blade which is rather normal. When a joint goes out of position, the muscles around that joint tend to work even harder, tightening, to hold the joint in place. The effect of which is basically over-compensation of the entire body, leaving you feeling more fatigued. The tightness in the muscles around the joint tends to cause more pain than the actual, baseline pain due to sublaxation.

Take a look at my photos and try comparing it with the photo of anterior dislocation. You should be able to see some dents, areas darker than the rest. If you take a closer look at the first photo, which is actually taken two days after my shoulder sublaxed, you’ll be able to see that my humorous is slightly off the glenoid.

In a couple of days from now, I hope to go back to strengthening of the shoulder. You have to give it enough rest before starting the strengthening work, however, the longer you take to start the strengthening process, the longer the shoulder takes to recover. I usually rest it out long enough – i wait till my body gives me a green light or till I have enough confidence to start the strengthening process.

Unfortunately, the strengthening process in itself causes more pain, more tightness and someone a bit of muscle spasms. I end up needing more rest and more trigger point release once I begin the strengthening process. Keep in mind that everyone’s body is different and how it responds is vastly differently too.

Go at your own pace. Know when to listen to your body and when yo listen to your physiotherapist.

 

Rare Disease Day 2018

Today is a big day for us spoonies.

It is the official Rare Disease Day, an observance held to raise awareness for rare diseases and their impact on the lives of patients.

While the purpose of today is to spread awareness for diseases and disorders that affect only a small percentage of the population, I’d also like to take this time to say a big thank you to the spoonie community for making me realize that there is hope, especially during the worst of my years.

Thank you for doing the best you can with what you have and where you’re at and inspiring me to do the same.

Please take a moment today to validate yourself for the progress you’ve made and for the strength and courage you exhibit despite your daily struggle.

I’m ever so grateful to have found to have found this community. You serve as a reminder for me that we are in this together. Thank you for being you, for sharing your story and spreading awareness for all things invisible to most eyes.

Keep going one day at a time!

Friends and family,

If you’d like to show some support and help share awareness, log on to rarediseaseday.org, click get involved and download the material which you can then share on social media. Alternatively, drop me a DM and I can share some material with you.

Love,

Manasi

#showyourrare #showyoucare

#rareillness #rarediseases #awareness #2018 #february28 #rarediseaseday #ehlersdanlos #ehlersdanlossyndrome #eds #hypermobility #pain #brainfog #migraine #dislocations #sublaxations #fatigue #health #mind #body #inspiration #motivation #onedayatatime #love #support #community

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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Flare up essentials 

 Kittens/puppies
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Dark chocolate

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Warm shower/bath

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Essential oils

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Journal + Pens

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Books

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Flowers

Tea or coffee

 Comfy clothes

Bed with a good mattress

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Pretty nails

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Peace + Quiet

Meditation + Mala

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Good food

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Friends/Family

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Plus of course, all ‘medical essentials’ (long list) depending on your specific condition and symptoms.

सेलfie/LE/

सेलfie/LE/ because, why not. Haven’t gotten a chance to really post much on here as my trip has been rather hectic and I haven’t been feeling too well. It’s my third week of antibiotics and fifth week of stronger muscle relaxants and I wish I could say I was doing better.

Nausea and migraine on top of aches and pains and wobbly joints feels like shit because there’s more that needs to be done over the next few weeks and I’m forced to take things slower yet again. It’s a challenge to be sick and do things ‘normal’ people can so easily manage so I try to break down bigger tasks into smaller, more achievable steps and get through them one thing at a time.

Well, I could’ve been a lot worse at this point, so all in all, I think I’m doing quite okay.