#stabilising ME/CFS

[helenwhiteart-blog]

Just because you could doesn't mean you should

I think this is one of the biggest stumbling blocks of mild to moderate ME/CFS…just because you can do something doesn’t mean you should (and by the way, if you have severe ME/CFS the chances are you couldn’t even if you wanted to, which is the only reason I leave it out). Really, I suspect that this mindset of always doing as much as we are capable of is one of the commonest things to trip-up,…

[myalgicencephalomyelitiscfstom]

An informative article on ME and post-exertional malaise [PEM] by the Norwegian science news site forskning.no has now been translated into English

Starts off as a case history but includes some comments from experts. —- What's extra frustrating is that it doesn't matter if she is doing enjoyable things or chores.

“People wonder why you can’t focus on things you like, so they can give you a surplus of energy. But the consequences are just as great when I visit a friend as when I go to a doctor's appointment,” she says. —-

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Extract:

Pacing often involves measures to conserve energy, such as using assistive devices and avoiding unnecessary activity. It is also important to spread activities throughout the day with enough breaks in between.

'Any measure that can prevent a worsening of symptoms will not only stabilise the condition but also reduce discomfort and improve the patient's quality of life,' according to the guidelines from the Norwegian Directorate of Health.

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“A characteristic feature of PEM is that the reaction to activity is often delayed. It can come several hours after the activity itself. Often, the reaction does not fully set in until the next day. Additionally, the amount of energy you have at your disposal can vary from day to day.”

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“Cheering doesn't help Sommerfelt believes part of the problem is that PEM is often completely invisible to others.

“During an activity, it's not possible for others to notice that someone has gone over their limit," he says.

And when the crash comes, perhaps the next day, no one notices that the person is in bed and feeling terribly unwell.

Many ME/CFS patients have expressed that they wish other people could understand how profoundly ill they become. Cotton would like people to understand that cheering them on doesn't help. We are so used to thinking that it is healthy and positive to push ourselves. We cheer and motivate each other to keep going. But for people with PEM, the effect can be the exact opposite, Cotton believes.

“Pushing, persuading, and cheering – come on, you can do this, just a little more – is one of the most dangerous things you can do. By exceeding our tolerance limit over time, we risk long-term deterioration,” she says.

“Instead, we need those around us to encourage us to rest and take breaks. We need to hear them say: 'Sit down, put on sunglasses, go and rest for fifteen minutes!' And then you can come back so we can be together again afterwards," she says.”

[phleb0tomist]

hi! i have me/cfs too! i was also diagnosed as a young teenager after years of being told in various ways that i was just lazy or troubled. i love your blog and it's comforting to know there are others like me out there. also you are beautiful!

thanks for saying hello ❤️❤️❤️ i’m sorry that happened to you. istg everyone who gets ME/CFS as a kid goes through the same neglect. i hope you’re stabilised and being accommodated now.

we are each other’s community!! i have lots of love for everyone out there with these shared experiences

[kimberlychapman]

OMG I'm a writer with Long Covid/ME/CFS who now experiences severe word loss at times, or the wrong word.

A few weeks ago I wanted my partner to pass me the keyboard and the word that came to mind instead was "peanut butter". That's not even a common staple in our house.

Today I nearly fell in the shower (another fun part of this condition!) and when I stabilised myself I thought, "Oh, I should tell him I nearly fell in the printer."

I don't think that site would help me when I have the absolutely wrong word but it hopefully will help for things like when I can't remember "the conservatory" so I call it "the glassy room" or "the thing that cooks with the door" and I mean "the oven".

Definitely sharing to save another writer's life, and the lives of so many of us suffering from LC/ME/CFS.

Also, mask up, you don't want this.

some people think writers are so eloquent and good with words, but the reality is that we can sit there with our fingers on the keyboard going, “what’s the word for non-sunlight lighting? Like, fake lighting?” and for ten minutes, all our brain will supply is “unofficial”, and we know that’s not the right word, but it’s the only word we can come up with…until finally it’s like our face got smashed into a brick wall and we remember the word we want is “artificial”.

[fellhellion]

Me: CF!Dimitri is an incredibly interesting character arc for him and yet the details we have are so bare boned it’s nearly impossible to truly infer why he’s so different, but has critical differences like being resigned to dedue’s sacrifice 

Also me: CF!Dimitri still does the same thing his other counterparts do; namely sacrifice the idea of living for himself, except this time in the completely opposite way. Duty is what dimitri uses to reasonably stabilise himself from spiralling and in other routes, when that structure is gone, he takes that responsibility upon himself in a different way: dehumanisation in order to “defeat another monster”. Here though, he ends up taking up a similar mantle to Edelgard in his desperation, namely that of sacrifice being taken in his name and him being resigned to make that sacrifice worth it.

