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 💗
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🌷
85 % Dark Chocolate + Coconut Popsicles. Pure bliss! 💕
I could’ve done with more dark chocolate but you know, I didn’t want to push it. I made sure to stay within the allowed quantities of each ingredient and frankly, these just turned out magical. As usual, my friend couldn’t believe these were SIBO friendly and this time, neither could I.
Here’s what went in them:
6 pieces of dark chocolate + 8 tablespoons of coconut milk + 1 cup of coconut water + 2 tsp pure vanilla essence + 1 tbsp raw clover honey + 3.5 tsp raw Cocoa powder + 2 tsp pure coconut oil. This recipe made 4 popsicles.
The easiest way of making them would be to blend all the ingredients excluding dark chocolate, pour into your moulds and pop them into the freezer for about 8 -12 hours. Before serving, melt dark chocolate + coconut oil and drizzle over the popsicles. You could also just dip the popsicles into the melted chocolate if you wish.
I made these in three parts because I wanted to add extra dark chocolate pieces inside each popsicle and also have bits of plain coconut cream in every popsicle. So we had the main body, chocolate flavoured coconut cream + parts of honeyed coconut cream + pure dark chocolate pieces and drizzle.
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.
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.
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.