Awake

bmdAwake

I love being the first one awake in the morning
Like you’re the first one to greet God
Like the sky opened at just the exact moment you opened your eyes
It was waiting for you
Like its just you in this world
The first one to crack open a window
To feel the morning breeze
I wonder what’s for breakfast this morning?
Should I go to the gym?
No, shhhhhhh.
Don’t think, not yet
Not when you’re the first one awake in the morning
Put your finger on your pulse
You’re alive
Thank God for that
And love the fact that you’re awake today. 

As shared once before, I love the morning, but more than that, I love being the first one in the house to be awake! The silence, extending your TV time by being the first one to switch it one, the cold breeze, all of it!

When I wrote the poem above early this morning, my sleep had been interrupted by my pain and I decided that instead of stewing in anger, I’d just write something positive to start the day off on a good note. Then it started raining and the morning just became even more beautiful. Don’t you just love the smell of rain in the morning? I do! I wish I could bottle it.

On my instagram, you can hear me recite the poem out loud. Even though I’m not a fan of how my voice sounds on video. 😂

Hope it brought some inspiration and you have a great day. ☁

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Starry-eyed

bsh

Touch the Sky 

 

I painted my nails today 

And touched the sky 

Drowned in black lagoon 

As I waited for it to harden and dry 

Fatigue hit me early in the morning 

The ground was heavy 

With a hint of sparkle here and there 

I was lifted with a spirit so merry 

 

Because fuelled by acrylic, I flew 

And touched the sky! 

 

Hello there! I hope you enjoyed my starry little poem above. What inspired me? My gorgeous nails!

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Painting my nails is always such an amazing form of self-care for me. When the chronic pain and fatigue has me feeling not so fabulous, I pick a colour or two and get painting!

For some reason, today I felt like a good ultra dark and glossy hue with a silver sparkly finish to accompany it. When I finished, I looked at my nails and thought, “I just painted the night sky!” The black resembling the midnight background we see every night and the silver polish with little sparkles looking like a galaxy of stars on my nails. So pretty.

What are your favourite self-care solutions? Do tell!

Life is uncertain, thank God for that!

Sandy Feet

“Our footsteps may be uncertain, but their movement is not.” 

Happy New Year! 🎉🎉🎉

I hope the first two days have been kind and gracious to you. As we all know, this time of the year has the ability to cast a spell on us and encourage us to think that all of a sudden, we can be and do anything. This cloud of inspiration or delusion (depends on whether you’re a glass half full kinda person or a glass half empty kinda person) has us making those dreaded resolutions and never seem to last longer than the first two weeks of January, if you’re lucky.

Personally, I’ve embraced this spell year after year and have always been a resolution junkie. By the time the clock strikes 00:00 on January 1st, my list of plans, goals and dreams for the year is complete and placed lovingly on a wall in my bedroom.

However, this year is quite different. When the cloud came around, I deliberately closed myself off and vowed not to make any resolutions. I haven’t turned my back on my goal setting ways, I’m just taking a new approach. 2017 was an incredibly hard year and every time I set a goal for myself, my chronic pain got in the way and would physically become incapable of completing these goals. As a perfectionist who wants to get things done, this caused little periods of depression throughout the year.

So, since my health is so uncertain, I’ve decided to embrace the uncertainty of life by 1) not making any concrete plans, 2) doing what my body can physically handle everyday and 3) embrace whatever God decides to do in my life and accept what He doesn’t.

This epiphany towards embracing the uncertainty of life has been on my mind for a couple of months now and became quite clear two days ago when I read an article about Polish poet Wislawa Szymborska. In 1996, she explored the concept of uncertainty and particularly, why it is so important for an artist to remain uncertain about where their passion and inspirations come from. In her acceptance speech after winning the Nobel Prize for Literature, she said the following:

“Inspiration is not the exclusive privilege of poets or artists generally. There is, has been, and will always be a certain group of people whom inspiration visits. It’s made up of all those who’ve consciously chosen their calling and do their job with love and imagination. It may include doctors, teachers, gardeners — and I could list a hundred more professions. Their work becomes one continuous adventure as long as they manage to keep discovering new challenges in it. Difficulties and setbacks never quell their curiosity. A swarm of new questions emerges from every problem they solve. Whatever inspiration is, it’s born from a continuous “I don’t know.”

