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It's that time of the year again, May 12th and CFS Awareness Day. CFS refers to chronic fatigue syndrome, a severe and debilitating multi-system illness that often leads to permanent disability, sometimes also known as ME (for myalgic encephalomyelitis). It is one of the most common chronic illnesses, but also one of the least known. You can read more about it in Wikipedia, <a href="www.ahummingbirdsguide.com/wha…">Hummingbird's guide to M.E, <a href="diamondie.deviantart.com/journ…">my previous CFS awareness day journal or my <a href="www.angelfire.com/mn/Maija/cfs…">CFS page. I've also submitted an interview with a fellow CFS sufferer.
It's now been four years since I found out what had rendered my life into misery and just a little over four months since I got an official diagnosis to explain the cause behind the fatigue, brainfog, swollen lymph nodes, arrhythmias, neurally mediated hypotension, rashes, fever, aches, hair loss, endless infections and many other maladies. Still, it's a not fair fight to fight, since no one really knows what is causing this. We know that prednisone is currently helping me (but I will probably have to give it up soon), but it doesn't help everyone and we don't know why.
One of the reasons why CFS is still such a mystery is the lack of research funds. CFS is not a trendy subject of support, like some other illnesses. Most of those who're lucky enough to get the correct diagnosis are too sick to carry out awareness campaigns - and those who do are largely ignored by the media. Much more money has been spent in studies trying to prove that the the illness is psychiatric in origin than in studies exploring treatment options.
To see how the federal research money is divided with different illnesses and issues in the United States, take a look at <a href="www.nih.gov/news/fundingresear…">this page. Chronic fatigue syndrome gets 5-7 million dollars of research money a year. That may sound like a lot of money, doesn't it. However when it comes to scientific research it is just spare coins at the bottom of your pocket. Let's compare it to some other illnesses, using the 2006 estimate:
We can see that $7 million isn't really all that much. All of the illnesses I listed are very serious and debilitating, sometimes fatal, but so is CFS - and it's more prevalent than any of the conditions in this list. Breast cancer, for example, is a very popular subject for campaigns and fund drives. It affects millions of women every year, but luckily almost 90% of them now survive. With CFS we have no good data about mortality, but it is known that sometimes the complications of CFS (particularly opportunistic infections, some cancers, myocarditis and organ failure) can be fatal, even in young people. The suicide statistics are also very high, but you don't really read about this in the papers.
I've been sick since 2000, but it took until 2005 until I was able to obtain an official diagnosis. Unfortunately this is more like the norm when it comes to CFS. Sometimes it may take years or decades until the person is diagnosed and in the meantime a lot of harm can be caused by an incorrect diagnosis and incorrect treatments. Even with the correct diagnosis there is no guarantee that the person will receive any treatment - or the treatments may still be incorrect and even harmful. In many countries CFS is still treated by cognitive psychotherapy or gradual exercise programs, even though neither of these have been shown to be helpful and exercise can be very harmful for people with CFS.
I live in Finland and hardly anyone here has even heard of CFS, including the doctors. On the other hand there are many people who have received the diagnosis, but in fact have something completely different, such as hypoglycemia, depression or burnout. People have a hard time grasping that CFS is not a psychiatric illness, especially since the word "fatigue" in the Finnish name makes one think of sleepiness, not exhaustion. There are no books or pamphlets about CFS in Finnish and no websites either - until now. Today I released the first Finnish CFS site. You will not get much out of it if you don't know Finnish, but some people hopefully will.
If you want to spread CFS awareness, you can place the blue ribbon in your journal, blog or website and link it here or to a CFS website. You can also post on forums, message boards and email lists where the topic would be appropriate. I've created a thread on the Deviants forum again. Don't worry if the 12th of May has already passed. For us with CFS it's something we live with 365 days a year, not just one.
Some recent thumbnails from my watchlist and other people:
:thumb32722962: :thumb32797319:
:thumb32646331:
:thumb32869224:
Works in progress:
It's that time of the year again, May 12th and CFS Awareness Day. CFS refers to chronic fatigue syndrome, a severe and debilitating multi-system illness that often leads to permanent disability, sometimes also known as ME (for myalgic encephalomyelitis). It is one of the most common chronic illnesses, but also one of the least known. You can read more about it in Wikipedia, <a href="www.ahummingbirdsguide.com/wha…">Hummingbird's guide to M.E, <a href="diamondie.deviantart.com/journ…">my previous CFS awareness day journal or my <a href="www.angelfire.com/mn/Maija/cfs…">CFS page. I've also submitted an interview with a fellow CFS sufferer.
