this is a photo from last year when I stepped out of my apartment for the first time after being bedridden for seven months. Apart from the trips i made to the hospital for tests and appointments, i was completely bedbound due to a massive lower back flare which caused excruciating pain and muscle spasms in my entire lower body. i was also undergoing a treatment for #sibo, following a highly restrictive diet which was helping my physical symptoms and also changing my relationship with food for the first time. With support from my close friends and a couple of family members, i somehow survived those seven months in my own apartment, walking not more than 200 something steps per day. i think i’ve dealt with times worse than that and have come out a little wiser and stronger each time in my entire life. Despite spending countless nights in pain and doubt of whether i’d get out of bed the next day, i’m still here today. Not ‘fixed’ or magically cured. Just doing my best and allowing myself some rest. And so are you. And I promise, if you’ve come this far, you can go even farther.

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Seek

Throwback to when I could still swim and position my arms a little more comfortably than right now. And now even though I end up walking in the pool or swimming with every move calculated and rehearsed thrice in my mind, I still find some peace being in the water. There’s something absolutely healing about water and I can’t find words to describe it. Leaving behind swimming 15-20 laps a day was hard because swimming was my escape or meditation (and it kept me physically fit enough) I thought, until I couldn’t escape anymore. Until I couldn’t run away from home, from a space I could barely breathe or be alone in, to really listen to my heart beat and know I was still alive. Until  my body forced me to stay in bed and find a way to deal with reality, with love and compassion for myself first.

Again, it doesn’t hurt so much anymore so I can actually share these things with you. In fact, this is so freeing, realising that I’ve learnt to let go of things I tried holding on to for a very long time, almost hoping they’d come back and fit together into this picture-perfect life; things that I thought made me who I was. Perhaps the way it happened wasn’t the best but I’m grateful to have realised very early in my life what truly matters. What I was never wrong about was that I was constantly seeking peace and a reason to be happy and activities like dance and swimming kind of gave me a taste of both.

Today, I am thankful my experiences have taught me that true source of peace and happiness, the kind of peace and happiness that makes you really glow, is within us. I can be in bed and in pain and still be at peace, still be somewhat happy knowing what I  now know for sure. Getting here took equal parts faith (in my body and something bigger) and conscious actions (because even when you think you don’t have control, you still have a choice to remain stuck or take the next best step), and maybe a dash of sparkles. ✨

Lunch-time salad

  1. Yellow capsicum
  2. Red capsicum
  3. Purple cabbage
  4. Sautéed onions
  5. Lemon Chicken (I cheated today and got it from an Asian eatery near by. That’s allowed when you’re really tired)
  6. Homemade Spicy Garlic Cream sauce (all fresh ingredients!)
  7. Roasted Sesame seeds
  8. Base of Greens and Herbs


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.

Ok, I can’t lie. I am tired. Freaking tired. It’s just been two days and I’ve got two weeks ahead. I want to be able to get through these two weeks well, even if there is a high possibility that my days will leave me with no energy for myself. I might need an increased dose of pain-killers too. Maybe I’d need most of my joints taped up too. I’m prepared and I have the support I need.I keep telling myself, one day at a time. One day at a time. One day at a time. There is work and Pilates and Physiotherapy and some not-so-fun paperwork and I’m on a short family vacation at dad’s because my little brother’s here. I can’t predict how the next two weeks would pan out. I can’t tell. I’m not used to such a schedule. I could do with all the spoons on this planet right now.

Once a dancer, always a dancer [2]

The memories I have of the times I could dance are nothing short of beautiful. Dance was something that filled me with pure ecstasy each and every single time performed, taught or just danced for myself. I used to sprain my ankles very often and required rest but I couldn’t resist dancing even during those times.
 
When life started looking different and I had to spend more and more time in bed, letting go of my passion for dance was one of the many painful decision I had to take. It used to hurt me each time I saw that those around me were able to dance and I couldn’t. It used to kill me each time I looked at old photographs and videos of myself dancing and I’d think to myself that life was becoming pointless – how is it that everything you love so deeply is harmful for you and your body in some way or the other? I’d wonder.
 
Then there came a point when I literally deprived myself of anything related to dance. No more old videos. No more old photographs. No more watching anyone else dance. No more listening to happy bollywood songs which drove me mad. No more talking about dance because each time I did, I’d have tears in my eyes. I thought I was helping myself get over my passion for dance by trying to forget everything related to it in my past. Which meant forgetting a BIG PART of my past and that was ridiculous.
 
Over last year or so, things started looking different. It was the year when I allowed myself to feel pain. I had to let myself grieve over what is no longer mine and what I had to leave behind, along with an older version of myself. Letting go wasn’t easy, because it wasn’t only dance I had to let go of. There was a list of all things that I loved and wanted and couldn’t have that I had to come to terms with. Till this point in time, I hadn’t let myself grieve that old version of me. The one I was so familiar with. I was only holding on. Not moving on. Soon, I began to ease into not being able to do certain things because I realized something very important – I started choosing health over everything else, and that is what made me come to terms with my present self. I don’t regret that I left dance but I know dance hasn’t left me. Dance will always be a part of me.
 
