Mood Update.

Yes.

Been feeling under the weather past couple of days. I plan to give it about a day or two more to see if things improve. I’ve got the medicines I might need on hold….but until then :

Messy hair ✓

sweatpants (fine, maybe shorts) ✓

 book ✓

 bed✓

and lots of warm tea  ✓

Maybe I’d do with some hot soup and dark chocolate truffles….

 ❤︎

Garbanzo Beans With Spinach

This is one easy-peasy recipe with simple ingredients and it requires barely 10 minutes to prepare!

Garbanzo beans contain high levels of Vitamin A, B and C and  have anti-inflammatory properties.FullSizeRender-2 They’re a great source of protein, especially if you’re a vegetarian. I’ve never been that much of a  meat-eater so it works well for me too. A couple of things to keep in mind while working with garbanzo beans, or any beans for that matter – First, beans are known to cause gastric so it’s important to that they are soaked and cooked well. You can always search “How to cook beans the right way”. You could also just use canned garbanzo beans if you’re okay with preservatives etc. Second, for the same reason, it’s  recommended that we eat beans with a good portion of vegetables, preferably lots of greens. I like to use more spinach than garbanzo beans in this recipe because I love greens. Third, if possible, eat only one protein in same meal as each protein requires a specific type and strength of digestive juices.

I’m constantly looking for ways to reduce the number of steps involved in my cooking… even if it’s by a couple. Trust me, even that helps. Peeling and chopping garlic was always an effort; especially when I needed it to be finely chopped. Holding a little clove of garlic down onto a chopping board and then using a knife to chop the clove up (that’s just one clove!) would get too stressful on my fingers and wrist. I first came across pre-peeled garlic a few months back, which was great for the time being, but not enough to make things really easy. Just a few weeks back however, I found a small pack of raw chopped garlic and THAT was it! It made my life much easier. Plus, it stores well in a refrigerator for about two weeks.

Another thing I do is to use a pair scissors to cut (chop) up chillies or sometimes even the leafy vegetables. Whether I use a knife or a pair of scissors really depends on the joints are hurting that day and my exhaustion level – sometimes I find that using a scissors is in fact easier  than using a knife while sometimes I feel washing one less of an item is worth it!

Here’s the recipe :

Ingredients

1 tablespoon chopped garlic

1 chopped red chili

1/2 cup spring onion

1 teaspoon cumin seeds

1/2 teaspoon dijon mustard

1 cups soaked garbanzo beans

2 cup spinach leaves

1/2 teaspoon onion powder – I prefer using this to fresh onions in some recipes

1 tablespoon olive oil

Salt to taste

Juice of 1/2 a lime

Fried onion or parsley – optional

Preparation

In a skillet, heat olive oil. Then, add chopped garlic, chopped red chili and cumin seeds, and sauté until garlic turns slightly brown. Next, add spring onions, garbanzo beans and lightly sauté till the beans are evenly coated. To that, add dijon mustard and mix well. Add spinach leaves, salt and cover for about 4 minutes. Do not add extra water; let the spinach cook in its own juices. Finally, squeeze in  lemon juice, add rest of the spring onion and garnish with fried onions or parsley.

Serve with toasted bread, brown rice or enjoy as is!

❤︎

Tired After Hair Wash.

I used to wonder, is it really possible to be that tired? I mean, I don’t think I even knew what it meant like to be tired back then. Silly things were “tiring”.

Too much work at school, and I’d say “I’m tired today!I had a test… and then ECA….”

Ran too much in the gym, “Wow! That was tiring!”

Cycled too far,” I’m tired now but that was freaking awesome!”

Sleepover with friends, ” We chit chatted all night at her house, made peanut butter toast … I feel so tired now. Need a nap.”

Blah Blah and Blah Blah tired Blah. Tiring Blah blah. Blah tiresome blah!

You know? I’m sure I could think of such instances when I was just pure tired. I know I was tired back then too. Just different tired.

