If you ever forget how strong you are, pause for a moment and look back – look at all the times you fell and stood up, not just stronger but courageous enough to try over and over again. Look back at the times you could have shut yourself to love and pain, and built a wall around your heart, but you chose to remain soft and let light in anyway. Look at the times you showed up; for people and yourself. Your story makes only a part of you, and the lessons your learn and how you evolve, make up the rest of you. Ask yourself, “how has my story changed me for the better?” If ever you doubt your strength, your ability to love, your discernment and authenticity to walk your own path, look back… look back and see how far you’ve come. It’ll make it easier to continue moving ahead if you realise how unstoppable you’ve been up till now.
#strength #soft #courage #grow #love #acceptance #life #chronicillness #relationships #chronicillnesswarrior #ehlersdanlossyndrome #hypermobility #friendship #pain #suffering #family #illness #rare #light #journey #pause #unstoppable #keepgoing #faith #trust
It’s been four years since this photo and yet I get goosebumps just thinking about where I was at, both physically and mentally.
I was falling #sick with a cold or a stomach flu every other week, reacting to medicines which were supposed to help, afraid to be alone in my own bedroom, finding it hard to eat, needing help to wash my hair and sometimes even to brush my teeth, hating on my body for being fragile and weak, struggling to protect myself from people, fighting with school because they had no policies in place for people with medical issues, crying myself to bed every night, falling asleep with a strange emptiness in my #heart, waking up to feeling suffocated, hating on my creativity because I couldn’t pursue it the way I wanted to, feeling like every day was an absolute drag… I was claustrophobic in my own #body and #mind.
I wonder if this photo says any of that.
2013 was the year I knew I was done with everyone and everything around, including myself. Something needed to shift and I didn’t know what or how. All I knew was that life couldn’t possibly feel the way it did. Despite feeling like a hostage to my own #existence, there was a glimmer of #hope, a constant knowing that nothing was going to change until I decided to step up to where #life was heading. Stepping up at that point meant pausing and for once allowing myself to let it all sink in. Nothing was going to be anything like I had once imagined and I had to come to terms with that. I couldn’t distract or push myself anymore and I felt horrible. Who thinks about pausing/stopping at 23, right?
The thing is, some of us reach a point in our lives when we are faced with circumstances so real we simply can’t look away from them. Greater things are at play and our personal plans and effort make no sense. Life keeps finding ways to force us to look at what’s being presented and leaves us with two choices – to keep #suffering by avoiding pain OR to acknowledge pain and learn to #rise from there. #trust #acceptance #health #mentalhealth #pause #rest #recover
Looking back, I suppose there were things I had in 2013 which lead me to be where I’m at today. The daily struggle and fight have definitely added to all that I have become as a person and in some ways I’m grateful for it (not for the fight but for what came out of it). Of course, gratitude seemed like the last thing on my mind at that point in time because I was in this terribly dark space. Practicing and expressing gratitude, learning to accept whole and broken parts of me and making choices that honour my health (both mental + physical) has taken time and conscious work. I still have rough days but I’ve made peace with the fact that harder days are part and parcel of learning to live with a chronic illness. Today, I know better than ever before that while life is capable of giving you 5 reasons to fear, hate, complain, it will give you at least three reasons to trust, love and grow.
Days of nothing but exhaustion.
People ask me where and how i find strength to get through days like today and while i have a long version of my entire journey up till now + my on-going process,
the shortest response i have is:
“With kindness, patience and love towards my body. It’s a struggle sometimes but sticking to a practise of self-care and self-work is a choice i continue to make every single day. And somewhere in between all that conscious work, i find strength, courage and acceptance.”
Throwback to when I could still swim and position my arms a little more comfortably than right now. And now even though I end up walking in the pool or swimming with every move calculated and rehearsed thrice in my mind, I still find some peace being in the water. There’s something absolutely healing about water and I can’t find words to describe it. Leaving behind swimming 15-20 laps a day was hard because swimming was my escape or meditation (and it kept me physically fit enough) I thought, until I couldn’t escape anymore. Until I couldn’t run away from home, from a space I could barely breathe or be alone in, to really listen to my heart beat and know I was still alive. Until my body forced me to stay in bed and find a way to deal with reality, with love and compassion for myself first.
Again, it doesn’t hurt so much anymore so I can actually share these things with you. In fact, this is so freeing, realising that I’ve learnt to let go of things I tried holding on to for a very long time, almost hoping they’d come back and fit together into this picture-perfect life; things that I thought made me who I was. Perhaps the way it happened wasn’t the best but I’m grateful to have realised very early in my life what truly matters. What I was never wrong about was that I was constantly seeking peace and a reason to be happy and activities like dance and swimming kind of gave me a taste of both.
Today, I am thankful my experiences have taught me that true source of peace and happiness, the kind of peace and happiness that makes you really glow, is within us. I can be in bed and in pain and still be at peace, still be somewhat happy knowing what I now know for sure. Getting here took equal parts faith (in my body and something bigger) and conscious actions (because even when you think you don’t have control, you still have a choice to remain stuck or take the next best step), and maybe a dash of sparkles. ✨
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.
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,
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.
On Tuesday, I was at the hospital from 9:30 am all the way till about 5:00pm to get a couple of tests done – MRI Enterography and Neck Ultrasound. I was given 45 minutes to down 3 bottles of 450ml each of barium sulphate, a slippery, kind of oily, thick but sort of translucent, dull white liquid. I thought I was doing pretty fine until after about 1.5 bottles, after which, each sip only got harder to swallow. I managed alright, I think. I’ve had worse tasting medicines before. It did seem like I was high on barium sulphate for sometime though.
The standard procedure for MRI Enterography involves also having a contrast liquid running in your system. It highlights abnormalities and inflammation much clearly and hence is highly recommended. This time round too, like once back in the past, my experience with having a contrast running in me wasn’t exactly pleasant. They struggled to find my veins, thought my veins were too thin, and practically fought to properly insert the needle. After about three failed attempts on my left hand, they tried the same on my right and finally managed to get the contrast going.
If I were to sum up my experience at the Radiology Department yesterday, I would say it was a total adventure, with prolonged waiting time and misleading information from every person we spoke to. They first got the timing all mixed up and expected us to reach earleir. Then a person told me I might get a diarrhoea after barium sulphate, another said nope, not at all. Another person said constrast was required and someone else said it depends on us. And, my reports, which were supposed to be ready within an hour took almost two hours to be ready instead. Total mess.
After a point, everything got really annoying and I couldn’t wait to get home. Exhaustion and pain simply got worse over the 7.5 hours of being out. I had to collect my daily medicines from another hospital nearby too. Thankfully, dad was around with me through the day.
So, it turns out that my MRI Enterography was normal, no abnormalities in my major organs – so that’s something to celebrate! However, the key question remains – if everything is normal, why am I experiencing all these abnormal sysmtoms?
Usual answer – we don’t know yet and we must take it one step at a time. I’d be lying if I said it doesn’t get frustrating; you kind of want to know what it is but you also don’t want it to be too serious. It’s then when you realise that you don’t have much of a control, so, you take it one step at a time. One day at a time. One test/scan at a time.
To be continued…