It's now been four years since I found out what had rendered my life into misery and just a little over four months since I got an official diagnosis to explain the cause behind the fatigue, brainfog, swollen lymph nodes, arrhythmias, neurally mediated hypotension, rashes, fever, aches, hair loss, endless infections and many other maladies. Still, it's a not fair fight to fight, since no one really knows what is causing this. We know that prednisone is currently helping me (but I will probably have to give it up soon), but it doesn't help everyone and we don't know why.
One of the reasons why CFS is still such a mystery is the lack of research funds. CFS is not a trendy subject of support, like some other illnesses. Most of those who're lucky enough to get the correct diagnosis are too sick to carry out awareness campaigns - and those who do are largely ignored by the media. Much more money has been spent in studies trying to prove that the the illness is psychiatric in origin than in studies exploring treatment options.
To see how the federal research money is divided with different illnesses and issues in the United States, take a look at <a href="www.nih.gov/news/fundingresear…">this page. Chronic fatigue syndrome gets 5-7 million dollars of research money a year. That may sound like a lot of money, doesn't it. However when it comes to scientific research it is just spare coins at the bottom of your pocket. Let's compare it to some other illnesses, using the 2006 estimate:
Breast cancer $697 million
Cystic fibrosis $89 million
Lupus $88 million
Multiple sclerosis $109 million
Schizophrenia $353 million
We can see that $7 million isn't really all that much. All of the illnesses I listed are very serious and debilitating, sometimes fatal, but so is CFS - and it's more prevalent than any of the conditions in this list. Breast cancer, for example, is a very popular subject for campaigns and fund drives. It affects millions of women every year, but luckily almost 90% of them now survive. With CFS we have no good data about mortality, but it is known that sometimes the complications of CFS (particularly opportunistic infections, some cancers, myocarditis and organ failure) can be fatal, even in young people. The suicide statistics are also very high, but you don't really read about this in the papers.
I've been sick since 2000, but it took until 2005 until I was able to obtain an official diagnosis. Unfortunately this is more like the norm when it comes to CFS. Sometimes it may take years or decades until the person is diagnosed and in the meantime a lot of harm can be caused by an incorrect diagnosis and incorrect treatments. Even with the correct diagnosis there is no guarantee that the person will receive any treatment - or the treatments may still be incorrect and even harmful. In many countries CFS is still treated by cognitive psychotherapy or gradual exercise programs, even though neither of these have been shown to be helpful and exercise can be very harmful for people with CFS.
I live in Finland and hardly anyone here has even heard of CFS, including the doctors. On the other hand there are many people who have received the diagnosis, but in fact have something completely different, such as hypoglycemia, depression or burnout. People have a hard time grasping that CFS is not a psychiatric illness, especially since the word "fatigue" in the Finnish name makes one think of sleepiness, not exhaustion. There are no books or pamphlets about CFS in Finnish and no websites either - until now. Today I released the first Finnish CFS site. You will not get much out of it if you don't know Finnish, but some people hopefully will.
If you want to spread CFS awareness, you can place the blue ribbon in your journal, blog or website and link it here or to a CFS website. You can also post on forums, message boards and email lists where the topic would be appropriate. I've created a thread on the Deviants forum again. Don't worry if the 12th of May has already passed. For us with CFS it's something we live with 365 days a year, not just one.
Some recent thumbnails from my watchlist and other people:
:thumb32722962: :thumb32797319::thumb32646331:
:thumb32869224:
Works in progress:
the next issue of TextCanvas- a non-fiction feature
- oldskool pixel art
- a grayscale ASCII picture
- a contests tutorial for Deviant-Contests
- my sociomedical essay series
- some haikus
- a poem
Works finished but not yet submitted- a Terragen picture
- some nifty textures (seamless, of course)
- a bunch of photos
- three ASCII logos
- two other ASCIIs
Works I wish to start in the near future- a digital painting
- macro photos
- an ASCII logo
Non-art TODO (inconclusive)- content for my Finnish CFS site
- backups
- some Wikipedia articles
- a list of all the articles I've had published (about 80?)
