Tag: Rare
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.
Throwback
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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Happy Rare Disease Day to all the wonderful spoonies out there!
I’ve been too fatigued and in so much pain that I just couldn’t get myself to post anything ,but, seeing my Instagram feed filled with so many amazing posts trying to create awareness for rare diseases brought me immense comfort and a sense of relief – we’re definitely not alone. I’m so thankful to have come across such a courageous and inspiring community on Instagram. Knowing that I am #rare and yet there are so many others out there just like me gives me strength to keep going, even through the most miserable of my days.
Here’s to finding cure, and until then, having hope and faith for a much better future.
This is what chronic illness can look like.
Happy #Rare Disease Day in advance!
Today’s situation
#EDS #Hypermobility #Pain
Let’s not break now
I’ve had a fantastic holiday up till now.
I’m pretty sure that my next few days will be awesome too. I can sense that my body is tired from trying to hold itself up but I’m still quite excited about the last few days I’ve got in India.
After three years of having no holiday, a break was definitely needed. I’m glad I got some time away from my routine, to let my hair down a little and re-look at my priorities.
All that said, anything in excess is a sign of imbalance and nothing in excess has ever proven to be good for anyone. Seeking balance has helped me learn to manage this illness and I now see the scale tipping in one direction.
So, before this break (intended to be relaxing) starts to “break” me down physically, I believe it’s time for me to return and channel all my focus and energy towards things that keep me going.
After all, I’ve got a long way to go in this body.
Back to tending to my loose shoulders, inflamed neck, cramped calf, flared up back and wobbly knee caps. Good day, everyone! 💕Love to all.
#notsoinvisibleillness
When reality hits you in the most unexpected moment,
Look.
Feel.
Don’t distract.
Look again.
Feel again.
Breathe.
Let go.
Breathe again.
Let go. Again.
Breathe once again.
Let go. Once again.
Everything is okay in this very moment.
You are okay.
My Tape Story 