Lately, the word tired feels like it has a different meaning altogether. It has transformed from one level of physical exhaustion  to an entirely new dimension of  feeling as if you are bogged down by 200 Kilograms of iron tied down to your body. And usually, you manage to drag it along because you get better at if. Of course you do! Because you learn to adapt, make changes, you realize new things about yourself which in turn helps you feel lighter(or stronger!) and perhaps a little less mentally tired at the least.

But there ARE times you really can’t do anything about it.Even if you’ve learnt to cope it, there are times you feel it eating you up….

Like yesterday! I needed to wash my hair, and I know it takes me way longer than it used to. I8bcc2d9046bed747405977b43d36217d have to take my time to shampoo and condition my hair and give my arms enough rest through the process and so it takes longer than it used to, even with hair almost half the amount I previously had! It can hurt like crap sometimes – holding your arms up while you shampoo and condition your hair (thick, curly hair…) and then once again to rinse it all out…your fingers can hurt, you wrists beg you to stop… you know, in short… it’s not like before. But anyway. By the time I had nice and clean hair, I was so TIRED (yes, now this is what I mean by tired) that I could’ve just fallen asleep in the bathroom – literally ‘fallen’ asleep right there and I’m not sure what would have happened next.

I managed to walk myself out of the bathroom, threw on a dress and just flopped right onto my bed and slept off within seconds. Magic. It doesn’t happen all the time. I wash my hair a few times in a week, and even if  I’m ridiculously tired sometimes, this doesn’t always happen. Has it happened before? Yes. Several times. There have been times when I planned to either get work done, or freshen up and go out after shower, or after a longer version of shower because of hair wash, and I ended up just so tired that I slept instead.

Going back to yesterday, I was so low on energy that my body just said ‘goodnighttakecareicannottakethisanymroeandiamgoingtosleepnowbye‘ and there I was, back in bed just about an hour and half after walking up. I think I managed to sleep for almost two hours and when I woke up, I felt like a total zombie. I didn’t know what time zone I was in and I had no clue how I landed up on my bed.

I was completely wiped out!

It’s kind of funny though, now that I think of it. These things are funny. OK first off, I think I’d hurt my body a lot if I actually were to just fall asleep in the bath. Second. Ouch! I don’t even want to imagine how I’d get up! Third. Who’d have thought I could ever be so tired that there was a possibility of me sleeping in my tub? :)

Well… now that I know it’s all just part of it, I don’t question my body too much. When something like this happens to me, like I just collapse on my bed, I take it as a sign – it’s a way for my body to communicate to me that it needs even more rest. I do give my body quite a bit of rest, but I can’t always ensure that it gets the right quality of rest it needs. I believe I need to make more changes in my life in order to feel that sort of rest someday. More things  need to shift and fall in place. It’ll happen. But for the moment, yes, I think I provide my body with as much rest as it needs and yet there are times it  just demands more out of me…

I keep telling myself, “Keep Calm And Trust Your Body”

It’s become a mantra these days.

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Frankly speaking, when I feel as if I need help with things like washing my own hair, I just ask. There have been times when my shoulder joints have been off position, so  obviously there have been times I needed help. There is a part of me that still wants to be able to do everything myself and I think that is just so natural to feel this way. Come on, it’s your hair and you want to be able to wash it yourself! However, the more I realize that there is nothing wrong with asking for help… the more the voice inside of me that says it’s wrong to not be able to do something yourself calms itself down. It’s not wrong at all. We have a body, it has its own limitations. We have a strong mind along with that, so I’m sure we know exactly when we can or can’t do something. There is no reason to hide and there is no reason to act like it doesn’t hurt… if it actually does! I’ve learnt this along the way. The more true you are towards your pain, to yourself and to others, whether others believe it or not, the better it is in the long run. So it’s not wrong to come home to yourself and realize that hey, I can’t do something. What is wrong for sure  is to push your body beyond its limit and hurt yourself to an extent that you can’t do anything for yourself or others anymore.

