Hello, April! 

Just a mini reminder to stay true to your own journey and pace yourself. Time is never in our control but how we use time is.

March was a busy month and I’ve been feeling more exhausted than normal (I know, I know, for those without chronic illness, this must hardly make any sense). The good thing is that whatever was planned for March is all done and that’s one big step in the right direction. However, before I could even allow myself to fully rest, there’s stuff lined up for April which I want to tend to. Half of me is excited and the other half just wants to hibernate because you can never get enough rest when your body is constantly using up a lot more energy.

It feels like there’s hardly any time to recuperate from March! The workaholic, Ms. Productive in me wants to take charge and make things right and “fix” everything and never stop (this is the older version of me who thought she had it all figured out because at one point she did and guess what, I’ve grown to listen to her less and listen to my body more) because time is running out or something. The truth is, it always feels this way unless I take the initiative to really create space and find time for selfcare – to think less in terms of productivity and more in terms of peace, love and what makes me smile from within.

It’s funny how we think we have control over time when all we have control over is how we respond to it. Time continues to fly and do its thing and either we learn to work with it and use it in a way that aligns with our true selves or we let it freak us out and allow it to paralyze us further.

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

Down.

 One of those days when all you can do is sleep with oils and hot packs.

My sleep was terrible last night. In fact, I haven’t been sleeping too well and I assume it’s because I’m still getting used to my new place. I usually need some extra time to settle in and get used to a new space. We all do I suppose.
It took me a while to fall asleep last night and I got up far too early. 5:20am? I woke up feeling extremely cold; to a point that I was shivering and needed to wear a sweatshirt, put on my socks, switch off the AC and get myself two hot packs to hold on to. Getting out of bed was a challenge because I hadn’t slept enough and my back as tight and in pain. Nope, I didn’t get a dream and nor did I wake up feeling anything. I just woke up feeling abnormally cold.

No, I wasn’t running a fever either. I checked. My temperature was kind on the lower side instead. I don’t usually get up because it’s too cold in my room. I’d get up if it gets too hot sometimes. The AC needs servicing, so you can imagine, it really wasn’t that cold to begin with. I decided to push myself out of bed, even if I was freezing to death, and start with my day. I had to because my brain was active (tired, but active) and my body didn’t want to cooperate. I know it needed rest but staying in bed wasn’t helping.

Within an hour or so, I got back in bed again. There was no way I could’ve continued with the day. There is no way I’m going to be able to sit with my laptop or get anything done, even though my brain could handle it. It doesn’t even seem like a work-from-bed day. Today, my body needs extra care and rest and that’s what it has to get.

That’s just how it is – every day looks different, yet can feel the same.
🌷

How I Walked Too Fast on Saturday

Last Saturday I went for a longer walk as planned. It was one of my weekly goals! I had thought I’d cover a greater distance at a slower than normal speed but what happened was that I covered a greater distance at a much much faster speed. As far as I remember, and according to RunKeeper, this was the fastest I’ve walked in the past one-and-half years! The last I walked so fast was before my knees were affected (December 2013!). Now that is crazy. I know, it sounds as if it’s such good news, but I really don’t think it is.

Of course I feel happy that I was able to do it, but the consequences are not worth it at all. Since that day, I haven’t been able to even walk my usual distance, at my usual speed or do Pilates. And this is all because I got completely carried away on Saturday… walking at 8.5minutes per Km. Okay, those who run, you’re allowed to laugh. But this is my fastest now. Can’t help it.

I think I started off at my usual pace (you can imagine what that is) and about 35 minutes later when I got back to my starting point (my home), I seriously got a shock of my life. I couldn’t believe the speed I was walking at! Just a fraction of a second later, I realized that my body wasn’t doing too well. Let me skip the details for now. It’s sad when this happens…. when I don’t realize what I’m doing to my body because of my mind.

My body was in pain throughout, but I didn’t stop. I didn’t register that I needed to stop.

So my brain was overworking throughout that week and when I went for my longer walk, my thoughts were really spinning and running at an unbelievable speed. I don’t think I was paying attention to my body even a bit (and I usually make sure I do) because I was busy catching hold of my thoughts. It was a week’s worth of mess that I had to figure out. Oh, AND, I lost my Bose Earphones few days ago (NOT the best time to have lost them……), so I was walking without music and I hate that.

I purposely listen to really slow songs so that I walk at a slower pace… take SLOOOOWWW steps forward…. one foot at a time….

