“So, what do you do apart from just looking after yourself?”
This question usually follows the one in Part 1. I don’t always need to answer this but I’m surely learning how to tackle such questions these days. It’s usually a stepwise process in my head.
So, at least for this very moment, for today, for NOW…I do these things other than just looking after my physical body.
1. I spend a lot of time building my mental and emotional strength. Being physically fragile changes things drastically but being mentally and emotionally weak makes things a whole lot worse. I don’t believe in rushing through certain processes in life. They’re meant to take time and it’s best to be patient. I like reading about things that make us human.
2. I try to keep myself updated about my condition, the medical research that’s taking place around the world for HMS and basically about anything that could possibly help me manage my condition better.
3. I also love reading up on general health and well-being, natural remedies and complementary therapies.
4. I spend time journalling and writing, because I think this helps me get all the thoughts and emotions out of my system. I think a lot sometimes, which is good and bad I guess.
5. I listen to music. Mostly Bollywood of course! I like songs with deep meanings. I end up listening to most on repeat. There are a few English songs that will be my all-time favourites.
6. I dance a bit. I get excited listening to fast Bollywood songs. At times I can’t control myself and just need to move with the music. I dance in front of a mirror, making sure no joints fall off. It makes me really really happy and reminds me of how much I’ve always loved the stage! My dance these days looks nothing like before, but that’s fine. I see myself and laugh. Sometimes I stop to think if there are any chronically ill-friendly ways I could do a particular step, but I usually don’t experiment with this.
7. I try baking or cooking new things. I figure out ways to prepare easy meals which require minimal physical energy to put together (and require less cleaning later). I find creative ways of doing thing without too much stress on my joints. It’s also a bit of trail and error. For example, I have been experimenting with using scissors verses knife and stuff like that. This is fun!
8. I make intricate patterns using all kinds and thicknesses of markers. I find some kind of a stillness in doing this. I make them as and when I can. Sometimes I need to put on my wrist guard in order to do this and I try to give myself a break every ten minutes (which doesn’t always happen). It can hurt like crap, so I only do this on the days I’m very well prepared in my brain to be okay with the pain.
9. I love to create new things – I spend time conceptualizing ideas for new ergonomic products. As I understand my health a bit more day by day, I see what might work for others like me. I can’t always draw these things out, so I make mental sketches. Something is better than nothing, right? Other times I quickly put these ideas down on paper in words. Someday, I might enjoy working with someone who does all the physically draining parts of a design process and create a little portfolio for myself.
10. I make sure I speak or meet with people who care. I can’t quite keep up with the entire world anymore, but I try my best to keep up with the lives of those around me who matter to me.
I just can’t handle small talks, so with others, my conversation ends at “I’m alright! Thanks!”. With some, I try pushing the conversation forward, but it starts to sounds stupid after a point. It’s usually something like “The grass is so green!” Or “Wow! The beach water is salty!” Small talks are not meant for me. Period.
11. I watch TED Talks. I can’t ever follow through daily soaps so I prefer this.
12. I switch on the TV and flip through all the channels. I was never a TV person so I get bored too fast. I watch a bit of everything, unless I find something interesting on TLC or National Geographic Channel or Animal Planet or if I find a movie I feel like watching.
13. I look around for ways to give back to the community. But I think that I’ll do this better when I’m able to give back to myself first. It doesn’t stop me from looking around though. There are a few things I care about deeply so when I think I’ve found something I’m able to handle or feel ready enough for, I’ll do it.
14. I play around with my cat! I love him. Besides, research says that playing with your pet keeps your energy levels high and makes you feel more at peace. Sometimes I feed stray cats. And sometimes, I look for nice owners so I can play with their dogs :)
15. I go for a walk without any particular goal in mind. Just a suuuuuperrrrrr duuuuperrrrr slowwwwww walk. I see new things each time, I come across new places and new people. This type of a walk is more just to open my senses to what’s around me, and less as an attempt to stay physically active. I take lots of photographs and selfies :)
I’m starting to understand that no matter what all of this sounds like to anyone, it doesn’t change where I am today. It’s normal to be judged by most people, especially if you look like you do nothing all day. And even more so if you actually look fine. Deep inside, what really counts is how productive you are for yourself.
Sometimes people don’t see that my productivity level, as someone with rare illness, is not and just can’t be the same as most around me. There is a high possibility that not everyone will see this and I’m coming to terms with it. I remind myself that as much as I look normal and attempt to do normal things, I have different needs. This means that what I do through the day will not look anything like what most people do. There shouldn’t be any comparison in the first place.
I remind myself that my aim right now (RIGHT NOW AT THIS VERY POINT IN LIFE) is to learn about myself, learn my needs, understand my body even more and keep going. That’s it, keep doing my best and keep going. This is my journey and it doesn’t have to make sense to every single person I meet.
We all have our own things to deal with. We’re all on our own little journey.
It’s extremely challenging for me to do less these days.Since I’ve been a workaholic all my life, slowing down all of a sudden, not running after deadlines like a mad dog and making sure my day is a little less productive (in other’s terms) is WEIRD AS HELL.
For the longest time, things felt abnormal. Like, whaaaaatthehelljusthappenedtomylife. Things still feel abnormal sometimes! That’s why, when I’m asked “What do you do these days?”, “What do you do all day?” or “What did you do today?”, my answer usually is “Nothing much, I’m just trying to be less productive.” The story is too long for anyone to know right there. Giving this response has been helping me a bit because I think it keeps me calmer. I’ve tried explaining myself and my situation to people so many times before and have been greatly disappointed with their reactions. Saying something like “Nothing much” allows the other person to decide if he or she wants to know more.
So, going back to where it all started, when I find tiny blocks of free time after doing what I must do for my body, I try to keep myself busy with things that ground me in the present moment, bring a smile on my face or make me laugh, and help me look at where I am in a slightly better way. That’s what I do all day.