Hello there spoonies and other friends!
So while I was off social media, I took some time for myself and made sure I brought my interaction with people to a bare minimum. I met just a few people apart from my pilates instructor, physiotherapist, ayurveda therapist and naturopath but I made sure to look at my phone and laptop less. In fact, I wrote more in my journal and typed less on my phone.
Some of the experiences I had just over this week made me think through a lot about how far I’ve come and how far I’m yet to go. When you really make an effort to disconnect with the noise around you and connect with what is already within, you finally hear the noise within you loud and clear. And if you dig deep enough, and have the courage to dig further, you find that there’s so much wisdom residing in there that you barely ever need to seek answers from outside. A lot of what we need to know, we already do.
So, obviously, I made a list of ten things that came up for me in the course of this one week. I took some time to journal and think through each point even more and I figured I have so much to share and so much to learn at the same time. I wasn’t too sure if I wanted to share this list with everyone but I’ve made up my mind to do it anyway. Who knows, it might resonate with someone out there.
1. Listen more; to your inner wisdom and to those who need to be heard
2. Express more gratitude
3. Have the courage to ASK for your needs to be met
4. Be brave and say ‘NO’ if/when necessary
5. Preserve your energy; it’s everything
6. Reframe your past, refocus on your present and reimagine your future
7. Return to the thoughts of peace, love, health and success
8. Validate yourself for every progress you’ve made
9. Make your own decisions. You know what is best for you.
10. Trust that you will always be supported if you’re willing to jump off the cliff. Keep doing your best and being your best even if you’re at your weakest.
The most important thing I realized was that I NEEDED this time. Unless I make a conscious effort to create a space for myself, I will always be a part of something I don’t need to be a part of. Love, Manasi ❤️ #chronicillness #selfcare
There’s so much I’ve been thinking about lately and want to write about but my health has been keeping me terribly busy and I’m almost alway too exhausted for anything else.
My back, shoulders and knees have been screaming at me all at once with my right wrist, left thumb and neck taking turns. It’s tiring on all levels, especially with the brain fog kicking in every once in a while. Maybe this is the new exhaustion and fatigue level I need to learn to work around now that I have a new “normal” or new baseline to consider. It feels like I’m either resting/doing things that involve looking after myself or teaching/working on classes but to be honest, there is so much more going on in between! I’m doing a lot and I need to keep telling myself that.
Sometimes in the midst of trying to figure out everything, I forget that I’m doing my best and that there is only so much I can do given the circumstances.
Keep on going on! You’re doing everything.
Have a happy weekend 🌺
I fell at a shopping mall and hurt my knee (falling down or getting into an accident is a big nightmare from someone like me), I saw a beautiful cat get hit by a car and realized how I couldn’t do much to save her only due to my physical limitations (post coming up) and the emotional pain of partial dependency and coming to terms with it you when you’re chronically ill (none of us choose dependency as option one. We didn’t consciously ask to be ill or unhealthy. And while we find ways to adapt and make peace with it because health is wealth, look at lessons and opportunities to evolve, it isn’t an easy process. Being sick is hard even if we figure out ways to make it slightly more tolerable. It isn’t easy knowing your strengths, your capability, your personality and attitude, your education, your drive and passion and then having to accept some amount of dependency due to physical limitations/dis(abilities). Do not get me wrong – I don’t regret having made certain choices and decisions, all I’m saying is that these were some of the most difficult and brave decisions I’ve made in favour of my health and I’m glad I did. I don’t know where I’d have been today had I not followed my guidance, despite all the external resistance. Just because something is right for you, doesn’t mean that it will be comfortable to come to terms with. However, you feel at peace deep within knowing you’ve honoured your health/stood up for yourself) came up for me through a rather time-wise unexpected, but intuitively anticipated news.
I won’t say anymore.
For now, I just need to be present and allow these emotions to run through me. It’s okay to have all kinds of ‘feels’ and feel ridiculously uncomfortable sometimes. Trust the process even if it seems unbearable for there is light within you and at the end of the tunnel. Feeling is being human, feeling is being alive. Let yourself have the time to process/work through emotions and once you’re ready, stand up, show up and take necessary actions to move forward.
(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’m quite at peace with where I’m at.
Of course, there will always be things to work on and move towards,
and every once in a while I will get overwhelmed with everything that’s going wrong and experience a meltdown for a while – it’s part of the healing process too.
But to be here,
present in this very moment,
with a fragile body that hurts twenty-four-seven,
and still feel alright deep down
is nothing short of an achievement.
The way things were going,
I didn’t think it was ever possible – this ability to be okay with a disability and exist without too much dependence on someone.
Nature always does something to me. It gets me thinking (in a good way) and in some ways, brings out the real me in me.
As I sat there by the water today, looking at the magnificent colours around me,
I knew it was all okay. And going to be okay.
I was there with my knees swollen but my heart was full of love and gratitude.
All that I need in this phase of life, I already have.
A big thank you to all those who are a part of my journey.
You’ve got this.
Had a terrible experience at the hospital today – I had to wait for some 4 hours to complete a breath test, which required me to blow into a bag every one hour. I knew the procedure but little did I know that they won’t have a place for you to rest while you wait.
Perhaps next time I’ll have to ask in more detail, though I really thought that the full test will be carried out more professionally. I can’t be waiting around at the hospital, just sitting on a couch that looks comfortable to everyone else. When your spine is causing you pain which makes you wonder how you’re even alive (I know, doesn’t show on my face or the last few photos I posted) and you don’t get a place to just lie down, you want to cry. The thought of lying down on the floor did cross my mind a couple of times. The only reason I dumped that idea was because I would’ve had a difficult time standing right up again. If I can’t sit, walk for too long or stand much and I just need to lie down, are you seriously telling me that you don’t have a bed for me?
The only option I was given was to pay $50/hour for a bed at the A&E.
Thankfully, I am done with it and I’m back home resting in my own bed. I’m looking forward to my Physiotherapy session later – I don’t think I need anything more than that at this point in my life. The last thing I want is for today’s experience to get me bedbound again for more days to come. It’s time to rest up, recover and try to get back on my feet again by this evening. So glad that I had the energy to get through last night with my friends – couldn’t have asked for a better evening 🙏🏼✨
Lots of love,
Day six #bedbound: Back is still at 8/10. Burning. Aching. Spasming. This pain won’t let you rest. You can’t recover without rest. It’s a never-ending, vicious cycle. It hurts so bad that you wish you could dismantle yourself and put your back away for a while. But you can’t. There’s absolutely nothing to make it any better. All you can do is what you always do – listen to the pain, tend to it and relax into being where you are at. Stay present.
You know you’re a spoonie when you wear your pretty little black dress to bed and feel okay about it.
Alright, jokes apart, it’s my fifth day in bed and my back is still spasming. I’m okay to lie down or stand up for a bit but I just can’t sit or walk around as yet. Yesterday’s Physiotherapy and dry needling session gave me some relief and now my muscles are tight and pretty much knotting up all over again! I’ve got a couple more days before my next session and must manage till then. Already looking forward to it.
Happy resting, my dear spoonies!