I used to be scared to talk about my health, but I'm not anymore.
I used to be afraid to plan ahead, but I'm not anymore.
I used to be hating stairs, but I'm not anymore.
I used to be fit, but I'm not anymore.
I used to be very emotional when friends got babies, but I'm not anymore.
I used to be the world's own optimist, but I'm not anymore.
I used to be thinking I had a chance at finding love easily, but I'm not anymore.
I used to be insecure about giving up friends, but I'm not anymore.
I used to be walking like a penguin, but I'm not anymore.
I used to be afraid for the morning after a night dancing, but thankfully, I'm not anymore.
A new study claims green tea with
ginger, cinnamon and red pepper, topped with hot milk foam could be a powerful
weapon against rheumatism – one of Europe’s most occurring chronic diseases.
Drinking one cup of tea every day
could halve your chances of developing inflammations, which make the disease so
painful, it says.
This combination of spices can be
traced back to Asian times. It used to be an established treatment, before
western medicine was developed.
Because of this, it is already taken
daily by more than two million sufferers in Europe to protect against further inflammations
and pain. Thousands more take it to ward off cold feet.
But this latest research is just one
of a flurry of studies in the past few years which have claimed that these
powerful spices may also help treat other illnesses - including painful
stomachs, insomnia, cold hands syndrome and headaches.
So is green tea with ginger,
cinnamon and red pepper, topped with hot milk foam, really a wonder drug that
we should all be taking every day to ward of potential inflammations? Doctors warn that long-term or high
dosage use of this combination of spices can, in rare cases, cause irritation
to the stomach lining and mood changes. For this reason, you should always consult
your GP before taking this spicy tea on a daily basis.
They also claim that much more
research is needed to back up the claims made for the tea in recent studies.
This is because many of the studies so far have not been clinical trials. Clinical
trials involve several hundreds of patients taking the tea or a placebo daily,
over a number of years, which is the only way to prove that this miracle tea really
works.
So is green tea with ginger,
cinnamon and red pepper, topped with hot milk foam, the new miracle cure for rheumatism? We
will keep you posted.
Who would you love to
invite for a perfect dinner? Who are, or were, the people dear to you, with whom
you would love to catch up, and share memories? Perhaps, if possible, once more?
The first person, who
I would love to invite, would have been my grandmother. She passed away 13
years ago, and she was special to me. She was lovely, quiet, but a strong
woman. She suffered from Rheumatoid Arthritis for many years, and I would love
to speak to her about it. I would love to hear her experiences, and learn from
her. Plus, I would love to hear her sing in the kitchen while preparing food,
like in my memories of her.
The second person, who
I would love to invite, is a dear friend. She is always happy to listen to my
stories, experiences, worries and moments, and it doesn’t matter to her if they
are embarrassing, funny or sad. We studied together, and we still share a lot
of interests. We can basically talk for hours. She’s an intuitive and sensitive
person too, and I’m just incredibly lucky to have her as a friend.
The third person, who
I would love to invite, would be an old friend. She passed away too. She was
far too young, and she spent her last years battling cancer. I would love to
hear her laugh once more, hear her funny accent again, and would tell her that
I am sorry that I was so bad in staying in touch with her.
The fourth person, who
I would love to invite, is a friend from years ago. We spent some time together
during our studies. He was special to me. It just wasn’t the right time and the
right place. Even though, I kept on leaving countries and built a lot of walls
around me, we had amazing talks whenever we met, and there definitely was a
spark. Probably, there still is, when we would meet again.
The fifth person, who I would
love to invite, is someone, who is kind of special to me right now. I know him
already for a long time, and I would love to open myself up more, so he gets a
chance to know the ‘real me’ too, including my health situation and my uncertainties
for the future. If I keep on building walls around me, I won’t be able to love
myself, nor can I become loved by someone else.
“The sheep had taught
him something even more important: that there was a language in the world that
everyone understood, a language the boy had used throughout the time he was
trying to improve things at the shop.
It was the language of enthusiasm, of
things accomplished with love and purpose, and as part of a search for
something believed in and desired”
The Alchemist, by Paulo Coelho, page 62.
When I opened the book I am reading now to point to a
random point to get a sentence to analyse, or even better, get inspiration
from, I only found dialogues about divorces. As I, thankfully, don’t have any
experience on that field; I knew this #HAWMC prompt would become a tricky one.
One of my most favourite book quotes is from ‘The Alchemist’, a book written by Paulo Coelho. Therefore,
I decided to write a few lines on my blog on this quote from Paulo Coelho.