Talking about the possibility of me sleeping in my tub…. if you can’t quite reach me, if I’m not answering your calls or texts for too long and it’s not really my afternoon nap time….

……you know where I could be. Just saying.

❤︎

Recent Visit To The Pain Specialist

Just a couple of days back I went to see the same Pain Specialist who had diagnosed me with HMS about three years back. Since then till now, I never really felt a need to see him because I was thought I was equipped with all the tools I needed in order to manage my pain. There was really nothing much he could’ve done then, except to put me on more pain medication. I have had enough pills from the other Specialists who help me with managing different joints in my body and most of them are convinced that there is nothing much that can be done – this is a condition that requires lifestyle change, lots of personal care and pain management, along with visits to hospitals when something shifts way off or something.

The main reason to go back to this guy was really to see if I was on the right track, and if he had any other bits information that may be useful to me right now. I remember very well what a a terrible state of mind I was in at the time of the diagnosis, so I thought I’d be more receptive to new information now.

After giving him a quick update of how I spent the last (365 X 3)days  getting to know my body and involuntarily hurting other joints , he did a quick check-up of all my joints and trigger points and asked me more questions about how my life has been. It’s more so at a Pain Specialist or at a Complementary and Alternative Medicine therapist that you’d have to answer questions about life etc. Most of the other Specialists, although very caring and supportive in general, tend to end with questions about your work or school. Nothing beyond. And sometimes not even that.

I think I was able to speak about my health more confidently, so that’s a good sign already. I had done enough homework till now to fully understand my condition so I’d say it was  both good and bad that he had no new information for me. What I got out of the appointment though, which we all need sometimes, was validation. All his suggestions were things I was either already doing or trying to work towards.

He introduced another way of looking at pain management – he said there are three angles to this – Biological, Psychological and Social. Biologically, when you are dealing with an illness like HMS, you can provide your body with right medication and supplements in order for the pain and discomfort to become slightly more bearable or manageable. Psychologically, one would need to figure out ways to manage or entirely kick-out unnecessary stress inducing  factors, work through difficult emotions and find ways to relax, stay present and positive,  while working towards a sustainable future. Socially, one must be surrounded with loving, caring and supportive people who make an effort to understand the pain, or at least are a little sensitive towards it.

That was a good way of looking at things! A simplified version of what constitutes health for most of us! But of utmost importance for those dealing with a chronic illness.

He explained that with illnesses like such, when we know we can’t do much about it at the moment and that there’s nothing out there to cure of fix it, all we can really do is come to terms with it, and finally start building a lifestyle that works for us. What I understood out of all that was that we need to build a lifestyle that we can keep up with. A lifestyle which works for  both our body and mind. And one that basically keeps us moving forward, no matter how hazy  the future looks. And no doubt ….. this can take time. It can take time to first, come to terms with limitations. Second, to then figure out possibilities. And third, to finally pick something that you’re able to sustain, something you’re passionate about and something that makes you smile, even through the limitations of a rare illness.

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There’s lots to figure out and of course it can feel daunting. It’s hard to stop thinking about how it’s all going to turn out, especially when you feel a little helpless right in the present. If I start to feel helpless, I have to quickly remind myself that I am, with all honesty and with all that I’ve got right now, trying to help myself. And that’s not called being helpless. Helping your body feel better requires a lot of time, patience, care and love.  I know it takes time for our body to respond and it gets tiring to wait. It tires me out sometimes too. But the story continues… and we must as well.

Towards the end of my appointment, the Pain Specialist said, “I think you’re doing your best. You are working on strengthening your muscles, which can take time. You are following your Ayurvedic routine and trying to eat healthy. You are making major changes to your lifestyle and taking steps towards figuring things out given your current limitations….I’m not sure what else to possibly tell you to do at this very point. You know what, continue doing what you’re doing and if you need more help with managing your pain or if you ever decide you need more medication, let me know.”

I was determined to not take any medication from him. Nope. I have been on pills for the past five years, have tried several types of pills, with varying combinations and I honestly don’t think I want more of that. What I take right now is working for me and I’ll let it do it’s job of supporting me while I do my part of working on other factors which could help my body feel better.

