Random thoughts of the day

This year autumn has been aging much more beautifully than last year. Trees are still holding their glorious, golden dresses and the air is gentle kind of chilly. I love it. Although I do love November with its dark, cold, grey nothingness in which you can create your own kind of beauty, October has its charm. I missed it last year, being in hospital. This October I promised myself to celebrate life more than ever. 

Life, well, it is a funny thing, though. It can let you admire it in one moment in its full glory, in awe and grateful for the tiny glimpses of heaven it reveals you right there and then. The next moment it turns its back to you and lets you feel alone, bewildered, and betrayed. We had a pact, didn't we, me and life; we agreed life should go like planned and oh, how I had plans... I bet you have thought like that, too?

Well. My plans are always pretty small honestly, so it doesn't matter, I am quite used to the quirky ways of life by now. We go along just fine. You should always accept your friends just as they are, they say, and life is a friend, if you come to think of it. My plans for this October was to be able to get outside, to the forest, to smell the nature. It might still happen, there's a whole half of October left. My plans included also a hope that everything happened last year could be put to rest by now, and that's not going to happen. So I made a decision to try not to think about it this month at all, and continue sorting things out later. If one thing is sure in this life, it is that negative things have no tendency to vanish in the air. It might or might not be a comforting though. Like Tove Jansson wrote: All things are so very uncertain, and that's exactly what makes me feel reassured. 

I've been very tired lately. I know, it sounds silly in my own ears too. A spoonie that says she's tired. There's no news there. But when the tiredness is a new kind of one, something you can't quite put your finger on, and know you should, it bothers you. At least, it bothers me, as I am very well acquainted with my body and its remarkable ways of telling things in its own way. It's a necessity when you have chronic illnesses, to listen and understand your own body and its unique language only you can interpret.

Is it to do with the lab tests showing signs of something? Is it to do with my jaw that dislocated itself 40 days ago with a bang, when I was simply giving my little sister a hug? Is it to do with the fact that there's a new kind of pain in my body when I try to walk? Is it to do with my memory fading further and further away, in a fog I can barely reach? Does the two different kind of (benign) tumours in my head have their part in this all? Is it contemporary or is this all here to stay? I am sure there are lots and lots of people sharing these kinds of thoughts or concern with me today. Our smiley face might not reveal the things we battle with. Our calm and content appearance can be deceptive. 

I find that whenever I have problems (which is always, quite frankly, as I do have so many chronic illnesses, that when one has exhausted itself to be silent, another one has gained energy to shout out), I need my environment to be calm, peaceful, beautiful, and safe. I am blessed more than I can ever describe, as I have the privilege to live in beautiful, silent, peaceful countryside, surrounded by clean air, forests, and fields. I can admire the constantly changing view from windows, to see the season turning to another. To see deers and birds, foxes and rabbits, just looking outside of practically any window of our house. 

Another thing I am beyond grateful is our home; large, old, and beautiful, whispering its own stories and secrets. There's room for our whole family, and still a lot more, so we have been able to make it airy and serene. Lots of room for me to move with my wheelchair without needing to be afraid to knock things. Have you ever thought that there might be reasons beyond aesthetics for decorating your home? For example, I need chairs, tables, things to be exactly in their own place, as my brain doesn't always collaborate with me, and I can't understand or estimate how far or near things are. A chair couple of centimetres out of place can make my brain go all wild and force me to think it's a threat and coming right at me, even though it is certainly not jumping towards me. We can't have carpets as I could trip over them. Neutral colours, light, and airy, because my eyes can't handle bright colours, and so on. 

Oh, and I have 3 beds. Yes, I do. That part was beyond comprehension to one psychologist last spring. She thought I have made myself a glass bubble and banish all evil from my life living there, securely in that bubble, me and my family, and having so many mental problems my brain has prevent me from understanding it. Why? Because it is something entirely unheard of that one can be happy and content if one has chronic illnesses. One supposed to be miserable and utterly, completely depressed. One especially cannot have 3 beds as a practical solution to get the most of one’s restricted life. Let me explain: I have one bed in our bedroom. Simple, most people do. There's another sofa bed in our class veranda (orangery, conservatory, it has many names, but a room right off from our bedroom with walls made of old recycled windows, with a roof, but without heating), so I can be almost outside most of the year, but still safe from the heat and rays of sunlight, where I can hear wind and birdsong, see all my hundreds of peonies. Then there's a third bed in my study. The study I had for working, where I was supposed to write my research of the Near Eastern Iron Age, but instead of it, where I spend most of my days, resting in bed, and looking around me in this room that I still call my happy place. There's all my letter writing materials, all junk journal stuff, all things vintage and beautiful. And why not spending my days here, if I manage to get up from my real bed? 