The
whole book ‘The Alchemist’, is filled with potential quotes, lessons to be
learned, inspiration for life and wisdom. It’s about a boy on a life journey,
travelling and finding his destination and purpose in life.
I especially love this quote, as it shows that we, wherever
we may be living in the world, share something. Whereas there are thousands of
languages and dialects, we all have our share of enthusiasm in our bodies to
give to the world. Enthusiasm that makes us lively, spot on, passionate and
attentive in our attitudes toward children, people, passions, and yes, even
work. Enthusiasm makes us laugh, gives colour to our cheeks, makes us sing and
dance, and enables us to conquer our more difficult situations. This quote
helps me in my search for something I believe in, and my desire: A healthier
world. To accomplish my share to get to this stage, or just help to improve my
current world, I need enthusiasm and passion.
Even my first memories from primary school, when I was
about 4 years old, were that I didn’t really fit in. Basically, that stayed during
my whole primary and secondary school time. The other kids in class were
different; or rather, I was different from them. I loved doing things on my
own, such as drawing, jigsaws, and craft projects in class. Other kids loved
playing in a group outside, I didn’t really like that. I couldn’t run as fast
as they could, I wasn’t very good in playing hide and seek, I definitely wasn’t
the best in maths and I didn’t like gymnastics, as I was always picked last for
a game. I wanted to try out other things, loved geography, loved going on
holidays and loved playing with kids who I only shared a few words in their
language with.
In university, my life changed. When I was only 16
years old, I was living in a student flat. Away from my hometown, I found
myself amid a group of new potential friends. People who were more similar to
me, whom I shared interests with, who also loved trying out new things, and who
also were a bit weird, as they loved going abroad, speaking other languages and
learning about foreign cultures. Suddenly, it was easy to have a social life,
and I enjoyed my university life a lot. I loved going abroad, and I didn’t mind
that I had to socialise multiple times a year, to build a new group of friends,
while doing my best to stay in touch with my existing and older friends. I
moved about every half year, and even though I started off a bit anxious about
that, my curiosity always won. I had to rely on myself. Listen to my gut
feelings, and had to stand up for myself. It made me a lot stronger, even
though it wasn’t always easy.
These years have shaped me. Especially, when my health
issues evolved from some attacks every now and then, to continuous pains, and
worries if I would be able to get to work OK. I was hard for myself; I told
myself that I shouldn’t complain, as ‘other people had issues too’. During
these years, I was determined to do everything I wanted to do, despite my
annoying pains. At one point, I couldn’t any more. I had to give in. Living a
life, so stubborn and determined, also made me neglect that the pains that I
got used to, could be more serious than I thought. My inner voice took the
upper hand, and I went back to my home country.
After years, I didn’t have to deal with my health
alone. I could ask my parents for help. Even though, that was hard. After years of being
independent, I found myself in a situation where I couldn’t get up the stairs
by myself, and needed my father’s hand.
I moved to a new place, a new city, and I started a new
job. This time, with less excitement. I didn’t find the joys of going abroad
anymore, and I found it hard to make friends, which was completely different to
the years before. I spent many nights alone, in a new flat. I had to learn to
deal with my new and bad state of health and my diagnoses, which basically put an end to
many ambitions I had. I felt alone very often, also because I was different
again. Different from my colleagues, because I spent years abroad, and I didn't share their university experiences in the Netherlands. Different from my friends, because
very often, I cancelled on birthdays or dinners, as I was too tired or was in
pain. Different from my family, because I was the only family member who wasn’t
living in their hometown, and didn't feel at home there.
It took this old country, this new city, this new job, and this new flat
about 4 years to grow on me. It has definitely not been the most enjoyable time
of my life, and most definitely not the easiest. I didn’t like the limits my
health has set on me. I miss my friends and life abroad, even though I love
having some of my old university friends in the Netherlands. I miss travelling,
speaking other languages and having colleagues who are more open-minded, and
are less direct. I miss the excitement of working with people from other cultures, working in an international environment. But, I have to count my blessings. I can travel again because
I’m in less pain, and visit my friends abroad. My family is nearby, and I can go and visit them. I can work, even though I don’t
like my work that much anymore. I can try out new things, although I’m less
flexible as before. Learning the hard way. 'Nobody said it was easy'. It will remain my way of living.
Today, I created a board on Pinterest. It's my own Health inspiration board. I added some pictures to this board, which are special to me, and inspire me in some way.
Even a strong lion needs to have some 'me' time once in a while.