That didn’t happen this time.

Being at the beach on a Saturday morning with all kinds of thoughts and without your earphones is a bad idea idea. You’re surrounded with people running, cycling and rollerblading their butts off; which is extremely motivating and demotivating at the same time. I usually feel motivated…not to try and match what they’re doing or their speed, but to do the best I can while listening to my body.

I didn’t feel motivated that day. It didn’t feel positive. The speed at which my brain was working matched the speed at which people around me were moving. I’m sure this had a subconscious effect on me and I ended up walking at a speed I forgot I was even capable of!

So here’s an equation I came up with. It’s harder to comprehend than Calculus. Trust me.

No slow music + thinking a lot + feeling like crap + checking out fit people = walking too fast = 4X(normal pain) + tensed back + inflamed knees = ruined routine for a week or two = feeling worse = slowing down all over again + talking lots of painkillers + icepacks and hot bags + extra tape and guards 

You know, I can push my body if I have to or if I must. But I don’t want to now and I surely don’t think it’s worth the pain and suffering it causes.

Each time I think about the consequences of pushing my body, I do not get a good feeling. Nope, not even if I walked at a speed I haven’t in sometime. What makes me feel good is that if ever I have to run for my life, maybe I’ll walk for my life at a faster pace. But other than that, nope. This doesn’t feel good.

Waking at an abnormal speed isn’t a solution to having my thoughts perfectly sorted. Maybe it works for others but I need be approaching this by slowing down (Yep! For the billionth time and counting) and working my way out of things. I need to keep calm and slow down.

I’m already feeling MUCH better now.  I will give myself a few more days to feel better and maybe a week to be able to walk again.

Good day!

The Saree Secrets.

Just a couple of weeks back I got a chance to wear a saree after ages . I’m not sure what it is with me and sarees but I have a thing for them. I’m yet to figure this out :) I think I was fascinated about wearing sarees (since 13 or so!)way more than being able to drink, drive, party or anything else people are generally excited about around that age.

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Thank God for self-timer!

Being in Singapore, you don’t always get a chance to wear all your beautiful Indian clothes which are otherwise just catching dust. I have always liked wearing Indian clothes so there were times I would just imagine an occasion for myself and wear kurtis and patiallas to Design School, or be the only 17-year-old wearing a black and turquoise saree at a New Year’s Party.

I thought Arijit Singh’s concert was pretty decent an occasion for a saree! It seems it was also the Rare DiseaseIMG_3451 2s Day. I didn’t know about this till the next morning, but it was surely a big enough reason to wear what felt good. I chose to not wear a sling that day – I let myself do this sometimes. Only SOMETIMES.  So when I  do make a choice like this, I am usually prepared in other ways — 1. I had taken extra pain medication, not just for my shoulder but because the night before I couldn’t get a decent sleep and that made my lower-back feel worse. 2. I  had spent the earlier part of the day being even more kind to my right shoulder, lower-back and knees, and 3. I was out with friends who knew my condition a bit better than the rest, and that always helps. 

With a lovely golden blouse, an elegant black saree, matching earrings and accessories, I think I looked like a perfectly normal young lady on the outside. The truth is, all the not-so-normal things were underneath my saree giving me the right kind of support I needed for that night. And no one even knew!

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I wore my Hush Puppies Body Shoe. All I can say about them is that they’re really ugly but useful. They are not anti-slip, which is scary, but they’re so amazingly comfortable to walk in. I threw away the black pair just a few days back so I had to wear the brown ones.  And of course, my knee guards! There is no being out at a concert (or anywhere) without them!

On the days I need to be out of the house for longer or make sure I don’t need to be carried around by someone, I must have proper footwear. I need shoes which provide me with right kind of support for my high-arches. I need shoes which give my feet enough cushioning so that my lower-back doesn’t cry in pain later. And, if I want to reduce the chances of my kneecaps dislocating even by a small percentage, I’ve got to have my knee guards on. It’s not as if I feel no pain just by wearing Orthopaedic shoes and knee guards, but it’s just that if I didn’t do these things, managing my pain later gets almost close to impossible. I have gradually become okay with the need to wear ugly shoes (sometimes!) with a saree or black knee guards with a short skirt.

