Some people grumble that roses have thorns; I am grateful that thorns have roses. ~ Alphonse Karr 🌹
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 💗
Beautiful day. Beautiful space. Beautiful people. Beautiful artwork. Beautiful lessons.
Here’s me setting up everything, one pen at a time. And check out my wobbly left shoulder holding on to its dear life. 🌷
I had such a wonderful time teaching the Mandala Making Workshop last weekend. Somehow, those two hours made me feel more alive than anything else has in more than half a year now. The most beautiful thing about the experience was the very fact that it brought people from different walks of life together, for one shared purpose: to give a break to their busy minds and let their creativity run wild.
We had a retiree who was looking for ways to keep her mind active, a yoga teacher exploring ways for self-expression, a mandarin language teacher who had forgotten that she can create, a computer engineer who needed her calculating brain to quieten for once… none of them had ANY background in mandalas or pattern-making, hadn’t done much research and yet they were there because it seemed right…I mean, isn’t this just WOW?!
Even though it is not uncommon, I am still so amazed at how the whole process shifted something for some of the participants. For me, being there and seeing that in itself was such a deeply moving experience. To be honest, I’m still letting it all sink in. Everything from the place, to people and to the tea we had seemed right. I don’t think I could have asked to be anywhere else on that Sunday morning but there, teaching, sharing and learning. I’m fatigued out of my mind and yet so full in my heart. Let’s see how long it takes for me to recover from all of it physically but I know I’ll be okay and I’ll do this again when it’s time. My body needs rest now. Conducting a workshop after half a year of being 90% bedridden is a big step ahead for me. And it didn’t just happen overnight… this big step comprised of many, many small steps over the last so many months and years…
One day at a time
One step at a time.
(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.
I thought this piece turned out pretty alright considering that I’ve got one hand in a sling and didn’t use any measuring tools.
I could only manage making the outer circle with a compass — trying to deal with measuring tools when your arms and back are killing you can be a huge challenge (#pastmemories).
I’m going as free-hand as possible till then which is fine as it gives me more practice and takes away unnecessary physical stress at the moment. I’d love to give this another shot once I start to feel better. 🌞🌙
“She was like the moon — part of her was always hidden away.” – Dia Reeves
I enjoy making my mandalas as free-hand as possible. Unless I’m making it for someone or teaching a class, I don’t quite bother with guidelines too much. Once you get a hang of it, you intuitively know what to do next. Each one of us knows it and we get better with practice (honestly, I don’t think practice needs to make perfect. If practice makes better, that’s perfect in its own way). There’s barely any “planning” required if really just go with the flow. The best part about making mistakes (if that’s what you want to call them in the first place) while creating patterns is realising that you have the ability to fix them without having to go back. Without erasing or undoing. You adapt, you figure out ways to enhance what you have and work with it.