Thank you


I just feel like saying a big thank you to all those who've loved me through my struggle with finding a diagnosis, leaving an old life behind, resisting a new one, accepting and coming to terms with where I'm at and making drastic lifestyle/career changes in order to manage my health.

Thank you for loving me despite my chronic illness.
Thank you for learning to grow with me ❤️

You didn't have to be family to promise that you'd be around whenever I need – you just chose to be there for me. Thank you!

Advertisements

Shopping for clothes

I remember the times when I could go into a trial room with a basket full of clothes and super quickly, try on everything + reach a final decision and leave. It was easy and fun and barely required any extra thinking.

Then as I got more ill, I couldn't walk around and pick clothes as quickly, reaching for things kept higher up the shelf or lower below my knees became a challenge and even though shopping was still rather fun, it started becoming more of a task. As more joints kicked in, I had more and more things to consider.

If I managed to somehow pick out a few clothes I wish to try, I'd find myself half exhausted to actually try them on. Sometimes trying would hurt my joints, even if I was as careful as I could possibly be. I would need to take breaks and go slow, one thing at a time until I'm either bloody exhausted that I can't try any more or feel accomplished for managing to try every piece I picked. I can't count on my hands the number of times I've had a sudden brain fog, palpitations or over-worked a joint while trying on clothes.

After an arduous process of having tried a bunch of clothes, I often find myself thinking if it's even practical to buy things I really liked, based on my experience in the trial room. Is it worth trying to wear something gorgeous that I'd probably be able to carry off but might find hard to get in and out of, or could possibly land me up in the ER if I accidentally over-did anything or perhaps cause a sublaxation that might take months to heal?

My instinct says no (of course, I do ignore it sometimes. Being sick doesn't mean you deprive yourself of pretty things, right?) mainly because I'm so used to thinking through the lens of my body and I believe that in many situations, my body seems more wise than my mind.

Sometimes this process of weighing things out takes me about an hour but I still go through it. At times I'm lucky and I find enough "perfect" clothes and want to the whole bunch because who's going to keep doing this all the time right? But no, then there are more questions that pop up for me — am I going to be able to carry it all home? Do I have any energy left in me to do it?

There are times when I can which is great. And other times I can't so I decide to leave a few things behind for next time. By the way, next time can be at any given point in the near or far future, you never really know. There have been several times when I was in such a bad state after trying a few clothes that I just chucked them away and left the shop empty handed.

Times have changed.

From shopping turning into a plan (or journey!) to so many stages of decision making through the process, to noticing shifts in my physical body, to the love and acceptance I've developed for it – things are no longer the same and they become extra apparent under some situations.

Often, for me at least, this message comes as a subtle note, a deeper thought with a sense of peace + relief, "You are a newer version of who you used to be." but every once in a while, it stands right in my face, yelling at me, causing a bit of fear about where things might be heading. For a while that's okay, and perhaps needed, but after a point I have to move away from that space and become more present.

Little things in your daily life are capable of reminding you of how much things have changed for the worse but I've learned that it's crucial to work on putting those things aside and really look at every little progress you've made. Every. Little. Progress.Counts.

If something reminded you today that times have changed and you found yourself struggling, remember to focus your thoughts on how far you've come, rather than where you used to be or where you're heading. Make a list of things. Write a journal entry. Look through photos that celebrate your journey up till now. Talk to your friends and perhaps ask them to remind you of your progress. Most importantly, keep in mind that you're not alone. Most often than not, we're all struggling with similar emotions and thoughts but our approaches might differ.

Love,

Manasi

So proud of this girl!

She sent me a message on Instagram right after reading a post (Measured steps) on my Instastory. Check it out!

I shared this screenshot on my Instastory with my response in pink. It’s meant for everyone who’s dealing with an illness and serves as a reminder to myself.

Measured steps

My back is in a terrible shape again. I haven’t been able to get out of my bed since last morrning, after my short walk. It’s been spasming pretty badly, making it difficult to rest.

Clearly, it can’t handle much activity at the moment. And, that’s fine too. It’s only understandable.

Last 5 days or so have been rather busy (strenuous for my body) with hospital visits and I also attempted walking a small distance yesterday and day before. Obviously, it doesn’t feel great seeing that my back has lost so much strength due to a flare up at the start of this year.

I haven’t fully recovered yet and I can tell that recovery is going to take MUCH long than what I first anticipated. In fact, somewhere after 4 months of being bedridden, I stopped wondering when I’d be okay because it was only making things harder. I was doing everything right, putting all the tools I’ve learned over last so many years to use, resting as much as possible and yet my back wasn’t improving.

fdd2b7b4266e28998df5f1eb0a0e1c4e

Once again, I realized that the only thing in my control is/was my response. I was doing my very best. My body was going to take its time to heal and I couldn’t magically put my back together and make it okay. That’s not how it works :) All I could do was continue doing things that could potentially help my back recover. I figured I’d rather accept the new baseline, the present, and learn to work around it.

Comparing myself to last year wasn’t helping just like comparing myself to pre-illness didn’t help when I was learning to accept my new reality. It made me feel stuck. I’m now at a point where even if I accidentally happen to push it, I might get bedridden all over again and I’d hate for that to happen.

Learning to work around new a baselines (and we may have many new ones in future since it’s a chronic illness) is the only way forward. Unfortunately, you take a risk each time you attempt taking a small step forward — you can’t fully be sure it won’t hurt you and you won’t know till you try. #chronicillness

See where you’re at, listen to your body and take a measured step forward. If it works, be patient and continue to take slow, measured steps. If it doesn’t, be EXTRA gentle with yourself — rest, adapt and try all over again.