I think I can never get over the idea of chronically ill people forced in a mould of a depression. If you don't fit into that mould, there's something suspiciously wrong with you. You are not entitled for happiness if you are ill. You are either faking it, or not sick enough. Or, better still, you are not admitting the facts to yourself! Namely, that you have subconscious mental problems. It is human, it is natural, and it is completely ok to be afraid of unknown, to try to explain the unexplainable, but it is outrageous not to admit the human element of not being omniscient. I mean, if you are not chronically ill yourself, you definitely should keep the moulds you have created and try to fit yourself in them, be safely there and think everyone else does it too, but you should never, ever try to fit others in the moulds you have created in your ignorance. You see, if you are chronically ill, you kind of forget all the moulds and what should or would or must - or not. You live, and you learn, and as Douglas Adams so well said, at any rate, you live. You either have 3 beds or not, but you make sure your life is filled with things that you love and enjoy, so that the things you miss or can't do, diminish. One might call it a glass bubble, or one might call it living.

Nothing Is Over

For all my friends, here and there, across the world. Thank you. Thank you for your offers for help, for your encouraging words, your friendship, and concern. 

I know it's sounds a bit funny, but you know what is the strongest feeling right now? Disappointment. I have told thousands of you, my friends, how much I love my country, how grateful and proud I am to be a Finn. How privileged we are, to be born in Finland. And especially, how well we are treated in our public healthcare. And suddenly... I would still want to be proud to be a Finn. I love my country, I love the nature, I love the honesty, the incorruptible integrity. But it hurts to notice how this bureaucratic system can swallow thousands of patients, and nobody cares. No, that's not true (maybe it is), but what I mean is, nobody takes responsibility of the decisions Finnish bureaucratic system is so capable of spit out every few seconds.

 

I'll tell you shortly what's happening here in Finland now. The M.D. taking care of me and hundreds of other patients has been told by officials now that he cannot have a private clinic anymore. Because it might be harmful. I mean. Seriously? Not one single facts are given to proof that argument. Not one. Not a single one. It just might possibly be harmful. End of story. So, let's restrict the rights and punish also couple of thousand patients on the way. No biggie.

You might or might not have heard about chronic fatigue syndrome (CFS/ME) at some point in your life. It's a highly-disputed illness, some think it's completely fake, some that it's a real thing. You know, most illnesses were considered as rubbish at some point, and only after there has been a way to measure or proof it exists, it exists in the minds of doctors - even if the patients are aware of the fact way, way earlier.

This is now the case with CFS. I have several other rare illnesses too, that doctors accept, and they believe that I am truly and honestly disabled and chronically ill, and I have medical care for these illnesses. However, with the CFS... Well. Here in Finland we are fallen badly behind in the medical development and knowledge, and doctors tend to think CFS means that you are nuts, faking, and lazy. There are no official treatments, no coherent agreement, nothing. We have one doctor trying to fight for us, who has over the years seen many patients and trying to help, participating to the international research about the treatment of CFS. He has used medication and medical treatments that are widely used internationally, harmless, with no proved or shown side effects for patients. The problem now here in Finland seem to be, that international research is not considered to be trustworthy here. So we have quite a problem, a vicious circle, as there are patients having real symptoms, and doctors not believing them because the symptoms cannot be proved with the current measurements - as the specific tests are only now being found in international research - and there is no official coherent consensus how to treat patients either.