[super-ro]

Today I weighed myself for the first time in a long time. It was not good news. But it wasn't a surprise.

I started this blog just before I became ill with ME/CFS. I didn't get my diagnosis until last year. Seven years later.

For the first two years I was heavily fat shamed by my previously good doctor. Because I was putting on weigh. Because I couldn't exercise. Although I continued to try. I was doing couch to 5k and after every run I was.completely destroyed.

My doctor insisted that couldn't be the case, as exercise gave you energy. As though no one had ever got tired after a run before.

But I was more than tired. I would come come from work and go straight to bed and fall asleep. I'd never been able to sleep in the day before, but now I did most days. I had sleep paralysis because my body didn't understand what was happening.

I was Ill ALL the TIME. But I (someone who simply never got sick - actually a symptom of people who go on to develop CFS) didn't know how to describe what was wrong. So my boss thought I was faking and told me to 'manage my sickness'. It destroyed me.

I'm having to forcibly stop myself before I give My History Of Ableism and CFS again. I feel like I've explained it too many times (although in truth people tend to get bored and interrupt me before I finish anyway).

Point is. I was chronically ill. But the only consistent advice I had was to exercise. So any moment I felt well enough, I did. It was the worst possible thing for someone with my condition to do. The only time I've had a gym membership was when I was chronically ill. It's crazy. And yet I loved that gym. I miss it. It was only last year I accepted that I can't go back.

Then vast majority of posts on this blog were made while I was chronically ill. I was still trying to become Super Ro when in fact for many years now Normal Ro has been a pipe dream.

But the last two years have been particularly bad on my health. There have been protracted periods where I could barely move for weeks and much of the food I ate was. Not Good. It was the kind of food a sick person buys when she hasn't the brain to think about anything eat all and barely made it to the shop.

And an important aspect of ny treatment programme has been learning not to force my body. In order to stabilise my condition, I've actually had to exercise less.

But I do need to lose weight.

I'm not well at all, but I think I'm relatively stable. I want to start building tolerance, which means very VERY slowly increasing my exercise.

The trouble is that even a small increase can trigger a relapse. And I'm currently working full time, which is already too much.

Still.

The first step is eating more healthy. This is difficult, as I'm not well enough to cook, but I'm eating more salads and ready meals. (Thos time last year things were so bad most of my meals were Pot Noodles. Healthy ready meals are progress.) Also my work has a plethora of free crisps and chocolate and cheese. It's Very Hard to resist, but I'm trying.

I'm also cutting down on crisps and cheese at home, too. But that's hard.

I want to work on the exercise, but I have to be careful. I have Pokemon Go, but I rarely manage as much as 10K walked a week. I'm increasing that, but very carefully.

I've decided to have a try sit-ups. Small ones. 3 a day. In bed. Before I get upm

My thinking is that one of my biggest barriers to doing stuff is actually how hard it is to sit up. Which is weird, given that I always used to have a strong core. I used to do 30 sit-ups a day.

I'm fairly sure I could still do 10 proper ones of I tried, but it would wreck me.

So. Three sit-ups a day. Starting out with the support on a mattress. In the only place I can be sure to have enough space.

So. This is me. First update in many years. Saying I am now 13 stone 4 pounds (bear in mind, I am 5ft 3). I want to lose at least 4 stone (I mean, BMI is gross, but, 9 stone was on the upper edge of what's recommended for someone of my height.)

I'm not measuring myself right now. My clothes are telling me it's not good. The weight is over half a stone more than the last time I weighed myself. But I needed to do it so I can know when I do lose weight.

Wish me luck.

[keziacole]

tagged by @bumbleblossoms​ - thank you! 

Tagged Rules: Answer these 92 statements and tag 20 people.

THE LAST:

1. Drink: Coffeeeeeee

2. Phone call: My partner, just as they left the dentist. :( 3. Text message: Motherbot 2.0 4. Song you listened to: Been Caught Stealing – Jane’s Addiction 5. Time you cried: Uh… some point in the last couple months, I guess? Not sure when, but it was at something related to dogs. Honestly, I did most of my crying last year, during The Year From Hell, and I’m still a bit dried out.

