Part 1: So, what do you do all day?

“You don’t work? Okay…Then what do you do all day?”

I get this question quite a bit these days.

It’s a valid question, I get that. But it doesn’t have a simple answer. Or wait, it DOES have a simple answer….. but it doesn’t necessarily make much sense to everyone.

I look after myself.  

Looking after my body feels like a proper full-time job. In fact, I sometimes even do over-time :) You see, I have to be responsible for every action, I have to “present” things to doctors and therapists, I have to do all the things that I need to do everyday to make sure things go as per my personal plans etc, I have to manage profit and loss, and guess what? I get paid too (in a different way, that’s all) — if I do a good job, my joints feel a tiny bit better, I’m able to manage the pain slightly better and sometimes I’m left with enough spoons (search Spoon Theory by Christine Miserandino) to meet people and do other things instead — and this feeling, when you have a rare illness, is almost as good (or better) as getting paid. I have worked before, so I think I know.

“So hold on, don’t we all look after ourselves?” That’s the next question.

Yes, true – but it’s really not the same.

Most people can look after themselves however they wish and still have time and energy for other things. Someone with a rare body is rarely ever left with extra time or energy for other things after they do what they must do. Over the years, I’ve gotten all sorts of responses from people when I say that the way I need to look after myself is so different from the way they need to. It’s just been a learning experience.

6588d03e304635e55046250a21bc6f4cI usually talk about the MAIN things that I HAVE to do in a week, which are, Pilates and Physiotherapy. I love both and need both. But those are obviously not the only things I have to do or do. There’s more to it that makes looking after my body seem like a full-time job.

So these are the things I usually do no matter what. It doesn’t matter if it’s cloudy outside, or I have a plane to catch, or my friends are coming over, or my homework (or work) is not done or Jacqueline Fernandez is in town – these are the things I need to do for my health, so I try to do it with full commitment.

1. I make sure I walk a little bit everyday, but I don’t force myself too much. I’ve been told not to bother about the speed so I try not to care. I can’t run like before, and neither can I gym or cycle by the beach and that’s why, I’ve fallen in love with walking. It makes me feel as if I am doing something physical at least. Plus, walking helps keep my muscles active – which is something I need.

2. I  take all my daily medications and supplements at the right time with the right kind of food – I’ve gotten terribly sick before when I couldn’t keep track of my medicines and the time between them. This can change your schedule drastically so you’ve got to be aware of what sort of a medication to take when. You also need to consider their side effects.

3. I cook healthy and nourishing food for my body. I have to be very particular with this because my body reacts instantly to some things. I take my time to cook things.

4. I groom myself well. It take some effort but it makes me feel good. And if that’s the case, it’s worth it. It’s a choice I make each day. The reason why I think this is part of my list of things I need to do is quite simple – if I don’t challenge myself to get out of bed, shower and bathe, look decent and put on my eyeliner(or matte lipstick), I’m quite sure I’d be in bed for the rest of my life. This bit is psychological.

5. I make sure I do all my oil massages, use hot packs or cold packs a couple of times a day(sometimes more than that!). I apply different ointments on different parts of my body and try to give my joints the support they need in order to keep me going. Sometimes I need  hot shower or bath thrice in a day!

6. I go to the pool when possible to do basic hydrotherapy. I can’t swim like before so I walk around in the pool like a grandma. Wait, no. I’ve seen some grandmas do full laps while I do what I do :)

7. I make sure I take time out from looking after my physical body, in order to look after my-SELF. My mind and my heart. If I didn’t do this, I’m quite sure I’d be dead by now.

8. I have to get my daily afternoon nap because if I don’t, I can’t get through the day too easily. Napping is good for everyone, and even more so for me. There are times I don’t get much sleep at night because of pain, so naps are a must.

9. I make sure to get into bed early and try to get good sleep. I’ve seen a very obvious relationship between my pain level and sleep so I don’t mess with it. It affects my next day too much.

10. I keep up with all my doctor’s appointments and check-ups if any. This can take up a lot of time considering the travel time and that once I’m back, I’m too tired for anything else. I also need to make sure I’ve got enough medication and arrange for more if needed.

So yes, this is what it is. This is really what I need right now. Nothing else is or CAN be more important for me at the moment. Things can change later, but for now, this is it. I’m learning that when my body is kind to me, I feel happier, and the only way this really happens is if I am kind to my body. After all, it’s the only place I have to live.

I might just be starting to set my priorities right.


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