A True Story

I have tried to write about my stay in hospital for a long time now. I just keep staring at the empty screen page and wonder, what I could say. Actually, what I keep wondering is, what exactly happened. The most important question I'd like to get an answer some day is, why.

I have had nightmares every night since I got home, which is very unlike me.  I think it tells a lot about everything. It would be easier to handle, if I had the why part figured out. Any reason would do. But there's none. And that, my friends, is terrifying. Which is why I'm trying now to tell it all, as I feel it's a story needing to be told. Despite the fact that I am absolutely horrified to do so, as I suspect it will do me no good. But, as this seems to be the way how Finnish CFS/ME patients are treated in general now, it must be told. It can't continue like this, honestly. We need help.

As you know, I have had a medication for my rare illnesses that is not very traditional (it’s a research I’m voluntarily taken part of), and it has helped me a lot in these part two years. I have been able to live without constant fear, pain, and struggle that were part of my life before this particular medication. It has helped me to live a life that feels beautiful, meaningful, and worth living for. For bureaucratic reasons, this medication is now downright impossible. 

I tried to find a way to continue the medication through public healthcare. I thought that in modern society of Finland celebrating it’s 100^th anniversary of independence this December, famous for its education, high-tech, and human rights, there would be a way to support the life, well-being, and health care of a citizen. I was confident I’d get help. I didn’t. I went to a Finnish hospital to get help. I came out in much worse condition I went in. 

I try to sum things up, but it’s not easy as there happened so much and there’s absolutely no sense in most of it. So please, bear with me. 

In the end, after many efforts, I got an invitation to go to the hospital for couple of days, to see how the medication works and to decide what to do with it. That’s what I was told. This is the first strange part. I was never told, that I was there in order for them to take the medication off and see how it goes. I only read it afterwards from the medical report that “the patient comes to hospital for the cancellation of the medication”. That teeny tiny little detail would have been nice to know. 

My medication was switched off on the day 3. (With no explanation, what on earth I did there the first two days - despite tiring myself, as I couldn’t rest or sleep.) About half an hour later I wasn’t able to move my legs or hands. My breathing got heavier, and I drifted from consciousness to near or full unconsciousness during the next days and nights. My sugar and temperature levels varied a lot, blood pressure dropped quite considerably during the next days. I was able to whisper at times, often I couldn’t do even that. I needed catheterization as I couldn’t feel my body. I had a UTI. I couldn’t speak or swallow or move if my eyes were open, and vice versa. It was too much for my system to do both. I was dehydrated. I needed to be fed. I needed to be turned in bed as I couldn’t move. There is no mention about most of this all in the medical report. (Oh, they did write I had no difficulties to close my eyes. Yay! I didn’t. That part is true. They only forgot to mention I couldn’t keep them open.)

The medical report states that cancellation of the medication completed successfully. I wouldn’t exactly choose a word “successfully”, unless they mean they didn’t kill the patient. I think we might have a bit different point of view here, as I think if a patient was able to walk, speak, eat, sit, write, see, wash her hair, even pee before the cancellation of the medicine, and after that wasn’t able to do one single thing of that list, and left the hospital struggling to be conscious just to get out of there as quickly as humanly possible… Well. I wouldn’t describe it as a success. I’d go for catastrophic.

Pain is something I am quite familiar with and used to, and I can handle it rather well. I’m so used to it, I don’t even notice it normally, but with the extreme noises in the stroke surveillance, resting was literally impossible. I couldn’t think my migraine and neuralgic pain away - even if I tried my best. (Practicing mindfulness in a room with 3 televisions on, surveillance equipment peeping, people talking and moving all day long, is not the easiest, I can tell you.) It turned out that as simple thing as painkillers was hard to get. But, on the other hand, medicine in general was a bit of an issue, as getting my myasthenia pills on time was not easy either. 

Most of the time I wasn’t able to eat myself as my muscles just denied all collaboration. I needed to be feed. Swallowing was so hard work I couldn’t drink enough, even if I knew how extremely important that was. Later it turned out my dehydration was in the verge of catastrophic already when I arrived in the hospital, but it was ridiculously hard to get simple iv saline – as, you know, that was one of the medication I was denied after the bureaucratic show. For 2,5 years I got regular saline infusions to support my hydration, nutrition, and malabsorption every 2-3 weeks. Suddenly it was considered possibly harmful. So, giving me some in hospital seemed to be a bit of an issue. (I mean, the basic natriumchlorid infusion, seriously? Dangerous? In dehydration?) 

I have a very impressive medical, scientific justification for this simple iv saline treatment, and one of the reasons is that it supports my kidneys that are not functioning as they should. This important treatment was cancelled on beginning of September, and 3 weeks, 3 days later my body started to react. I have had now 3 antibiotics for UTI and there’s no sign of it getting better. The inflammation got very evident in hospital, but it was only because I repeatedly asked for the results, that anyone reacted. Oh, there is no mention of the UTI in the medical report.

