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.
(What it’s like being single with a chronic illness)
Every once in a while I come across someone or the other who would ask me questions like:
“Why are you still single?!”
“Have you seen yourself?!? You can find anyone! Just go out! Go online! Why do you want to be alone? ” (that’s really beyond the point)
“How are you managing without a partner?”
“Isn’t it better to have someone around at least?”
“Don’t you get bored alone?” (I honestly don’t)
“Don’t you want someone to help you get out of bed?”
“Why don’t you just go out and see what comes to you!?”
Here’s the thing about dating and chronic illnsss – it’s not straight-forward. It’s not ONLY about feelings and love anymore. Living with pain 24/7 and dealing with an illness that’s going to be with you for the rest of your life (well, till science finds a solution or a miracle takes place) changes your perspective about pretty much everything. Every day is a new day and life is as predictably unpredictable as it can get.
What is considered rather “straight-forward” in the context of dating now involves much more complicated factors like compatibility in terms of lifestyle and practicality of the relationship. Often, these are also the topics people prefer not to discuss in detail — who wants to talk about how it is like to wake up and sleep with so much pain?
Who likes to talk about guards, slings and tapes?
Who wants to run through your pain management programme?
Who wants to know what it’s like to have to take a break during showers because of fatigue?
Who wants to discuss how to deal with an arm that sublaxes? Or what to do when your back flares up and gets you bed-ridden? Who wants to listen to your prognosis?
Who actually wants to educate themselves about someone else’s health?
Who wants to know what it’s like to make a different career choice not because you are incapable, lazy or not ambitious but because your health must be your priority? (I believe it’s a choice I’ve made for my health not because of it)
Who wants to know what it’s like to pretty much build a life all over again from scratch?
Who wants to understand what it’s like to be hopeful, grateful and practical at the same time?
Who’s willing to talk about responsibilities? Partnership? Who wants to talk about hospitals, bills, insurance and disability aid when there are so many other fun things to discuss? Right?!
Who’s willing to see what an invisible illness really looks like?
And most importantly, who’s going to be able to look past that illness, despite it being a major experience for you, and realise that it’s just one aspect of who you are?
Unfortunately, the things that people usually shy away from are exactly the things that need to be talked about. That’s the case with all of us but even more so when you’re dating someone with a body that doesn’t function as per “normal”.
From the last so many years of literally dating myself, hating my body (for a while) and now respecting it so much has taught me such valuable lessons which I wouldn’t exchange for anything. I’m very happy that I chose to give ‘me’ all the time I deserved. Somewhere I had forgotten how much I needed it.
There’s no going back for me anymore. I don’t regret choosing to date myself. I don’t regret deciding that it was time to be on my own and manage with whatever support I had and to make the best out of it. It was painful, every bit of it and yet I say this – i absolutely don’t regret experiencing loneliness and realising how amazingly freeing it actually is. It has brought me closer to who I am as a person, who I always was and has opened doors to so many opportunities.
I couldn’t quite have imagined sharing my story with everyone and being of help to some people had I let things happen the way the old me thought they were “supposed to be”. I wouldn’t have been here feeling somewhat at peace with everything. I wouldn’t have been able to grow out of fear, trust myself and be grateful for all that I have without leaving a few things behind.
Dating myself for years altogether has only taught me patience (what’s an empowered patient without patience anyway?) and the need for acceptance of self. If I hadn’t learned to accept who I was becoming, I wouldn’t have become so clear about my wants and needs. If I hadn’t learnt to let go of the things that no longer served me, I wouldn’t have been able to embrace my new reality. I most definitely wouldn’t have been able to create space for anyone else in my life.
I couldn’t have imagined having someone else with me through the last few years. I don’t think it would have proven to be helpful for either of us. In some ways, I’m grateful that I spent those years alone, figuring so many things out all at once. Now that I have enough space to embrace who I am, I have enough space for someone else too. Keeping that in mind, no matter how sad it can sound to some people, my full-time job will always be self-care and I can’t be with someone who wouldn’t see that.
It’s really ok to be single and deal with a chronic illness AND it is ok to be sick and be in a perfectly healthy relationship. What matters ultimately is whether you get to honour your health.
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,
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.
