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.
Just a mini reminder to stay true to your own journey and pace yourself. Time is never in our control but how we use time is.
March was a busy month and I’ve been feeling more exhausted than normal (I know, I know, for those without chronic illness, this must hardly make any sense). The good thing is that whatever was planned for March is all done and that’s one big step in the right direction. However, before I could even allow myself to fully rest, there’s stuff lined up for April which I want to tend to. Half of me is excited and the other half just wants to hibernate because you can never get enough rest when your body is constantly using up a lot more energy.
It feels like there’s hardly any time to recuperate from March! The workaholic, Ms. Productive in me wants to take charge and make things right and “fix” everything and never stop (this is the older version of me who thought she had it all figured out because at one point she did and guess what, I’ve grown to listen to her less and listen to my body more) because time is running out or something. The truth is, it always feels this way unless I take the initiative to really create space and find time for selfcare – to think less in terms of productivity and more in terms of peace, love and what makes me smile from within.
It’s funny how we think we have control over time when all we have control over is how we respond to it. Time continues to fly and do its thing and either we learn to work with it and use it in a way that aligns with our true selves or we let it freak us out and allow it to paralyze us further.
Just because someone else is doing more on Instagram doesn’t mean you are doing less or not doing enough. Trust your effort, validate yourself and keep moving ahead one little step at a time.
Just about three years back, probably towards the middle of a very #dark phase of hating my body, I swore upon myself to never travel until I felt #ready. Unfortunately, I didn’t believe I’d ever feel ready enough to live in this body or #travel with it. While most people of my age were getting excited about traveling, I was feeling trapped in a body that only looked normal.
There came a point where I didn’t want anything more but to be able to look after myself, #trust my body again and be okay with where I was at. It was such a #challenge because there was absolutely nothing trustworthy about my body. I realized I could care less about seeing the world or chasing goals if I couldn’t even wash my own hair or walk around my own house.
I left a part of my past behind, took a couple of major leaps of faith and started living on my own. I decided to create a routine which provided me with the kind of stability that my body lacked; that my #environment lacked too. The idea was to build myself up again, to become comfortable with the cards I was dealt , to #empower myself and honour my #health. I had to re-imagine a life that is different and also learn to believe that different doesn’t mean bad.
After three years of the very same #routine and #lifestyle – Physiotherapy, Pilates, allopathic medicines, complimentary therapies, lots of positive-self talk, re-connecting with my creative self, allowing myself to cry and experience grief fully, accepting limitations, fighting for instead of against my body, letting go of people, places and situations which didn’t serve my new self anymore, feeding myself nourishing food, learning to find reasons to be grateful — and something shifted within me. I suddenly craved a #change, a mini #break from this routine that I had created for myself. Some time away from it to see how far I’ve come.
I’ve got more information now. I can see the #progress I’ve made and there’s more to learn. To be honest, I don’t know when I’d feel ready to travel again and this time it doesn’t matter at all. It doesn’t make me feel any less or more because I believe time will come when it must.
This place is beautiful. I don’t want to pretend and say I’m fine but I can say it’s all been worthwhile. For this time. I’m officially tired now and I don’t know how I’m even alive.
When reality hits you in the most unexpected moment,
Let go. Again.
Breathe once again.
Let go. Once again.
Everything is okay in this very moment.
You are okay.
Can someone please build me a mini robot that does deep tissue massage and kinesio taping? Thank you very much.
Day six #bedbound: Back is still at 8/10. Burning. Aching. Spasming. This pain won’t let you rest. You can’t recover without rest. It’s a never-ending, vicious cycle. It hurts so bad that you wish you could dismantle yourself and put your back away for a while. But you can’t. There’s absolutely nothing to make it any better. All you can do is what you always do – listen to the pain, tend to it and relax into being where you are at. Stay present.