6-92 under the cut. :)

HAVE YOU:

6. Dated someone twice: As in getting back together again? Nooooo. 7. Kissed someone and regretted it: …yup. Often. Sometimes not until a long while later, though!   8. Been cheated on: Not to my knowledge. 9. Lost someone special: Yep. 10. Been depressed:  Eh, I’ve never been diagnosed with depression, so no, I don’t think so. Situationally really fucked off with things? Yes. 11. Gotten drunk and thrown up: Once. Story time, everyone! 

So, I generally have a really good alcohol tolerance and a cast iron stomach (not necessarily for good reasons, but hey), but I did once go to a party that ended very badly. I was about 17, had recently been diagnosed with CFS, and was on a heavy painkiller regimen. I drank when I shouldn’t really have done so, because bullshit and All the Emotional Drama, BUT… I did not know that my friend’s asshole brother had spiked my drink. (He was a peach. Gave his 14 year old brother acid once just to point and laugh at the result. Fuckin’ hated that guy.)

At some point in the evening – somewhere after the sham marriages, interpretative dance, and someone putting someone else through a table, because teen parties – I realised I was wayyy more wasted than I should have been, despite the painkillers, and I ended up spending all night hallucinating and throwing up, plus feeling horrific for about three days afterwards. 

Moral of the story: if you spike people’s drinks, you are a gigantic bag of toe lint and should suffer mosquito bites on your asshole for a thousand years. The end.

LIST 3 FAVORITE COLORS: 12. Purple 13. Red 14. Blue

IN THE LAST YEAR HAVE YOU:

15. Made new friends: Not yet. Befriend me, tumblr, you’re my only hope.  16. Fallen out of love: No, though I have watched my relationship with at least one family member crumble into dust. Does that count?  17. Laughed until you cried: At least four times a week. Which is one big reason why I’m marrying that motherfucker.  18. Found out someone was talking about you: Yes. See 16. 19. Met someone who changed you: Not yet.  20. Found out who your friends are: Yes, sadly. It sucks when you realise how effectively someone has manipulated the people around you.  21. Kissed someone on your Facebook list: Nah, I don’t really do the FB thing. I should, I guess?

GENERAL:

22. How many of your Facebook friends do you know in real life: See above. I kind of have a profile, but I only use it to message people I’m related to who are freaking obsessed with Facebook and won’t communicate any other way. Ugh. So… most of them? I guess?   23. Do you have any pets: One dog – Hector, a grumpy and elderly terrier - down from two resident mutts and a boatload of fosters. Older dog died last year, and I’m not in a position to foster right now, which sucks, because I miss having a house full of beasties, not to mention making a difference. 24. Do you want to change your name: Already have done/am doing! I have no real interest in keeping up with more than 80% of the people I’m related to, and I never liked my birth name, plus this is easier to spell and dictate to people, and isn’t known by the abusive assholes in my life. So, yay! 25. What did you do for your last birthday: Ordered pizza and watched favourite movies with my partner. We did The Blues Brothers and shit-talked the progression of police militarisation in the US over the past 30 years, and it was incredibly fun, despite the fact we’re 3000 miles apart right now. Also, they remembered my birthday, which is more than can be said for over two-thirds of the people I’m related to.  26. What time did you wake up: 9am, but in my defence I was up until 3 last night. 

