Living With Fibromyalgia for Fibromyalgia Awareness Day

The following is based on a status update from a friend on Facebook. She adapted it from FMAUK to define her own experience with fibro. I have adapted it again to define my own experience of living with fibro. Much of it is not my own words but I recognise every symptom, every pain and every insult.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain – My pain is not like your pain. It is not caused by inflammation. Taking medication does not help me- it might ease the pain a little but it never goes away. Sometimes it is in my joints, usually its in my muscles, sometimes both. On a good day, it feels like pulled muscles. On a bad day, it hurts to be touched. If you brush past me or poke me, I wince, it is nothing personal, it just really hurts more than you can imagine. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in activities, but I can’t. My body does not work the way it should. I CANNOT run or lift things. Sometimes it is hard to put one foot in front of the other. Please do not take this personally. If you saw me shopping yesterday, but I can’t help you today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness – Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. It may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

For me, this is the worst: not being able to remember that a kettle is called a kettle sucks. I’m not sure I will ever be able to finish my PhD despite being literally at the writing stage. Ive got two academic publications to my name; I’ve attended several conferences and i know the research I was doing was important. I simply can’t concentrate long enough to write it. I also have the basic outline of a non-fiction text that may never get passed that stage. That breaks my heart.

And, yeah, this means my grammar, spelling and vocabulary are frequently wrong. If you are one of those pedants who shrieks about misplaced commas, I suggest you find something else to read.

4. My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. I cannot walk in a straight line. I also fall over. A lot. I don’t think jokes about ‘being drunk’ at school pick up are funny. Mostly, I think you’re an asshole. I am shirking when I say I can’t carry al large bucket of water up the stairs; sometimes my kindle is too heavy to hold in my hand.

5. My sensitivities – FMS has been called the “aggravating everything disorder.” I am light sensitive but my biggest trigger is noise. When its bad, the noise is so over-whelming that I can’t differentiate sound. All I can hear is loud. Everything is extreme. I wear headphones to drown the noise out and sunglasses even when its raining.

6. My temperature – I cannot control my body temperature: sometimes I am freezing sometimes I am dripping sweat. It doesn’t matter what the weather is like outside, my body runs on its own internal thermostat which is, inevitably, wrong. 


7. My mood – Yes, there are days when I would rather stay in bed or in the house. Severe, unrelenting pain and; sleep deprivation can cause depression. I may not be clinically depressed but not be able to live my life the way I want is horrible. The sleep deprivation is soul destroying.

8. My stress – My body does not handle stress well. If I can’t help you or am unable to come out or can’t commit to something, I’m not lazy. I cannot manage every day tasks like cooking, cleaning, eating etc let alone additional things. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight – I may be fat or I may be skinny. The medication makes me gain weight. Not being able to move makes me gain weight. Some days I cannot eat at all; others I cannot tell when I am full. Being over-weight makes the fibro pain worse so I do worry about what and how much I am eating. This worries me as we already live in a culture which fetishises women’s bodies and weight. I don’t want my children learning that from me too

11. My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going. The fact that I function well some days doesn’t mean I don’t have bad days.

12. Illness – when I get a cold, it isn’t a “normal” cold. My immune system goes on strike regularly and a mild runny nose can result in my being in bed for a week. The last time I had the flu, it took nearly 6 months to recover properly. I get every bug going and, sometimes, it feels like I am always sick.

13. My uniqueness – Even those who suffer from FMS are not alike. What one person suffers is different to another person’s suffering. I have pain in my hips, one arm and my neck. Other people with fibro have pain everywhere. I can walk, although it makes me tired. Some days I can write and others I can barely keep my eyes open. 


Some resources on fibromyalgia: 
  • NHS
  • Fibromyalgia Association UK
  • Centre for Disease Control and Prevention (US)

The New Statesman on the Feminist Borg & Why Rape Myths are Good Advice


I’ve read Martha Gill’s piece in the New Statesman three times now and I still don’t get it. The title itself is weird: “CAPITAL LETTERS, affectedly boisterous sex, little girl voice: internet feminists all write the same. This is a problem.” I mean, I know I occasionally use capital letters when angry but I’m fairly sure that’s not restricted to feminists since everyone online knows that capitals means shouting. It’s hardly a shocking revelation or evidence feminists write as the Borg.

Gill is really, really keen on this idea that feminists have the same writing style.  I’m sure if she gave actual names of feminist members of the Borg, we could discuss this but Gill went with the nameless smear rather than actual evidence technique. Maybe I’ve been reading the wrong feminists  but Caitlin Moran and Chitra Nagarajan don’t strike me as having similar writing styles, never mind similar theoretical understandings of feminism. I’ve definitely not read any blogs recently which give in depth descriptions of the various sexual practises of feminists but, going out on a limb here, I’d suggest the authors of Vagenda and Sisterhood is Powerful have very different stances on PIV and heteronormativity. This is, of course, ignoring the issue that some feminists are asexual. There is also that tiny issue of both Vagenda and Sisterhood is Powerful having multiple authors but since feminists write as the Borg this is probably irrelevant.


Normally, I’d ignore this article as just another
 tedious swipe at online feminism, which strikes me as a a bit odd since a number of the New Statesman bloggers are online feminists so it’s rather like attacking themselves. I would have ignored but the second half of the article has absolutely nothing to do with the first.  Well, except for the bit about being factually incorrect and lacking in evidentiary support of sweeping statements.

