Spoons

And suddenly, it smells like summer, like sunshine, like happiness.

Two weeks ago, we had snow. Yes. Snow. And no. We don't have normally snow in May. We live in Finland, but actually, this is not the North Pole. (I heard once some people think there are polar bears in Helsinki, and it's quite dangerous to walk there... Well, I lived there for over a decade and did not see any, but - you never know.) 

While we were happily beachcombing in Devon, spring did it's magic here, and now it's all green. I love the bright, happy spring greens of birches, with their silvery white trunks, the bird concerts we hear all day long, the smell of fresh grass. I enjoy looking how our chickens happily peck on. Autumn is my favourite time of year, but spring has a lovely promise in it.

Now, those following me on Instagram, do know we were in the southwest of UK couple of weeks. I feel better there than anywhere else in this world. The seaside really suits me. This time I was really sick, though, having extremely high fever, and it will take some time to get over with it all. But I don't mind. I saw lighthouses, I sat hours in Slapton Sands beach, looking at the waves and cried about the cruelty of human kind. (And kindness, too.) If Slapton Sands and Operation Tiger does not ring any bells, you might like to google it a bit - or maybe not, just WWII things. I have always been a bit of a history geek, and political history was once a thing I knew a lot about, but my brain injury and memory loss took that away too. We collected memories, we collected sea glass, driftwood, fossils...

Normally, after a holiday, people unpack, yawn a bit, maybe take a nap and drink a bit more coffee than usual, load their holiday pictures for the world to see, and that's it. For a chronically ill person, it's a bit different. It takes months to recover, literally. We have been a week home now, and I have been in bed the whole time, and cannot see it changing for a while. It might actually not occur to normal persons, how easy their lives are, because they never have to stop to think about it. They just do, live, and be, end of story. So, I decided to once again tell you about the Spoon Theory, original one here. 

People like me, with rare, chronic illnesses have a very limited amount of energy to use every day. We cannot just overdo, decide that now I will do this and then rest. No, that's for normal people. For us "spoonies" every day means making hard decisions. Everything we do affects to our energy amount. And with everything, I mean, everything. You know the moment in the morning, when you open wake up and open your eyes? You stand up, go to bathroom, maybe take a shower... Oh, wait, hold on! Opening your eyes, it's a huge effort number one. And now we take out the spoons.

Spoonies (chronically ill persons) count their energy in spoons. You have a very limited number of spoons to use every day. All the things you do in a day, means that you use one spoon. And, let's say there are about 15 spoons to use (I feel very generous now, for your sake, because you might not be able to get over the fact that I, for example, have like 5 spoons a day). So, back to the waking up.

Opening your eyes, one spoon. Standing up, one spoon (two in my case). Going to the bathroom, third one. And you didn't even get dressed yet, or brush your teeth, did your make up, or hair... By the way, shower takes at least 3 spoons. So, beginning to get the idea? You have dressed up and used at least 7 of your 15 daily spoons. Oops. Breakfast, then to work, and it's pretty much it. How will you be able to get back to work, without no spoons? Cleaning up the house, cooking, washing? How about hobbies, seeing friends? No chance, whatsoever.

Now, you may start to see my point. Going to a holiday means I must think a whole year ahead how to use my energy/spoons every single day to be able to survive. (With surviving, I mean in my case that I'll be able to breathe the whole time, not getting unconscious in an airport and scaring the hell out of the personnel and not getting to the flight, and luckily be able to speak and walk too.) And afterwards, months of silent days in bed. But it is so worth it. I don't mind seeing friends, shopping, anything, if I am in a good condition enough for a bit of reading, listening to my children, looking out of the window, maybe writing a letter sentence by sentence... 

My point of telling this is not to make you feel sorry or pity for me, I just wanted to tell you some facts about what it is like to live like a spoonie. I consider myself like a winner and champion, I made it! I was on holiday with my family!