27. What were you doing at midnight last night: Talking shit with my partner, knitting an afghan, and watching foster kitten cams and reviews of awful movies together, because these are good ways to help someone who has a dental appointment in the morning try to stay calm. 28. Name something you can’t wait for: Getting my current backlog of work finished. Sooo clooose…. Promised myself a movie and gaming binge when I’m done. 29. When was the last time you saw your mom: Last week. 30. What is one thing you wish you could change in your life: Either having enough money to fix all my problems (yes, in this case, money most certainly can do that), or just being on the same continent as my partner, so we didn’t have this immigration thing to worry about. Not having a debilitating illness that fucks everything up would be pretty awesome, too.  31. What are you listening right now: Freddie King 32. Have you ever talked to a person named Tom: Yep, many Toms. All the Toms. Well, like, five plus. 33. Something that is getting on your nerves: Not knowing whether or not the electrician is going to show up tomorrow, which will mean I need to move the paintings and quilt top I currently have all over the sitting room floor. I’m not done piecing that thing yet. Grr. 34. Most visited website: Lots. Mostly Google, Politico, Reuters etc., but I’m living on eBay right now because I’m trying to sell off a bunch of DVDs, books, and vintage glassware. …Does anyone want to buy some vintage/antique glassware? 35. Mole/s: Yep. I had one removed from my back once. Turned out to be benign (phew!) but I got an interesting scar out of it. 36. Mark/s: I still have a faint surgery scar on my elbow, but it doesn’t look as Frankenstein-y now. Most of my scars have faded, but I still have some weird idiosyncrasies from things that have been broken or busted up. 37. Childhood dream: Writing was always my main thing, but also acting/directing. Illness took that away. Other than that, I always wanted to live somewhere rural with lots of animals, and be happy.  39. Long or short hair: Long. Lots. It’s huge. Send help. I like both on other people.  40. Do you have a crush on someone: Not right now. Give me ten minutes and a new Fet profile to stalk and I’ll get back to you... 41. What do you like about yourself: I’m a creative dynamo and I don’t stop until I fall down. I’m also proud of the fact that I’m a pretty compassionate and patient person, and I like the fact I’m slow to really anger. Someone told me recently I’m a very stabilising influence, and that was nice to hear. I feel like life can use more of that.  42. Piercings: Ears (two left, three right), nose (left). More on the way, maybe, when I can justify it.  43. Blood type: ???? I should check. I know the NHS won’t let me donate blood because of my medical condition, which blows.  44. Nickname: Zia. Some people call me Kez. One person is allowed to call me Admiral Fuckface McAsshole III.  45. Relationship status: Open relationship with my primary partner, technically speaking. Poly is good, but my planner is too cluttered for anarchy.  46. Zodiac: Aries w/ Aquarius moon, Virgo ascendant. I also have Mars and Venus in Taurus, so mooooo. And yes, I did used to do natal charts for beer money. I read palms, too. I’d still do it if asked nicely.  47. Pronouns: They/She. I don’t mind feminine pronouns, because I’m incredibly cis-passing and most people will assume “she”, plus I can live with being labelled female if it’s a binary choice, but I see myself more as a person than a gender, so I love that neutral pronouns are being used so much more now.

FWIW, I considered whether or not I was trans for a hot minute when I was a younger teen, because I used to love passing as a boy when I was a kid (until puberty at nine. Boo.), but for me it was the difference in how I was treated when I passed as male that mattered. It was the difference between “Oh, isn’t he confident and intelligent?” and “Hello, sweetie, don’t you look pretty today?” that affected me, not a real sense of dysphoria, so I decided the problem wasn’t really in how I presented, but in society itself. I have yet to really find a satisfying way of rectifying that, but I think we’re all making progress as a society. It’s very slow progress, sadly.   

48. Favorite TV Show: I don’t watch that many series, but Star Trek (especially TOS and DS9), X-Files (S1/S2), Game of Thrones, old mystery adaptations (all the Agatha Christie ever), Stranger Things, Better Call Saul, Breaking Bad… can’t think of anything else right now, but there are some. 49. Tattoos: One black and grey dotwork spiral goddess on my arm, next one coming soon (watch this space, now I’ve found an artist!) 50. Right or left hand: Ambidextrous. Yes, I can write with both hands. Sometimes, I switch in the middle of the sentence. No, it doesn’t look the same. I can also operate light switches with my toes from a standing position.  51. Surgery: I fucked up my ulnar nerve a couple of years ago by blacking out and falling on some stairs. It was melodramatic, and I lost the use of my left hand. Had surgery to correct it. I was awake but a bit sedated, and spent most of the time talking to the cute anaesthetist about chastity cages. Because... sedated? Yes. That’s my story and I’m sticking to it. Sadly, he did not call, though I’m pretty sure he did a lot of googling when he got home that night.  52. Hair dyed in different color: Always, since I discovered Olaplex, which means I can actually bleach my hair without it completely frying. Most recently, I’ve had a mermaid fantasy in turquoise, green, and purple, but it’s faded a lot. Not sure what I’ll do next. Maybe orange, or neon yellow again. 53. Sport: I can’t do much without turning blue and blacking out, but I’ve always enjoyed tennis, badminton, swimming, and equestrian stuff. Is hiking a sport? Hiking’s fun.  54. Do you use sarcasm a lot: Um... 