What can I say? All true. Discover your life.
Love. Wonder. Dream. Fly. Live. Inspire.
Find the ever lasting balance in life. So many obstacles and so many opportunities.
Spring. Live your life as in spring time. Lots of energy, blossoms and colour.
I love pen and paper. I even put them on my '10 things I couldn't live without' list.
I love writing my stories first in an old-fashioned notebook. Especially, Moleskine and Leuchtturm notebooks. These are my most favourite notebooks, have nice paper, and with their colours, they look nice on the shelves.
I love writing, especially when I'm sitting in a train, a bus, when I'm on holiday, or when I sit on the couch at home. Basically anywhere, with the only condition that I can sit.
When I write in a notebook, I don't have the distraction of websites, Facebook, Twitter, Spotify, or any other media sending messages or status updates, which basically only mean procrastination for me.
Very often, words just flow from my head to paper. Especially, once the first words and sentences are written in ink. However, when I start writing in a Word document, I know there's a 'Delete' button, a google search, and the earlier mentioned procrastination means nearby. Very often, I delete the first words, because I forgot how I wanted to start the first lines.
When I type out my hand written notes and stories, I don't have this issue. The blank page isn't blank, as I can build on the words and lines in my notebook.
Perhaps, that's my issue: my notebook offers me lining and invites me to write, not mattering how neat or bad my handwriting is that day, whereas a Word document looks blank, and shows my words in a sterile and automatic typewriting. Even though I type fast and blind, it feels not natural to me, and it's no fun, whereas writing by hand is something I like.
When I'm happy about my post, have typed it up, copied it into Blogger, I like finding a good picture that goes with the post. Very often, the title comes while searching for this picture. Or, the title comes even later, like now, while reading it for the last time and checking mistakes, typos and way-too-long sentences.
My ultimate dream day would be spent on holiday. That's ideal. Second best, how would I spend my ideal work day?
So, my ideal work day, let's say a random dream Tuesday. My dream day would start with waking up without an alarm clock - sleeping as long as my body needs to. My regular morning ritual - shower, choosing clothes to wear, breakfast and medication - , would stay the same. Perhaps, I would just take a little more time for it. Anyway, I would work half a day at home, take time to write, and to run my own business. After that, I would go and meet colleagues, clients or any other people I work for, or with, or people I wish to work for, or with. I would meet with them in an office, or better, on a sunny terrace of a nice cafe in a characteristic city.
With sun glowing cheeks, I would go and drink a glass of bubbly Prosecco with a friend, or better, more good friends, and have a good dinner afterwards. A good film, a great chat, an hour of exercise, a warm bath, or a good book would complement the day. Especially, when it's followed by a good night sleep.
As for how to make this dream day more reality, I need to take some steps. My work will allow more flexibility in working hours, so I would be able to adjust my work schedule and work location to the type of work I need to do that week or day. When I want to focus, I can stay at home. When I want to work with colleagues, I can opt for the office or a café, a colleague's house, or anywhere else.
The next step would then be to work less hours and to get more hours for myself, to write and to start my own business. Even though, the current economic situation doesn't look particularly promising, I am looking into working less hours. Last but not least because it would benefit my health greatly, and I can finally start to realise my own ambitions, next to those of my bosses.
As for the rest parts of my dream day, the exercising, the drinking a glass of Prosecco, going for a nice dinner, watching a film or reading a good book; those already exist in my life. I just need to find a balance between these things for pleasure and my work ambitions, and find a balance between my available time and energy. To start thinking in terms of weeks instead of days, would already help. Obviously, there's more time in a week, than in a day, both for deadlines, as for spontaneity. I'm going to buy a good old week planner, and use all the space more wisely.
Music
I can't live without music. I need music to wake me up, to accompany me while cycling to or from work, to make me concentrate during work, to relax after work, to dance on in the weekends, to listen to during concerts, to sing along during a cleaning spree, to remember memories, to make new memories while travelling, to listen to while I'm reading a few pages before I go to bed, and, and, and.. Well, you get the point.
Sleep
Very necessary. As many hours as possible.
Love of and love for family and friends
I have a few good friends who see what's going on with me, and who I fully trust, and can share my problems and worries with. I have a lot of friends who I can laugh with, grab a film with, can travel with, or get any other kind of distraction from health issues and work with. My family is also very important to me. And, the latest addition to our family, my little niece, is, in her own special way, dear to me.
Films
Watching films is a way for me to relax, to forget about my daily life, and watch the world from another perspective. And, it inspires me to think of new stories, and get creative.
