Month: June 2018

Jenna’s mobility fund

Manasi DalviLeave a comment

Hi All,

I know an eighteen year old girl from Instagram (her name is Jenna) who is fighting Dysautonomia/POTS (Postural orthostatic tachycardia syndrome) which causes a sudden and abnormal spike in heart rate just from change of positions (lying to sitting etc.)

She is currently in need of $500 to get herself a mobility device (a seated walker or electronic scooter) which will allow her to feel a little more independent and help her have a better quality of life. Even being able to step out for a walk on your own makes a big difference!

Please read her story below. If any of my friends here want to and can afford to make a donation, here’s an opportunity to do your part and help someone out there. I‘ll be donating right after uploading this post and I hope some of you do the same! It will mean the world to Jenna and I’ll be happy that I have friends who want to help 🙂

Here’s the link: https://www.gofundme.com/jennas-mobility-fund

Update: we have raised $100 just today and need about $400 more to go! Even a small donation could go a long way.

Lots of love,

Manasi

Devil’s Punch Bowl

Manasi DalviLeave a comment

We skipped the actual hike down to the Devil’s Punch Bowl because it would’ve been just too much for my body. I’m glad I made it till the top of the bowl and was able to walk around a fair amount. I don’t remember the last time I did something like this. It’s definitely a big deal. A few years back I couldn’t have imagined being able to visit such places.

While I’m not big in traveling due to the pain that comes along with it (it doesn’t even make me sad and nor do I feel like I’m missing out because I’d rather be in less pain, suffer less and have manageable symptoms rather than travel, not be able to enjoy much and deal with unpleasant consequences later), I do love the nature and believe that it has a powerful, healing effect on me. Sometimes, I need that more than anything so I make a conscious choice to push myself a little bit in order to let me experience nature to some extent.

#ProjectCanada

Manasi DalviLeave a comment

💗 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

The secret life

Manasi DalviLeave a comment

While I’m very open and honest about my personal experience with EDS Hypermobility, there is also a ‘secret life’, what I call the back end management which not only is something we (the chronically ill) often choose to not share but also something we often can’t share due to the complexity and implications of actually dealing with the illness 24/7.

Most people I know in the community of the ‘chronically ill’ live as authentically as possible and try very hard to share their stories, both to create awareness and for their personal healing and I find that truly inspiring and amazing.

That said, it’s important to keep in mind that it is NOT the whole story. It can’t be, unless you know us personally. No matter how much we try to put our experience out there, it is not the same as living with us and seeing us live — which is something only our near and dear ones get to see.

On my instagram, I try to share both the good and the bad. Whenever possible, it is as raw as it gets. But the truth is, for the number of times my shoulder (or other joints) clicks in and out, for the hours I spend in bed with ice packs and hot packs and the number of times i get palpitations, brainfogs etc., it is practically impossible to be both having the actual experience and sharing it.

I think that’s the reason why so many people who don’t know me well enough, whether biologically related or not, are under the impression that if I smile I am pain-free or I’m not struggling. And sometime, instead of asking, it is assumed that I am fine. Or better.

Similarly when I am bedridden, it is quite commonly assumed that I am sad to the core. Which again, is an assumption.

The truth is, the ‘chronically ill’ have figured a way to be smiling and struggling at the same time. I know it can get extremely confusing for the rest, but if you ever wonder how we’re doing, I suggest you ask instead of assume.