55. Vacation: Last one was to see my partner; next one will be too. So, the woods of NEPA. Hiking out with some granola and my favourite human, and spending a few days playing with shelter pitbulls. <3 Otherwise, I’ve never really been on holiday. I went on a school trip to Germany once where I nearly got arrested and, when I was seven, I went to Malta and there was a hurricane. I remember wedging wet towels into the window frames and hoping we didn’t die, because we were on the twelfth floor and there was nowhere else to go. 

I did go to Norfolk with my mother for four days after her breast cancer diagnosis. Macmillan, a cancer charity that is very worthy of support, granted her a short break. There was a lot of playing dominos and trying to convince her she wasn’t actively dying at that precise moment.

56. Pair of trainers: Converse. All the ratty old Converse low tops in the world. 

MORE GENERAL:

57. Eating: I have the house to myself right now. It’s awesome. I’m celebrating with homemade shiitake tofu stir fry, wontons, vegetable udon… and doughnuts. Not in the same bowl, though. 58. Drinking: Rum. 

59. I’m about to: Finish a short story, close out an editing project, format a print galley (again. Goddamnit, Adobe.), and try to finalise the running order of a poetry collection. Maybe send some emails, maybe eat the rest of those wontons.   61. Waiting for: The dizziness to go away, usually. 62. Want: The time, space, peace and quiet to focus on my work, and my health to cooperate long enough for that to happen. 63. Get married: As soon as possible, which basically means when we can afford it, because immigration, legal wrangling, and a ton of other bullshit. It’s a headache, but if there weren’t so many technical hurdles it would already be done.  64. Career: I write and make stuff. I’m doing it under a new name now, which is daunting, because it means starting over again, but I’ve spent the past few years doing a lot of genre fiction and being told my original work is “too original”… but I’m ready to say “fuck you” to that and see what I can carve out for myself. Come on, internet: don’t prove me wrong, ‘k? 65. Hugs or kisses: Ooh, tough. Yes? I guess hugs if I have to pick.   66. Lips or eyes: Eyes. 67. Shorter or taller: I honestly don’t care, though I do very much enjoy short subs. Pocket rockets are adorable. 68. Older or younger: It really doesn’t matter. 70. Nice arms or nice stomach: Arms, I guess? Doesn’t really matter. It’s all pretty to look at, but who really cares? Arms are best for hugs. 71. Sensitive or loud: Sensitive. I don’t like too loud. 72. Hook up or relationship: Define the terms, yo. I’d say relationship, but the definition of “relationship” can be open to numerous things. 73. Troublemaker or hesitant: Um… possibly a bit of both, but more hesitant, probably.

HAVE YOU EVER:

74. Kissed a stranger: No. 75. Drank hard liquor: Yup.

76. Lost glasses/contact lenses: I once dropped a contact lens down the back of a gas fire and spent three hours getting it out with Vaseline on a paperclip. My vision is awful and I wore very expensive gas permeable lenses at the time. 77. Turned someone down: Yup. 78. Sex on the first date: Nothing wrong with it (and nothing wrong with sex being the date), but it’s not for me. 79. Broken someone’s heart: So they said. 80. Had your heart broken: Yes, but not how you might assume. 81. Been arrested: Nope. 82. Cried when someone died: Yep. 83. Fallen for a friend: A couple of times, with varying degrees of success.

DO YOU BELIEVE IN:

84. Yourself: I try to, because few other people often do. (*the world’s tiniest violin plays*) 85. Miracles: Yes, sometimes in the form of coincidences, surprises, or the results of hard work. I believe in inverse miracles, too, when things go catastrophically wrong for no apparent reason. Or, as we call it at my house, Tuesday. 86. Love at first sight: Yes, in a way. Potential for love at first sight, I guess? I’ve usually found I know the moment I meet someone whether that’s a thing that’s going to happen or not. 87. Santa Claus: YES, DAMN IT. Okay, maybe not a literal dude in a red suit, but as a personification of the generous spirit of Non-Denominational-Winter-Solstice-and-Festival-of-Lights, he works. (I’m an eclectic neo-pagan/hedgewitch, but my most loved time of year is the whole October-February period, so I start celebrating Yule/Christmas around December 1st and don’t stop until Twelfth Night. I will take ALL of your symbolism, ALL your traditions, and – most importantly – ALL your festive foods and embrace them. In my belly. Thank you.)

88. Kiss on the first date: Probably. Unless it’s a baaaaad first date. 89. Angels: Again, not so much the literal sense, but it’d be nice to think there are positive presences looking out for us. I’d be very concerned about the serpent-like pillars of fire, though.  