So, while this doctor was abroad last week, in the EU conference (as the official, selected representative of Finland) trying to find consensus with the doctors all over Europe, about the coherent medical care for CFS patients in the European Union, our lovely officials decide that wow, by the way, we don't like this. And announce that they take his rights to have a private reception away. They don't care that patients are left without help, just like that. Most of them won't get any help from public healthcare, as they are, after all, only pretending to be sick, or, as the officials say: "in need on psychiatric treatments". Oh, how wonderful, thank you.

The problem is, some of us patients have a medication that literally keeps us living. Including me. I have, with the help of this one M.D., a medication that ensures my body to accept the vital myasthenia gravis medicine without which I'd have a myasthenical crisis in half an hour. Without this extra medicine, I'll have a colinergic crisis in half an hour too. With both medicines balancing my body, I'm just fine. So, I have a real crisis now. I have contacted all the bureaucrats imaginable, and then some more, just to be sure, and all of them agree on one thing. I cannot be punished like this, I'm just a patient, and public healthcare system should take now full responsibility of my care. And guess what happened? Public healthcare proudly presents: they cannot help me, as the treatment is experimental and not medically justified - without actually not even trying to find out, what might be the justification or medical reasoning behind it.

So, I am, now in square A again. Let's do this all over again, from the beginning. As I am not giving up. I won't lose hope. I want still to be proud if this country, not having to look for help from abroad. I want to still believe in justice, in kindness, in life. What I want is my life, that is now in danger because of some petty, small minded officials, because of money and because of jealousy. I want to live. I'm not that old you know, thirtysomething. I just won't accept I'd either die or continue my life in hospital tubes. 

When I was crying for the first time because of this (after some more really, really bad news, as I just have not the energy to tell you the whole dirty story), this one started to play on my Spotify... So, even if I've quoted it before, I'll do it again. The Sunrise Avenue, and Nothing Is Over. I want to believe that there's still time, that I'm not broken, that I'm brave. That nothing is over.

"Nothing Is Over"

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

More About Spoons

I have been asked to explain a bit more how this Spoon Theory works that I wrote in my last blog post. The original theory is here, it is very beautiful. But I try to explain it in my way now.

We have our own, unique life. That means we have different situations, different things in life that we must think about. Some have chronic illness, some depression, some must struggle with money, relationships, other issues. So, actually, the theory is very flexible and everyone can, in a way, relate to it. I explain this now from the spoonie (chronically ill) point of view to you, my point of view, so please feel free to think differently!

Now, when I talk about spoons, I mean energy. Strength. The fuel we have when we wake up in the morning and which help us get going through the day.  Because we all have this one and only, unique life of ours that differs from everyone else's, we do have also different number of spoons. Some have lots and lots and lots and lots of them, some have two. (And, as you know me, you'll quess at this point already that there will be a lesson in the end the story.) So, this is how it looks in the morning for a healthy person waking up (left), and for a chronically ill person (right):

   

Now. As you see, it seems a bit unfair situation we are having here. Well. It definitely is. (And just wait and see the end of the day photo, how unfair is that...) Some of us have spoons so many she/he could share them to others and could not notice the difference. Some have so few there actually are no energy to get up. As I explained in the earlier blog post, getting out of bed isn't that simple as you may have always thought. You open your eyes, try to get your body out of bed, walk to the bathroom, brush your teeth and well, basically, back to bed for the rest of the day, and there should be also dressing up, preparing your breakfast and eating it, going to work, working, coming back and everything in between like talking, thinking, seeing, writing, doing things. And in the evening, possibly a bit of cooking, washing clothes or dishes, or hobbies, seeing friends... 

This all, as you know, requires some energy. Spoons. How could you do that with two spoons? Well. You just can't. It's obvious. You must make decisions. Every day, step by step. If I wash my hair now, I can't cook. If I talk to the phone, I can't wash my clothes. If I cook, I cannot read my emails. So on. No need to point out, there would be no spoons for any kind of a hobby. Each and every day is like struggling with two coins to use for your grocery shopping, bills, everything, and you can't have no extra coins, ever. Expect this is actually quite something else. You have to mould yourself and your life to fit in the energy level you have. You have to squeeze your dreams, hopes, everything - your life and yourself - in this ridiculous, pathetic number of spoons you have been given. 

Oh, and the evening? This is how it looks like for a healthy person and for a spoonie. You see?

