Label 


My first major symptom showed up just a couple of months before I turned 18. Four years of internal resistance + pushing my body, several injections, a total of 20-30 doctors/physiotherapists, 1 open-surgery and a couple of minimally invasive surgeries later I was finally diagnosed with EDS Type 3 — a label that has since been attached to my name.

There was a huge confusion around the terms “#Elhersdanlos Type 3” and “#Hypermobility Syndrome” but I knew #life wasn’t going to look the same, no matter what the world wanted to refer to this condition as. I remember knowing deep in my core, that life was about to take a drastic turn and there was no going back. I felt so relieved when my day to day experience was validated and that for once, I wasn’t “too young to have pain”. At that time, having a label that summed up my experience, a logical reasoning behind my suffering mattered so much and that attitude helped me pave my way towards getting a #diagnosis.

Every time I look back, I am convinced that everything had to unfold the way it did in order to bring me where I am today. I wouldn’t have been here had I not trusted a part of me that just knew something was off #balance; that my body needed more of my attention. That #persistency was necessary to find a label to my symptoms. Today, this label helps me in making practical choices towards my #health. It helps me when I need to find the right kind of help or seek medical attention. It helps me when when I need to keep up with changes and advancements in science and technology. However, this label doesn’t change anything for me on a day to day level. It doesn’t change the fact that my body functions in a more complex manner and has very specific needs. It hasn’t made the acceptance process any easier. 

Of course, while the underlying symptoms of all those dealing with EDS (same type) might be similar, how one experiences these symptoms, the intensity and degree of severity can be vastly different and individual to each person. I think understanding this allows each of us to have our experience and also be compassionate towards one another. 

It’s one of those days when I’m in desperate need of help and I don’t want anyone around either. It’s that knowing that your body needs absolute rest that makes you realise that you can’t do without help. All I’ve managed to do since I got up at 5:30am this morning was walk to the kitchen using my cane and make myself coffee hoping my shoulders don’t just pop out while pouring hot water into the cup.

Fatigue is out the roof, pain levels of different joints are all over the place, my back is spasming and my are shoulders loose. I’ve been twisting and turning uncomfortably throughout the night, afraid of either of my shoulders popping out or going numb because I accidentally slept on them for too long.

My shoulders having been snapping in and out without me doing much and it freaking hurts each time it happens. I’ve had to be extremely cautious through last few days and measure each of my movement. The looseness in both my shoulder joints is making it difficult to “find” rest in any position. The tightness around the muscles neck and mid back is adding a fair amount of pain and stiffness (this is a natural response of the body, a self-protection mechanism). My arms and palms are hurting and I just don’t want to touch or carry anything.

What’s worse is that I haven’t been able to tape my shoulders over the last few days as my skin is still healing from a bad tape allergy. Somehow, the lack of proper support apart from my sling has been making me a little apprehensive. That said, this is all very familiar now. I talk about being present and listening closely to your body and today my body demands me to not move. I’ve had work over the last few days which were supposedly rest days but work is fun and I can be a workaholic so I’ve had a hard time practising some self control.

Today, however, there’s nothing that needs to be done except to tend to my body. Everything must wait and anything that can’t, isn’t needed. We have to learn to be patient with ourselves and let our bodies take some time to adjust to a new routines and changes. Prioritise rest and recovery, go one step at a time and ask for help when needed🌷

Day 17: Bedbound

In the last 17 days, I’ve had to change and cancel my plans and come to terms with my present reality once again. It’s never easy having to adapt to the ever-changing nature of your chronic illness but you get better at it. It bothers your less (in general) and when it bothers your too much, you learn how to manage your thoughts and emotions around it without beating yourself up each time.

I’ve had to postpone the starting date of my part-time job, stop working on the classes I had plans of teaching, take a break from Pilates and my daily walks, ask for help with groceries and meals, all so that my body gets the rest it deserves, the space it needs to just be.

What I have been doing instead is tending to my back as much as I can and very religiously sticking to my bedtime and nap-time. I’ve been massaging my back with certain oils that help me, using lots of hot packs, doing very light stretches, a bit of infrared therapy, going for physiotherapy, meditating, making small mandalas while in bed, reading up on the treatment-diet that I am on for SIBO, writing, and for most part of it, trying to be more present

As much as I’d like to do more, I can’t do more right now and that’s something I need to be okay with. I’ll do more when I can do more and for now, whatever I’m doing is enough. I’m going to continue giving my back the time it needs to recover. Once it’s better I’ll have to slowly build myself back to where I was before this crazy flare-up (or before I went to India.)