Though this process has been extremely uncomfortable, it has been absolutely worth it because I no longer look back at my photos and feel like shit. It doesn’t bring me to tears. When your story doesn’t make you cry, you know you have healed. Watching others dance doesn’t make me feel bad that I can’t. Instead, looking at people dance out of happiness and passion makes me insanely happy. And you know what? It makes me want to dance again sometimes. I can’t compare it to how things were and I won’t try because I understand the change my body has had to go through. I do what I can do and even that brings a smile on my face – even if it means just to dress up, blast music, move just a little bit and imagine as if I can dance like before. Dance involves both movement and expressions and even if EDS has taken away a decent amount of freedom of movement from me, it most definitely hasn’t taken away my ability to express/give expressions, or imagine and choreograph steps in my mind.
 
It’s true – once a dancer, always a dancer.
Today was one of those days when I let myself dance a little bit. Just a little bit. I was careful not to over do anything and it really required me to be aware and present. I think it’s okay to do what your soul craves sometimes as long as you have your next physiotherapy session booked. I do.

#butyoudontlooksick

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

 

Stick

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Might be adding another item to my #disability aid. I’ve had braces, slings, tapes and guards up till now and they’re all useful in their own unique way. Plus, they work together to keep me moving about and functioning. As much as I try not to become overly dependent on them, I also know that they’re just part of my support aid and that’s totally fine.

Lately I’ve been on my feet quite a bit and things just seem more busy in my #life (compared to last year) – I don’t think it’s the good kind of busy – it’s the “can’t help it” sort of busy, and I do hope I’m able to handle this situation (physically) as well as I imagine to (mentally). It gets really exhausting and in the last couple of weeks, I’ve had times when I seriously couldn’t get out of bed. All my #joints were in a bad state but the sharp pain right underneath both my knee caps literally made it hard for me to stand up and even walk around the house to get the things I need in order to help myself.

I guess that’s when it hit me again – and it has hit me before back in 2014 when both my knees gave in – that I might need extra #support at some point. I do usually have my knees taped up, and when I don’t, I have guards to make sure that my kneecaps are in place and I’m able to walk around. Then again, there are some days when I feel even that isn’t enough. No, it’s not just in my brain and no, I’m not planning to become overly dependent on my disability aid as such. In fact, on certain days, I choose to train my body without them and I manage okay at times. I make sure I carry it all in my bag though, you know, just in case.

Again, I wish everything was all uncomplicated and didn’t require much thinking, and as we all know, that’s not the case. Using a walking stick means using a lot more of my wrist. You see, your body has to work together, all it’s dangling joints need to team up and say, “okay! It’s our turn to look after you (a particular joint) today.” and help you manage part of your body that require the most attention. At times, it doesn’t work – it simply doesn’t. Because your entire body says, “You know what. No. Not today. Today I choose to not work. End of story. Period.” That’s when it gets the hardest to manage. It’s the hardest when the intense physical pain you experience  starts to affect your mental capacity to focus or get through the day. You get the idea?

So when I decide I probably need a walking stick, it also means I have to think trough it properly. A lot more than I like. Will my right shoulder be able to take it? Can my wobbly wrist manage the extra pressure? I’m here trying to lessen the pressure on my knee caps, but can my arms handle it? It’s a lot of decisions. You can read my previous blogpost about how you’re constantly – and I mean it – constantly,making decisions all day long if you’re living with an illness that’s chronic and causes you pain all the time. Pain lives in your body.

I’m almost certain about the walking stick, though I still have to weigh certain options out. A person from my Instagram community of spoonies recently happened to get a walking stick too (it was funny how I saw her post just when I had made a decision), and she said something like, well, if you’re going to be disabled at twenty-something, then you might as well be stylish about it. SO agree  with her! Alright, though style is least of my concern right now  (duh, it never is for anyone like us), if the walking stick is functional, provides me the needed support AND looks and feels like “me”, then I’d love that. 

Let’s see how the search for my walking stick goes. How does it feel like to “need” a walking stick at 25? Well, not great. Not the best feeling. But also, once again, as your grow with your illness, you learn to accept your needs for what they are. Even if sometimes they are like that of a little, old, grandma. That’s why, I think it’s completely OKAY to need and want anything in your life that makes your experience of living just a bit easier, if not worthwhile. If there is anything that can help to lessen the pain or at least provide extra support or stability  to your body, it’s worth it. For me, everything is based on what’s right for my health and body in the short, and long-run. I look at my decisions and actions through the lens of my body; from my body’s point of view.

Because it works the best that way.

Goodnight, all!

❤︎