How do you define work?

https://themighty.com/2018/02/unable-to-work-because-of-illness/

Every bit of this resonates with me.

It’s a constant struggle for people like me to remember our worth when there is so much stigma around being sick (especially young and sick) and not being able to work.

It often makes me wonder, how do you define work anyway?

Does work = I bring money to the table every single time? does my voluntary work with kids with troubled childhood which doesn’t earn me anything but makes me feel valuable and like I’m making some difference count as work? Does me trying to help an individual who is newly chronically ill/struggling with their health mean anything in the society at all?

What about the times I teach classes hoping they help those who participate — does that count as work even if it’s not always sustainable? What about the job I did as a receptionist at a pilates studio hoping I’d be able to stick with it and then got bedridden — does that count at all? Is that seen?

Does it matter that people like myself at one point had great aspirations and goals too and had to leave those behind, grieve our old selves and learn to accept what we’re presented with? Does anyone ever see the pain and the courage behind having to leave what brings most of us financial stability and freedom in order to prioritise health?

What about the work you put in day in day out to look after a faulty body? Imagine having to look after an extremely mischievous and sick child who doesn’t listen to you for twenty four seven. No break whatsoever. Not even when you sleep.

It’s easy for people to ask, “what do you do?” because it’s the most common way to start a conversation. It’s also very understandable and I have a standard answer ready. But you won’t believe the number of people I’ve come across up till now with the mindset that if you’re not working, traveling and or working out, you’re probably doing nothing. Or not doing enough of something. Or aren’t ambitious enough. Have no goals. Have nothing figured out.

What makes so many people think that those who’re sick are lazy or not ambitious enough? Couldn’t our ambitions and priorities have changed? Can we not bring empathy, compassion and kindness to the table instead of money? Is it not possible for us to do our part in some other way? Can we not be the people you turn to when things aren’t going right? Can we not support the family and household in other ways?

Or how about this: is it not possible that by us doing our self-work and learning to accept and tend to our illness allows us to manage the illness a little better and hence take some load and burden off those who are trying to support us? Isn’t that work too?

Advertisements

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

Day six #bedbound: Back is still at 8/10. Burning. Aching. Spasming. This pain won’t let you rest. You can’t recover without rest. It’s a never-ending, vicious cycle. It hurts so bad that you wish you could dismantle yourself and put your back away for a while. But you can’t. There’s absolutely nothing to make it any better. All you can do is what you always do – listen to the pain, tend to it and relax into being where you are at. Stay present. 

Recovering from a zombie state 

I feel like a zombie. A zombie who ran a triathlon, won the first position and is now fatigued out of her brain. Wait, do zombies have brains?

Well, here’s the thing. I can’t make sense of how yesterday was – it’s as though I just sat on my bed attempting to read a fiction love-story (I don’t read fiction, by the way), with my new glasses on and the day just went by. I went for Physiotherapy but that’s really it. My brain was numb and heavy and light and cloudy and foggy and misty and messy and everything all the same time. And my body was over-worked, over-drained and over-sensitive. Towards the end of the day, I even started running a slight fever out of nothing but plain tiredness. It was like my body saying, “alright woman now that’s enough.. Stop before I stop you in ways you don’t want to stop.” Except, it didn’t sound  as threatening as I’m making it sound.

I’m still recovering from that intense brainfog and still have a residual disoriented sense of the world around me today. Half of me is still floating brainlessly. Thankfully, it was such an easy day at work today – I had the whole studio to myself and I had done what needed to be done so I survived and even managed to take a couple of pictures – you know, when you’re in the right clothes and in an empty studio, it’s okay!

I also managed to get through a short session of my regular Pilates session today. That makes it 4 short sessions this month and that’s freaking brilliant! I’m starting to get back to my routine slowly but I’m so exhausted it’s even funny. I look back and I wonder, ” how on earth did I manage 2 sessions of Pilates per week, and Physiotherapy, and part-time work, and walk to work and cook for myself and work on some parts of my business before my knee got injured?!?”

No idea. I swear I don’t. Did I actually manage all that?!

Our body is constantly changing and we have to adapt to it. To be very honest, I have to give myself a few months and then review to see if I need to make some changes to my lifestyle again. At the moment, I’m trying and I wish to continue trying. That’s all I know.

Most of us physically fragile people are gifted with a brain that’s very strong and we’re capable of dealing with so much more. I see where there can sometimes be a clash between our mind and body but frankly, the lesser the clash, the less we suffer. The more tuned in we are with out needs, the more tuned in others will be with us too.

I’ve got a very busy next three weeks. My brother’s back this Friday for a short summer break and I also wish to get through work and other not-so-fun stuff. Again, I’m not sure if I can and I have to keep checking in with my body.

