Tag: Ehlersdanlossyndrome

{blood and years don’t matter}

Manasi DalviLeave a comment

I’m experiencing deep emotional pain right now. I’m going to acknowledge that, let it be until it leaves, and also keep in mind that I’ve done my very best.

Self-awareness doesn’t mean that you’ll never make mistakes. It means that even if you did, you will pick up on it and respond in a way that best aligns with your highest self.

It also means that you walk away from things and people that take away from you.

Trust me when I say this — it doesn’t matter how long you know someone or if you share a blood relationship with that person.

What matters is how much you and them evolve as people, how you communicate and whether you’re truly there for them.

This year has taught me that no matter how much healing work of acceptance and forgiveness you do, some dynamics never change. You do the work for yourself; so that you can create a life and relationships that are supportive.

It doesn’t excuse their behaviour and all the nasty things they may have done to you, but it frees you from the suffering of it. It frees up time and energy for better things in life.

In the last two days, I’ve reached a completion with two relationships in my life. I am very peacefully convinced that I have tried my best and that I no longer need to keep anchoring the relationships.

I am not longer available for it.

I am letting go, with love, what I thought I shared with them.

❤️

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{deep waters}

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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

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Spending the next few days and possibly even the rest of the week in bed. I tried to push through last week, hoping the tightness and spasms in my lower back and sacrum subsided but unfortunately, there has been no progress. Strengthening is on hold for the time being and we’re trying IFT + manual work on my lower back during physiotherapy.

About six days ago, i fell right on my bum while taking a photo of a friend and since then, my already triggered lower back pain got much worse. Having a sublaxed tailbone and two slipped discs makes pain unbearable sometimes. Add injury or impact of any sort and that takes it to another level. My reaction was to get more physiotherapy done, tend to it using all my pain management techniques and increase my dose of analgesics and anti-inflammatories.

Yesterday, however, just as I was trying to get out of bed, I realised I couldn’t possibly let this continue. I had to finally pause and listen to my body. I need to provide it with a conducive environment to heal and recover. I now need to allow it time and give myself permission to rest without guilt. Starting today, I’m going to do just that. I’ll work on my coaching coursework and do what is possible from my bed, pacing and resting when necessary. It’s time to give it time.

A small something

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I was diagnosed with EDS type 3 in 2012, and have since been learning to live with theeillness. Before my diagnosis, I spent a good four years searching for a reason behind my deteriorating health and found no answer. Imagine being 18, three months into the course you loved, and suddenly starting to fall ill day by day. I tried everything that was “supposed” to help only to find out that it’s not a one size fits all kind of a situation. No one knew what was wrong with me and some refused to believe that someone in their late teens and early twenties could possibly be in so much pain. The struggle was real and it was beginning to affect my lifestyle. At one point, I thought I was living someone else’s life. It was devastating and unexplainably miserable. All it took was one medical professional to sit with me and really listen to my complaints and put together all my symptoms since young, which really didn’t seem out of place at that point.

After years or greiving over my old life and resisting what was coming, I finally started to work on acceptance and letting go. I could no longer run away from the fact that this was a chronic illness and the only way to move forward was to make peace with it as though it’s part of who I was, because it is. Sure, It doesn’t define who I am, but it plays a major role in every little or big decision in make in my life. It affects my energy levels, makes me put emphasis on bigger and greater things in life and hence also changes how I choose to live my life.

Things were only getting from bad to worse. The longer I held on, the more I struggled. The more everyone around me struggled, too. When I could no longer push, when my body started to scream and not just whisper, I figured it was time I made major lifestyle (my passion/activities I enjoy, the people I spent time with, my daily routine etc) and career change in order to accommodate and honour my health. And so I did.

I no longer see a point in creating suffering for myself by trying to push my body beyond its limit. It’s hard but I’ve realized that you have to make a choice every morning, to get up and do the best of your ability. Whatever your best is, is good enough. I’ve also realised the importance of staying true to your personal experience no matter what anyone says and also finding people who trust you.

Over the last few years, I’ve been working on adopting a new perspective towards my health and the choices I need to make. Firstly, I tell myself that these choices and decisions are FOR my health, not BECAUSE. Secondly, I choose to believe that I am fighting my illness by loving my body. Thirdly, I take conscious steps towards forgiving and letting go of what I thought my life “should” have been and adopt an attitude of gratitude as far as possible.