Sports
Having Ankylosing Spondylitis means that exercising and sports are very, very important. I don't like the daily exercises, so that routine is spiced up by weekly Pilates, Body Balance, daily cycling to and from work and the once-in-a-while hike.
Medication
At this point, Humira has been my life-saver for nearly 4 years. Until further notice, my medication is something I couldn't live without for more than 2 weeks. A sole memory to the pains in my hips, which I had before, if more than enough to put this on my list.
Pen & Paper
To write down my thoughts, ideas, worries and stories, to draw, and to mindmap, I'm a fan of pen and paper. Particularly, I love these Moleskine and Leuchtturm notebooks. Even in this digital world, nothing tops the good old pen and paper.
Hands
I love to write, draw, sew, knit, cook and cycle, and I need my hands for that. With my hips being weak, I couldn't live without well-functioning hands.
Having fun at work
I'm spending more than 40 hours a week at work. Therefore, I want to enjoy my job for the share part of that time. It not only fills up most of my week, but work also influences sleep, my attitude to work and life, and my daily mood. So for the time I'm physically able to work, I want to have fun at work and in my job.
Travelling
Travelling is one thing I absolutely live, whether it is by bike, bus, train, car or plane. Going somewhere else relaxes me, gives me time to think, leave the day-to-day problems behind, and puts me in a great mood. Travelling is a passion, which is in a high risk of falling away when my health takes over my life and the (financial) priorities that go along. I would miss it. Living abroad is not an option anymore, but I still love going to other countries, speak my languages, learn new ones, broaden my horizons, enjoy nature and landscapes, or basically loving the fact that there's a lot more to discover, inside and outside the Netherlands.
What a day. It all went flawless. Bus came on time, and arrived on time.
Spent a day in a nice city, had a good lunch. Although, my stomach doesn't seem to be very happy with it now. Need a good night sleep. Especially a long one.
Now, I'm back at the hotel, and in my huge room. Looking at 3 shopping bags, lying on the bed. One is filled with some additional clothes for this weekend's hen party. Much needed, as I only found out today that there's a dress code for a night out. 80's fashion. Hope it'll look nice, as I couldn't try it all on. Was in a bit of a rush, and going through H&M to find something good to wear.
Also, found a DVD-box, which was on my wish list already for a long time. Much needed too, of course.
Why does my phone turn itself off? So annoying. Pincode, Pincode. Done, hope, an update for my phone will come soon, and fixes this.
Shopping bags. Oh yes, I bought a handbag. Much needed too. Oh, and I almost bought a new dress. Good that it didn't fit. Less good, or actually hilarious, a shop assistant had to help me out of it. Had ruined that dress otherwise. Completely stuck. Loved the colour though, ivy green. Will never go back. I must have been their talk of the day. At least, they didn't seem to mind. I did though.
Last bag, notebooks. They were much needed, as I love to write, and especially this month needs lots of pages.
My tea is almost cold. What's that noise outside? Why would someone like pebble stones in their garden? That car alarms everyone.
Today's prompt from Wegohealth for the Health Activist Writers Month Challenge, is about creating your own theme song.
I wrote the lyrics for it. The music to go with it, is a bit harder to grasp. It will be a mix of upbeat which support the message that you're strong, and some guitar swings for the moments that you need to indulge yourself in the sorrows of life. And of course, followed by some uptempo music again, after all, you have to make the best of your life - positive!
Play the dice.
Hey you, strong girl
Keep your feet on the ground, and
Make your dreams real.
Live your life,
Throw the dice.
Dice can roll either way.
Good or bad, day by day,
You're getting new chances
Take them, play the game,
Or watch your life glance away.
Life can be tough,
Life can be great.
Find something you love,
Don't sit around and wait.
One day,
Your body may leave you behind,
Your life may become colourblind,
Your eyes may lose their glance,
Your hips may need to pass a dance,
But another day,
There will be a next chance,
To cry, get up, start over, or laugh and ask for a hand.
Hey you, strong girl,
Keep your feet on the ground, and
Make your dreams real.
Live your life,
Throw the dice.
Hey you, strong girl,
Keep your feet on the ground, and
Make your dreams real.
Live your life.
Throw the dice.
Don't be mad when you have a bad day,
Look up to the sky,
And let the wind take your worries away.
Because you, strong girl,
Keep your feet on the ground, and
Make your dreams real.
You live your life, and
You throw the dice.
You're strong, special and unique.
