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

Thank you


I just feel like saying a big thank you to all those who've loved me through my struggle with finding a diagnosis, leaving an old life behind, resisting a new one, accepting and coming to terms with where I'm at and making drastic lifestyle/career changes in order to manage my health.

Thank you for loving me despite my chronic illness.
Thank you for learning to grow with me ❤️

You didn't have to be family to promise that you'd be around whenever I need – you just chose to be there for me. Thank you!

What it’s like being single with a chronic illness

(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.

Love,

MD

❤️

(What it’s like being single with a chronic illness)
Read the article on themighty.com

Day 26: Bedbound

It seems my lower back is just going to take its time to heal and I’m slowly starting to ease in. Once it starts to show signs of recovery, I’m confident I’d be able to build it up all over again (you fall, you get hurt, you accept, you adjust, you love, you heal, you put yourself together and you keep going) because I’ve done it time and again.

I might need to investigate if there’s any new injury or anything to worry about as this has been a rather severe back flare up in the last few months. Let’s hope there’s nothing new in there. I plan to get it checked in a few days, once I get through a few more sessions of physiotherapy and Ayurveda treatment to see if my back responds. I postponed getting it checked earlier because I’m aware of a couple of factors which could be hindering the recovery process.

I’m done resisting the present, hoping and expecting my back to respond just because I have a time frame in mind. I’m slowly easing in, accepting that despite my plans for January 2017, there was a need for me to slow down. And here I am finally allowing myself to. I can’t be more grateful for the support I have right now which makes it possible for me to give my back a break for the time being. I’ve dealt with a great deal of instability for years altogether and realise the importance of having support/stability AND also being grateful for whatever of it you have.

This is not to say that I can wait for too long to feel more like myself again. I feel like a zombie version of myself right now! Truth being said, nobody enjoys experiencing so much pain or dealing with limitations. I seriously despise being unable to do things I’ve worked so hard to get myself to over the last couple of years. I think it’s always good to pause as long as you don’t quit. The  present situation  calls for me to rest, to let go more so my back heals and regains its strength again. I know I’ll be back on my feet soon enough.

Love to all,

MD

❤︎

To be here 


And today I realized,

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. 

Love,
Manasi

GBM My Style

It’s Ganesh Chaturthi today, the birth day of Lord Ganesh and basically …

I don’t know enough about it (but Google does!).

(Oops.)

However.

What I do know FOR SURE is this –

🔸This day always fills me up with excitement each time

🔸It’s an occasion that used to bring my entire family together and I’ve got some incredible memories of this festival

🔸I am aware of the basic rituals – a little prayer that you do, certain dishes you prepare (I’m not sure why you make each), general overview of the days you celebrate (5,7 or 11 days I think) it.

🔸It is a great opportunity to dress up

🔸I miss my brother

P.S. Whatever you’re reading right now is being typed as I get ready

I wouldn’t call myself particularly religious; definitely not like my parents or family. I think I am “religious” about things that work for me and I believe in them. I’ve always been given the freedom to have my own belief system and hence I am fine with everyone else choosing what works for them – whatever helps one feel happy and peaceful from deep within + helps him/her get through the hardships of life. You might have guessed  by now that religion is really not one of my favourite topics.

Having said all of the above, here’s how I’m doing it –

I’ve set up my altar, with a beautiful statue of Lord Ganesha resting on coral beads. I haven’t specifically decorated my altar because my alter is rather personal and symbolic in itself. Every little thing on it is there for a reason. All I did was just cleaned it up, added some fresh flowers, lit some candles and rose incense sticks – that’s it.

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Beautiful coral beads

I’ve invited a couple of really close friends over to my house. We’ll sing along one or two devotional songs (okay okay, I do know the lyrics of some. It happens when your family has been singing it for years you know?) and have a mini dinner, which we’ll probably call for. My dinner is going to look rather different from their’s as I’ve got a SIBO test on the very next day. More on that next time.

Oh, here’s an important bit. We’ve decided to dress up too because HEY!! We don’t get a chance otherwise! Who gets a chance to wear a nath these days anyway?! Nath, by the way, is a Maharashtrian style nose ring and I’ve been dyingggg to wear mine (I don’t get a chance to wear it these days anymore since I don’t perform much). I can’t wait for my friends to show up now!