Something completely different. It is lovely how, at times we need it, we stumble upon things we need the most. For me, it has been many things. One is Jenny Colgan's books. They have brought me so much joy over the years, her light, happy, reassuring way of telling how one thing ending might not nessessarily mean the whole life is ending. Her books have carried me over some quite dark times, like Leonard Cohen's poems. I have found new music at times, describing just perfectly my feelings. Now, I must admit, I "found" a Finnish band I had never heard before, even though I learnt it is quite popular in Europe. But hey, I am more like a Cecilia Bartoli - Maxim Vengerov - Jacqueline du Pré -kind of girl. Being in bed all day is sometimes a bit, well, boring, so listening to music (when there is spoons for that!!) is a bless. I love to listen to the lyrics, and I only listen to music that have something to say. (Recommendations are always warmly welcomed.) 

This band is called Sunrise Avenue, and although it's a bit far away from my usual opera-arie antique stuff, I love the lyrics. (They sing in English.)  How could I not, when they sing, "hey little fighter, soon it will be brighter". 

Now, I'll show you two example, why I love them. If you have followed me a while, you know immediately, and if not, I'll tell you very shortly: I have been through some quite hard times accepting some parts of my life, like being not able to do my beloved PhD, instead learning how to use electric wheelchair, and it's been a bit rough sometimes. These two lyrics are pure gold to me.

"Nothing Is Over"
 (listen here):

 

Don’t turn away
There’s still time
A tiny moment
Don’t let go today
We can still shine
We are not broken
Scares to see that we are
A step a way
The one to take us
one way wrong way
Say nothing is over
Though everything’s crazy
Be brave and trust me
It’s not a game over
We gotta try harder
You gotta stay with me
There’s nothing we can’t reach
Cause nothing is over
I won’t turn away
Cause I can’t hide
The pain would find me
Don’t send me away
I’m on your side
That’s where I want to be
It seems to me that we are
Just like the rest
We could use a word of guidance
I hate to see that we are
One step away
The one to take us
One way wrong way
Say nothing is over
Though everything’s crazy
Be brave and trust me
It’s not a game over
We gotta try harder
You gotta stay with me
There’s nothing we can’t reach
Cause nothing is over
Say nothing is over
Though everything’s crazy
Be brave and trust me
It’s not a game over
We gotta try harder
You gotta stay with me
There’s nothing we can’t reach
Cause nothing is over
Nothing is over

"You Can Never Be Ready"
(listen here:)

Sometimes
Our hearts get broken
But keep them open
Cause when it comes
You can never be ready

Let it all out
And dive
Deep in
Don’t worry
Go all the way
No fear
Don’t hide
It’s over

You must feel lost
And kind of scared
To let go
Bring all your scars
And jump right in
Here we go

Sometimes
Our hearts get broken
But keep them open
Cause when it comes
You can never be ready
Hold on
You can’t let go now
This is your time
Hold the line
You can never be ready

I’ve been there too
You know
It made
Me hurt
I thought I would die
But hey
Still here
Still breathing

I fell so hard
It messed me up
To the bone
But I’m not scared
No I want more
Here we go

Sometimes
Our hearts get broken
But keep them open
Cause when it comes
You can never be ready
Hold on
You can’t let go now
This is your time
Hold the line
You can never be ready
You can never be ready
You can never be ready
You can never be ready

Sometimes
Our hearts get broken
But keep them open
Here we go

Sometimes
Our hearts get broken
But keep them open
Cause when it comes
You can never be ready
Hold on
You can’t let go now
This is your time
Hold the line
You can never be ready

P.S. Their most listened song is Hollywood Hills, here.

Light in the Heart

...that's what I have been thinking lately. Light in the heart. It makes life so much easier. It might not make the steps nor pain any lighter. But somehow it's easier to breathe when you have a light in your heart. And a light in your heart means a light in the eyes too, and suddenly life seems so much worth living for.

Maybe it's spring, and the light that made me think all this. Although for me spring means more pain, more days in bed, more fatique, more this side of life not so bright, not light, not beautiful. I think, however, I have been built in a way that more the pain, there is more beauty to be seen. And oh, how much there is beauty around me. Of course there are those dark days, we all have them, but...

Well. I heard a lovely song yesterday by Johanna Kurkela I want to share with you. It's Finnish, but I found a translation. Original one you can find here, and it is so worth listening to, even if it's Finnish, because you just cannot help smiling after that.