Think of all that, and take a peek,
In the rest of your dreams.
Follow them, and make your heart stream.
Live your life, and throw the dice.
Live your life, and throw the dice.
Live your life, and throw the dice.
You are now in secondary school, insecure and not feeling well. You feel different then the other kids in your class. For 3 years now, you've been living with a diagnosis of fybromyalgia. You already have too many worries, and you feel more responsible than you should be at your age.
You love creating things, and love history and art. You like thinking about life, and how people think. You're looking forward to your life after secondary school, and leaving your home town. You want to see the world. You found a university in another part of the Netherlands, and you're going to move there. You're going to study abroad, and meet people from other countries.
The only thing you're going to miss, is art and creating things. You tried to get into art school, but you lacked life experience. Don't worry, you're only 16, and life experience is something you will gain by age. No question.
You are ambitious, want to try out new things, broaden your
horizons, meet new and open-minded people and learn. New languages, cultures and countries.
The only thing slowing you down from all that, is your health. You have these horrible pains which come and go, or as you call them 'attacks'. They are so bad that you can't stand on your legs, let alone walk. If people ask how you're doing, you answer them with your head, not with your feelings. You're referring to yourself as a penguin, because of your weird walk.
Unfortunately, I know that you're going to have to deal with a lot more life experience than I would wish you would. I know, that the diagnosis when you were 13 years old, was wrong, and that you'll have to wait for nearly a decade until you will get the right one.
I would just like to wish you confidence, patience, and a lot of fun. You are going to follow many of your dreams, meet lots of people, gain new and good friends, who treat you well, and will love travelling and visiting new countries. I want to advise you to enjoy all this fully. You will love it, and will build great memories to look back to. And lastly, don't believe people who tell you, that there is nothing wrong with you, and your body, and that you're imagining the pains in your head. Or that you're too young to have fybromyalgia, or any other chronic disease. Listen to your body, be confident, and enjoy your life in the meantime. Have no regrets, the glass remains half full.
Here it is, my own Keep Calm and Carry On poster. This poster originally was hanging everywhere in the UK during the Second World War. Now you can make your own one here. Mine is for all the moments when my health issues take over, and I need to get my feet back on the ground again.
Thursday
5 April, somewhere in a small village in the Netherlands, the 3rd and final
training session was taking place in a rebuilt farm, overlooking a lake with a
little yacht marina. The
trainer, a woman in her end 30s, is listening to me talking about my wishes for
the future and encourages making choices. Me, girl in her end 20s, is thinking
out loud that she can take more out of life than advising people.
Trainer: “ You have so many stories in you. Why don’t you write them down?”
Me: “I
do write, I even created a blog. I’m trying it out. I didn’t write much, but
I’m now joining this challenge in which I write something every day on my
health, during this April month.”
Trainer:
“Very well. There are 3 words that come back in pretty much everything you have
told us so far. You create, then you try it out and then you’re determinedly
going for it. Sounds like a great personality description for you. And a
business.”
Me:
Dropped silent. Tear in my right eye and my cheeks are red. She’s right. Don’t
know what to say.
Friday
6 April, around 6 pm. A close friend for over 12 years, rings me on my mobile
when I’m almost done at work and ready to go home. Standing in my office with
my jacket on, I’m taking the call.
Close
friend: “I was sorry to hear that your application didn’t work out. How do you
feel about it?”
Me:
“It was a pity, as it would have been an amazing job. But probably they had about
500 people applying, as it was an amazing job.”
Close
friend: “I’m sure, something else comes up again. Something that’s right for
you and you’re the best for.”
Saturday
7 April, in the afternoon. I’m sitting at home and my friend from the other end
of the world gives me a ring. A friend who I missed speaking to for nearly 6
months as we only e-mailed because of the time difference. She’s enjoying
maternity leave, and spending her time with her little son.
Friend
on other end of the world: “Sometimes, I think I don’t appreciate all this luxurious
free time, going to playgrounds, having coffee with friend and spending my days
with my 1-year old and husband in the night.”
Me:
“Why not? We can work for more than 40 years, so one year to spend solely with
your family is a gift. And far more important, and with better memories, than spending
your whole life in an office, trying to make a career.”
Friend
of other end of the world: “True. We’re so young. You’re so young. You can do
anything you want, and should take pleasure out of it.”
Me: “It
took us 5 years of working, to figure out the elements in our jobs we love and
we hate, and a career isn't everything.”