A note about the catheterization. There is no mention about that in the medical report either. Nor about the fact that there was ca. 800ml urine in my bladder before the nurses put an indwelling catheter. Nor about the fact that after the chief doctor heard that nurses had put an indwelling catheter two days ago, and ordered them to take it off (as I just needed to get a grip and walk to the toilet), catheterization was needed several times as it’s just not possible to go to the toilet if you don’t feel your bladder, your legs, or the need to pee.

I left the hospital after 8 days, after two doctors (and half of the staff witnessing it all, no way to have some intimacy) came to tell me they have “interpreted your 2 years old ENMG results again and decided you never had myasthenia”, instead they gave me a psychiatric diagnosis. Yes, I’m serious. Don’t laugh. This is not a joke, unfortunately. They told me I can choose to stay in hospital for several weeks or go home. After few hours of hard thinking, I choose to go home, as I knew nothing would change either way. Only, in my papers there’s no mention they gave me option to go home. I’ve received about 4 reports now stating the patient left the hospital without permission. 

Past few years I have heard a doctor after doctor saying that with all the different autoimmune diseases, all the autonomic nervous system dysfunctions, all the rare conditions, it’s impossible to say what’s what and it’s hard to find effective ways to help. But now, suddenly, it’s all psychological, my mind causing it all. That would be a teeny tiny bit easier to accept without few facts.

First. “Patient has no psychiatric problems nor need for psychiatric care” reads in my papers, written by the chief psychiatric of the same hospital some months ago, just to be sure my problems are somatic, not psychological. 

Second. I have measurable test results showing my medical treatment actually works, but they didn’t want to see it. In fact, they didn’t read the medical justification for my treatment either, as “there’s no point, you imagine it all”. As a researcher myself, I do actually highly object it. How is it possible that pure facts are ignored, and instead things are arranged to look like they wanted? In science, it’s called forgery. I doubt it’s different in medical science either.

Third. For all the years anyone who has even tried to solve the mystery of my several rare illnesses and their combination, how they affect each other, and how to help me, not once, not one single time they have hinted that this might all might be psychological. (With the exception of one doctor shouting that accusation at me when insanely furious, but that wasn’t a diagnosis way of expression, that’s was only an insult.) I had an accident and got a brain injury. I imagine it? It’s psychological? I have alfa1-antitrypsine deficiency. I imagine the deficiency of ATT in my blood and also, I imagine the genotype MZ? I imagine Ehlers-Danlos syndrome? (Not to mention psoriasis, migraine, asthma, all the discus generations, POTS…?) Several doctors have diagnosed that I have a severe dysfunction of autonomic nervous system, and it’s even measurable, but it’s only in my imagination? I’m also totally imagining also the dysfunction of dopamine system? Oh, and myasthenia gravis? Imagination too…

And maybe fourth, I should mention here the obvious. There’s no point in hiding or trying to avoid it. After all that happened, there’s no point denying that the switch of diagnosis was purely personal revenge with no medical justification. All that was left out of the medical report, all the bend or even false things there, all the contradiction between what I was told in person and what is said in the reports, all the promises of help, even the promise of not changing diagnosis, not to mention the “care”… 

I have no faith in Finnish public health care anymore. Anyone knowing a good lawyer?

Good Enough

I'm home. I'll tell you everything that happened in hospital, later, when I am ready. Thank you for all your love, support, and kindness, my dear friends all over the world. You can't imagine how much your encouragement mean to me. You reminded me about the beauty of life, of friendship, of hope, when I needed it.

I didn't get any help from Finnish public health care. What I did get was an experience that could cause nightmares for a long time if I'd choose that way. Which I won't. Life is too precious, too beautiful, and too fragile to spend in bitterness, negativity, and hatred. So, I surround myself with all things beautiful in life, with as much love as humanly and heavenly possible, with smile, with gratitude. And, I'll find a way. If one door closes, there are plenty of others, and after that, windows...

I have lived my whole life being honest and real, just me, not pretending to be anything more, anything less. This incident thought me one thing. Being honest isn't always the best way to deal with bureaucracy. Being just myself isn't always good enough for someone wanting to think ill of me. Being honest and real gives others so much weapons that being real might turn against us. But you know what? I have thought this a lot, and cannot regret, as I can look at the mirror and smile to myself, I can stand behind my words and behaviour. I don't need to regret anything. Being just the real me has always been the right thing in the end.

One song fits so well to my thoughts I'd love to share it with you.  (You see, I'm really back, with all the quotes and songs.) I've told you many times how much the lyrics of Finnish artist and song writer Juha Tapio mean to me. They give me strength, hope, and courage. This song, Kelpaat kelle vaan, is one of them. "You made it, and you're good enough for anyone." I think we all need to hear it sometimes, we made it, we are enough. Just as we are, real me and you, it's enough.