A Light Person

You know a route to the horizon

You laugh light to the world

You draw wind's curls

To your room's window

You collect fragments of joy

Drops of sun

You have the sky of January in a panther case

I think that you have angel eyes

And better than the others

You see June's ultramarine winds

Brighter than the others

Colours especially

I think that those are the eyes of an angel

They see the sky more precisely

You know what the birds sing about

And where the clouds will descent

You can be really quietly

Without talking like a tree

And if your heart breaks

It will break completely

But only for a while

Maybe for an hour at most

I think that you have angel eyes

And better than the others

You see June's ultramarine winds

Brighter than the others

Colours especially

I think that those are the eyes of an angel

They see the sky more precisely

You have the ability to grab my had

Let the sad one just mourn their sorrows

On rainy days especially

It's good that you are

Just like that

A light person

I think that you have angel eyes

And better than the others

You see June's ultramarine winds

Brighter than the others

Colours especially

I think that those are the eyes of an angel

They see the sky more precisely

I don't mean to say I am a light person; that song just made me smile. And find words to the thoughts I've been thinking. We cannot always choose, we cannot always pursue ourselves to be happy or see light everywere, or anything beautiful for that matter. Life might sometimes seem pointless, but I hope that, in your eyes, it will never seems to be not worth living for. There is always light, somewhere. 

Yesterday was, as Fridays usual, a day in bed, in several tubes, having an infusion. Somehow I have learned to wait those days. It means a bit of uncomfortable feelings too, but oh, how they make me be grateful for all the other days being able to live my not-so-ordinary-normal life. I think all those brave souls and strong persons forced to live in hospital beds and with tubes and other stuff in them all days long, every day, and just swallow all my complaints and try to be a good girl.

Having to stay in bed so much, my husband has helped me to arrange our bedroom to be my happy place. I know. I have the most wonderful husband in the whole wild world. He knows before me when it's going to be a worse moment, leads me to rest a bit, helps me to breathe when my lungs forgot how to do their job,  somehow knows when I have a low day and bring me flowers or a new pink handbag just like the other day (I know!!!),  or just be there, for me, a shoulder, a supporting word here and there. We have been married 19 years soon and well, I just don't know how much more one can love another than we each others, and I am sure that is the reason I can so easily smile everyday. But actually, I was talking about a happy place...

I know there are lots and lots of you brave souls there, staying in bed just now, like me now writing this. You might have done this already, but I recommend it, if it have not occured to you earlier. Make the bedroom your happy place too. We arranged some space for my table next to my bed (yes, a big old house, big old rooms, our priviledge) and this way I can just pop in and out of bed and write a line to a letter or decorate a tiny bit of a journal page at a time, or put my coffee cup on the table next to me. There are flowers, paintings, beautiful items, and so much light there could be in our bedroom.

And this is important: bed linen! I learned this from my hero friend, who stays in bed all days long. Use only the sweetest, cutest, most comfortable, and loveliest bed linen you could think of. Because think of how many hours you spend between them! And ours, we never use any kind of covers, because our bed is always unmade: hey, I live there. So we have searched for colors we like (soft grey and maybe some soft faded pink pillows) and made sure they are neutral and pale enough for the feeling of lightness in the room.

Now I can promise no more decorating hints, not my style actually, but it just popped in to my head that with a little changes you could maybe better feel good even if in bed. Maybe. A bit. I hope.

I planned to write about snailmal and journaling, but I have a feeling it might once again left a bit out of hand. But next time! I try to, at least. I'm not a person of long term plans and even though I tried to make some how-to-do lessons about decorating envelopes or journal pages my style, I couldn't. When the flow hits, there is nothing else in my mind than just doing, and forget everything else, including resting... So at the moment, only photos of finished things. With my energy, diy-videos are out of question too, so ven if there are lots and lots of lovely people there asking me nicely to give lessons about "harvinaisenkauniselama style", I apologize. I can't. Not now anyway.

By the way, if you didn't already know,  harvinaisen kaunis elämä means unique/rare/unusually/expectionally beautiful life. Harvinainen is a Finnish word that has a douple meaning as both rare and unique.

But now, till the next time. I hope you have many reasons for smile, and can find that light in your heart, it does exist there already, you just have to find it. Unless, of course, you already have.