Today music is OK-- Tänään musiikki on OK

Hi

Täällä tänään istun vuoteessa ja kuuntelen Danzin puhallikvintetto B-duuri, op 56. No.1, 1:Allegretto -- just vaihtui 2:Andante,..Ihanaa, että tänään aivot ja aistit kestää kuuntelua!!

Kaunista, ylen kaunista! Kuuntele itse: Andante

Today I am sitting in my bed and listening to Danzis Wind Quintetto B-Flat Major. op 56 No1, 1:Allegretto -- just moved on to 2: Andante. It's wonderful that today my brain and senses allow me to listen!!

It's ever so beautiful!! Listen yourself: Andante

Today's views -- guess where? / Tämän päivän näkymät-- arvaa missä?

Hi / Moi,

Sorry for the long break -- I have my reasons ;)  Pitkä breikki bloggauksessa -- mulla on syyni ;)

Today I am posting you pictures of my surroundings. These have been my views for the last 3 days once again. Uplifting? - Maybe not. At least I am feeling very down...

Tänään laitan kuvia ympäristöstäni. Nämä ovat taas olleet näkymäni viimeiset 3 päivää. Piristävää? - Ehkäpä ei. Ainakin minua masentaa...
    

Some people have asked me what do I do when I am having a so called duvet day. 

The answer is I sleep, sleep and sleep. Sometimes when I can't sleep any longer and still have to stay in bed, I cross stitch big chunky cushions (the ones I can see clearly and don't have to count). Can't read, can't listen to music, can't watch DVDs, can't really talk on the phone. Partly cause I am too tired to concentrate, partly because sensory overload and irritation. It's a quiet existence. Close to non-existence. This really is a cruel illness. It robs away all the things that make you happy and you can't even fight it, as it makes it worse.. I feel like a fly in the spiders web- no escape, no hope.. 

Jotkut ovat kysyneet, mitä minä teen petipäivinä.

Vastaus: Nukun, nukun ja nukun. Toisinaan, kun en voi enää nukkua ja joudun silti pysymään vuoteessa, teen ristipistoilla isoja, pulleita tyynyja (sellaisia, jotka voi nähdä helposti, eikä tarvitse laskea pistoja). En voi lukea, kuunnella musiikkia, katsella DVDitä, eikä edes puhua puhelimessa. Osaksi koska olen liian väsynyt keskittymään, osaksi aistien ylikuormituksen vuoksi, joka ärsyttää. Hiljaista olemassaoloa.  Melkein olemassaolemattomuutta.  Tämä on todella julma sairaus. Se varastaa kaikki ne asiat, jotka tuottavat iloa, eikä sitä vastaan voi edes taistella, koska se vain pahentaa asioita. .. Olo on kuin kärpäsellä hämähäkin verkossa-- ei pakotietä, ei toivoa...

Sorry, I promise my next posting will be a more positive and happy one. Hope sincerely that you have had a better start of the week than me!! Love!!

Olen pahoillani. Lupaan, että seuraava blogini on positiivisempi ja iloisempi. Toivon vilpittömästi, että sinulla on ollut parempi alkuviikko kuin minulla!! Halit!!

ME and Exercise

“The whole idea that you can take a disease like #ME and exercise your way to health is foolishness. It is insane.”—Dr. Paul Cheney

In Finnish: Hesarin artikkeli -- Vihastuttaa!!!!

http://www.hs.fi/kotimaa/a1399263839583?jako=baaa181fc0198f0fe65c237d12f13a91&ref=fb-share

Luepas edellinen... tässä mun mietteitä siitä: 

Vai että liikunta? höpönpöppöö... Liiku siinä, kun pienimmänkin ponnistuksen seurauksena nousee kuume ja joutuu sängynpohjalle päiviksi... 

Tämä on se suomalaisten lääke joka vaivaan, Liikunta!! Onhan se halpaa yhteiskunnalle, sen sijaan että ihan AIKUISTEN OIKEASTI etsittäisiin syitä ja hoitoja. 