But. Maybe here is the lesson thingy. People having this amazing number of spoons, they usually do not even know it. They will never ever have to think about the energy, or spoons, how could they? They moan about getting out of bed after spending a night with friends and having to go to work in the morning, but they just get up, go to work, do whatever they like in the evening and start all over again in the morning. Never realising it is actually a privilege, not forced to make decisions how to use their day. It's normal. However. (Haha, you see, here it comes.) I might be wrong, but I have a strong feeling that the ones with the pathetic number of spoons, the spoonies, they come out as a winner here. They are forced to think. They have to learn how to really live. How to use your everyday life. How to survive, but also, how to be content, satisfied, happy with just the number of energy/spoons/things in their life. Not using the spoons for being bitter or jealous or angry because the life didn't turn out to be just as it used to or supposed to or how they planned it to be. Instead, they concentrate on what is good, what is beautiful in their life. On what they have, not what they don't. 

And that is the thing ordinary people should learn a bit more. Instead of being dissatisfied and complaining about basically everything, they should concentrate on what they could be grateful for, but how's that ever going to happen when you don't even realise there is something you should be grateful for? Like getting up in the morning and not having to worry how to take the next step without collapsing. I'd love them to understand that they have endless opportunities. Every day is a new change to start making your dreams come true. Thinking about what you really want to do, instead of just going through your life thinking "if only" or "then", and actually never stopping for a monent long enough to breathe in and realising that if only thinking could be something else and then could be now.

We spoonies, we have our own individual reasons why we are here, counting our spoons. But it has definitely made us learn to appreciate life and its little precious moments and the gift of seeing beauty in them. Call it mindfulness or whatever, but for me it's just living.

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.

About new years and new beginnings - about life

 

I have learnt not to make promises just because year changes from one to another. I have learnt not to make plans just because of a new year. Above all, I have learnt both would be pointless. One cannot plan life. When the year 2016 changed to 2017, we raised a glass, me and my dear husband, and were grateful for all the things 2016 brought to us. Not all things were pleasant, easy, or something we would have chosen to live, experience. But I am certain those things were the ones that made the rest even more dear, precious, and beautiful.

 

A year has 365 days, mostly. It's a lot, when you think about it. At least when you cannot plan your next day. When you don't know if there would be a next day. To celebrate life is to give it a change. Normally we are too busy trying to define, mould or change our life to stop and take a deep breath or three, and listen. Just let it be and become what it should - or should have been long ago, given the chance.

No, I am not talking about making your life one big mindfulness exercise. I am just thinking aloud. My birthday is in January. I have used to changing my age around the same time the Earth gets older. It might lessen the glamour of new beginnings, being a January girl. At the same time, it makes them essential and natural part of my life. And thinking back, about last year... Oh, my.

 

In the New Year 2016 I didn't guess that in two weeks’ time I would lie in a hospital bed wondering if this would be it. I didn't see that I would be told I could never again continue my precious PhD about the Urban Culture in the Early Iron Age Northern Israel and surroundings, because my twisted genes and rare diseases have destroyed my sight, my brain, my body. I totally could have not predicted my ability to speak and write in Finnish would vanish in an overnight, one bright, sunny September day. Nor did I foresee cerebral stroke, well... A lot of things. But. I had no idea I would also enjoy memorable shooting session with Miss Windy Shop, I would design my first Varalusikka jewellery (or that soon later my husband needed to take the responsibility and make Varalusikka to work because I had not strength for it), I would discover that even if I have not strength for painting, I could use my iPhone and "paint" photos and discover a whole new world of Instagram.

You see? It's rather pointless to plan to ahead when your body does not speak the same language as your mind. (In my mind I would be writing my dissertation right now, instead of lying in bed, cannula in my arm and tubes saying drop, drop, and writing to you there -hi- about new years.) But even if your body is not as broken as mine, it might be the same. Carpe diem, they say. I don't. I say, let the moment go, let it be, let it come, and enjoy it as it is. Above all, remember, not all moments in life cannot be lovely pink rose petal dance, but it's worth living anyway. Because it might well be the moment of utter misery that is leading to the lovely pink rose petal dance moment. I want to believe it, anyway.