About six months back, I threw away my entire collection of heels – right down the chute, one pair at a time. I used to love wearing heels! I could even dance in them easily if I felt like it.  I cried quite a bit that day because it was a massive step forward. I really cried a lot. I let myself cry a lot. I think it’s natural to feel sad each time you have to let go of a part of your past – it’s like giving away a piece of yourself or your old self. I had those shoes in my wardrobe for far too long! I was holding onto the hope that someday, I’ll be able to walk in heels again. Sure, someday I might be able to! But that someday isn’t today. Or tomorrow. Or anytime soon. I realized I was only making things difficult for myself. I wasn’t letting myself accept my changing body and  my new needs. I had to let go of those shoes so I could let go of memories that were holding me back.  And I did.

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The next day I woke up feeling lighter and emptier in a good way. I still felt a sad. But it felt like I had more space in my heart for something new. Anything new.

I had the most amazing time at the concert, even though I was wearing ugly brown shoes that didn’t match my saree at all. I don’t think it even matters that much to me anymore. I’m not always wearing shoes that don’t go with my clothes, but when I have to, I try not to let that drag me back into the past. Really, if it weren’t for these ugly but useful shoes, I wouldn’t have been able to enjoy the concert as much. I got a chance to wear a saree, take lots of photos, watch Arijit Singh perform live and have a nice dinner with a group of close friends after that. I think that was enough for me to say that I had a brilliant day! I had to deal with extra pain later but that’s okay – that’s just how it is usually. It takes me a couple of days to recover from being out at such events.

Slowly but steadily, I’m starting to let myself be what I am right now. It’s not as if I don’t feel bad when I have to pick unattractive Orthopaedic shoes over gorgeous high-heels or make any such choices, but I surely don’t hate myself for having to make these choices. The times I feel upset about these things, I just let myself be upset for a bit. After a while, I come back to respecting the fact that I have a rare body with really rare needs.

Broken Eggs Crisis.

So here’s what happened about a week back.

I was just about to leave home for Pilates. I had a plastic bag on my dining table, full of stuff I didn’t need anymore. Well, it also contained a pack of eggs. JUST as I went to get my phone from my bedroom, that pack of eggs slipped out of the overfilled plastic bag and… yes, within less than two seconds, I had five broken eggs all over the floor…yucky, oozy and yellow…and… SMELLY…. I mean, I can’t  stand the smell of egg yolk while I make omelettes so this was… let’s just say…probably one of my worst nightmares.

I don’t think I had ever stopped…..(in my life of 24 years)…..to think what I’d do if something like this were to ever happen.

So I looked at that mess and wanted to puke. I got a slight panic attack, but I told myself that I need to learn to fix this. Such things can happen in life. Anything can happen in life, right? So I calmed myself down and decided to do this in a strategic manner. With that mess on the floor and my knees in guard, and my right shoulder barely out of a sling… I didn’t want to bend down too many times or use my arms too much!

SO. Since Google usually helps with most things (right?), I searched how to clean broken eggs. Yes. That’s exactly what I typed : How to clean broken eggs.

…..and why wasn’t I surprised… people had searched for it before!

It said : “Put a generous amount of table salt on the broken eggs and let it stay for about 10 minutes.”

I got too generous with my salt. I poured 1/4th the pack of salt all over it nicely, covering practically the whole thing. I let it stay for about ten minutes while I wondered about the chemical reaction that was happening between the eggs and Sodium Chloride…on my floor.

Reminded me a bit of the chemistry experiments we did back in school.

So after about ten minutes, that stuff had hardened up (the salt absorbs the liquid and solidifies the egg) and looked way more bearable. All I needed to do then was to bend my knees just once, use a broom and scrape the hardened egg plus salt combination out onto a dustpan, and then mop the crap out of the floor using 1/2 a bottle of Dettol. Oh yes, I sprayed 1/2 a litre of air-freshener all over the dining hall after that.

I didn’t think I needed Pilates anymore. I am trained to do a lot of functional movements at Pilates and now I very well know why.

Legwork – done
Glutes – done
Shoulders – done
Lower back – done

All checked, all used. There was no need of Pilates. I was tired as hell and all I needed was my bed and my hot bags.

Frankly, I thought this was a fabulous solution!  Had I tried to clean that up with anything else, I would’ve taken much much longer AND I would’ve hurt myself. Plus, I probably would’ve made the mess worse with my puke.

For most people, cleaning broken eggs would be disgusting. But just disgusting. For me, it was more than just disgusting. With it being disgusting beyond my tolerance level, it meant more effort. More effort meant more energy. More energy meant more spoons. More spoons meant more decisions. More decisions meant I may have had to cancel my Pilates. But I didn’t. My Pilates session turned into a half-physio session with my trainer releasing all the tight muscles.

