I knew very damn well that #holi was going to be a fun, yet painful experience and I did what I could to make it easier on myself. I had myself taped up, took all the right medicines, wore proper footwear, I didn’t dance with the crowd and made sure I stayed alert throughout. The last time I played holi was back in 2008 – just a year before my body first showed me a sign that something was terribly wrong. Till then I could #dance freely, with all my #heart and #soul and not once did I have to worry about falling apart.

After we got back, my friend and I were sitting on my bed thinking about the day and how #fun it was even without much dancing. All of a sudden, in the middle of all the chitchat, I got the worst muscle spasm and a cramp, both together, in my left calf and thigh and I started yelling in pain. I couldn’t move because the pain was so deep, so intense.

I needed my friend to roll out parts of my left leg and I was literally moaning in agony as she tried to release those spots for me. I was giving her instructions and she tried to follow, but she’s never been in a situation like that so I could tell she was scared too. This entire episode lasted for a good 20-25 minutes and I was almost in #tears at the end of it.

That’s the thing – you know what can go wrong with your body but mostly, you never know when and at what scale. There is always some strange familiarity in these messed up incidents but they are just so unexpexted. Thank heavens I was at home and not alone in that moment. Life with EDS is so predictably unpredictable.

That said, I’m happy I went for holi today and now I have to give my body the time it needs to feel better. I hope it doesn’t take too long though! It’s okay to be #sick and put your body first and also once in a while permit yourself to do things you usually don’t. You just have to make a conscious choice and be willing to give yourself the right kind of care to recuperate.

If something makes you smile, makes you happy, do it. It’s a matter of balance and being aware.

 
#Mind and #Body • The Sacred Tradition of #Yoga •
I definitely can’t do yoga yet and probably won’t until I find a Yoga teacher who has worked with other #EDS patients and helped them.

However, not being able to practice the physical aspect of Yoga doesn’t stop me from learning more about the Mind aspect of it. I keep wanting to know more, learn more and see if there’s anything that I can put to practice without necessarily working with poses etc. The entire experience of Yoga as a whole, the #meditation and mind aspect of it has been always seemed interesting to me.

What do you do if your body doesn’t let you nap even when you’re in need of one? You get into bed with two hot packs and a book, and have a mid-day reading session.

  
I strongly believe that we experience #pain for a reason. There’s something our body wants to communicate with us and we must listen closely. Often the consequences of not paying enough attention to the message can be absolutely disastrous to our health, in fact, to our whole being. 

#Listen. 

Pay #attention.

What is it that needs to #change in your life right now? 

Are you courageous enough to make those changes for the sake of your health and well-being? 

Trigger Ball

 
Spent the last two hours on my kitchen floor with a trigger ball because when your body decides it can’t move a step forward without a deep tissue release, you have to stop what you’re doing and listen to it.

You do not have ANY control whatsoever.

Trigger ball hurts so bad it makes me tear up and I can’t help it. I can’t even begin to explain how painful this can be. It’s the kind of pain that you know you need in order for your body to function, because the deeper, more persistent pain that already exists IN your body only continues to get worse if you don’t tend to it.

Trust me, it makes you cry. It even makes you want to yell. This sort of physical pain IS real. 

In such times, I just want to be left alone in a room with my body. I want to be with the pain so that I can speak with it and listen to what it has to say. I know I might sound silly right now but this is what works. This is the kind of self-awareness we need to practice. I play some kind of soothing music, dim the lights, switch on my aromatherapy lamp and give myself all the time and freedom to just be; even if that means to just be in pain.

Sometimes you don’t even have time to do all that – you just grab a trigger ball and start. Make use of whatever that’s around you. Wall, floor, cabinet doors… Doesn’t matter. Because your body feels stiff and your muscles turn rock-solid and your physiotherapist doesn’t live with you so you have to manage it yourself.

Welcome to the back-end of living with a rare,chronic illness. This is where all the messy, ugly and painful #shit happens.

#chronicillness #rareillness #hypermobilityeds #pain #triggerpoints #triggerball #myofascial #fascia #connectivetissuedisorder #spoonie #HMS #EDS #hmsa #awareness #chronicillnesswarrior #truth #life

 
Distracting works, I’m sure. But only temporarily and sometimes not even that.

Dealing with (any) pain requires courage, patience and strength.

It requires us to first admit that we’re in pain (and be okay with it) and then proactively figure out solutions and make changes to manage the pain.

Trying to distract yourself from (any) pain right now is doing nothing but adding on to the intensity with which you experience it later, and that too, with a lot more self-created suffering.

What’s the point?

#pain #change #distraction #selflove #love #care #health #rareillness #chronicillness #courage #strength #acceptance #trust #mytapestory

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

❤︎

Big day

 

It’s another big day today :)

I can’t believe I’m doing this; that I have decided to do this. I’m excited to see how things go, now that I know my body so much more than I once did

I still can’t avoid some of the emotions though 

All the memories from the past when I made choices thinking they’d work and my body just gave away keep coming back 

These memories don’t hurt me as much but they are there 

I know this is different 

I have to remind myself that this is different 

Today, the situation is a lot worse and a lot better (at the same time) and I think I am equipped with the right tools 

I’m making choices that are right for my health and for me, as a person as a whole 

And this choice too, feels right; there is enough flexibility for me to work at my pace and yet learn so much 

I think can do this but I can never let anything else take priority over my health 💖

I’ll write more when I can. I’m officially exhausted for today :) 

#chronicillness #chronicillnesswarrior #spoonie #spoonielife #life #courage #strength #choices #beyourowncheerleader #2016 #hypermobilityeds

 
I can’t move. I’m fatigued out of my mind. 

I’m in pain. My feet are icy cold. 

The weakness is taking over me bit by bit. 

I’m in need of rest. A long, peaceful rest. 

I need to just let it all sink in. 

I needed this certainty so badly. 

Even though I stayed strong, the external stress I had to deal with was unbelievable. None of it was mine and yet at times I’d find myself wondering, “What if negativity won over the trust I have been creating for myself?”

 I am SO relieved today. 

Trust won over fear. 

Thank you, thank you, thank you!✨ I can now just let myself be fatigued, rest and breathe and get ready for all the new things life has planned for me. It’s a new beginning and it doesn’t get any easier from here. I just have some space to breathe now, to figure it all out one step at a time, and that’s exactly what was required.