Mielenkiintoista artikkelissa on se, että viruslääkkeet ja immunoglobuliinit mainitaan tehonneen Italialaisessa tutkimuksessa, Tammiuute ja akupunktio ranskalaisessa tutkimuksessa. Sitten ihan MAINITSEMATTA MITÄÄN TUTKIMUSTA väitetään liikunnan ja CBT:n (kognitiivinen käyttäytymisterapia) olevan paras keino... 

Vihastuttaa!!

“The whole idea that you can take a disease like #ME and exercise your way to health is foolishness. It is insane.”—Dr. Paul Cheney

Had a lovely weekend -- now is the payback time...

Last  weekend was a busy one. On Saturday I took part in a "choir" practice and on Sunday we hosted a Finn-Brit gathering in our house, playing games and enjoying yummy food. We had a "nyyttikestit" which means "Bring your own for everyone to share".  My hubby was amazing as he did all the work (I just tidied a bit): shopping, cooking, cleaning, shifting the furniture - and the clearing up afterwards... All I had to do was to enjoy the proceedings and do some hosting. He's pretty amazing!

The Finn-Brit "society" we have in here is amazingly big for such a small place in Finland. At this gathering we had 12 grown-ups and 4 kids squeezed in for fun and giggles. It was really great that everyone managed to make it. And we did have a lot of laughs!! The evening carried on until at midnight I turned into a pumpkin and decided to go to bed (really had to).

Yesterday was a humangous struggle. I had to be at a local gallery at noon to take some of my paintings into a Naivist/Surreal exhibition organised by our local art club. I could hardly stay on my feet and had to ask hubby to come with me to make sure to catch me if I start to fall.  This took about ½ hour. Rest of the day I stayed in bed and also slept for 4-5 hours waking up just before the bedtime. 

I was so exhausted though, that I spend couple of hours in the night throwing up... You know that when you get physically exhausted you start doing that .. like athletes after a truly vigorous training or a race... Which in a way is a ridiculous comparison but on the other hand very accurate, as in both cases you have used up your energy and adrenaline with  the "fight or flight" -reaction takes over making you chuck up.  

Today I have yet not managed to get up or do anything worthwhile - and it doesn't look like I'm going to either.. 

I feel sorry for my family as they always end up bearing the brunt and most of days having a very little of my company (not always a bad thing :) as I am in the land of nod. I would love to spend more time with them and worry about the consequences of the mother not being "present" for both the child and the marriage... So far they still love me, which I am amazed and very grateful for.

ps. Naivist/Surreal exhibition in Studio Sariikka --hint hint

Cancellations

I saw the this on Facebook and it reminded me of something I've been meaning to write about many times before: Cancellations .

Before I got ill I took pride on being reliable. If I promised something, I also made sure I did it. Also had I accepted an invitation, I made sure I would be there. That all has changed. However much it goes against my values, I have had to give up and CANCEL because I am too tired to do what I've promised. 

Most people understand for the first or second time, but if I have to regularly say no thanks to invitations or worse yet, hope to make it, say yes, and then having to cancel, people stop inviting and quite frankly think that I am rude or there's something seriously wrong with me (which of course is the case, but not quite the way they think :) ). 

Result: My hubby, who gets embarrassed about this, thinks I should not promise to do anything, or definitely try not to organise anything myself, as I most likely end up cancelling. 
I think that I just can't give in to my illness and never be optimistic enough to think I might do things I've promised and so I promise and from time to time have to cancel.

 -  A big reason for this is that a huge part of the struggle with ME/CFS is to try to keep your positive state of mind. It is so easy to get depressed as there is so little fun things one can do and the little energy one has, needs to be spent on doing the things that have to be done. (which quite often are not fun at all: cleaning, cooking, washing etc).

I want to believe I can accept invitations and socialise, rather than be imprisoned inside the four walls of my house/bedroom. Unfortunately this is not the case most of the time.

So once again, my apologies for all of you I've had to cancel on!