Tag: EDS

Update: New Website and New Blog

Manasi DalviLeave a comment

Hi there everyone! I know it’s been forever since I posted any updates on here. It’s not that things have been all well for me health wise but it’s just that I’ve been channeling most of my precious time and energy towards building and creating something new, which obviously leaves me with nothing for this blog. I still write on my personal Instagram once in a while and post on my stories, but that’s only if I really feel called to do it or I can’t wait to share Luna’s cuteness with everyone.

Going back to building and creating something new. I am a Certified Life Coach and I am in the process of creating a business from scratch. This time, I am genuinely praying to the Universe for some stability till I manage to get things up and running. But again, that’s not entirely in my control so I’m doing my best with what I have. My intention is to create something sustainable in the long-run so that my health and my business are somewhat in harmony. The thought of being able to work from my bed if I must is too exciting! I love my bed and we have a long-term relationship that I have learned to accept.

Honestly, to would suck to have come so far in terms of my health and personal journey and not be able to use all the lessons and wisdom gained to help others. I feel so ready to start speaking about and discussing things beyond just my physical health.

So, keeping in mind that self-care will always be my priority, I am trying to find that balance and re-create a routine that works for me. I’m noticing that I can only put it a few hours a day into my work (with pain still bothering me), and need an extra day in the week to rest all day (proclaimed rest day) apart from the weekends. Also, sometimes I wake up and I can’t function, so those days turn into rest days too.I’m being very intentional and directional in terms of my focus and energy, that includes also saying no to things that absolutely add no value to my life and my dreams.

My mantra of taking it one day at a time is still working its magic for me.

Now, the main reason I’m writing this post is to share my new website with you and also invite you to subscribe and share my blog posts. I’ll be writing a post on this new website on a weekly basis and in a few months time, I will also have a monthly Love Memo sent out. To be super honest, the work I’m planning to do and things I will be sharing isn’t for everyone, but if you’re interested in knowing more or my words resonate with you, please feel free to subscribe!

For starters, I’m going to be writing posts on topics like

🌼Radical Self-care

🌼Self-love

🌼Holistic Well-being

🌼Healthy Relationships

🌼Healthy Boundaries

🌼Family Dynamics

🌼Mindfulness

🌼Mental Health

🌼Healing from trauma

I will be writing on this blog from time to time but as I mentioned in the start of this post, I will be focusing most of my time and energy on the new, upcoming stuff! My personal Instagram is where you’d find most of my updates on health and life in general so feel free to follow me on @mdalvi15

That’s all for now.

Love,
M

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Update: New Website and New Blog

Manasi DalviLeave a comment

Hi there everyone! I know it’s been forever since I posted any updates on here. It’s not that things have been all well for me health wise but it’s just that I’ve been channeling most of my precious time and energy towards building and creating something new, which obviously leaves me with nothing for this blog. I still write on my personal Instagram once in a while and post on my stories, but that’s only if I really feel called to do it or I can’t wait to share Luna’s cuteness with everyone.

Going back to building and creating something new. I am a Certified Life Coach and I am in the process of creating a business from scratch. This time, I am genuinely praying to the Universe for some stability till I manage to get things up and running. But again, that’s not entirely in my control so I’m doing my best with what I have. My intention is to create something sustainable in the long-run so that my health and my business are somewhat in harmony. The thought of being able to work from my bed if I must is too exciting! I love my bed and we have a long-term relationship that I have learned to accept.

Honestly, to would suck to have come so far in terms of my health and personal journey and not be able to use all the lessons and wisdom gained to help others. I feel so ready to start speaking about and discussing things beyond just my physical health. I’ve mentioned this before and I’ll say it again but my physical health is just one aspect of my entire journey so far. It’s chronic but it’s just one part of my story so far and how I’d like to impact the world we live in.

So, keeping in mind that self-care will always be my priority, I am trying to find that balance and re-create a routine that works for me. I’m noticing that I can only put it around 3 hours a day into my work, and need an extra day in the week to rest (proclaimed rest day) apart from the weekends. I’m being very intentional and directional in terms of my focus and energy, that includes also saying no to things that absolutely add no value to my life and my dreams.

My mantra of taking it one day at a time is still working its magic for me.

Now, the main reason I’m writing this post is to share my new website with you and also invite you to subscribe and share my blog posts. I’ll be writing a post on this new website on a weekly basis and in a few months time, I will also have a monthly Love Memo sent out. To be super honest, the work I’m planning to do and things I will be sharing isn’t for everyone, but if you’re interested in knowing more or my words resonate with you, please feel free to subscribe!

For starters, I’m going to be writing posts on topics like

🌼Radical Self-care

🌼Self-love

🌼Holistic Well-being

🌼Healthy Relationships

🌼Healthy Boundaries

🌼Family Dynamics

🌼Mindfulness

🌼Mental Health

🌼Healing from trauma

I will be writing on this blog from time to time but as I mentioned in the start of this post, I will be focusing most of my time and energy on the new, upcoming stuff! My personal Instagram is where you’d find most of my updates on health and life in general so feel free to follow me on @mdalvi15

That’s all for now.

Love,
M

{deep waters}

Manasi DalviLeave a comment

People can only meet you as deeply as they can meet themselves. If one can’t handle the complexities of your being + experience, they probably can’t handle the complexities of their own.

I’ve learnt to let go of, with love, things and people that no longer serve me.

At first I used to think that my health, apart from taking away things that I loved, took away people I loved. Today, after a decade of dealing with the ups and downs of my health, I’ve realised one important thing: my health is a beautiful filter for all relationships in my life. My relationship with people as well as things. When it takes away, it keeps aside the best of the best.