Kelpaat kelle vaan/ You're Good Enough for Anyone

Juha Tapio

For a moment still, this side of the world

for a moment still, sleeps a white night

You wonder how something can hurt so much

Your best years, they were all stamped on the ground

I can't know even half of your pain

all the words stay useless in the air

but in one morning, I know it,

you wake up to see

you made it, and you're good enough for anyone

And you're beautiful, even though you don't feel like it anymore,

even though they took your faith in humans

For a moment still, half of the world sleep

just a moment still, the bright morning will arise

I can't know even half of your pain

all the words stay useless in the air

but in one morning, I know it,

you wake up to see

you made it, and you're good enough for anyone

Is This Really Happening?

Can you believe it? I'm in hospital now, and it's officially the first time in my very fragile life I'm honestly fearing for my life. In hospital. In Finland celebrating the 100th anniversary of independence. Highly educated, highly polished, highly praised country of Scandinavian high technology, sophistication, science, and civil rights. 

I have with me a huge folder of scientific medical research texts, official statements, all stating that I need and are entitled for my empirical research medication, to the point of molecule level justification why I need this medication keeping me literally breathing and alive. (The one bureaucrats decided to take away from me when they decided to restrict the rights of my M.D. without legally pounding justification. The one bureaucrats admit I need but nobody wants the responsibility to write prescriptions.)

And what I hear? After a whole exhausting day of taking care I get my "appropriate and real" myasthenia gravis medication on time (the one this specific clinic has prescript in the first place), as I need it every 2 hours and not once got it without especially asking for it, I heard matter-of-factly "your treatment will be closed down tomorrow". Yes, you heard me. Closed down, not like "we'll discuss about your medical issues tomorrow" or "we'll think about this medical treatment tomorrow" or even “we have read all the papers and decided…”. I'd be very interested indeed to hear the scientific justification for the decision if I wouldn't be this terrified. 

How this can be happening in a highly-sophisticated country like Finland? They don't listen to an individual experience of a citizen nor scientific facts. Just because, you know, power feels so damn good.

Finnish CFS/ME patients Calling For Help

I'm calling for international help for Finnish CFS/ME patients. 

Finnish authorities have started a chase of CFS/ME patients and doctors, and left thousands of patients without help. Before CFS/ME, this hunt was for hypotyreosis; several doctors have been silenced, and patients left without help.

Finland has no official consensus of the treatment of CFS/ME - as this illness is not accepted as an illness in Finland at all. 

Now we need your help. We need official and unofficial statements of international/national CFS/ME or other patient/medical organisations etc. Especially needing a connection to EMEA and CDC.

Why am I asking this for you, personally? Because I have been shouted at, threatened and neglected by Finnish public healthcare for years because, and this is a direct quote "it's your own fault, you have too rare illnesses". I turned to the one doctor in Finland understanding my rare illnesses, and I got help. I mean HELP. Actual, real, efficient, medical help. For 4 years. Until last week, when officials decided that's it. No more treatments, as, a direct quote "these treatments could possibly be harmful", without never seeing one patient or consulting this doctor. 

Because of my complicated rare illnesses, my body does not tolerate the vital medical care it needs for myasthenia gravis (for which, thank God, I get help from public health care), without this medical treatment I had. Without it, my body functions stop working. I have about 2 weeks worth of medicine left, and not one single doctor in Finland dares to write a prescription now, as they are afraid of this hunt. Officials agree, I need my treatment, but nobody takes responsibility. They are afraid of something.

We need international help now, trying to convince Finnish authorities that CFS/ME is a real illness, needing medical care (other than CBT or GET) and justice. And above all, this one doctor needs his rights back, he's internationally distinguished M.D., professor, and researcher, and has dedicated his life for helping CFS/ME patients. 

If you have any ideas how to get a connection to your country's patient associations or EMEA or CDC, please send me a DM in Instagram (harvinaisenkauniselama), or comment below. Thank you!

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.

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

Gentle Softness

Anaphalis margaritacea

I would like to think October is the perfect time of year to be gentle to yourself. Summer is definitely over, but the fuss about Christmas is yet to come. (You must remember, I am a Finn, we don't do Halloween here, it's just October and yes, All Saint's Day, but not the big Halloween thingy.) I love this time of year, the bright colors are gone now, the nature is full of soft, gentle tones. My fatiqued brains enjoy it, not too much details, colors, light, it's just softness and stillness.

