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

Mekkoja ja unelmia - Dresses and dreams

Tästä  pääset lukemaan, miten ihan harvinaisen tavallinen nainen päätyi hymyilemään kameralle yllään kaunis mekko, ja oikeastaan myös, miksi. Tässä pieni lainaus:

Kuljen usein pyörätuolissa ja minua kovasti huvittaa, miten ihmiset hätkähtävät nähdessään säteilevän hymyn, pinkin tyllialushameen, perhosmekon ja koruja jollakulla, joka istuu pyörätuolissa. Tahdon osoittaa ihmisille, että joka ikisellä, harvinaista kroonista sairauttakin sairastavilla, on oikeus elää juuri niin täyttä elämää kuin… no, uskaltaa, tahtoo. Kipujen, surun, uupumuksen, taisteluiden vastapainoksi ja niiden rinnalla voi saada myös jotakin ihanaa, kaunista ja onnellista. Vaikka koruja ja tyllimekkoja. Siihen tarvitaan vain ripaus iloa ja uskallusta. Arjen huolien ja kiireen keskellä kun malttaa hetkeksi pysähtyä, vaikkapa kahvikupillisen verran ja katsella ympärilleen ja miettiä, että onpa oikeastaan ihan mukava asia, että olen juuri tänään elossa. Sellaisella hetkellä tajuaa: jokainen päivä voi olla perhospäivä.

 www.misswindyshop.com

You can read (only in Finnish, I am sorry) here a story of a woman who thinks that every day can be a wonderful day, and that you deserve to be beautiful, even if you have rare diseases:
http://blog.misswindyshop.com/emilia/ 

yhteistyössä Miss Windy Shopin kanssa 

yhteistyössä Varalusikan kanssa

HUOMAUTUS LUKIJALLE: Tämä on julkaistu vanhassa blogissani 14.7.2016
NOTE TO READER: This one was published on my old blog on 14.7.2016

Kesätuuli - Summer Wind

Olen unelmoinut koko pitkän talven, kevään ja kesänkin merestä. Lämpimästä rantakalliosta, leppeästä tuulesta kasvoilla, aaltojen äänestä. Liikuntarajoitteisena ei ole ihan helppoa päästä nauttimaan merestä, hiekkarannoille ei pyörätuolin kanssa pääse mitenkään, ja kalliot ovat yleensä yhtä hankalia nekin. Harvoin on luonto tai luonnon apukädet järjestäneet esteettömän kulun rannoille. Ja silti meidän sairaidenkin ihmisten mielessä palaa ihan sama tuli kuin kenen tahansa sisällä, toiveita ja haaveita kesästä ja vedestä ja auringosta.

Lapsuuden kesiin kuului aina vesi, tavalla tai toisella. Serkusten kanssa vietetyt mökkikesähetket ovat niin syvälle sydänmuistiin piirtyneet, ettei edes aivovamma niitä ole pyyhkinyt muistista. Järvikesät ja souturetket, uimapatjamaratoonit vastarannan saareen, loputtomat laiturileikit, matonpesut, uusien perunoiden pesut laiturin lämmössä... Ja meren rannalla suolan tuoksu, kaisloista rakennetut aarteet, veneseikkailut, uimaretket piskuisille luodoille. Puhumattakaan tietysti muurinpohjalettujen, grillimakkaroiden ja kinkkuvoileipien ehtymättömästä määrästä, jolla serkuskatrasta pyöritettiin. Ei aina paistanut aurinko, ei. Mutta ei se tahtia hidastanut. Mikä esti uimisen sateessa? Ei niin mikään! Ukkosella sentään, ja silloin kun vanhempien mielestä oli kylmää, pysyteltiin mökkien hämärässä lämmössä, pelattiin unoa, luettiin neitietsiviä ja suunniteltiin supattaen Suuria Asioita, joita aikuisina tekisimme.

Varmaankin jokaiseen suomalaiseen on sisäänrakennettu jonkin asteinen kaipuu kesävetten ääreen. Niinpä minäkin tahdoin, yhden kerran, valloittaa rantakallion. Puin kauneimman mekkoni, tyllialushameeni ja ballerinat ja valmistauduin kesän kauneimpaan muistoon. Pääsin rannalle. Taaimmalle kalliolle, lähimmäs tietä ja autoa, mutta pääsin! Sieltä näkyi meri, aaltojen kimallus laskevassa auringossa, hempeä pastellitaivas ja kaukana, kaukana horisontissa purjeveneitä. Istuin kalliolla, jonka lämpö hyväili käsiäni, kuuntelin aaltojen lyöntiä ja lokkien laulua, annoin kesätuulen pyyhkiä kasvojani ja imin itseeni suolan tuoksua koko vuoden tarpeiksi. Ensi kesänä sitten taas nähdään, meri.

I longed the whole year for the sea. I longed for the gentle sea wind, roaring of the waves, but it is not that easy to get to the sea if you are disabled. And even we, who have chronic illness, have dreams and desires, we too would love to have memories about summer, the sun, and the sea.

Water was as vital part of my childhood summer memories as sun and laughter. Memories of summers with my cousins are so deep within me that even brain injury has had no effect on them. Days on the lake or the sea spent just as fully as only children can: with laughter and joy. Picnics, swimming, rowing... And swimming in the rain, of course! And if the weather was just too bad, playing cards inside, reading nancydrews and dreaming about all the things we would do when we would eventually be grown-ups.

I think that there might be a built-in longing for the summer waters in all Finns. I yearned to the sea just once this summer. So I dressed my most beautiful butterfly dress, tulle petticoat, ballerinas, and was ready for the most precious summer memory of this year: the beach. I made it! Even if I made it to the rock nearest our car, but I made it anyway. I saw the sun, I saw the glittering sea, and I saw the pastel painted evening sky. I hear the seagulls, the waves, and I felt the sea wind in my face. I breathed the fresh salty air. I absorbed the sea within me so that I can hold it there the whole year. I will see you again next summer, sea. Wait for me. 

HUOMAUTUS LUKIJALLE: Tämä on julkaistu vanhassa blogissani 8.7,.2016
NOTE TO READER: This one was published on my old blog on 8.7.2016