OTHER:

90. Current best friends name: Aside from my dog, that’s my partner but they don’t like their details shared, so SHHHH IT’S A SECRET. 91. Eye color: grey-blue-thing 92. Favorite movie: You can’t just ask a person that at the end of the thing like it’s a simple question…! So. Many. Movies. Depends on the genre. The Blues Brothers, Priscilla: Queen of the Desert, Gattaca, Silence of the Lambs, Re-Animator, Die Hard, Stand By Me, Sleepaway Camp, Alien, Lady in a Cage, Rosencrantz & Guildenstern Are Dead, TRHPS, The Great Escape… those are movies I can watch a billion times (and have done). Honorable mentions, depending on my mood, go to things like Basket Case, Caramel, An American Werewolf in London, Exterminating Angel, Secretary, Gran Torino… I could have done 92 questions just on the most popularist movies I like!

tagging: I’ve been away for a few days and I don’t wanna tag people who’ve already done it, so if you’re reading this and want to do it, consider yourself tagged! <3

[helenwhiteart-blog]

Pacing 101

I really want to try and talk through some of the first stages of learning to pace because it’s not as simple as just saying “go off and do it” (as you possibly know and I am surely learning). As per my last post, I’m using two powerful aids to help me master this: the book  Classic Pacing for a Better Life with ME – Ingebjørg Midsem Dahl and the Visible app, both of which I highly recommend as…

[utopiedujour]

Fukushima : où l’on tente encore de nous faire croire que le nucléaire pourrait être moteur de la redynamisation rurale – Une catastrophe sans fin, par Cécile Asanuma-Brice *

Billet invité.

Voici maintenant plus d’un siècle que nos pays modernisés se sont tournés vers la planification afin de penser un meilleur équilibre économique et démographique de leur territoire. Si tel fut le discours mis en avant pour en vanter les mérites, le résultat n’en reste pas moins décevant, si ce n’est nul. Le rééquilibrage régional n’a que relativement fonctionné, bien qu’artificiellement réactivé par quelques espoirs toujours déçus, et les campagnes ont continué à se vider de leurs activités humaines au profit des villes dont l’étalement s’épanche telle une tâche d’huile alimentée par les fuites du moteur de la société de consommation. Il en est de même au Japon, où les campagnes meurent lentement, où les villages abandonnés laissent leurs belles demeures de bois pourrir au gré des vents, au fil du temps. Fukushima n’avait pas échappé à ce rouleau compresseur d’un système économique sans indulgence, devenu l’ultime but de la production humaine alors qu’il aurait du en être son serein soutien.

Ca n’est donc pas sans surprise que nous observons l’ardeur des organisations internationales, ainsi que celle du gouvernement japonais à vouloir à tout prix faire rentrer dans leur campagne en désuétude les populations réfugiées suite à l’accident nucléaire du 11 mars 2011. Plus de 6 années après l’explosion de la centrale, présents plus que jamais sur ce territoire rural perdu au milieu de nulle part, les membres de l’AIEA, du CEPN, de l’IRSN et autres UNSCEAR, se lancent dans « l’humanitaire » à la défense des paysans en péril, nous ventant les bienfaits de la résilience, les nuisances du refuge, les méfaits sanitaires du stress face au désastre, tout en affichant une attitude agnostique envers les résultats épidémiologiques qui voient pourtant croître à plus de 184 le nombre d’enfants de moins de 18 ans ayant du être opérés d’un cancer de la thyroïde sur un échantillon limité de 270 500 personnes. Ce point, qu’il est devenu tabou d’évoquer dans les cercles scientifiques, est néanmoins fondamental, en ce qu’il est celui qui déterminera la nécessité des politiques de protection à mettre en œuvre, ou non, en cas d’accident. Si l’explosion d’une centrale nucléaire et la dispersion des isotopes qu’elle contient à travers monts et vallées n’est pas dangereuse pour la santé humaine et pour la vie dans son ensemble, alors pourquoi partir en cas d’explosion, pourquoi évacuer les populations dont on broie la vie communautaire, mais aussi à quoi bon dépenser tant d’argent à décontaminer, pourquoi avoir créer des centres de recherches spécifiques sur la radio-protection puisqu’il serait inutile de s’en protéger, et finalement pourquoi se servir de ces mêmes isotopes inoffensifs pour réaliser l’arme de destruction ultime que l’on brandit à la face du monde à chaque tension diplomatique ? Bref, nous devons rétablir de la cohérence dans nos discours et nos analyses. Si les habitants de Fukushima se sont réfugiés, ou ont été évacués (même si l’évacuation organisée par l’administration a été bien tardive) c’est qu’il y a un danger, réel, dont nous avons tous connaissance : scientifiques, militaires et citoyens (cette dernière catégorie comprenant les deux précédentes).

