Tag: Invisible

Once a dancer always a dancer

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So I was busy decluttering my to-be home office, discarding the old and making space for the new. It’s a ritual that I take seriously because it allows me to work with my feelings about the things I own, my past, present and future.

Determined to pull an all-nighter according to Canadian time so that I can peacefully fall asleep at night, I decided to play a list of fast Bollywood songs which is specifically created to lift my spirit up from time to time. I thought it was helping me stay up and get work done.

Just then, this one song plays and I’m like nahhhh, everything can wait. Everything must wait. I need to do this.

Think about it for a moment:

With the dark cloud of chronic illness constantly hovering above us, what can we do to lift our spirits?

What sparks true joy within us?

Could we be letting our disability confine us more than it needs to?

Can we not find ways to work within our limits and still experience similar feelings of passion?

I think we can.

We’re all different, with different illnesses, different degrees of severity, different scale of limitations, different support systems, different biographies which could very well translate into a drastically different experience altogether — there’s absolutely no reason for us to even make that comparison. All said and done, each of us is doing our best to work with the cards we’ve been dealt.

BUT. In the midst of the pain and suffering, I think it’s possible to find ways to work with or around things we truly enjoy. I can’t dance like before, nor can I move with as much energy, but I do know for a fact that when I’m on my roller chair and if symptoms are manageable for the day, I might be able to move a little and FEEL that same feeling I experienced when I danced in the past. I do have to be careful though but I’ve reached a conclusion that you can’t take dance out of me.

It makes me feel alive and so I do it very often :) I hope you enjoy my crazy and find something that makes you feel a tad bit crazy too.

Lots of love,

Manasi

#onceadanceralwaysadancer #bollywood #dance #passion #love #joy #wholehearted #chronicillness #pain #fatigue #suffering #smile #invisibleillness #ehlersdanlossyndrome

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Today has been a rough day. There is nothing worse than having a flare up during your monthly cycle. My back and tailbone are experiencing deadly spasms and the cramps this time are worse than last month. Monthly cycles don’t look the same like they did years back. EDS takes your ordinary monthly cycle issues to yet another level.  Pain level just shoots up, your joints feel more loose than normal, (I’m excluding all the other common symptoms every woman deals with anyway) and getting out of bed is next to impossible. I’ve forgotten how to function today.

#butyoudontlooksick

Manasi Dalvi2 Comments

I recently met someone who told me that I don’t look sick at all.

I smiled.

I said, “I know. I’m happy I don’t I guess.”

It never fails to make me wonder what we expect “sick” people to look like. What we define as “broken”. What we think needs “fixing”. Whether “imperfections” are always visible and whether what we see is all that there is.

There was a phase when I wished people looked at me and believed my words. These days I trust that people who need to know will see it for themselves and trust me, while the rest are free to create a story around it. Believe me, you can’t completely hide chronic/rare illnesses.

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You don’t have to look sick to be sick or feel sick.

And you don’t have to prove anything to anyone.

All you have to do is attempt to feel and be as healthy as possible, and always be honest with yourself – that’s all that matters.

Lots of love

MD

 

Down.

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 One of those days when all you can do is sleep with oils and hot packs.

My sleep was terrible last night. In fact, I haven’t been sleeping too well and I assume it’s because I’m still getting used to my new place. I usually need some extra time to settle in and get used to a new space. We all do I suppose.
It took me a while to fall asleep last night and I got up far too early. 5:20am? I woke up feeling extremely cold; to a point that I was shivering and needed to wear a sweatshirt, put on my socks, switch off the AC and get myself two hot packs to hold on to. Getting out of bed was a challenge because I hadn’t slept enough and my back as tight and in pain. Nope, I didn’t get a dream and nor did I wake up feeling anything. I just woke up feeling abnormally cold.

No, I wasn’t running a fever either. I checked. My temperature was kind on the lower side instead. I don’t usually get up because it’s too cold in my room. I’d get up if it gets too hot sometimes. The AC needs servicing, so you can imagine, it really wasn’t that cold to begin with. I decided to push myself out of bed, even if I was freezing to death, and start with my day. I had to because my brain was active (tired, but active) and my body didn’t want to cooperate. I know it needed rest but staying in bed wasn’t helping.

Within an hour or so, I got back in bed again. There was no way I could’ve continued with the day. There is no way I’m going to be able to sit with my laptop or get anything done, even though my brain could handle it. It doesn’t even seem like a work-from-bed day. Today, my body needs extra care and rest and that’s what it has to get.

That’s just how it is – every day looks different, yet can feel the same.
🌷