Friend
of other end of the world: “We don’t need to become CEOs, and we don’t need to
become interns again either. Something, which gives us pleasure in life, ticks
all the right boxes as a career”.
This morning, I joined a Pilates class at my new gym.
It was a long time ago that I did Pilates, the last 2 years I stayed true to my
twice-a-week-routine of exercises on gym exercise machines. But I found them so
boring! Now that I joined a new gym, I discovered the group classes again. I’ve
already tried out Body Balance twice on Tuesday nights. But yesterday night, I
decided I would stay in on a Friday night. I subscribed to a class of Pilates on Saturday morning and called it an early night.
Even though I know Pilates, I was still
a bit anxious to find out if my body would agree with my choice of the night
before. Morning stiffness is always an issue for me, and particularly, the 2
days before I can take Humira again. So this morning, I got up, walked for 3 minutes to the gym. In the room, I saw all these
slim and beautifully shaped girls, and felt a little outlandish when I placed
my mat, my towel, and took my shoes off. The incredibly good looking instructor
asked who was new to this class, and the only finger that went up was mine.
Thankfully, the next question whether I was new to Pilates too, I could nod
‘no’ to.
We started with a gentle warming up. ‘Find your base’,
the instructor said. I looked into the mirror and saw myself standing with my
arms up in the air, a back straight and my shoulders back. Not bad. It even
felt nice to throwing my arms down while bending my back. I imagined Pilates
would be a lot more difficult, as last time I did it, my hips, back and muscles
were years younger and more flexible.
‘Today’, the instructor told the 6 girls and 1 guy, ‘we’re
going to work and exercise our belly away’. Nice. Like that. A couple of
exercises followed, during which we were lying on our mats, raising legs and
arms, simultaneously, or in opposite directions. I couldn’t stop thinking what
this looked like. If someone would come in, either he or she would be very
impressed by some very cool and group coordinated choreography, or most
probably, would start laughing to the point of tears, watching these people moving
into very weird and inflexible positions in their spare time on a Saturday
morning.
After half an hour of exercising, I was absolutely
impressed by my joints and muscles keeping up with the pace of the instructor
and the flexibility. Obviously, there were some exercises, which I couldn’t
help but stop halfway, as my hips forbade me to go further. But there were also
exercises that actually were amazingly helpful for a girl with a bad pelvic
system, a bad back and bad hips. All in all, even though I started off with
morning stiffness, and some exercises which ‘weren’t for me’, as the instructor
said, I found this hour of Pilates on Saturday morning definitely worthwhile.
Only curious to find out what my muscles and joints will tell me the morning
after..
This time, the #HAWMC writing challenge gave me an opportunity to try something new: Writing a haiku about my health. I started looking through pictures, and even though it wasn't easy to capture a thought into 5-7-5 syllables, it is amazing how memories and images can be translated into a minimum of words. I gave it a try..
My first hike in the mountains, after I started Humira. That incredible feeling of pride of my achievement, but also a feeling that was quite scary - I'm dependent on this medication.
Taking a walk is a great way for me to clear my head. Watching the sun, the sky, flowers, the seasons change, the fresh air - it gives energy, time to breath, throw out my irritations and a moment to start taking life again as it comes.
I always thought that I was good in neglecting pains, feelings, and making people believe I was doing fine, although my pains were horrible and I couldn't walk properly. In the end, it was me, myself and I, who I fooled. Everyone who knew me well, could see how I was doing. My eyes weren't bright, I looked tired and my smiles were fake. Now, I try to think of that, and try to tell people when I'm not doing well. I should listen to my mind, and not think a fake smile can pull the trick instead.
I found this
picture on Flickr. It's a beautiful picture. It's a picture in which you keep
discovering new things. First, I noticed the dark clouds, after that, the rays
of sun coming down and its reflection on the water, followed by the waves of
the sea rolling towards us, and the sun reflecting on the waves at the horizon.
Interestingly enough, at the first glance I thought the dark clouds had the
upper hand, but the longer I concentrated on this picture, more and more I
found the sun appearing a lot stronger and radiant.
This picture
struck me. Initially, it looked like a very depressing picture. Lots of dark
clouds in the air mean very often rain, storm, thunderstorms and other types of
unpleasant weather. Many bad things, insecurity, shocks, illnesses and
downfalls happen in life, and obviously, it’s easy to see all the possible depressions in
life in this picture. But then, the sun appears to be radiant, and there are
bits of clear sky amid all these clouds. It’s very difficult to think of an
escape while you’re in the middle of a thunderstorm, a disease, a loss or
experiencing any other difficult event. But then, when you look back on a
difficult time in your life, somehow there weren’t only clouds. You learned
something about yourself, found out you are stronger than you would have
thought, or realised you can count on support from friends and family around
you. Suddenly, there appeared to be rays of sun and presents in those difficult moments in
your life.