Somehow I feel most content this time of year. I hope I will someday learn to feel this way thewhole year round. Or, maybe I feel content just now, because I think I can honestly say, I am learning my lesson of life and truly letting go what could not be. It has been a long journey, still continuing the rest of my life, I am sure, but I have (almost) accepted it. I have learned to be gentler on myself. Not all the time, none of us could do that, I suppose. But you know the moments you are thinking if you had tried harder, done differently, or if this and that... In these moments I now remember what doctors have said to me. I could not have done more, I could not have tried harder, I could not have done differently. I have a brain injury. I have several rare illnesses. My body have a mind of its own and it does not do always as I want it to do. I am not a quitter, I tried harder than most would have, they say. And now, when I lay on my bed unable to move, I don't blame myself and think if I just want harder, maybe...

I was going to write my PhD about the Late Bronze Age urban culture continuing in the Iron Age I Northern Israel and Syria. It was my dream, my goal, my self. But I want to think there is another plan for me, that's why I had this accident destroying my memory and launching Ehlers-Danlos syndrome to a full force in me, and also chronic fatique syndrome... And myasthenia gravis. Most of the time I can't even remember the title of my dissertation. Oh, it has been a bitter path, to accept that I cannot ever continue to do what I love most. I still cry a lot, I still miss it, I still have a tremendous sorrow in my heart, but I understand it's impossible. That I need to accept it and try to focus on what's more important at the moment. To breathe. (Because that's sometimes quite an effort.) And I believe, someday I will understand, why all this.

I was delighted to listen to Leonard Cohen's latest album You Want It Darker, released yesterday. It's so full of the themes I struggle with. And yet, it has gentle softness in it. As always. I have been listening his magical voice my whole life, but this latest one, this is absolute, pure gold for a broken soul. Dark tones, but there is still that gentle reflection of hope. It's like life itself. The balance of everything:

I wish there was a treaty,

I wish there was a treaty 

between your love and mine.

- Leonard Cohen -

So this October I shall lit candles, enjoy little things, listen to the gorgeous deep voice, be gentle on myself, celebrate life. 

HUOMAUTUS LUKIJALLE: Tämä on julkaistu vanhassa blogissani 22.10.2016
NOTE TO READER: This one was published on my old blog on 22.10.2016

Beautiful October

It's October, my favourite time of the year. It's as if nature is gentler, softer than in any other month. I like to think also people are softer, if only a little and only from the inside.

I have had some difficulties with my speaking and writing, mainly in Finnish. My English is just as it always has been, not quite correct but hey, I am Finnish after all. The reason for my latest problems is a mystery to be solved, it might have something to do with the blood circulation in my brain. I speak Finnish like a foreigner and I write Finnish like a total foreigner without any knowledge whatsoever of any kind of grammar on this planet called Earth.

I have many disabilities but I am so gratelful none of them stops me from enjoying the little things in life. I know I am truly blessed, because not everyone has this wonderful gift. Past weeks have not been easy for me in so many ways I am not even trying to explain. However, I have enjoyed resting under the blankets in our conservatory, inhaling the crisp autumn air, letting the gentle autumn sun shine on my face (this I could not let happen in summertime), watching the vivid colors of the nature. And, of course, drinking coffee. 

I have heard some people think that I think I'm a saint, I am an absolute fake and other such lovely compliments. Well, I don't care. This is, after all, my life. I have learned how to be content with it. Hard way. Everyone has bad moments, dark thoughts, pain in the heart, me too. It's just that I don't have the ability nor the strenght to dwell on them. I lost my native language. It's quite sad to speak English to your Finn three-years old who does not understand a word mum says. Every word I speak hurts, and causes extreme fatique. But, I have learned a lesson. Don't never ever take anything for granted. Never stop being grateful of the simple, small things you have. And never ever when you wake up in the morning, forget to feel blessed and thankful because you woke up and are alive. I have had too many moments not to take life as granted anymore. So, I try to make every single day beautiful, kind and pretty for me and for my family, it might be my last.

Most of the days I am too fatiqued to do anything, I just stay in bed and look at the life around me. There might be a good moment or two, maybe a little crocheting, a nice cup of coffee, a tiny bit of reading or looking for beautiful instagram pictures and listening to what my children have on their mind. Small things most people doesn't even stop to think twice. Huge delighting moments for me. I admit this all is a bit different from the life I always imagined would be mine. I planned my life differently. I was writing my dissertation about a subject I hardly cannot memorize anymore, I was a so-called good mum participating my children's lives with full intensity, I had hopes and plans for the future I never had the chance to have. But I got more. Much more. I got a memory so bad I cannot dwell on anything very long because I don't remember what for. I got a life full of dreams, wishes, love, beauty, and ability to enjoy the small things. I would call myself a winner in this bargain.

I hope your autumn would be as filled with love, sunshine, warm thoughts, and joy as mine.

 

HUOMAUTUS LUKIJALLE: Tämä on julkaistu vanhassa blogissani 5.10.2016
NOTE TO READER: This one was published on my old blog on 5.10.2016

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.

**

 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