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. 

How I try to cope with the unpredictable nature of my health

How I try to cope with the unpredictable nature of my health (8.5 years and counting)

1. I make all decisions related to my health on my own because no one else knows my body better. Patient empowerment is so important when dealing with a chronic illness.

2. I trust that my body will respond if I give it enough time and care. I need to allow it time + listen to it closely.

3. I choose to work on acceptance rather than fight the inevitable. It allows me to work with my circumstances from a space of love rather than hate.

4. I acknowledge limitations, suffering and pain and put more focus on opportunities, dealing with emotions and recovery.

5. I choose faith over fear; vulnerability when necessary over strength all the time (it can be pretty unrealistic to be strong all the time).

6. I protect my energy. I’ve learned to say more ‘no’ and less ‘yes’ both politely and affirmatively.

7. I do not track my progress based on what I can do in relation to others.

8. I keep myself updated about the condition + advancements in science. This way, I’m able to make informed and choices.

9. I try to find miracles on a day to day basis. It keeps my hope going for something greater.

10. I am grateful for what I have and who I have around for me (Quality > quantity, as far as possible).

11. I celebrate every little progress I make. Sometimes getting out of bed is progress too.

12. I make flexible plans and routine. Self-care is always at the top of the list.

13. I’m honest about my health with myself and people

14. I do not ask “Why me?” anymore. That question leads to a downward spiral and takes you straight into a shithole.

15. I look at my health as just one part of my experience on this planet. It’s not my health which defines who I am as a person; it’s how I respond to it that does. I can’t just rid my body of the illness but I can definitely work on giving it less power.

I end up having to work with my body as if I’m working with a child. It takes lots of time, effort, love, compassion and consistent practise.

It’s not easy but every response is worth it 💗

Update

Hi all,

I haven’t been too well since the start of 2017. I’ve been dealing with bedriddening pain + gut related issues and the effect of all of it on my activity level has been quite significant.  My health has taken a major dip this year and I’ve spent a large part of my time re-figuring things out.

This is life – it’s never predictable and to stay afloat, we have to keep finding a “new” balance + remember to be patient with ourselves through it. Sometimes it may feel like we’re starting all over again, however, it’s crucial to put our focus on the fact that we’re also wiser, stronger, more courages and a little more ready each time.

There’s been more happening in my gut and I’m currently working with an intergrative GP, a gastroenterologist and naturopath to find the next best step. The amount of decision fatigue I’ve experienced over the last five months is not funny. Apart from a rather serious back flare up + sublaxed shoulders, something so simple, straight-forward and enjoyable like food turned into this massive, overwhelmingly exhausting thing that required/ requires constant awareness and thinking.

For the next three weeks or so, I’ll be going on two very strong medications, known for worsening all existing symptoms. I’ve have been specifically told to not take this treatment too lightly and it might make life seem a tiny bit miserable. As someone who deals with excruciating pain and indescribable fatigue on a daily basis, I honestly don’t know how much worse things can get. However, I have also seen myself at my worst before and hence believe it’s important that I take extra precautions and have help available for me if necessary. Thankfully, I do have a small group of people to count on if needed.

On a brighter note, I’ve got a couple of workshops to teach and close friends to meet so I’m really keeping my fingers-crossed and spirit high :) I’m aware of what may happen, giving my body extra time off, saying more no and less yes (trust me, it’s needed when you are functioning on limited energy) and taking everything one baby step at a time.

I hope everyone’s doing fine.

In case I’m not around much, Happy June! ❤️

Love,

Md

P.S. This post is not about defeat or seeking validation, and most definitely not one asking for pity.  If it sounded like any of these to anyone, please let it go. I’m just sharing and giving an update of how things have been this year. Please keep in mind that it is very much possible to mentally accept and deal with things gracefully WHILE experiencing a great amount of physical discomfort.

#chronicillness

It’s barely ever what you see

Here’s the thing about looking like a perfectly healthy individual when the truth is something else altogether

A bus has to wait for you to get into uber and the driver thinks you’re this fit and fine woman taking her own sweet time when you’re actually calculating every action and movement because both your shoulders are still hanging off loose and no body sees it.

You rush a little bit, your joints dislocate. Everyone’s fine. You’re not. Accidents happen and insurance companies might reimburse you a certain amount but that’s not going to get you your health back.

Well, you can’t expect every other person on the street to know your story and that’s unrealistic. I’m writing this post based on nothing but fear, a very natural fear that doesn’t paralyse me mentally or emotionally (or even physically) but serves as a reminder to stay fully aware because that’s all I can do to protect myself. That’s all anyone with any form of disability can really do. And yet, despite all your awareness and presence, things happen. Shit can go wrong because there are so many other factors at play too.

Point being, let fear serve and guide you instead of  letting it paralyse you. Acknowledge fear as a self-protection mechanism and do what’s needed from there. Whoever says they’re not afraid of anything are definitely lying to themselves and the world.