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It took me approximately 2 hours including 4 ice-pack breaks to look like I do here

As prashad, we’re having (my friends) some dark chocolate (instead of these sweet rice dumpling kind of a thing called ‘modak’) and I believe Ganesh ji is going to like my modern twist to his birthday celebration.

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How about a ‘modak’ shaped oversized Hershey’s Kisses?

I also plan to FaceTime my family and my close friends later in the evening. Everyone’s all over the world this time so I’m freaking thankful for FaceTime. I’m beyond grateful for a small set of close friends I have today – they’ve done so much for me up till date. Sometimes they willingly become my extra pair of hands, helping me with things I simply have no physical ability to do. Other times, they patiently sit next to me (they get me dark chocolate quite often) while I just lay down in pain. I can’t thank the Universe enough for a bunch of loving people around me.

Let’s see… I think that’s it. That’s really it. That’s my version of a mini Ganesh Chaturthi celebration in my sweet little apartment. We’ve got Ganesh ji + positive vibes +  food + friends + a grateful heart + good clothes + technology to keep in touch with the rest of the world – what else can anyone ask for?

This photo was added later

By the way, in case you’re wondering,GBM stands for ‘Ganpati Bappa Morya’, which supposedly means ‘Lord Ganesh Bless’. For me, it’s something you happily and enthusiastically yell out a number of times through the course of this festival.

Happy Lord Ganesha’s Birthday everyone! *Yell GBM now*

Be here today, be here NOW

The following video got me writing today’s blogpost. I hope you guys are able to view the video but if not, look for “Be grateful for what you have” video by Bright Side on YouTube. I’m guessing you’d find it there.

—-

I wasn’t expecting the end to be the way it is.

It made me feel a little heavy-hearted, because I’m aware of how some stories of EDS, chronic or rare illnesses can end. Within that moment of sudden sadness and mixed emotions, I saw the importance of staying present. I’m sure that had I not brought my attention back to the present, I’d probably have drowned in fear and forgotten that I still have today to live, to do what I can do with what I’ve got and to be grateful for all of it, not because I might not have it one day but because I have it today.

I’ve noticed, being grateful for something because you might not have it someday also to some extent, comes from the underlying fear; fear of not having enough or something. I find that I’m calmer, more capable of dealing with things and certainly happier if I show gratitude for what I have today, simply for having it today.

People ask me all kinds of questions, some questions being far more sensitive than the others and some I only have one common answer for, “I don’t have an answer yet.” A lot of them simply want to know what future holds for someone with HMS- EDS.

“What if you end up on a wheelchair?”

“What about having a family? Will your body be able to handle pregnancy?”

“Your illness makes you so high-maintenance. All the cab rides, daily medicines, Pilates and physiotherapy etc etc. How do you plan to continue paying for it all throughout life?”

“What if you have to depend on someone for the rest of your life?”

To some questions, I’ve got answers which will change over time. That’s because there is a factual and a personal component to them, both of which can change a situation (or an answer) to a large extent. Some of these questions are extremely valid, but if I were to be very honest, all I can say is that as a patient, there is only so much you can do. 

Most of the time, those patients who come across as brave or courageous are in fact the ones who’ve thought about it all and have then made a choice to come back to the present because they also realize that they themselves do not have a complete answer. We are all aware of the uncertainty but we choose to become comfortable with not knowing enough. Because we don’t.

No one does.

Over the years, my body has taught me the importance of doing everything I possibly can today and letting go at the same time, and seeing how life unfolds from there. I’ve had to work on becoming alright with my disability and work with my ability to do what I can do, and to wake up every morning and get through the day. For the kind of workaholic and detailed planner that I used to be, and for the kind of environment I grew up in, it has taken a lot of effort to channel my energy into the present more than the future and to come to terms with the fact that certain things are beyond our control.

You see, that is why, it is so crucial for someone with a strange illness (especially) to attempt to find that balance between preparing enough for the future and staying true to the situation today, both at the same time… to be aware of what the future holds and to live every moment today has to offer, to the fullest. Anything can happen a year (or years) from now, a month from now, a week from now, a day from now or even an hour from now, right?

Thanks for reading

Love,

Manasi Dalvi

❤︎