CFS/ME awareness day 2008

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(First some personal ramblings - the CFS/ME journal begins after the blue ribbon.)

The new place is awesome, both the apartment and the district (I had lived all my life in the same area of Helsinki, so the change was, albeit a bit sad, also welcome). Loads of birds and flowers and squirrels. You can see some pictures here. The only sucky part for me is that my income went from about 800e a month to zero, but hopefully the book will fix some of that. The housewarming party combined with my book release party will be held on the 16th of May. If you want to attend, send a message and I'll link you to more info. It is such a shame that one of my best friends cannot attend. He is most likely having neurosurgery this week and I am quite worried. :-/

Oh, and yes, the book is out as of today. About 900 press releases have been sent. The end of the writing process was pretty horrible. I could hardly sleep due to stress, my stomach refused to tolerate any food, and my skin looked worse than it did when I was in my teens. For several weeks I was only eating frozen and canned food and had to neglect all household chores to conserve energy. While questioning my sanity I tried to focus on the fact that the book saved my life, and that it would probably save someone else's, too. I would like to say "never again", but considering that I have written six books so far and already have plans for four more (one fiction, three non-fiction) I wouldn't believe it for one second.

I could have never believed things could be so well, considering how hopeless they seemed less than 1.5 years ago (e.g. I had almost completely lost the ability to walk and could hardly do anything at all in general). Spring has never felt this wonderful before. A new place with a balcony and of course a new macro lens. I feel like I'm overwhelmed by good things. I'm enthralled by the great food I'm whipping up and the beautiful flowers in our place - we've had clivia, gardenia, gerbera and fuchsia flowering, and of course the cherry blossoms outside. I brewed some damn awesome mead for the mayday (yes, I'm a teetotaller, but in Finland mead is actually neither "honey" nor "wine" - it is made with citrus fruit and brown sugar and contains so little alcohol it is even given to little kids).

First some updates from my previous years' interviewees.

Jat: He's doing quite fine. He's been on LDN for a year and he also moved on his own last summer. He has found many new friends and I think he's finally able to catch up on some of his missed youth.

Riikka: There are good news and bad news. Riikka has got on disability - obviously not for CFS/ME as that would be impossible, but for another condition she has - and almost has enough money to live on now. She has managed to keep her laptop, and in fact they are even giving her a new one (making it possible to install a new version of the text-to-speech software, which is much less buggy). She also has an electronic wheelchair now, though she would need to move house to be able to use it independently, as she lives on top of a flight of chairs and suffers from vertigo, so she could accidentally fall down the stairs. Unfortunately, her condition is still deteriorating and the abuse from the doctors just gets worse. More about this later. She has had a prescription for LDN since last summer, but she's afraid to start it, because in the past immunostimulants have made her worse, despite my reassuration that thousands of people with very severe autoimmune diseases have taken LDN with no ill effects.

This year, I want to bring up the image of CFS/ME. This might not seem like the most relevant issue with having a chronic disability, but unfortunately for us, the image of CFS/ME haunts us on regular basis. For us it basically means two things: no support (financial or otherwise, including research money) and endless abuse. For many of us it has meant complete abandonment from family and friends. Many people with CFS/ME end up taking their lives, not necessarily because of thesymptom alone, but because they get no treatment and because they become the pariah of the society, those that people spit on and laugh at. My book is dedicated to Kathleen Walker, a woman I knew who killed herself because she was in unrelenting pain that wasn't properly treated.

Riikka recently got an appointment at the pain clinic, something she has been waiting for a long time (she gets nothing for her pain). She was devastated when it turned out they would not be treating her, not until she sees a psychiatrist and attends a "psychosocial" group. Nevermind that she has done 10 years of psychotherapy, which did nothing to help her, nevermind that she is too ill to attend any groups. She has been given appointments against her will and not given a chance to cancel them. They have even called her home numerous times even though she has told them not to. They have told her not to pay any attention to the findings of her muscle biopsies (myopathy and other things), because according to them it's only her attitude that needs adjusting, that if she was more positive she'd get out of the wheelchair. I think these people are terrorists, not doctors. No wonder the modern equivalent of the Hippocratic oath is voluntary in Finland. I am trying to find out if there is any legal action that can be taken against those monsters (for e.g. stalking or threats - unfortunately the mere abuse of disabled people is completely legal, as well as condoned by the society).

The situation of CFS/ME just defies all logic. If you were to tell people here that there is a severe neurological illness very similar to multiple sclerosis, but much more common, which has an infectious origin and is sometimes even fatal, but doctors refuse to diagnose it, let alone treat it, would they believe it? And if you added that the most common recommendation for treating this illness is very dangerous and can have deadly results? The gut reaction is that surely this cannot happen. I don't believe in the concept of Hell, or any sort of afterlife. But I know that if there is a hell, it is having severe CFS/ME and living in a place like Finland. Not that it is all that much better elsewhere.