Ce danger serait néanmoins variable, bien que jamais nul, en fonction de la dose reçue. En outre, alors que les populations de toutes parts réclament une plus grande sécurité vis à vis du nucléaire, les seuils des doses dites admissibles par les autorités gestionnaires sont relevés, en toute discrétion, à chaque accident.

La réouverture progressive de la zone d’évacuation

Carte : Préfecture de Fukushima

Les seuils – ou- « Ai-je droit de mettre en jeu l’intégralité des intérêts des autres ? »

Afin de permettre une marge d’acceptabilité toujours plus grande du risque, les institutions en charge de la gestion du nucléaire et de sa production ont élaboré un système de seuils dits « acceptables » pour l’être humain. Le tout est de réussir à appréhender, ainsi qu’à quantifier ce qui est de l’ordre de l’acceptable prenant en considération les aspects économiques, sociaux et sanitaires générés par une catastrophe nucléaire. On aurait pu croire que l’aspect sanitaire eut été déterminant, et que l’être humain accorderait plus d’attention, plus d’intérêt, à ce qui pourrait mettre sa santé en péril, mais à notre grande surprise, il n’en est rien. Ainsi, bien que les dernières études épidémiologiques telles Inworks (réalisée sur une cohorte de plus de 308 000 travailleurs de centrale nucléaire), ou encore le modèle LNT (Linear No-Threshold model, 2007, Université d’Ottawa) nous prouvent l’augmentation du risque de développement de maladies proportionnellement au niveau d’exposition aux irradiations, balayant de fait la pertinence d’une limite sécuritaire, des seuils sont encore fixés afin de permettre l’existence de l’exploitation de centrales nucléaires et de leurs désagréments: fuites et autres accidents potentiels augmentant le niveau de radioactivité environnant. C’est ainsi que l’on a vu le seuil de protection internationalement fixé à 1 msv (pour la population hors travailleurs des centrales), passé, sans bruit, à 20 msv dans les directives de l’union européenne en 2014, 3 ans après Fukushima. Il est par ailleurs indiqué dans ce même texte qu’un taux annuel allant jusqu’à 100 msv est envisageable dans des conditions d’urgence, justifiant un niveau de 20 msv/an en temps normal, en pleine contradiction avec les études menées sur la question.

Ce point est fondamental, en ce qu’il permet, entre autre, l’autorisation internationale de la réouverture d’une partie de la zone d’évacuation autour de la centrale de Fukushima à la fin du mois de mars 2017. Le but fondamental de cette démarche, est d’élaborer un système de cogestion citoyenne des conséquences d’un accident, afin de prouver que l’on est capable de surmonter une catastrophe nucléaire en sachant gérer la radioactivité présente, mais également de diminuer les coûts auparavant pris en charge par les entreprises gestionnaires des centrales. Pour autant, l’imposition d’une planification politique au retour à vivre dans les zones contaminées de Fukushima, n’a pas le succès escompté et les désastres s’enchainent tour à tour.

Mesure de la radioactivité d’un pin. Age : 100 ans, Hauteur : 15 m, prélevé en janvier 2016 à Iitate (Fukushima). Mesures effectuées par l’université d’Hiroshima. La mesure montre la concentration des isotopes dans le cœur des végétaux.

Documents ITO Nobu (centre de recherche sur la radioactivité à Iitate (IISORA).

Les désastres annoncés se succèdent sans fin à Fukushima

Ce fut d’abord une politique de décontamination toute aussi drastique, coûteuse, qu’inefficace, qui a conduit à l’entrepôt de milliers de sacs contenant des tonnes de terre contaminée répartis sur plus de 115 000 sites dans la préfecture, principalement en bord de mer. Cette politique ayant rempli son seul rôle de regain de confiance citoyenne en démontrant que le gouvernement se préoccupait de la situation, et devenue ingérable par le volume occupé, s’est conclue par la décision de réutiliser les débris en deçà de 8 000 Bq/kg pour la construction des routes et autres travaux relatifs aux ponts et chaussées dans l’ensemble du pays. Cette stratégie s’est accompagnée d’une campagne de communication sur l’acceptation du risque pour inciter au retour en vue d’une « stabilisation » avant l’accueil des jeux Olympiques de 2020, avec notamment la construction d’un centre dans lequel on apprend aux habitants les différents modes de décontamination possibles via des maquettes ludiques, ou encore des visites organisées dans la centrale nucléaire endommagée pour les lycéens, sans protection mais armés de dosimètres.