So on the way out of his clinic, I concluded that I didn’t need to see him anymore. And that whatever I’ve been trying to do over the past year or so is what I must continue doing.

❤︎

Article : 7 Behaviors Most People Think Are Negative That Are Actually Healthy

Came across this article today and thought it was something we need to open our mind to. A fresh perspective to how we look at certain behaviors.

We are often taught to not be angry. To smile, to act as if everything’s okay. How often are we taught to learn the lesson behind that anger? How often are we taught how to positively express that anger? How often does anyone hold our hand and say, “hey, it’s okay to be angry. Take your time, I’m here for you.”

We are often taught that being lost is a bad thing; that we must always know our way. Everything must be in place. How often are we taught to accept where we are and slowly figure things out? How often are we told that being lost doesn’t make you less competent?

We are often taught that crying means weakness. That men can’t cry or strong people shouldn’t cry. We so easily relate tears with emotional and mental weakness. How often are we told to just let it out instead, to cry like never before because crying doesn’t make us weak?

We are taught to distract ourselves from our emotions. And that being alone makes us anti-social. We prefer distraction over being alone. How often are we taught that being alone is of  vital importance to our growth? How often do we really sit alone, with all our emotions and thoughts, let our guards down and just be? How often are we allowed to be alone, with support and understanding from friends and family?

We are often taught to listen to those who are older, because they are “wiser” or to meet expectations that others have of us. How often are we told to have discernment as to when to listen to others and when not to? How often are we told that listening to others can turn us into someone we don’t want to be?

We are taught to follow all kinds of rules, and thah rules are meant to be followed.  How often are we told that some rules need to be broken in order to feel your own freedom, express yourself and go past all your fears? How often does someone sit beside us and tell us to go our way?

We are taught to be like others. We are taught that being like others and doing what people around us do is the way to go. We tend to follow a certain set of beliefs because we think we must. Who are these “others”?  How often are we encouraged to have our own set of beliefs? How often are we told that it’s okay if our beliefs are different from others around us?  How often does anyone tell us that being different is good, that different doesn’t mean bad; that it just means different?

How often are we really us?

❤︎

A Little About Yesterday And Today

I had a crazy day yesterday. Fun day but a crazy tiring day.

2 friends. 2 Birthday dinners. 2 different places.

Knowing my body well, I had made plans of meeting both of them separately. As a matter of fact, I can only manage meeting one person or one group of people in a day if I must. I know this. But like I am learning these days, a lot of things are completely beyond my control. So interestingly enough, and as expected (I kind of had a hunch), both the plans just happened to clash. Mainly because I suddenly had to go for a Doctors appointment.

So a super long story cut short, I was stuffed. I had a lot of nachos at both the dinners :) I’ve never had 2 dinners back to back ever in my life. Serious. So this was a bit insane. Yummy nonetheless.

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My brother and I snapchat quite a bit.
Before I left home for Pilates around 4:30pm,  I was packing up as if I was going for some sort of an adventure. Actually, I felt like Little Red Riding Hood; except there was no mean wolf or an ill grandma involved.  And I didn’t wear a Hood. I was prepared to be home rather late, sleep late and get up early as usual. Not something I quite like to happen to my routine…but come on, most of the days I  make sure that no one steals my *spoons.  Some days, I’m willing to give a few away. Like yesterday, for these two friends. Because it was their Birthday!

Giving away spoons or using up spoons can sometimes be  conscious choice, though most of the times, it’s not. We try out best to save our spoons but they’re either just taken away from us or they sort of keep falling off our hands as we get through the day. It requires a heck lot of preparation on my end on the days I make a conscious choice to give away a couple of my spoons. I generally have to take extra pain medications, rest more before that, mentally prepare myself for the exhaustion that might come along with it etc etc. A lot of times, even this extra preparation fails and I have to cancel plans. Which is not something I like to do. I never did.