I know several people with CFS/ME who have severe PTSD thanks to the way they have been treated by doctors. Some of them have been laughed at and sent home at an ER when they've had a medical emergency (if you can't recognize an adrenal crisis, you have no business in emergency medicine!). These people have severe medical issues and it is sad to think that some will most likely die because sooner or later, they just stop seeing doctors when they cannot bear any more abuse. And then they will succumb to something that could have easily been treated (of course, there is no guarantee that they would get treated even if they sought help).

You surely think I am exaggerating, but I am not. You wouldn't believe most of the horror stories and I wouldn't either, if they hadn't happened to me or people I personally know. Would you believe that a nurse accidentally sprayed someone else's blood all over my friend and acted all nonchalant about it as nothing had happened - at an infection clinic which mostly treats HIV positive patients? Or that people with outwards visible neurologic symptoms that are impossible to fake or to "produce" are diagnosed as being psychotic (has happened to two or three people I know)? One friend of mine who has been receiving IVIG (she has CFS/ME triggered by massive mold exposure and IgG subclass deficiencies) was recently told  (by infection specialists!) that her symptoms will go away if she goes to the gym, buys supportive insoles and has psychotherapy. The IVIG was discontinued. Yes, obviously the fucking insoles will be very effective for severe neurological symptoms.

I wish I could come to some sort of a strikingly simple conclusion after all this rambling - I don't like pointless ranting. I wish there was some kind of a lesson to this story. Actually I wish none of it was true, but because it is, I feel it is my responsibility to tell you. I guess the moral of it all is that fight injustice, abuse and moral dishonesty whenever you can, even if it feels like you're fighting windmills (*cough* DA admins and their endless lies and manipulation *cough*).

:bulletblue: CFS awareness day journal 2005
:bulletblue: CFS awareness day journal 2006
:bulletblue: CFS awareness day journal 2007

Current works

Works in progress
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    • some fabric designs
      • editing my fourth novel manuscript
        • planning the outline of my fifth novel
          • two short stories
            • editing some videos
              • my sociomedical essay series
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aneesah's avatar
Your home looks freaking awesome. Like they belong in a design magazine, that kind of awesome. :heart: I think the plants add so much life, they're really lovely.

As for those horror stories.. oh my. Spraying blood all over a person?! WTH is wrong with the world? I'm so sorry to hear about those who have taken their own lives... when they really needn't have. :sniff: I wish I could do more, but at least now I know. Knowledge is power, after all.
diamondie's avatar
Thanks. I have actually worked for a decoration magazine. I wouldn't mind doing more of it, but the attitude is so far from my world, buying loads of brand new stuff and throwing everything away when it gets out of fashion. When my mother-in-law's boss moved houses, she threw away _everything_ because the colors didn't fit the new place! She (the m-i-l) managed to salvage some expensive Finnish design glassware for us - the lady was going to throw it away too (it would have sold very well in an online auction). Most of our furniture is ages-old, like the living room table was purchased in an auction by my father's first wife, in the 1970s. My desk is from the Salvation Army, our armchair was rescued by the m-i-l from ending up in the trash etc. Our bed is probably the only piece of furniture which isn't second-hand.

And most articles in decoration magazines are just product placement anyway. Some Finnish ones have had articles like "Coolest forks of the season". Like WTF? That's quite far from journalism. If they were a bit more than that I wouldn't mind working for them even regularly.

Knowledge is power and you never know when you can put the knowledge to use.
It's shocking and sickening to hear how terribly people are treated by doctors. I am (almost) speechless.
diamondie's avatar
Oh, you're here too! Too bad your gallery is empty, I think the people here would appreciate your illustrations.

And yes, it is sickening. It is like the ultimate betrayal, they are the people who are supposed to help you and those that people tend to trust the most. And because of this trust many people tend to think "Surely this story isn't true, it's just a twisted and one-sided account from someone who's probably exaggerating, a doctor would never treat their patients like that."

I am soon going to try to reach the media with an article written about one of the people mentioned in this journal entry (twice), but I am afraid that it won't be accepted into any magazine, because the concept is just "wrong" to many people.
mom-the-bomb's avatar
Congrats on the move and the book! :clap: Hope all goes well in your new home. :hug:
diamondie's avatar
Thanks! Everything is going so well now that I can't help but think something has to go wrong. Heh. I'm not a pessimist, just used to things not being so great. :-P
mom-the-bomb's avatar
:hug: So glad you are having a great time of it. Keep thinking positive. Life has its ups and downs. Enjoy the ups while you have them. :D
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