I won’t lie – living with chronic illness is tough. It complicates your life and makes you feel as if there is nothing more to life but being sick. It makes you feel like you have to climb this never-ending mountain all yourself and that no matter what you do, it’s not enough to change anything or make a real difference. It makes you think about the meaning of pain and suffering. Question your abilities and sense of self. I know the extra suffering that comes along with the physical pain.

Then again, every day is a new day and all we can do is acknowledge our pain and learn to work with it. It might require you to reassess your path every now and then and do what is in alignment with your health. That choice to work with your body while taking one little step forward towards what you love, or what frees you and makes you feel at peace is what reflects your strength and courage. It’s not your illness that defines you, it’s how your choose to live with it that does.

You have the choice to do something every day that makes you experience a small victory. And many victories put together allows you to overcome the burden of living with a life-altering illness.

Keep in mind that this ‘something’ I’m referring to doesn’t have to an incredibly big task or fit the expectation of the society in any way. It could be something as basic as getting out of the bed, holding a brush and writing a letter, doing an extra shift of your part-time job, washing your own hair, maybe cooking yourself a meal, meeting someone you love, reading a book to nurture your mind… anything that makes you feel like you’ve taken a step forward on that given day is a good enough start.

One day at a time.

One step at a time.

and, remmeber, you’re allowed to pause for as long as you need to before starting again.

Love,

MD

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this is a photo from last year when I stepped out of my apartment for the first time after being bedridden for seven months. Apart from the trips i made to the hospital for tests and appointments, i was completely bedbound due to a massive lower back flare which caused excruciating pain and muscle spasms in my entire lower body. i was also undergoing a treatment for #sibo, following a highly restrictive diet which was helping my physical symptoms and also changing my relationship with food for the first time. With support from my close friends and a couple of family members, i somehow survived those seven months in my own apartment, walking not more than 200 something steps per day. i think i’ve dealt with times worse than that and have come out a little wiser and stronger each time in my entire life. Despite spending countless nights in pain and doubt of whether i’d get out of bed the next day, i’m still here today. Not ‘fixed’ or magically cured. Just doing my best and allowing myself some rest. And so are you. And I promise, if you’ve come this far, you can go even farther.

Once a dancer always a dancer

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So I was busy decluttering my to-be home office, discarding the old and making space for the new. It’s a ritual that I take seriously because it allows me to work with my feelings about the things I own, my past, present and future.

Determined to pull an all-nighter according to Canadian time so that I can peacefully fall asleep at night, I decided to play a list of fast Bollywood songs which is specifically created to lift my spirit up from time to time. I thought it was helping me stay up and get work done.

Just then, this one song plays and I’m like nahhhh, everything can wait. Everything must wait. I need to do this.

Think about it for a moment:

With the dark cloud of chronic illness constantly hovering above us, what can we do to lift our spirits?

What sparks true joy within us?

Could we be letting our disability confine us more than it needs to?

Can we not find ways to work within our limits and still experience similar feelings of passion?

I think we can.

We’re all different, with different illnesses, different degrees of severity, different scale of limitations, different support systems, different biographies which could very well translate into a drastically different experience altogether — there’s absolutely no reason for us to even make that comparison. All said and done, each of us is doing our best to work with the cards we’ve been dealt.

BUT. In the midst of the pain and suffering, I think it’s possible to find ways to work with or around things we truly enjoy. I can’t dance like before, nor can I move with as much energy, but I do know for a fact that when I’m on my roller chair and if symptoms are manageable for the day, I might be able to move a little and FEEL that same feeling I experienced when I danced in the past. I do have to be careful though but I’ve reached a conclusion that you can’t take dance out of me.

It makes me feel alive and so I do it very often :) I hope you enjoy my crazy and find something that makes you feel a tad bit crazy too.

Lots of love,

Manasi

#onceadanceralwaysadancer #bollywood #dance #passion #love #joy #wholehearted #chronicillness #pain #fatigue #suffering #smile #invisibleillness #ehlersdanlossyndrome

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!