I am glad that I managed to wish both of them on their Birthday. It did take a toll on me but on some days, I’m okay with it. It’s always nice to be around friends on their Birthdays! Oh, we got some really nice photos too! One of  my friend’s cut a fish (we had ordered fish & chips) as her ‘cake’ and the other one cut a rainbow cake. In fact, it was my first time trying a rainbow cake. It reminded me some lemon zest cream biscuits from childhood!

I got home last night around 11:30pm, feeling like a complete zombie, guarding my joints as far as I could and feeling like I’d fall apart any moment. I was in pain beyond anything. But I was prepared. It didn’t piss me off like it used to before I learned to be okay with my body. I have to be patient with myself. It didn’t hurt me. I didn’t want to cry about my body being in pain. I knew that it was a choice I made for a couple of my friends; a childhood bestie and a Design schoolmate.

Unlike before, I knew how to attend to this pain a bit better. I changed out, took a warm shower and jumped into bed. I oiled up all my joints and finally gave my back some rest. Sometimes I think I’d die without my bed. I wish I could carry my Orthopedic mattress around, just lay it open where ever I wish and rest.  Anyway. I was home finally; some seven hours later. Seven hours that felt like eternity.

I couldn’t sleep till 3am. Three AM… Of course, I was physically just gone. I had no energy left. But being physically gone not equal being able to sleep right away or sleep well. For most of us with HMS, extreme pain comes along with extreme fatigue, which sometimes means extreme sleeplessness. Also, I’m noticing these days that it gets a little difficult for me to fall asleep if I meet too many people in a day. I feel so low on energy . Sometimes I feel so drained out that I wonder why I even went out. It’s not something most people would be able to relate with. I was up again at 7am, feeling brain-dead and totally out of spoons. It really really really (times three) took a lot out of me to get out of bed today.

If this were me 5 years back, I could’ve met 3 groups of people at 3 different places, travelled around in public transport, and still had the energy to be home at 11:30pm, shower and get back to work if I needed to. But that’s not the case anymore. Well, not that I used to do too much of that back then.. but we get the point.

Things are changing. I am changing.

Today too, was a long long day. It was just a check-up and update sort of an appointment.  I had a really low blood pressure when I reached the clinic. My heart rate was on the lower side too. The nurse looked at me (I was wearing my gym gear) and asked me if I was an athlete. I smiled and said , “Nope, no where close to one!” By the time I was done with the doctor, I was starting to develop this sick ‘space’ in my head. Brain fogs usually start this way for me. This airy, space-y gap starts to develop in my brain, between my thoughts. It’s not a good space at all. It feels like your brain has gone on  vacation and left a note saying ” Sorry. OUT OF OFFICE.” You’d think that must feel good. But it doesn’t. It’s not a happy space where your brain is enjoying a “break”. It’s more like you brain has had enough and wants to be left alone. Things around me start to slow down. Everything goes on a slow-mo setting.

A  friend of mine was kind enough to accompany me to the Doctor today. And today specifically, I’m so happy someone was around. I don’t usually fall asleep in cabs… Today though, I couldn’t keep my eyes open. I was zoning out a little bit and the only thing keeping me up were the jerks and humps on the road. I think I’ve had worse brain fog days for sure. Today isn’t as bad, but the fatigue from yesterday together with today’s doctor’s appointment probably got a bit too much to handle.

I was in bed for almost an hour and a half before being able to get up and walk around. I really wanted to be around water, the beach or something… But I was far too tired to get there. So I went to sit by the pool instead. I even took a small walk around my apartment, had a warm shower, got changed and decided to type this out.

I don’t think I’m going to be able to meet anyone in the next few weeks. I just don’t have the capacity. I feel like my battery has run out and it’s going to take a while to recharge. This means I’ve got to be honest with people around me and also be honest with myself about what my body can manage.

That’s all for today. I need to get into bed earlier than normal tonight and get a good rest. I want to sleep like a baby.