I feel like a zombie. A zombie who ran a triathlon, won the first position and is now fatigued out of her brain. Wait, do zombies have brains?
Well, here’s the thing. I can’t make sense of how yesterday was – it’s as though I just sat on my bed attempting to read a fiction love-story (I don’t read fiction, by the way), with my new glasses on and the day just went by. I went for Physiotherapy but that’s really it. My brain was numb and heavy and light and cloudy and foggy and misty and messy and everything all the same time. And my body was over-worked, over-drained and over-sensitive. Towards the end of the day, I even started running a slight fever out of nothing but plain tiredness. It was like my body saying, “alright woman now that’s enough.. Stop before I stop you in ways you don’t want to stop.” Except, it didn’t sound as threatening as I’m making it sound.
I’m still recovering from that intense brainfog and still have a residual disoriented sense of the world around me today. Half of me is still floating brainlessly. Thankfully, it was such an easy day at work today – I had the whole studio to myself and I had done what needed to be done so I survived and even managed to take a couple of pictures – you know, when you’re in the right clothes and in an empty studio, it’s okay!
I also managed to get through a short session of my regular Pilates session today. That makes it 4 short sessions this month and that’s freaking brilliant! I’m starting to get back to my routine slowly but I’m so exhausted it’s even funny. I look back and I wonder, ” how on earth did I manage 2 sessions of Pilates per week, and Physiotherapy, and part-time work, and walk to work and cook for myself and work on some parts of my business before my knee got injured?!?”
No idea. I swear I don’t. Did I actually manage all that?!
Our body is constantly changing and we have to adapt to it. To be very honest, I have to give myself a few months and then review to see if I need to make some changes to my lifestyle again. At the moment, I’m trying and I wish to continue trying. That’s all I know.
Most of us physically fragile people are gifted with a brain that’s very strong and we’re capable of dealing with so much more. I see where there can sometimes be a clash between our mind and body but frankly, the lesser the clash, the less we suffer. The more tuned in we are with out needs, the more tuned in others will be with us too.
I’ve got a very busy next three weeks. My brother’s back this Friday for a short summer break and I also wish to get through work and other not-so-fun stuff. Again, I’m not sure if I can and I have to keep checking in with my body.
Do send me some good vibes and extra spoons because I definitely need them right now and possibly for the next month or so. Though there’s still a longggggggggggg way to go (I’m questioning if there even is a destination), I’m very proud of where I’ve come today. It’s not been an easy journey but I’ve made it here. Just like most of us. With that slightly positive thought in mind, I’m going to get into bed and hope I get a good sleep. I think I’ll be ready for tomorrow.
1) In March 2016, I took up a part-time job in order to do my part, to support myself (to the best of my ability) while other things fall into place. It was back in October 2015 when I made this decision, partly because the circumstances called for it and largely because I knew it would take me one step forward. I’m sharing this today because I’ve made it through 3 months and am still hopeful about continuing.
2) Before January of 2016, I had no clear idea on how insurance really worked. I was always curious and had many questions, though I never got a chance to find out more. Let’s just say, for reasons which can’t be stated. I had to take it for what it was until a day came when it was time to re-apply for an insurance. This time, considering the fact that I am ‘chronically sick’. Here I am today, figuring it all out by myself, going through all the application process and trying to prove, even though I have a big file full of reports and letters as evidence, that I need a good coverage.
3) I went through a much draining process of renewing my PR status and I’m so happy and relived to share that my #faith won over the negativity that was build around this whole topic. I’m extremely #grateful for the extended & renewed status and I’m also expecting a much greater change in the near future which could potentially open more doors for me.
4) While all this has been keeping me very busy and taking a huge chunk of my energy, I’ve been thoroughly enjoying putting together and conducting new classes. To be honest, I wish I could do even more and work towards my dreams of making a difference out there. The fact is, reality demands something else out of me right now & I can’t go any faster. It’s never a question about lack of creativity or determination; it’s about physical ability/limitations. I think there are many valid reasons to slow down but I don’t see a reason to stop.
5) And of course, I have been very committed towards my full-time job of self-care 💕
There’s so much I wish to write about each of these points… I’ll just leave it for some other time.
Good day, all!