No matter how easy it sounds to clean five broken eggs off the floor, I have to think of making it even easier than that. We say there’s no easy way out for most thing, but these days I don’t care if I waste time to find easier ways out for myself. Maybe that’s the whole point of everything anyway. We have to keep figuring out ways, our “special” ways, to get through things – even if that means to see what Google says. At least it prepares us better for the next time.

My Most Recent Injury : Right Shoulder Pull

The thing about having loose joints is that one can’t quite tell when, where or how exactly they would move out of place. That’s just how it is.

Even if we know the basic positions that can cause the joints to dislocate, sometimes we just forget. Sometimes we don’t realize what we’re doing. Sometimes we don’t think something so small can hurt. Sometimes we go wrong with our positional judgement. And sometimes, it’s just too hard to keep track of it all.

And that’s usually when something goes wrong.

That particular morning all I was doing was preparing breakfast for myself. It’s not as if I was doing something physically strenuous – I  was only making oats! Since the refrigerator was on my right, I reached towards it with my right arm and pulled it open, while still facing the stove. This very position, the outward rotation position, can easily dislocate the shoulder joint. And I know this. Yet, while making oats, I probably just forgot.  And that’s it – that’s when it happened. It was too late by the time I noticed my position – I felt a pull, a sharp pain deep inside my right shoulder joint, as if a little more space was created inside of it. More than what already exists anyway. I knew it had happened again. My right shoulder had moved out of position and I didn’t need a doctor to tell me this.

What’s worse is that I knew I couldn’t do anything about it. I didn’t need a doctor to tell me this either. My arm felt heavy and I was slowly starting to lose control over it. While using my left arm to support my almost-dead right arm, I somehow grabbed two icepacks from the freezer and jumped into bed.

Thank goodness I had Physiotherapy that very day. By the time I reached the clinic, I could barely move my right arm and the muscles around my shoulder joint were turning super stiff. The pain was building, and I could feel it running down my ring finger. My right palm was beginning to turn cold. It was all happening again. All over again. It felt as if I was experiencing a tiny

Déjà vu.

FullSizeRender-1I’ll be honest. There is always a slight frustration that builds up  when something like this happens …because you know it’s time to slow down yet again. Even more than usual.  You know that you’re back to square one in some way or the other. It felt like a year back once again.  My
right arm was back in sling once again.

It affected everything — I couldn’t continue working on my pretty patterns, I couldn’t cook for myself,I needed my friends to get me groceries, I needed help with washing my hair and getting dressed and I started to feel more handicapped than “normal” . The pain level  just got unbearable. This meant more than “normal” exhaustion, which meant I needed more sleep, which also meant that falling asleep became more difficult.

I had my sling on for almost eight weeks before I could even dare to step out of the house without it. During these eight weeks, my right shoulder needed extra attention from my Physiotherapist. This affected the pain in my other joints and made things a whole lot worse in general. I was quite familiar with this cycle.

Because of this incident, my poor left arm had to do more work than usual. It had to help me look after my injured right arm and the other six joints. My left arm is already quite weak due to my unstable left shoulder joint and elbow, so it started to feel the extra stress right away. Through the eight weeks, I was worried whether my left shoulder would be able to handle this!

IMG_2431Now, it’s been almost nine weeks and my right shoulder still hasn’t completely healed. Thanks to the faulty collagen, my body takes it’s own sweet time to heal. I am familiar with the tendency of my body to recover slowly so I’ve been calmer this time. I try to be more patient with it and let it take its time. I’ve learnt that there’s no use pushing it because it’s not going to change a thing. The only thing that happens when you rush this  is that you feel dissatisfied with your healing process. And that’s not very helpful.

People usually find it difficult to relate with the fact that I pulled my shoulder out of its socket (not completely, thankfully) by opening the door of a refrigerator. No, I don’t need to lift anything heavy, fall down, get into an accident, play rugby, swim butterfly stroke, play tug-of-war, get into a fight or anything along similar lines for it to shift out. Sometimes I just need to open a refrigerator. That’s all. It’s not normal, I know. But in some ways, this is very normal for my body.

I feel it’s going to take a while more before I no longer need to carry the sling around and feel the pain finally decrease. But until then, I’ll have to wait it out. That’s the only way to go.