Goodnight all.
❤︎

P.S. I do not know what’s up  with the alignment. I don’t like how it looks so I’m going to imagine that it looks fine.


*’Spoon Theory’ by Christine Miserandino (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/).  A lot of people have been using her theory to explain what it may feel like for us. I would refer to it as a count of energy of some sort. It’s great how she’s explained it though. 

Tip Toe If You Must, But Take The Step.

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I’ve been tiptoeing quite a bit since last year. One tiny conscious step at a time, I’ve been making changes to my life, all in an attempt to welcome a new way of living. In the right direction. I’ve taken some really big steps and some not so big ones – but I’ve take a step forward and that’s all that matters. I’ve made an effort to let go of certain things and accept a whole lot of other things.

Throughout past couple of years especially, I felt a need for change deep within me; right in my core. I always felt that things were too out of balance. I knew what I needed, what I was secretly craving.. but because of how my health was doing and for other personal reasons, I was never able to actually take the necessary next steps towards fulfilling those needs. There was always something holding me back or tying me down. I knew being where I was at that point was beginning to weigh me down and that just didn’t feel right anymore. I had to move on. I knew I had to move on. I knew I deserved to move on too, even with an illness. Yet, I couldn’t. I found myself  ‘trapped up’ in circumstances I didn’t quite create for myself. I needed to move forward for my health… but it was also my health holding me back a bit. The fear of not being able to manage was hard to ignore.

Then sometime after my Birthday last year, I felt this strange kind strength inside of me…deep in my core again, this voice that said, “Do it. You know what you need. You know exactly what it is that your body needs. You know how badly you need what you need. Do it.” I was afraid.  What if this was the biggest mistake of my life? What if I couldn’t manage? What if I didn’t figure everything out?  What if I needed help? What if I needed extra support? What  if this and what if that? My brain was going all out in order to scare me. To make me think. To protect me in some ways. It was only doing its job. But there was this other part of me which knew that no matter what came out of the decisions I took, no matter how scary things were, no matter how painful things could get… I could no longer continue being where I was. I couldn’t possibly allow myself to be stuck where I was just because I had no answers to what future holds for me.  No one knows what future holds for anyone anyway. I wanted a change. I wanted to know I could look after myself. I wanted to see it happen. The urge for the present to change began to feel MUCH GREATER than the fear of not being able to manage. Something needed to change. Something had to. I was starting to see beyond the fear.I couldn’t  disregard what my body needed.

Sometimes we know exactly what need to change and how to change it… but we still can’t get ourselves to make it happen. Something stops us… our thoughts, our emotions, people, circumstances, culture… beliefs…this list goes on. And then suddenly one day we find ourself in a place we don’t quite like. It happens to all of us. So before anything got worse, I thought it was time. For once, I trusted myself for knowing that my journey was real… and even with  all the fear trying to hold me back, I gathered every bit of courage I could find within myself and took a massive leap of faith. I had waited by the cliff too long and saw nothing change for me. I stood there too long. I didn’t need to anymore.  I had done my bit. My body was falling apart. There was no turning around and going back. I didn’t even want to. I just wanted to jump off, even if that meant falling down again. I wanted to jump off because that felt better than hanging on.  I took the leap, without any clear answers for tomorrow. Isn’t that what a leap of faith is all about?

I did it. And now some six months later, I  am still tiptoeing. Slowly. Steadily. I’m learning. I’m alright.

❤︎

Today Is The Right Day

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It requires conscious effort to really embrace the present moment, accept how things are and do the best you can do in order to live today. But I understand now that it’s important; especially for those of us living in a ‘rare’ body. Because things can get really very uncertain. Each time I drift into the future too much, I make an effort to bring myself back to now. It does require a lot of practice and quite a bit of conversing with myself, over tea or something.. but then that’s the only way to move forward. To know what today is like, to make the best out of today and be hopeful about tomorrow. Keep going. One day at a time. One step at a time. Sometimes even  just one hour at a time, really.

It’s kind of a daily practice now. To think about now, now and only now.

For now. 

❤︎