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.
#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
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
🌸Do what makes your soul smile. If that’s dance and you can’t dance, find a way to feel like you’re dancing. Feeling is everything. Find ways to keep your spirit alive while you have to deal with and work around a not-so-healthy body. It’s hard enough on a daily basis and you’re allowed to find ways to make it a tad bit lighter on yourself, okay? You don’t need anyone’s permission for that. You are doing your best with the cards you’ve been dealt.
I can’t dance/perform like before, I can’t just stand up and let loose and dance freely but I can imagine doing it in my mind. I can imagine dancing, performing and choreographing like before and I can FEEL it as if it’s true. It makes me smile from within. That said, I know my body has its limitations and I know what’s right for my health. I don’t have it in me to be stupid and push my body in ways I tried to back in the past. You see, I might have had to leave dance behind but my love for dance will always stay with me and you know what?…that’s enough for me.
This isn’t some law of attraction discussion and I’m not going to say “imagine and you’ll have it” because if you don’t get it, you’d think you didn’t want it enough or you haven’t tried hard enough. If that were really the case, if only imagining solved all my problems, I’d be doing different things at this point because trust me, I’m bloody good with my imagination. All I’m saying is, be true to who you are and things that keep your fire going. Be a little #crazy in your own special ways. Keep those things alive; things that keep your enthusiasm for life going. Keep working on finding ways, finding solutions. Be open to possibilities while being aware of your #reality. I’m not going to tell you to have high expectations out of yourself when you have REAL LIFE limitations and when you’ve worked so hard to leave your old life behind.
Acknowledge your present with your heart and mind. Please do not work on going back to the life in your past which doesn’t serve you anymore today. Please don’t force yourself to walk backwards and create more suffering. Past is gone for a reason. Walk forward with what you have and what you can do. Be very practical + imaginative where necessary 🌸 #chandralekha #bollywood
Hello there spoonies and other friends!
So while I was off social media, I took some time for myself and made sure I brought my interaction with people to a bare minimum. I met just a few people apart from my pilates instructor, physiotherapist, ayurveda therapist and naturopath but I made sure to look at my phone and laptop less. In fact, I wrote more in my journal and typed less on my phone.
Some of the experiences I had just over this week made me think through a lot about how far I’ve come and how far I’m yet to go. When you really make an effort to disconnect with the noise around you and connect with what is already within, you finally hear the noise within you loud and clear. And if you dig deep enough, and have the courage to dig further, you find that there’s so much wisdom residing in there that you barely ever need to seek answers from outside. A lot of what we need to know, we already do.
So, obviously, I made a list of ten things that came up for me in the course of this one week. I took some time to journal and think through each point even more and I figured I have so much to share and so much to learn at the same time. I wasn’t too sure if I wanted to share this list with everyone but I’ve made up my mind to do it anyway. Who knows, it might resonate with someone out there.
1. Listen more; to your inner wisdom and to those who need to be heard
2. Express more gratitude
3. Have the courage to ASK for your needs to be met
4. Be brave and say ‘NO’ if/when necessary
5. Preserve your energy; it’s everything
6. Reframe your past, refocus on your present and reimagine your future
7. Return to the thoughts of peace, love, health and success
8. Validate yourself for every progress you’ve made
9. Make your own decisions. You know what is best for you.
10. Trust that you will always be supported if you’re willing to jump off the cliff. Keep doing your best and being your best even if you’re at your weakest.
The most important thing I realized was that I NEEDED this time. Unless I make a conscious effort to create a space for myself, I will always be a part of something I don’t need to be a part of. Love, Manasi ❤️ #chronicillness #selfcare
If you have a story, write. If you have a story that changed you for the better, write for sure. Because when you do, you heal and create a safe space for others to heal.
There can never be enough stories of struggle and harsh realities which lead to strength, courage and acceptance.
Don't let your story confine you.
Let it become a catalyst for your growth, your ability to adapt + respond and your enthusiasm for life.
Just a mini reminder to stay true to your own journey and pace yourself. Time is never in our control but how we use time is.
March was a busy month and I’ve been feeling more exhausted than normal (I know, I know, for those without chronic illness, this must hardly make any sense). The good thing is that whatever was planned for March is all done and that’s one big step in the right direction. However, before I could even allow myself to fully rest, there’s stuff lined up for April which I want to tend to. Half of me is excited and the other half just wants to hibernate because you can never get enough rest when your body is constantly using up a lot more energy.
It feels like there’s hardly any time to recuperate from March! The workaholic, Ms. Productive in me wants to take charge and make things right and “fix” everything and never stop (this is the older version of me who thought she had it all figured out because at one point she did and guess what, I’ve grown to listen to her less and listen to my body more) because time is running out or something. The truth is, it always feels this way unless I take the initiative to really create space and find time for selfcare – to think less in terms of productivity and more in terms of peace, love and what makes me smile from within.
It’s funny how we think we have control over time when all we have control over is how we respond to it. Time continues to fly and do its thing and either we learn to work with it and use it in a way that aligns with our true selves or we let it freak us out and allow it to paralyze us further.