According to my Naturopath, my back could be taking longer to recover due to the SIBO treatment-diet I’m on. It seems that the treatment can induce a very strong detox process (which is needed for the treatment) in your body, which, if too aggressive can cause more inflammation in the existing areas of inflammation. I only hope what she thinks is true because quite honestly, my back is not a happy bunny right now. At all.

I hope things start to look a little more positive soon.

P.S. If you’re wondering what’s on my SIBO friendly “buddha bowl”:

  1. Boiled Beet root with Olive oil and Lime juice
  2. Stir-fry Spinach with Salt and Pepper
  3. Pan fried egg (I usually have it without the yolk)
  4. Olives
  5. Roasted Tobasco & Ginger Chicken
  6. Indian Spiced Zucchini

Day 13: Bedbound

In the last 13 days of being bedridden, I had three alsolutely healthy individuals telling me that I shouldn’t have done something I did on New Year’s Eve. What did I do on New Year’s Eve? I went out for dinner (DINNER) with friends, couldn’t sleep till 4am and woke up in excruciating pain. And did I complain to you? Nope.

These three individuals aren’t even close to me and most definitely don’t know what it is like to be chronically sick for eight years and the consequences it has on one’s life.

 I completely, from the bottom of my heart understand that they were probably concerned and perhaps I need to just let it go and I certainly will. However, I choose to share this today because I want to bring across a very important message.

On behalf of all of us, the chronically ill community, whose lives generally revolve around their health, acceptance and gazillion other life-altering decisions, I want to say something:

Every single decision we make is consciously thought through by us. Whether that’s something as minor as choosing to use a fork instead of chopsticks, or something major such as having to leave school or a full-time job, or, to once in a while allow ourselves to do something we normally don’t. One can’t even begin to imagine the lengths we go to weigh out pros and cons etc. Every cause and effect is measured. And even then ,our bodies fail us sometimes. Even after all the thinking and taking necessary precautions, there are times when our bodies have other plans and leave us in utter disbelief of the amount of pain something can cause.

At the end of the day, we are not fortune tellers and as much as we can base some of our future decisions on our past health-related experiences, we cannot deprive ourselves of being human. Most of us are extremely responsible people leading a rather simple life, filled with passion and gratitude despite all our struggles. And, let’s be honest, our health usually doesn’t allow for bad decisions.

The last thing we’d want to hear when we’re dealing with such heightened pain is what we “should” have done or not done or do. When you tell someone that they should do something (or not), you make them feel incapable of making right decisions for themselves. It’s almost as if you believe you know what’s better for them. Trust me, you don’t.

What would help instead is to simply ask how we’re doing and if there’s anyway in which you could help. Thank you.

Update: Week 1 of 2017

It’s been seven days now and I’m still waiting for this back flare up to calm down. I’m mostly bedridden at the moment, getting out of bed only if it’s absolutely necessary. I haven’t gone for Pilates or even stepped out for my daily walks. I also had a pretty bad brain-fog which lasted for a couple of  days.

All in all, it feels like 2017 hasn’t quite begun for me and I’m still stuck in 2016, dealing with the consequences of stepping out for a light dinner with a couple of friends on New Year’s Eve. We got stuck in a bad traffic jam the same night and ended up feeling hungry at the strike of mindnight, which then made us want to get some food by the beach before finally heading home.

I’m always putting my health first and never feel the need to be out or go crazy or involve myself in anything just because that’s normal for people. So once in a rare while, I don’t mind *celebrating an occasion, even if it involves a bit more of my physical energy and dealing with its consequences for a while. Even then – it’s usually pretty low key and I love that.

* if you’re chronically sick and your days revolve around health and constant figuring out/surviving, the more reasons you find to celebrate life in your own ways, the better it is. You don’t need to try and act normal or do it the way “normal” people do it. Just find what works for you and live your kind of normal to its best.

My treatment-diet for SIBO has finally started and I will be starting another round of antibiotics (one dose did nothing for me) next week on. The low FODMAP diet,as a treatment for SIBO, can become rather restrictive/limiting in terms of your food options (especially when you mostly make healthy choices anyway) and can end up frustrating most people on it. It requires you to plan your meals down to each ingredient. Somehow, at least at this point, I’m looking at it as yet another opportunity to further my knowledge in nutrition and to get really creative and experimental with low FODMAPs.

I can be quite disciplined and patient when it comes to my health so I’m not expecting too many issues at this point.  However, I might have to include more meat in my meals and I’m not much of a meat-eater. Let’s see how that goes for me. I think I’m going to miss dark chocolate and chai the most!