All sorts of torturers, dictators, fanatics, and demagogues struggling for power by way of a few loudly shouted slogans also enjoy their jobs, and they too perform their duties with inventive fervor. Well, yes, but they “know.” They know, and whatever they know is enough for them once and for all. They don’t want to find out about anything else, since that might diminish their arguments’ force. And any knowledge that doesn’t lead to new questions quickly dies out: it fails to maintain the temperature required for sustaining life. In the most extreme cases, cases well known from ancient and modern history, it even poses a lethal threat to society.

This is why I value that little phrase “I don’t know” so highly. It’s small, but it flies on mighty wings. It expands our lives to include the spaces within us as well as those outer expanses in which our tiny Earth hangs suspended. If Isaac Newton had never said to himself “I don’t know,” the apples in his little orchard might have dropped to the ground like hailstones and at best he would have stooped to pick them up and gobble them with gusto. Had my compatriot Marie Sklodowska-Curie never said to herself “I don’t know”, she probably would have wound up teaching chemistry at some private high school for young ladies from good families, and would have ended her days performing this otherwise perfectly respectable job. But she kept on saying “I don’t know,” and these words led her, not just once but twice, to Stockholm, where restless, questing spirits are occasionally rewarded with the Nobel Prize.” 

Whether you are a resolution maker or not, I hope that you too would embrace the uncertainty that this new year might bring, even if it’s just a little bit. And the good thing about the uncertainty of a journey is that even if you don’t know where your footsteps might be taking you, you can be certain of the fact that you are indeed always moving.

LET UNCERTAINTY REIGN!!!

Gimme joy!

Merry Christmas!!! 🌲

On this festive day, I’ve been thinking about how I haven’t had many festive days throughout the duration of this year. I’ve let the disappointment of my chronic pain get in the way so often. This resulted in me not wanting to be around other people because I’d be jealous of whatever happiness and health they seemed to have, not realising that just as I had chosen to be bitter, those people had chosen to be happy that day. Being happy really is a choice.

I’m not saying you should pretend like the pain isn’t there, but you shouldn’t shut out people who want to be there for you and the things that make you happy. Don’t self-sabotage yourself!

Another important thing is not to think that you need to wait for things to be perfect before you can be happy. Within a storm, there will be moments when the rain gets just a little softer. Take full advantage of these moments (without pushing yourself to the limit, more on that in a later post) to enjoy life, your spirit will thank you. If we wait for things to be perfect, then we’ll never be happy because life is never perfect and I refuse to live waiting for something that will never come, and you should too.

So this Christmas, whether you are a spoonie dealing with physical pain or a healthy yogi with a Scrooge-like attitude, find joy wherever you are, No matter the storm you are in. 🙂

Joy
“Life has a way of allowing joy to happen when you need it most. Don’t resist it.” 

Opposing Thoughts 

“I find myself longing for the way things used to be, but at the same time wanting things to change.” 

Have you guys ever had an opposing thought? You know, a thought that contains two opposing ideas in one simple thought? Like mine above? 

These two things, longing for something which has passed and wanting change, should be in a wrestling match, right? Fighting it out in a sudden death round for the prevailing winner. Even so, although these ideas shouldn’t be getting along, somehow they do and they make sense! 

It’s this concept of both good and bad living within us, of opposites attracting. Why is it that things that are so different can get along so well and co-exist? People, objects, and even our own thoughts. 

It reminds me of this story of an old Native American man. He recognised this concept of two opposing things living side by side by comparing his personal experiences of good vs bad to two dogs. One which is inherently good and one which is inherently bad. He came to the conclusion that for every decision we have to make in life, we decide which dog will win in that particular fight. Will we choose justice, fairness, morality and let the good dog win, or will we let selfishness, envy, evil and the bad dog win? It all depends on what we do at that particular moment I guess. 

Whether I’ll continue longing for the past in the new year or learn to embrace change, will all come down to what I decide and what dog ends up winning at the start of the new year. 

Good morning!: My love-hate relationship with mornings

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What do you think of mornings? Do you greet each eye-blinding sun ray that creeps through your curtains with cheer or dread? I bet most people would say the latter. But for me, it’s a little more complicated than that.

