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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

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🤗❤️✨

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.