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🌷

Compression Socks

When you’re hypermobile, the chances of dislocating your fingers, wrists, elbows and shoulders (…and of course, ankles) are significantly high when you’re trying to put on your compression socks! On an average, it takes me about 20 minutes to have them on and I often break out in a sweat because it takes that much effort. They do help with muscle spasms and cramps so it makes me want to keep trying. Oh and if I’m expecting my lunar cycle and cramping like no ones business, I definitely want to use them. I could even do with a compression suit. Also, I had a little bit of a moment last evening when a mayonnaise jar fell off my hand and I wasn’t in a condition to even imagine cleaning up. I had a back brace on and my knees weren’t doing too well either so I needed to call for help. I did think through if I could do it on my own but it made no sense when I had been bedridden all day with pain taking away all my energy. I’ve noticed one thing: we could be doing a pretty good job with acceptance and dealing with limitations on a greater level but there are times when little things remind you that you’re physically not as abled as the rest and then for a brief moment, you’re just like wtf. Well, that’s especially if you’ve had a rough week. Anyway, that was how yesterday ended for me and today is a new day so we shall see how things go. All I want today is my bed, a cup of hot chocolate (SIBO can’t do) and a Great Dane pup.

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

I’ve had a rough week attempting to function while my arms were simply not functioning. This week, I hope to do more for my arms by doing less in general. I’ve always struggled with slowing down and have come a long way with it… but to slow down further requires effort. It requires being present. I’ve observed that staying more present can change how you experience it and that in itself can be very useful.