This picture
made me think back to a few moments in my life, in which I encountered very
difficult situations. Like every year, around this time, I think back of a girl, who
was a friend of mine during studies. She passed away on this very day 4 years ago.
She had to fight cancer for a couple of years, and couldn’t win. Before, I kept thinking of how this horrible disease had taken over, and she lost fighting. It’s only now,
that when I think of her, a lot of happy memories appear first, and I’m
grateful for knowing her.
My life hasn’t
been covered by sunshine only either. There were storms and heavy clouds, and there
certainly are more to come. Diagnoses, diseases, infections, medications, and all other happenings in a life of a chronic patient. Yet, I’m glad for all the lessons I’ve learned, and all the experiences that made me stronger. Now and then, it just takes more time to
reflect and see the comedy behind the drama. Like this picture, it's worthwhile spending a few minutes to look back on your life to discover all the aspects and happy
moments that you had missed before.
From time to time my head gets stuffed with worries, thoughts and emotions, all clogging up, and sometimes keeping me awake at night, or making it hard to focus at work. Running through all the records in my head while cycling to work or home can be a good alternative, but now and then it’s good to put them in writing, as it clears my head and gives a way to leave the clutter behind.
I’ve always loved writing, and I’ve always loved thinking about things that you don’t very often talk about with friends. The two together seemed to be a good combination, and I started writing down my personal experiences, thoughts and worries.
After I got branded with diagnoses like Ankylosing Spondylitis, hip dysplasia, a scoliosis, and even one that later appeared to be a false one, fibromyalgia, thoughts and worries were running through my head continuously. I had to think about the consequences, the meaning of my life, and had to deal with bad news and worrying prospects. I did what I do best when I don’t know how to deal with myself. I started thinking and writing. I started to fill journals with thoughts, but also characteristic song lyrics, poems and quotes. Basically, anything which appeared to be helpful or corresponded to my life in that specific time of writing.
At one point, I decided to make my thoughts a little more public and share them with partners in crime, other patients dealing with chronic diseases. I started blogging and tweeting, alongside writing journals. Sharing my stories, and reading theirs, makes it easier to come to grip with my health issues. Moreover, it helps to see that I'm not the only one struggling, and struggling alone. Writing helps me. It restructures my thoughts, worries and feelings, and very often, it even helps putting my problems and health issues in perspective.
Sometimes, I wish I were a supergirl. A girl
like the German rock band Reamonn is singing about: “and then she’d say: ‘It’s
OK, I got lost on the way, but I’m a supergirl. And supergirls don’t cry”.
This song has been special to me. It’s been
working like a mantra on these moments when my body left me in agony. When I
had to go to work but every step felt like someone put a knife into my hips. On
these moments, those catchy lines of Reamonn’s song came up in my head.
I then wished I had a superpower, or rather, give my
superpower away to someone who could transfer it into something even bigger.
For example, if I would get the superpower to crack the code which causes
autoimmune diseases. I would give it to researchers and medical specialists, so
they can transform this gene, virus, bacteria, or whatever cell went the wrong
way in my body, into a perfectly healthy one, or kill it, when we can live
without.
It would be amazing when if they would gain access to a fundamental
solution for these autoimmune diseases, and prevent our bodies attacking our
own bodies, and instead strengthen our bodies. It would be amazing if this
superpower would enable some kind of gene therapy attacking the cause of these
diseases, instead of taking incredibly expensive medications attacking symptoms
for decades. But well, this superpower is not yet available, even though we
keep hope on results from ongoing medical research done by bright students and
researchers.
In the mean time, I think somehow all chronic
patients have kind of superpowers. Those strengths, which help you through extremely
painful days, and help forgetting about the feeling of pain during good days, or
during good nights when you can even enjoy dancing to music, without thinking
about the pain punishment the day after.. “and then she’d say: ‘it’s alright, I got home
late last night, but I’m a supergirl, and supergirls just fly.”
“That's the difficulty in these times:
ideals, dreams, and cherished hopes rise within us, only to meet the horrible
truth and be shattered. It's really a wonder that I haven't dropped all my
ideals because they seem so absurd and impossible to carry out. Yet, I keep
them, because in spite of everything I still believe that people are really
good at heart.”