I’m trying to keep my meals simply and easy to preprare so they don’t take away too much of my mental and physical energy unnecessarily. I do however want to be capable of preparing quick meals for myself as far as possible. I’ll try to share some of my creations as and when I’m able to.

That’s all for now!

#throwback to December 2012

This is me just four years back (4/9 joints down) – a point in my life I would never want to go back to, even if someone paid me a million dollars for it.

I had received a diagnosis just two months before this photo was taken. My parents’ divorce was at its peak and there was so much uncalled for responsibility around it. My career and life plans were falling apart. My boyfriend of 5 years and I were going through a very painful break-up. I was popping 8 painkillers a day + 6 muscle relaxants + non-addictive sleeping pill and yet finding no relief. I had migraines which drove me mad and there was this annoying, buzzing noise at the back of my brain which just never stopped.

I couldn’t close my eyes or be alone in a room because I feared my body might fail me in some way. I rarely slept and if I did, I got nightmares and I’d wake up drenched in sweat. At times I was afraid I’d never wake up. I had palpitations and sudden fall in blood-pressure a number of times in a day. I would lose balance as I walked. I couldn’t wash my own hair or even dress myself. The creative inside me was no where to be found. My body needed energy and I couldn’t eat. I was hospitalized a few times because I started reacting to some medicines.

I only got weaker.

I was trying to hold onto my life, every bit of it, and the harder I tried, the more defeated I felt. My body was screaming at me and I didn’t listen. People around me wanted things out of me that I simply couldn’t give. I needed myself more than anyone else and I kept putting everyone else before me.

There was nothing familiar left about me or my surrounding. I didn’t trust my body and I didn’t trust anyone else either. The fighter in me could no longer fight. I thought I knew what strength was all about but I clearly didn’t.

I needed to let go.

And after what seemed like eons,

I finally started learning to let go,

to accept what can’t be changed,

and to work with my body.

There is more to learn + create,

but right here today,

It’s all okay.

Paddle Boat 

Let me tell you a short story about yesterday.

So I left home with a friend, expecting to go to a flea market and be back home within two hours. The flea market turned out rather pathetic so we landed up in this adorable cafe and had traditional Chinese milk tea + an almond cake. Then, since I was extremely excited about finally being out (not a medical appointment for once) after my flight back from India took a toll on me, I thought I could handle a couple more hours of staying out. We decided to go this beautiful place and sit by the water and think about life.

What happened next was totally unexpected and impulsive – instead of just sitting by the water, we went on a paddle boat for an hour. At this point, I must tell you that I love water (I think it has some healing effect on me) and I’ve always enjoyed water sports as a child. Just about seven years ago, I was close to getting a kayaking license and was looking forward to kayaking to some nearby island.

Okay, back to the present – some memories came flooding in and I was surprised that none of them made me sad or upset. Past is gone for a reason and my reason here (health) is of immense value, something most chronically ill people understand. I realized that paddle boating was probably the closest I was goinh to get to any form of water sports now so why not just give it a shot?

 The seats didn’t exactly look comfortable and were clearly at an angle that’s bad for my back. The paddles too, were located at an angle not quite right for my knees but even then… I wanted to give it a shot. I trusted my friend to take over when I needed a break so we hopped onto the paddle boat and went paddling away.

Well, we had a blast. We literally blasted Bollywood songs and laughed our heads off. Unfortunately, the winds were pretty strong and the waves were kind of harsh so we needed to be towed back after our time was up. I was kind of tired anyway so I’m glad we got a quick ride back.

So today, I woke up with noticeably high pain levels and extreme tightness in my lower back. It’s a challenge to walk around the house and I had to cancel Pilates just to stay in and rest my inflamed lower body. My calves, hamstrings and glutes really did a lot of work last evening. You might think that’s good, but trust me, this isn’t your after-workout-feel-good-and-sexy kind of pain I’m talking about.

Anyway, to conclude my little story. I’m super happy that I attempted something new. Something from my past but not quite. Something more present. And, I realized that it’s something that didn’t quite work for me – which is fine because I’ve got more information about my limitations. So do I regret getting on it? Yes and no. Yes, because dude pain is never fun. And no, because a part of me would’ve continuously longed for that experience and the sheer possibility of it perhaps not hurting me would’ve bothered the shit out of me.

Now I know better and next time, I’m taking one more person along with me so I can rest and the other two can paddle. Royal treatment? Sure, that’s better than being royally screwed (by pain) later.

Love,

Manasi