Shine Bright

It's almost December. Where did November go? Well, actually... It was just the other day I was thougth it is 2009, so maybe I should be asking, where did the years go? 

Social media is full of hygge this time of the year, I have noticed. Am I the only one thinking why such an ordinary thing as being at home, lighting candles, and enjoying life should be marketed as hygge, as a trendy thing to do? 

It is such a funny thing, that normal everyday routines during the winter time has a trendy name now and it such a fashion thing to do. Which is actually terribly sad, if you think about it. It is so so so so sad how many people need this hygge thing to stop and relax and maybe to lit one candle (and instantly put a pic to Instagram, of course) and think that wow, now I am trendy and I have done this, let's move on. People does not have time to just be still for a moment nowadays. Unles, of course, they are like me and just cannot do anything else anyway.

 I have to live my life at home, it's not something I have chosen, it's something that have happened me, and I have to accept it. It's winter. It's dark (extremely dark). It's wet. It's cold. Of course I try to make my days as cozy and comfy as possible, and that includes candles. Lots of candles. So maybe you get the idea? Hygge might be a perfect word for it. But it's not the point, I am not doing my life beautiful because it is trendy, I do it for me.

Other thing I have been thinkin lately is this mindfullness trend. Thinking that every second of your life counts, you should not waste one moment, you should enjoy it all, you cannot have a bad moment because that would compromise everything. If you feel sad, you have wasted precious moments. You cannot handle sorrow or pain, there are serious problems with your inner self, if you are not happy every single second of your life. I know, I am exaggerating, but maybe you know what I mean? Where is the place for sorrow, for tears, for feeling desperate, anxious, painful in this world of "enjoy every moment".

I am very, very blessed to be able to find joy in the little things in my life, and to be able to realise and think that those little things are actually the things that matter the most.  That it's just the little things that make my life beautiful despite all the - you know - less pretty parts of the life. Disabilities, pain, fatigue, letting go of most of the things that used define me, days in bed, brain injury, so rare diseases I am one of a kind, and all these close calls... But I strongly believe it is just because of these I can truly and honestly think life is precious gift. Because of these I can see the beauty of life, even if it is fragile and quiet one.

"Fall in love with your life" is a wonderful thought. I would like to think it would be the kind of love that is strong enough to last also the dark, deep days of living. Life is not only about laugh, happiness, light. It is so much more, even if it not often presented in magazines or in social media. (Well, of course it is, but only in a way to show how this strong person made it through hard times and the very happy end.) 

I see the pressure all the time around me, to have a perfect life. To make life perfect. I would like to scream my head of. Stop. Listen to yourself. Don't you realise? You have it already, you don't have to make it. Take your life as it is and accept that it will never be flawless. Life is beautiful just as it is. 

As Leonard Cohen put it so perfectly:  

there is a crack in everything, that's how the light gets in. 

There are cracks, holes maybe, in my or in everybody's life, but this only allows the light to shine even more brightly in. So shine bright. You are not alone. Life is about the cracks, it's about how you live with them and make them yours.

P.S. Sorry my Finnish readers, I still cannot write in Finnish.

HUOMAUTUS LUKIJALLE: Tämä on julkaistu vanhassa blogissani 24.11.2016
NOTE TO READER: This one was published on my old blog on 24.11.2016

Syksyn toivo - Autumn Hope

Syksy hiipi niin hiljaa lähelle, ettei sen tuloa oikein ehtinyt huomata. Yhtenä iltana vain huomasi, että nyt on syksy. Ei syksyä ilmassa, ei syksyn tuntua, vaan se tuli jo, jäädäkseen. Ruusut kukkivat vielä, mutta niidenkin innossa näkyy pientä väsähtämistä. Hortensia sävytti kukkansa iloisesta lilasta pehmeämpään syksyväritykseen ja pellot kylpevät ilta-auringon kullassa. 

