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 (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 💗
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.
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🌷
Happy Rare Disease Day to all the wonderful spoonies out there!
I’ve been too fatigued and in so much pain that I just couldn’t get myself to post anything ,but, seeing my Instagram feed filled with so many amazing posts trying to create awareness for rare diseases brought me immense comfort and a sense of relief – we’re definitely not alone. I’m so thankful to have come across such a courageous and inspiring community on Instagram. Knowing that I am #rare and yet there are so many others out there just like me gives me strength to keep going, even through the most miserable of my days.
Here’s to finding cure, and until then, having hope and faith for a much better future.
Good news – There is no new or major injury. I’m still maintaining my count at 9 affected joints (major) and my spine does not show any significant injury caused by me going out for dinner on December 31, 2016.
Not-so-good news – My spine has been degenerating over the years and there’s not much that can be done about it. I’ve got 2 disc protrusions, reduction in intervertebral disc height, disc desiccation, osteophytic bone ridging, mild scoliosis, mild foraminal steniosis, degenerative hypertrophic arthosis of facet joints, grade 1 anterolisthesis, mild nerve impingement which is worse on the left and correlates with all the symptoms I experience.
Conclusion 1 – None of the above can be considered “normal” for a 26 year old. While none of it calls for any urgent medical attention, it does call for personal attention and understanding. It also isn’t a surprise because EDS is a degenerative disorder so your body will inevitably tend to degenerate faster than the rest. The idea is to work on preserving, maintaining or trying to slow down the degeneration and avoiding other injuries.
Conclusion 2 – From my first spine MRI in June 2012 to the second in July 2015, my spine showed a number of new things to take note of. The degree of degeneration from 21 years of age to 25 was absolutely abnormal. However, July 2015 to February 2017, while there has been an increase in nerve impingement, the other main points of concern remain the same and of the same degree. This in itself is something to feel good about and I can’t help but correlate it to how my journey has been from 2009-2012-2015-2017. I can’t help but to believe that the choices I’ve made, no matter how painful, have been in the right direction. It’s extremely validating and I’d understand if no body understands. Most of it required a great deal of consistent internal work + faith in the future + action in the present + open-mindedness to try things which seemed right, all from a place of acceptance.
When you’re dealing with a connective tissue disorder, meaning that your body produces faulty collagen resulting in weaker connective tissues, it is important to note that every little issue, minor structural or musculoskeletal change and degeneration can add up and translate into immense pain and inflammation. The same symptoms might look and “feel” very different in a healthy body, resulting in a vastly different experience. Unfortunately, not all doctors are aware of how every patient experiences a disease differently as it may not necessarily fit their knowledge from medical books. Hence, I think it becomes extremely necessary to track your personal progress, the rate at which things are changing, and the degree to which they’ve changed as part of your personal illness/disease management programme.
Moving forward, I’ve got two options:
1. Go to a spine specialist and get injections in my back to help break the pain cycle. As much as these tend to help others, people with connective disorders may not respond too well to them. Coming from personal experience, I can say they did nothing for me and I don’t feel a pull towards trying them again. In fact, apart from other symptoms, the fact that my body didn’t respond “as expected” to some injections + some minimally invasive procedures was what pointed us towards the direction of my diagnosis. I also know that I’m quite sensitive to certain procedures requiring contrast or sedation and end up getting random infections.
2. Continue to give my back the time to heal, continue doing what works for me in terms of pain management (physiotherapy, ayurveda therapy, essential oils, medications, meditation, herbal supplements, respect my nap and bedtime etc.), and slowly build it back to where it was a few months back. This means that I introduce a few minutes of walking every day, a bit of hydrotherapy, then a 30 minutes of Pilates session, then a 60 minutes session and finally 120 minutes of Pilates per week as my back starts to respond. From there on, I start to re-introduce and take on more work and other activities.
Of course, I’m going with option two. Even if option two means having no answer as to WHEN exactly things would improve, it makes me feel a little more in control of the choices I make. So while there is a fair amount of uncertainty around it (which isn’t in my control), my experience over the last few years and the progress is definitely considerable enough for me to trust that I am capable of working with my body and building it up again. As I’ve said in my older posts, I don’t enjoy needing help for things I’ve learned to do on my own or even having to take a few steps back in terms of work again. However, if that’s what my back needs right now, I must come to terms with the present. Denial or distraction haven’t done any good for me and I’m not going in that direction anymore.
Lastly, I must say that I am so very grateful for the love, support and guidance I’ve found/ had over the last few years. It’s just been a small group of people working with me, volunteering themselves to help, learning to accept my limitations as I learned to accept them myself, trusting me for knowing my body and needs the best, and, never failing to remind me in some way or the other that there is so much more to life and so much more to me than a life-altering chronic illness.
Love to all,
If you can read your own scans and reports, understand the terms and see how they correlate to your symptoms + ask appropriate questions + are aware that a patient’s real-time experience doesn’t always match the descriptions in medical books (one size NEVER fits all), you can be rest assured that chronic illness has changed you for life.
Update on my latest MRI coming up soon. Currently too bloody exhausted to type more.
Love to all and stay well!
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.