You see, I used to adore mornings. The thought of starting a new day that had the potential of being different from yesterday and possibly all the days before just thrilled me! I’d wake up and make goals and plans for the day. If I was particularly chirpy, I’d even make a to-do list. Yep, I’m talking that real life Spongebob Squarepants “I’m ready” kinda feeling. I loved waking up as early as possible so I could have breakfast and watch whatever I wanted on TV without any interruptions or disturbances. When you’re like me and have an older sister who is prone to taking charge of the TV, this was a big deal.

Ever since my struggle with chronic pain though, mornings aren’t so awesome anymore. Anyone who deals with any kind of pain will tell you that it’s always worse in the morning, and that’s the case with me too. I don’t really know why this is. Maybe it’s because your muscles spend all night resting and then suddenly when the alarm clock goes off, they are expected to spring into action. Some days my muscles are just like, “Hell no! I ain’t ready for this!” and as a result, it takes me 30 minutes to an hour to wake up. My brain responds to my muscles with utter annoyance at the thought of not being able to tick off the day’s to-do list to completion.

So now my mornings, once greeted with enthusiasm are now pestered with pleas to let me sleep for five more minutes. My mornings are now like that frenemy in school you used to be close with but now can’t stand.

You don’t have to live with this confused state though. Here are a few things that help me make my mornings great, even if my body doesn’t share the same attitude:

  1. Set your alarm for earlier than the time you actually want to get up – I know that waking up is a struggle already, but setting your alarm for 15, 30 or even 60 minutes before the time you actually want to get up will get your mind used to the fact that it is indeed awake. Just lie there or sit up and soak in the sounds of birds chirping happily outside.
  2. Get moving – Now that you’re awake, put your feet on the ground and stretch out or do some yoga. This will let those pesky muscles of yours know that you won’t succumb to their whinning! If you’ve got the energy, you can even go jogging!
  3. Make your to-do list flexible – We all have things to do daily, but if you are a spoonie, you need to be kind to yourself and know that it is ok if you don’t complete every single thing on your to-do list. All you can do is your best.

Guys, do enjoy your mornings anyway you can. After all, they are literally the beginnings of everything we do.

 

Living that #spoonie life 

That’s the thing about pain, it demands to be felt.” – The Fault In Our Stars 

When you live in this world, you cannot avoid pain. Pain is that uncomfortable sensation that manifests when your body and/or mind tries to tell you that something in the way you’re leading your life at the moment is not really conducive for it to thrive as it should. Pain comes in so many different forms that it would take me ages to sit here and attempt to define every kind of pain imaginable. It is nearly impossible! So to make things a lot easier for me, I’ll be using my own personal experience with pain to try and delve into this complex topic which has seemed to eclipse my life in the past year. 

The sort of pain that I’m personally dealing with right now is a physical one.  Till the year 2015, I had been relatively healthy. I mean, I sucked at sports in school, but was never a couch potato. I exercised at home all the time (remember those cut-out exercise routines Seventeen magazine used to have?) and even trained with the athletics team in high school just so I could keep fit (well, someone has to be brave enough to carry the title of last place!). I carried on with this enthusiasm even after high school and was dedicated to the exercise DVD that my Life Orientation teacher gave me on the last day of school. So it came as a surprise when all of a sudden, my body seemed to rebel against me. 

It started small, with headaches and tiredness that came and went every time life got a little stressful. Quite normal, right? All you need is a nap and you are ready to take on the world again. Then the tiredness became more severe, turning into full-blown fatigue. At this point, naps were starting to lose their effectiveness, because I’d wake up just as tired as when I went to sleep. That’s  the difference between tiredness and fatigue. A little rest can cure tiredness, as if it was never there in the first place. With fatigue, on the other hand, no matter how many times you rest, it never seems enough and it lingers on and on. 

The headaches I was having soon became severe too. Instead of the usual pain that I felt on my forehead, I started feeling pain at the back of my head as well. This quickly spread to pain around my nose, cheeks, then ears. My jaw, chin and upper neck soon followed. This pain would creep up on me every time I did something important and stressful, like study or drive. I brushed it off as stress and anxiety, two things I have struggled with in the past, even though this pain was so unfamiliar. 