Documentaire NHK　« Je veux voir de mes propres yeux – Visite de la centrale par des lycéens de la région », 23 novembre 2016

La réouverture d’une partie de la zone d’évacuation conséquente entraîne automatiquement la fin des indemnités de logement accordées jusqu’alors aux réfugiés, ainsi que l’expulsion des habitants des cités de logements provisoires qui seront fermées. Des appartements dans des immeubles collectifs publics, dont ils devront assumer le loyer, leur ont parfois été proposés. La plupart des personnes âgées concernées, propriétaires de biens devenus inhabitables six ans après la catastrophe, sont pour la plupart dans l’incapacité de pouvoir assumer un loyer ainsi que la charge économique de la consommation de biens alimentaires qu’ils produisaient autrefois.

En outre, des psychologues, spécialisés dans les traumatismes psychologiques engendrés par des situations de désastres, dont le Professeur Tsujiuchi de l’université de Waseda, avait estimé, après une étude dont les résultats furent publiés début 2016, qu’un retour contraint sur une zone encore instable, dans laquelle les personnes réfugiées ont subi leur traumatisme, et alors que celles-ci sont atteintes, pour la plupart d’entre elles, de PTSD (Post Traumatic Stress Disorder), serait un nouveau drame, entraînant une vague de suicide notable.

La concrétisation de ces prévisions ne se fit pas attendre. Les communes rouvertes successivement à l’habitat accueillent quelques-uns des habitants qui ont opté pour le retour. La contamination très élevée, bien qu’irrégulière, a découragé la plupart des familles avec enfants au retour, celles-ci ayant recommencé leur vie ailleurs. Les habitants, en très faible nombre, souvent âgés, se trouvent dans une situation d’isolement qui devient vite insupportable, entraînant un état dépressif lourd, voir leur suicide (cf reportage de la NHK en janvier 2017). Ces personnes sont confrontées à une différence trop grande entre l’espoir du retour longtemps maintenu par les discours sécurisants des autorités ou les politiques de décontamination, et la réalité du retour qui est toute autre (taux de radioactivité encore trop élevé, paysage dévasté par la décontamination et les sacs de terre, plus aucun habitant ni de communauté existante).

Iitate, des investissements pharaoniques pour une ville fantôme

Iitate est l’une des communes destinée à être rouverte à l’habitat le mois prochain. Malgré un investissement colossal de plus d’ 1 milliard 700 millions euros pour la reconstruction des divers équipements publics, la commune n’accueillera pas le nombre de résidents escompté. Un habitant du village d’Iitate déclarait le 19 février 2017, lors d’une conférence organisée à Fukushima par des chercheurs et les anciens habitants du village : « on nous dit qu’il n’y a pas de problème. Qu’ il suffit de ne pas aller sur les “hot spots”. On ne peut ni aller en montagne, ni s’approcher des rivières, ne pas aller de droite ni de gauche… Comment voulez- vous que l’ on vive ici ?!”. Un ancien membre du conseil communal, témoigne : « nous avons déménagé il y a six ans maintenant. Pourquoi devrions nous rentrer dans un village désert où l’environnement ne nous permet pas de vivre librement et en sécurité ? ».

Conférence sur le retour des habitants d’Iitate (Fukushima) 19.02.2017 

Photo ©Cécile Brice

Ces derniers mois ont vu un regain des séismes dans la région de Fukushima, au moment où la pénétration d’un robot scorpion dans l’enceinte a permis de confirmer  la fonte du corium du réacteur visité qui s’est enfoncé dans les sous-sols. Cette instabilité ne fait que renforcer la population dans son jugement de ne pas céder à la politique du retour. Même si les habitants « captifs » ont développé des bases de données cartographiées de la radioactivité afin de mettre en place leur protection, les fantasmes des institutions internationales, qui rêvaient de cogestion des conséquences de l’accident nucléaire par les habitants auront montré leurs limites. On ne peut demander aux victimes d’un système imposé d’assumer la charge des accidents engendrés par ce système.

Yokohama, 9 mars 2017

========================= * Cécile Asanuma-Brice est chercheur en sociologie urbaine

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