Anne Frank (1929 - 1945)
When I was 10 years old, I read my mum’s
copy of The Diary of Anne Frank. At that time, I read the book with the mind of
a young girl, reading about this other young girl obliged to live a part of her life hidden
and secretly in an annex in Amsterdam, during the years of the Second World War.
It was when I referred to the Second World War as a time when all Germans were
bad people, the Netherlands were occupied by the Germans, Jews were hiding and
murdered, there were some very brave people who secretly helped people in danger, and my
grandfather had to hide too, to avoid working in Germany.
Fifteen years later, I came across a copy
of her book in a Dutch shop, bought it and read her book again. In the
meantime, I had gained a lot more knowledge on and interest in the Second World
War, visited Auschwitz and Buchenwald and could put Anne Frank’s life in
a historical perspective, yet knowing that stories like Anne’s can unfortunately still be written today. This time, I was impressed by the ideas, the
sentences, the words she wrote down in her diary. I was impressed by the views
on the world and mankind she developed when she was only 14-15 years old. An age, in
which most girls are not ready yet to think beyond a brand of shoes, boys and
going out. She however, was thinking about ideals and what she wanted to
accomplish in life, and yet, had to deal with growing up hidden in an annex,
not being able to go outside or breathing in fresh air in a garden. I was struck by her
thoughts and dreams, and her way of writing. She gave the world a piece of her
wisdom, gave the world advice, and gave the world hope, and that all in a diary she kept in wartime.
This quote of Anne Frank is one of my favourite
quotes. Not only because of her insight, but also because, in the mid of cruelty, war, and a hopeless situation, she is still able to show her hope in mankind, believe that people have hearts, and can do good. Every time I
read it, situations in my life, (health) problems or worries loose their importance, and
simultaneously, both this quote and thinking back of Anne Frank’s story, give inspiration to do make the best out of life.
It’s incredible that Anne Frank believes
in good hearts of people in wartime, which motivates me to believe in good
hearts of people in the current peaceful, yet insecure times.
Ideals might be
absurd and dreams might never come true, but the world needs people to follow
and cherish both, as the reality of our world is already painful and disgraceful
enough. Anne Frank, only 15 years old when she died in a concentration camp,
gave us a book filled with her hopes and views on the world. Her life was too short, but she will always be remembered with a dream of a better world.
Every night, my laptop makes a back up of all
the documents, pictures, films and other files I found interesting, useful or
unmissable enough to save on my laptop’s hard drive. As it’s becoming an
increasing digital world, I notice my digital captures of life are getting
increasingly important to me too. I wouldn’t want to miss all my saved memories
to events, special moments, learning curves and challenges. Everything, I have
written about, studied on, taken pictures of, listened to, watched or sent out
as applications. Apple calls my back-up a time capsule, which I only will need
to open when my laptop or system dies.
Every night, my sleep takes care of a back up of
my own system and the format of my body, brains and energy levels. Very
important to fight mornings when my energy levels are low, nights when I can’t
sleep, or days when I just have too much on my plate. Sadly, my regular backing
up process is often clogged or disturbed, because I can’t sleep, or difficult
moments, pains, worries and other sorrows make a back-up troublesome, or became
files in my time capsule that should have been erased instead.
Let’s just say that I wouldn’t open my back-up
of my so-called life and health up to 2112. What kind of person would I be looking
at? Which events would I remember? Or, making more sense, someone else would
find my time capsule, and what would he or she think of my life’s collection of
files?
I sincerely hope they would see me as a person,
who was brave enough to conquer her world. A person, who was strong enough to
lead her life herself, instead of being led by her health. A person, who made
the most out of her life, travelling, had a number of good friends, family
support, found work in her passion, and loved helping the people she loved, as
well as she let the people who loved her, help her out when she needed it.
They would also see my struggles with my
health, and all its side effects on her life. Struggles as little as admin
health tasks, to a not-so-healthy work attitude, medication, setting
priorities, keeping friendships, trusting people, opening up in relationships,
or fighting insecurity and moments when fears for what to come take the upper
hand. They would probably tell that I should have worried less, should have enjoyed
the days as they came, should have thrown out all the clutter in my head, and
focus on what’s important to me, instead of carrying the whole world’s weight
on my shoulders.
And, they would probably be laughing because of
all the different interests they would find in my time capsule as my taste
changed continuously. And they would spend years to go through an enormous
amount of music, films and (decades of) pictures which accompanied me on happy,
sad, beautiful, bad and troublesome moments in my life.