Kesä on ainakin tällä minun sairausyhdistelmälläni aina hiukan kyseenalaista aikaa. Hiukankin yli 21 astetta, ja aivot muuttuvat kaurapuuroksi ja koko keho kipeäksi kimpuksi. Tämä kesä oli poikkeuksellisen hellä minulle, joten syksyn tulo ei ollut niin suuri helpotus kuin yleensä. Silti toivottelen sen ystävänä takaisin. Syksy on lapsesta asti ollut lempivuodenaikani. Viljan tuoksu, hämärtyvät illat, kesän jälkeinen hiljaisuus, kynttilät, takkatuli, levollisuus ja kodin lämpö sopivat tällaiselle kotihiirelle paremmin kuin hyvin. 

Kulunut kesä on varmaankin ollut säänsä puolesta useimmille hienoinen pettymys. Monet vertaisystävät, jotka sairastavat Ehlers-Danlosin syndroomaa, ovat joutuneet turhaan odottamaan helteiden tuomaa helpotusta kipuihinsa. Itselläni kun on EDS:n lisäksi myastenia, helle on vähän monimutkaisempi jutttu. Oman kesäni teemaan hieman hillitympi sää on sopinut hyvin. Kesän alussa sain neurologisen kuntoutusjakson päätteeksi kesäläksyn, jota olen tunnollisesti tehnyt. Syksyn tullen minun on aika miettiä, mitä sitten. Mitä sitten, kun todellakin pitää konkreettisesti hyväksyä ajatus, että työkykyni ei yksinkertaisesti riitä mihinkään työhön. 

Tällä sairausyhdistelmällä, johon kuuluu yllämainittujen lisäksi krooninen väsymysoireyhtymä ja vaikea, onnettomuudessa tullut aivovamma, tällä nyt vain elämä meni näin. Olen kiitollinen siitä, että vaikkei työkykyä olekaan, olen elossa. Vaikken pääsisikään sängystä ylös, mitä sitten. Elämä voi olla kaunis sittenkin. Ja uskon ja luotan vahvasti siihen, että vaikka  joudun luopumaan jostakin niin äärimmäisen rakkaasta kuin työni, jotakin hyvää, kaunista ja onnellista odottaa jossakin toteutumistaan menetetyn tilalle. 

Hiljaisten, rauhallisten ja pitkien päivien iloksi hipsuttelin Instagramiin. Pieniä tuokiokuvia, arjen helmiä, löytyy omalta sivultani nimellä harvinaisenkauniselama. Myöskin varalusikka-nimellä löytyy kauniita kuvia, osassa Varalusikan lusikkakoruja, osassa ei, mutta kuvien ajatus on tuoda pieni ilohetki, vaikka vain sellainen kahvikupinmittainen.

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 Autumn came so quietly that I was surprised to notice one night that yes, it really is here already. Roses are still blooming but rather tiredly, hydrangeas have changed their colour from perky summer lila to more soft autumn pastels. 

I know most people love sunny, warm summer days but I am so delighted and relieved that the summer was not that hot. With myasthenia gravis, warm is a horror, even if my Ehlers-Danlos syndrome part would have loved it. And I love autumn, it has been my favourite season since childhood. I love the feeling of coziness, candlelight, golden fields, twilight, tranquility. The suit me well, as I am always at home anyway. 

I had a difficult task to do this summer, as a homework from the neurologic rehabilitation I participated at the beginning of the summer. I truly, inevitably have to understand, admit and accept that I am not able to work anymore. With myasthenia, EDS, CFS/ME and severe brain injury, it is impossible and I havet to accept it. I have to be thankful I am alive, and even if I spend most of the time staying in bed, life can be pretty beautiful anyway. And, I am absolutely certain that even if I have to give up something as precious as my job, there is something good, something beautiful, something happy waiting for me somewhere. Someday. Somehow. 

As the days tend to be long and quiet, I joined Instagram. You can find the tiny moments of my beautiful life in my page called harvinaisenkauniselama. (Harvinaisen kaunis elämä is Finnish and means unusually beautiful life, and it refers to my three rare disabilities.) Please feel free to have a look! Also it's me that usually posts on Varalusikka's Instagram page, on the name varalusikka. Please have a look at it too, there are pictures of spoon jewelry but also other pretty pictures to give you a moment of happiness, even if just as brief as a cup of coffee.

HUOMAUTUS LUKIJALLE: Tämä on julkaistu vanhassa blogissani 18.8.2016
NOTE TO READER: This one was published on my old blog on 18.8.2016