Do send me some good vibes and extra spoons because I definitely need them right now and possibly for the next month or so. Though there’s still a longggggggggggg way to go (I’m questioning if there even is a destination), I’m very proud of where I’ve come today. It’s not been an easy journey but I’ve made it here. Just like most of us. With that slightly positive thought in mind, I’m going to get into bed and hope I get a good sleep. I think I’ll be ready for tomorrow.
Love,

MD

Wednesday update! 

To be honest, I’m super beyond fatigued. There are times I wish things looked different, or that my health was like that of any 25 year old. Sometimes I feel that’s the kind of life I’m more familiar with and had plans for.

What happened then? 

Well, I know what happened. Life (actually) happened.

Lots of things went wrong and many others went right for me to be where I am today. Both ways, I’m grateful because I’ve grown as a person and figured so much out! Dealing with a chronic illness is painful and challenging as anything can be – to live with it in your body and make choices that honour your health, which involves making some really tough decisions. REALLY tough. You have to find ways to embrace your limitations and open your eyes to new possibilities – and believe me, it takes time. Ages, sometimes. At times you feel great, and at times you don’t.

 

Every day brings new opportunities and new challenges – sometimes both, and you don’t know what to do. I’m always trying to make choices from a place of my ability rather than my disability… But frankly, on days like today, it just doesn’t work. You want the day to end. You want to be in bed and wait for all your energy to come back to you.

I can’t say I hate life or the circumstances I’m dealing with – no, it’s a part of me. A part of who I am. My experience is now a part of my biology. And my biology is a huge part of my life. It is what it is and I’ve largely come to terms with it. It has made me who I am today and it is making me into who I can be. I strongly believe that I own this illness and don’t let it own me – on a greater scheme of things, I’m learning to manage. Even then, it is still very physically, mentally and emotionally tiring at times.

It’s only 3pm and I feel as if I’ve been up for 3 days, ran 3 marathons and been on anaesthesia since. Seriously, I want to hibernate for a long time. This week has been crap and tiring. I can’t wait for it to end :) Enough already! I think next week will be better.✨

Love to all

❤︎

Painful weekend

On days you absolutely can’t do anything about your experience and your plans don’t count for anyone’s sake. Most days are bad enough (you learn to manage) but days like today are worse.

In my previous post, I described pain associated with EDS/HMS to be either constant or increasing. It is never really zero, nor does it decrease as such. Well, at least that hasn’t happened in the last six years.

You learn to get through days when the pain is fairly constant, but on other days, you just have to stop and be okay with doing nothing but simply breathing through it.

 

Not that it helps with pain, but dark chocolate gives me a temporary burst of happiness which is so worth it on days like today. And at times, it surely helps to have friends who are so willing to just drop by to spend time with you while (and even though) you’re in pain.

❤︎

An Extra Mile. 

 
You see, if you’re dealing with an invisible illness, a chronic or rare illness or some sort which doesn’t always show, you tend to get a lot of this:

“But you don’t LOOK sick!”

A funny meme that I found on invisible illness had a response to the above going somewhat like this, “Please tell me, what does sick look like? I’ll make sure to harder next time.”

Yes, there are times I feel frustrated and would want to give a similar reply but I rarely ever do. Because I understand it’s only normal to expect a “sick” person to LOOK sick. You’d usually expect a handicapped person to be on a wheelchair, right?

The truth is, a lot of us choose to not look sick. All you have to do is turn our bodies inside out and you may see it for yourself. It’s a conscious choice. One of those daily choices we make; one of those which may not even come across as something anyone else might need to stop and think about.

I know, life is all about making choices for all of us. Whether you’re sick or not.

But making a choice out of limited options, creating possibilities out of painful hurdles, turning physical weaknesses into mental and emotional strength, using all the brain power to keep you up and going, and having to consider bodily consequences for every little action, every move, through the day, is simply not the same.

We love to talk about strength; about how strong our body is, how toned or attractive we are, and that’s brilliant! But I’ve learnt over time, through personal experience, there is no strength like the strength that comes from within. From deep within. It’s the kind of strength that sometimes lies underneath the most nasty emotions but it’s still right there, to keep you motivated and to help you up each time you fall (literally and metaphorically).

That’s why I like to think, a lot of us may be physically fragile, but we’re mentally unbreakable. We might lose our balance, but we come right back and we’re stronger each time. We spend so much time and effort on our body and its needs that nothing else is as important anymore. What can be more of value than your own health? I can say this today, barely anything. In fact, I’d like to say nothing. Nothing comes close to health in terms of priority.

On days like today, I have to go an extra mile – to look less like a patient and be more patient with my body. It has come a long way and it has a long way to go.

Love,

Manasi Dalvi