At this point, my mom and I debated whether or not to get our doctor involved and decided that we should. My doctor, who was the only GP I ever had (we started seeing him when I was four years old) and whose advice I trusted like gospel, assumed it has sinus problems. Ok, cool. So I would just go home with my treatment and antibiotics in hand, take them as directed, and all will be fine, right? Wrong. The treatment seemed to work for some time, but then the pain returned, same as before. So back to the doctor I went and stronger sinus treatment was prescribed, but alas, the pain remained like the stench of mould in the kitchen after a rotten potato has been thrown away. It went on like this for a while: pain, doctor, stronger sinus treatment. I went through so many cycles of antibiotics! 

My GP had now abandoned the “sinus issue” idea and decided to re-examine me again. He felt something irregular along my upper neck and scheduled me to get my tonsils removed, which has not so easy for a 20 year old. Above the age of 12, a person is considered too old to have a tonsillectomy. So you can only imagine the uncertainty and fear I felt! I asked him if this would get rid my facial pain and he just said that he hopes so. 

After the tonsillectomy,  I was expected to be ok again after two weeks of healing, according to the nurses. However, this body of mine took around three to four months to heal from that. I spend about one pain free week and then the facial pain returned. Now stronger than ever! It had evolved, somehow. Before the tonsillectomy, the pain was more of a throbbing pain, but after the tonsillectomy, the pain was now a burning pain. Like literal fire on my face! Now I was angry. False hope of healing has dangled in front me, only to spit in my face and let me deal with this all by myself. 

I was then advised to see a neurosurgeon. The neurosurgeon suspected that there might be something wrong with the nerves that connect the base of my skull with the rest of my face and are responsible for the sensations our faces feel. So I was diagnosed with Trigeminal Neuralgia. I started treatment for TN for this did not work. Then I went for stronger TN treatment and that still didn’t work. This went on for some weeks until I booked for an infiltration. The infiltration was a procedure where a really long injection is inserted through the side of your cheek to eventually reach the nerves at the base of your skull in order to sedate the nerves so that when blood pumps through those nerves, I don’t feel pain. I only had the right side of my face injected because the neurosurgeon wanted to first test out if it would work before injecting the whole face. After the infiltration, I spent about two days without pain on that right side, only for the pain to return as if the infiltration never even happened. Yeah, I wasn’t just angry now, but frustrated. 

My GP then decided to send me to a maxilo-facial, confident that he would be more qualified dealing with this than a neurosurgeon. The maxilo-facial blatantly stated that I had been misdiagnosed. According to me, I did not have the symptoms for TN, but rather a TMJ disorder. What this meant is that the temporomandibular joint (TMJ) that connects the jaw to the rest of the skull had some damage, causing the face pain. What caused the damage of my TMJ, especially on the right side, was suspected to be biting too hard on my teeth, mostly when I’m sleeping and stressed. The maxilo-facial put me on treatment, but also advised me to go see my dentist so he can make a bite guard that I would need to wear every time I sleep and when I’m not eating in order to limit the grinding of my teeth and create some space between the jaw and the skull. The TMJ treatment was not working, so eventually the maxilo-facial gave up and confessed that he has no idea what’s wrong with me. 

Since no one in my real life was giving me the answers I needed, I turned to the internet. What I discovered is that the pain I have is similar to that of fibromyalgia, which is a disorder that causes limiting pain on a person’s muscles. According to the internet, a small percentage of people who suffer from fibromyalgia have facial fibromyalgia, which only affects the muscles in the face and neck, instead of all the other muscles in the body synonymous with normal fibromyalgia. This all made sense to me, so even though I haven’t been professionally diagnosed with this and therefore don’t have treatment for it, I have found comfort in this because maybe, just maybe, I am not the only one dealing with this somewhere in the world. I still wear my bite guard though, and it does help a bit. 

Another thing I discovered on the internet was the term “spoonie”. This term was coined by writer Christine Miserandino in a post entitled “The Spoon Theory”. Miserandino came up with this one day when having dinner with a friend and the friend asked how it was like living with chronic pain. She replied with the theory, which demonstrates her ability to carry out daily tasks by counting spoons. According to the theory, we all wake up with a specific amount of spoons, which represent the tasks that need to be completed for the day. For someone with chronic pain, simple tasks like having the energy to get out of bed, take a shower, prepare breakfast, etc. limits the amounts of spoons we will have left at the end of the day. Before you know it, all your spoons are finished at it’s only 11am. 

There is a whole online community of #spoonies and in a world where the people in my real life (and most of the time me too) may not understand my pain, I know my fellow #spoonies are with me, and I with them.