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.

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#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!

Sometimes I wonder if there’s any limit to the pain I experience. Then I suddenly remember that there is only limit to the suffering around the pain and the limit is my mind. The pain is in my body. The suffering is in my mind. Everyday I wake up and choose to lessen my suffering instead of only trying to rid my body of pain which I know has reasons; of which some are beyond my understanding. Thankful to be here today, despite all the different kinds of pain in all the different joints and partly unexplained pain that we are currently investigating again. Happy weekend!

💕

Rare Disease Day 2018

Today is a big day for us spoonies.

It is the official Rare Disease Day, an observance held to raise awareness for rare diseases and their impact on the lives of patients.

While the purpose of today is to spread awareness for diseases and disorders that affect only a small percentage of the population, I’d also like to take this time to say a big thank you to the spoonie community for making me realize that there is hope, especially during the worst of my years.

Thank you for doing the best you can with what you have and where you’re at and inspiring me to do the same.

Please take a moment today to validate yourself for the progress you’ve made and for the strength and courage you exhibit despite your daily struggle.

I’m ever so grateful to have found to have found this community. You serve as a reminder for me that we are in this together. Thank you for being you, for sharing your story and spreading awareness for all things invisible to most eyes.

Keep going one day at a time!

Friends and family,

If you’d like to show some support and help share awareness, log on to rarediseaseday.org, click get involved and download the material which you can then share on social media. Alternatively, drop me a DM and I can share some material with you.

Love,

Manasi

#showyourrare #showyoucare

#rareillness #rarediseases #awareness #2018 #february28 #rarediseaseday #ehlersdanlos #ehlersdanlossyndrome #eds #hypermobility #pain #brainfog #migraine #dislocations #sublaxations #fatigue #health #mind #body #inspiration #motivation #onedayatatime #love #support #community

Days of nothing but exhaustion.

People ask me where and how i find strength to get through days like today and while i have a long version of my entire journey up till now + my on-going process,

the shortest response i have is:

“With kindness, patience and love towards my body. It’s a struggle sometimes but sticking to a practise of self-care and self-work is a choice i continue to make every single day. And somewhere in between all that conscious work, i find strength, courage and acceptance.”

//Manasi D

Update

Hi all,

I haven’t been too well since the start of 2017. I’ve been dealing with bedriddening pain + gut related issues and the effect of all of it on my activity level has been quite significant.  My health has taken a major dip this year and I’ve spent a large part of my time re-figuring things out.

This is life – it’s never predictable and to stay afloat, we have to keep finding a “new” balance + remember to be patient with ourselves through it. Sometimes it may feel like we’re starting all over again, however, it’s crucial to put our focus on the fact that we’re also wiser, stronger, more courages and a little more ready each time.

There’s been more happening in my gut and I’m currently working with an intergrative GP, a gastroenterologist and naturopath to find the next best step. The amount of decision fatigue I’ve experienced over the last five months is not funny. Apart from a rather serious back flare up + sublaxed shoulders, something so simple, straight-forward and enjoyable like food turned into this massive, overwhelmingly exhausting thing that required/ requires constant awareness and thinking.

For the next three weeks or so, I’ll be going on two very strong medications, known for worsening all existing symptoms. I’ve have been specifically told to not take this treatment too lightly and it might make life seem a tiny bit miserable. As someone who deals with excruciating pain and indescribable fatigue on a daily basis, I honestly don’t know how much worse things can get. However, I have also seen myself at my worst before and hence believe it’s important that I take extra precautions and have help available for me if necessary. Thankfully, I do have a small group of people to count on if needed.

On a brighter note, I’ve got a couple of workshops to teach and close friends to meet so I’m really keeping my fingers-crossed and spirit high :) I’m aware of what may happen, giving my body extra time off, saying more no and less yes (trust me, it’s needed when you are functioning on limited energy) and taking everything one baby step at a time.

I hope everyone’s doing fine.

In case I’m not around much, Happy June! ❤️

Love,

Md

P.S. This post is not about defeat or seeking validation, and most definitely not one asking for pity.  If it sounded like any of these to anyone, please let it go. I’m just sharing and giving an update of how things have been this year. Please keep in mind that it is very much possible to mentally accept and deal with things gracefully WHILE experiencing a great amount of physical discomfort.

#chronicillness

It’s one of those days when I’m in desperate need of help and I don’t want anyone around either. It’s that knowing that your body needs absolute rest that makes you realise that you can’t do without help. All I’ve managed to do since I got up at 5:30am this morning was walk to the kitchen using my cane and make myself coffee hoping my shoulders don’t just pop out while pouring hot water into the cup.

Fatigue is out the roof, pain levels of different joints are all over the place, my back is spasming and my are shoulders loose. I’ve been twisting and turning uncomfortably throughout the night, afraid of either of my shoulders popping out or going numb because I accidentally slept on them for too long.

My shoulders having been snapping in and out without me doing much and it freaking hurts each time it happens. I’ve had to be extremely cautious through last few days and measure each of my movement. The looseness in both my shoulder joints is making it difficult to “find” rest in any position. The tightness around the muscles neck and mid back is adding a fair amount of pain and stiffness (this is a natural response of the body, a self-protection mechanism). My arms and palms are hurting and I just don’t want to touch or carry anything.

What’s worse is that I haven’t been able to tape my shoulders over the last few days as my skin is still healing from a bad tape allergy. Somehow, the lack of proper support apart from my sling has been making me a little apprehensive. That said, this is all very familiar now. I talk about being present and listening closely to your body and today my body demands me to not move. I’ve had work over the last few days which were supposedly rest days but work is fun and I can be a workaholic so I’ve had a hard time practising some self control.

Today, however, there’s nothing that needs to be done except to tend to my body. Everything must wait and anything that can’t, isn’t needed. We have to learn to be patient with ourselves and let our bodies take some time to adjust to a new routines and changes. Prioritise rest and recovery, go one step at a time and ask for help when needed🌷