I’ve lost people I thought I couldn’t live without and also gained people I least expected would show me so much love and understanding. The support and guidance that has shown up in my life in the last four years has been immensely helpful for me to make peace with where I’m at.

I don’t mean to say for a moment that those who are no longer in my life are bad people. But, they were incapable or unwilling to swim in the deep. They preferred the shallow waters. Not everyone’s realities are the same and some of us are more aware of this + willing and capable of accepting it when it comes to people we care about.

My health has also taught me another thing: the importance of healthy boundaries. Drawing boundaries with people is not the same as building walls between you and them. You get to decide who gets to visit the garden you’re growing, how long they stay and what they take with them.

If someone had told me these things years ago, I think I might just have suffered a little less. I would like to think I had to learn these lessons through personal experiences. Looking back, no matter how painful it was to let go of things, people and the idea of a certain kind of life, I would say it has been an eye-opening experience which has now aligned me with a life more supportive of who I am and my reality.

I’ve always believed in quality over quantity in most areas of my life. Today, the people I am surrounded with are those who listen, try to understand and also do their own research when it comes to having a loved one with a life-altering illness. They also trust my experience when I speak about it and we’ve learned to have a more open and honest communication.

Grateful to be back home after spending a day at the hospital. I had a random and severe episode of syncope two afternoon’s back but thankfully nothing life-threatening showed up. The cause remains unclear but from our understanding, it could’ve been anything from dehydration to my gastro symptoms to extreme fatigue.

Thank you to the kind souls who reached out. I feel so loved and care for. A much bigger thank you to those who’ve stood by me through the thick and thin.

❤️

-M

Manasi DalviLeave a comment

#butyoudontlooksick #butidontcare

Please tell me what ‘sick’ looks like✌🏼favourite spot in my new apartment: my lovely B E D ❤️ Also, till sometime last year, I couldn’t even sleep/lie-down on my tummy because my shoulders, elbows and wrists couldn’t weight bear without sublaxing or dislocating. I still can’t spend too long like that but hey, something is better than nothing!

“Do you ever get tired of looking after your body?”

Manasi DalviLeave a comment

A question I often get is whether I ever get tired of looking after my body. Yes. All the time. It’s a lot of work, much like looking after a hyper active kid who wouldn’t let you rest and requires all your attention because you never know what he might knock over or set fire to. Of course it’s tiring!

Over the last few years I realised that sometimes it’s almost impossible to find a direct link between what you do and what happens to you. The right thing to do then is to do your best based on the info you have. Can you imagine the kind of questions we’d have answered by now, in the realms of chronic illnesses and life if it all worked on a very distinct cause and effect basis?

I’ve personally noticed that there could (not always) be a cumulative factor to it instead. Ten different things added together may lead to a particular favourable or unfavourable result.

For example, sticking to my daily routine in terms of self care and rest, my nightly routine, my weekly physio and pilates, all my strengthening exercises, medications, spending time in my safe and healing environment, following my specific diet, all my doctors’ appointments, not signing up for any societal obligations and exercising the power of saying NO, usually allows me to manage my health symptoms better and sometimes even do more.

Similarly, not being able to do any of the above causes my body to start de-conditioning and overtime I start to lose my day to day strength. Now, add that with significant movement from traveling and a few days of too much activity and my health starts to deteriorate. Hence why I speak of sticking to a daily routine, setting flexible goals and drawing boundaries for yourself. It can become the difference between me fighting a chronic illness versus managing one — and that’s a big deal.

Over the last ten weeks, i was somehow managing my symptoms but not doing a very good job of it. Sooner or later, my body was going to begin to de-condition. It’s happening now. After a horrific night of painsomnia and lack of sleep, I just spent the entire day curled up in bed.

I think I’ve hit my limit and all I want to do is rest. #chronicillness

#ProjectCanada

Manasi DalviLeave a comment

💗 Proud moment 💗

This was literally the main objective of my trip to Canada.

I was in tears during the ceremony as I recollected bits and pieces of our past and the very fact that I could make it to Canada to celebrate my brother’s big day.

If you had asked me four years back about traveling to Canada (for that matter, traveling anywhere), I’d have told you it was a dream that might not come true. It fills my heart with immense gratitude thinking about everything that has gone behind making this trip possible for me.

M

The secret life

Manasi DalviLeave a comment

While I’m very open and honest about my personal experience with EDS Hypermobility, there is also a ‘secret life’, what I call the back end management which not only is something we (the chronically ill) often choose to not share but also something we often can’t share due to the complexity and implications of actually dealing with the illness 24/7.

Most people I know in the community of the ‘chronically ill’ live as authentically as possible and try very hard to share their stories, both to create awareness and for their personal healing and I find that truly inspiring and amazing.

That said, it’s important to keep in mind that it is NOT the whole story. It can’t be, unless you know us personally. No matter how much we try to put our experience out there, it is not the same as living with us and seeing us live — which is something only our near and dear ones get to see.

On my instagram, I try to share both the good and the bad. Whenever possible, it is as raw as it gets. But the truth is, for the number of times my shoulder (or other joints) clicks in and out, for the hours I spend in bed with ice packs and hot packs and the number of times i get palpitations, brainfogs etc., it is practically impossible to be both having the actual experience and sharing it.

I think that’s the reason why so many people who don’t know me well enough, whether biologically related or not, are under the impression that if I smile I am pain-free or I’m not struggling. And sometime, instead of asking, it is assumed that I am fine. Or better.

Similarly when I am bedridden, it is quite commonly assumed that I am sad to the core. Which again, is an assumption.

The truth is, the ‘chronically ill’ have figured a way to be smiling and struggling at the same time. I know it can get extremely confusing for the rest, but if you ever wonder how we’re doing, I suggest you ask instead of assume.