- medical links for my website
My preliminary schedule for the following months9th June psy party10th June street party10th June psy party16th June outdoor party17th June outdoor party18th June outdoor party24th June outdoor party
1st July forest party
7th-9th July Konemetsä forest festival
14th-15th July Koneisto electronic music festival
22nd July forest party
28th-30th July The Alternative Stork demoparty
3rd-6th August Assembly demoparty
6th August trance party
11th August medical tests
14th August outdoor party
18th August doctor appointment
I was interviewed by
, read the interview in <a href="radicalpuppy4.deviantart.com/j…">his journal.
wrote a poem dedicated to my ASCII art. It's quite good too!
I've set up a discussion thread for my sociomedical essay series on my forum, please read it and contribute if you have any opinions.
Admin of Deviant-Contests
Member of critiqueme fi
Supporting photo-class suture onewordatatime Lit-Source poeticks Reporters Activists ArtistsForCharity
- medical links for my website
- a list of all the articles I've had published (about 80?)
- some Wikipedia articles
- backups
- macro photos
- three ASCII logos
- a bunch of photos
- some nifty textures (seamless, of course)
- some haikus
- my sociomedical essay series
- a contests tutorial for Deviant-Contests
- a grayscale ASCII picture
- oldskool pixel art
- a non-fiction feature
A whirlwind year
It's been many years. And this year has been incredibly weird, and that doesn't even begin to cover it. I won't go into detail about the non-art stuff, but having your personality completely change in an instant, half a dozen times, has been great and fascinating but also disorienting and alienating. Last year I started recording hypnosis and meditation audios and more poetry for my YouTube channel, and those have received great feedback but alas, I got sicker and can't do that much any more. Earlier this year my beloved muse enticed me to start pencil drawing and I turned out to be pretty good at it (I thought I can't draw). I tried my hand at watercolors, which I always saw as an impossible medium, but turns out it's not. Alas, I again got sicker, as things tend to go, and have hardly been able to do any art for over six months. I've written over 250 poems this year, thanks to both my muse and the massive cognitive overhaul I've experienced. It feels like after 30+ years of
Alive-ish
It's been a while. A few years. Quite a few since I essentially stopped using DA because of the extremely abusive admins (my comment average is still 4.2 comments a day!). I'm not sure if anyone I know is still reading this. Lots of stuff has been happening, good and bad. The Netherlands is a wonderful place. When I got away from Finland life was great for a while. I could work 15-hour days despite the CFS/ME, thanks to LDN. I thought my nightmare was finally over. Until November 2011, when my pituitary was destroyed by sabotage. Hypopituitarism is one really shitty illness and has put me close to death more times than I can count. Also very
My novel is _finally_ out - and I got a grant, too
Prose | Poetry | ASCII art | Pixel art | Fractal art | Vector art | Digital paintings | Traditional art | Photography | Artisan crafts | Emoticons | Wallpapers | Contest entries | Seamless textures | Designs |Tutorials | DeviantART Related | The rest
Yep, my debut novel Marian ilmestyskirja (Maria's Book of Revelations) was supposed to come out in the spring, but due to various delays it has only been released now. It's in Finnish, but there is an info page in English, too, and a book trailer which is Finnish only, but very visual, so it's worth watching even if you don't know Finnish. It has gathered many positive, even glowing reviews and
Release of my novel etc
Prose | Poetry | ASCII art | Pixel art | Fractal art | Vector art | Digital paintings | Traditional art | Photography | Artisan crafts | Emoticons | Wallpapers | Contest entries | Seamless textures | Designs |Tutorials | DeviantART Related | The rest
So my first novel Marian ilmestyskirja will be coming out from Muruja next month. The taboo-breaking cripfic has already got about 10 reviews in book blogs, including a few absolutely glowing ones (I couldn't have come up with better ones if I tried!). I made an English info page about the book which includes a sample. Still hoping to find an international publisher for it! Disabled people deser
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I suffer from FMS, so I know where you are coming from. Hopefully the doctors can get you some help. Have you been tested for MS? It has a lot of the same symptoms.
But my diagnosis is not as severe as yours. How can I get the blue ribbon?
But my diagnosis is not as severe as yours. How can I get the blue ribbon?