Gill doesn’t content herself with making unsubstantiated claims about feminist writers. She uses her pet theory to peddle a whole load of seriously damaging rape myths. Apparently, Gill thinks rape myths can protect all women from being raped by following ‘advice’ about stranger rapes. Gill conveniently neglects that tidbit about most rape victims knowing their rapists and that stranger rapes count for less than 20% of rapes.
How does Gill think a child can prevent their father from raping them? How can a woman prevent being raped by their partner on their own home? How can a woman prevent themselves from being raped by a stranger who broke into their own home? How can a woman protect themselves from being raped by their boss? Or, on their way home from work?

Statistically, women are safer from rape in the streets at 3 in the morning surrounding by complete strangers but that isn’t the advice Gill is peddling. She’s just joined an ever-increasing number publicly congratulating themselves on not being raped. The lack of empathy and intellectual engagement is astounding. 

I can not believe the New Statesman printed an article which promotes rape myths.

The only people responsible for rape are rapists.

It doesn’t matter what women wear or do or don’t do.

The ONLY risk factor for rape is being in the presence of rapists.

It’s lazy journalism to take a swipe at online feminism in order to peddle rape myths.

I expect better from the New Statesman.

After all, part of being a journalist is doing research and it’s not that hard to find information on rape myths since Rape Crisis England/ Wales have written a handy guide to them here

The Onion’s Chris Brown "Joke"

I’m not going to link to the Onion article on Chris Brown’s break-up with Rihanna. Frankly, they’ve gotten more than enough ad revenue off yesterday’s article entitled “Heartbroken Chris Brown Always Thought Rihanna Was Woman He’d Beat To Death”. It’s a hateful piece and there is no justification whatsoever for “jokes” about domestic violence and the murder of a woman.

I’m angry someone wrote that piece.

I’m angry that the Onion saw fit to publish it.

I’m angry that there are white feminists “defending” this piece. 

I doubt very much the Onion would have published a piece like this if the victim of violence was white.

I doubt very much the Onion would have published a piece like this if the perpetrator was white.

This isn’t about misogyny, and the Onion has some serious form for pretending misogyny is ‘funny’, this is also about racism.

Rihanna has the right to live her life in privacy without being publicly humiliated and blamed for being a victim of domestic violence.

By all means, call Chris Brown out on his violence but not like this. Don’t resort to malicious “jokes”.

Male violence is all too frequently ignored, minimised and elided under the guise of “humour”. How many women have to die before we stop pretending domestic violence is funny?

Silencing other women

I have been shovelling out my hall cupboards so I genuinely have no idea how this current twitter disagreement got started or why everyone is either tweeting their menstrual cycle or not as the case may be. 

Now, I don’t tend to tweet about my period. At least when I do, it’s to recommend the mooncup for people who ask. I follow women who tweet their periods every month. I follow women who would be horrified by that. I follow women who do not menstruate because of biology and other women who use birth control to prevent bleeding. We all know not all women menstruate so, frankly, I’m finding this disagreement baffling.

What concerns me about the debate that I can see on my twitter timeline right now is the silencing of women. When did it become acceptable for women to tell other women whether or not they can publicly discuss something which happens to their bodies?

FFS, we live in a culture which treats women’s bodies as dirty and ugly. How many adult woman can’t even use the words vagina and vulva in public? How many young girls are taught that their vagina is dirty? How many young women undergo surgery to make their vulvas look “real”? We are raising a generation of girls who are learning about their bodies online, from websites dedicated to male sexuality. We have a generation of girls who have no idea just how huge the definition of “normal” is as it pertains to the physical realities of their bodies but who are also taught not to ask questions because it’s “gross”.

Are we really at the point where women aren’t allowed to discuss what happens to their own bodies because other women might not like it? 

Where does this stop?

Do we prevent women from breastfeeding publicly because some women aren’t able to? 

Do we stop pregnant women discussing their pregnancies in public because some women aren’t able to get pregnant?

Do we pretend that menses can’t cause serious consequences for women who have serious mental health conditions?

Do we ignore the realities of abortion because some women cannot conceive?

Do we prevent women from discussing their miscarriages because it makes other women uncomfortable?

Do we prevent women from discussing breast cancer because it makes other women uncomfortable?

Do we pretend that menopause doesn’t cause serious physical problems for some women so as not make other women over-anxious? 

People talk publicly on twitter about things they would never dream of discussing in real life. Twitter isn’t always a comfortable place to be but its a lot more honest about the realities of women’s bodies than other spaces. We cannot demand women not talk about issues that are important to them because someone else doesn’t like it. Self-care is important and twitter has those handy unfollow/block buttons for those who need it but asking other women to never talk on twitter about the physical reality of their bodies isn’t kind. 

Another Day: More Stupid Arsenuggets Who Think Domestic Violence is Funny


Another day, yet more stupid men who think domestic violence is funny.

This time it is Enjoi/ Globe Skate Boards. There is a petition here. Please sign.


This is the text of the petition:

“Domestic violence isn’t a joke and this t-shirt isn’t funny. Help us get enjoi to take down the shirt and continue spreading love of skateboarding without adding to the desensitization of violence that already exists.”
To:
Enjoi/Globe Skate Boards
Enjoi/Globe Skate Boards

Dear Enjoi/Globe,

Domestic violence isn’t a joke and this t-shirt isn’t funny. Please stop all sales and production of the “Ex GirlFriend” T-Shirt. Continue spreading love of skateboarding without adding to the desensitization of violence that already exists.

Dear Disney, Fuck You. Love, Merida’s Fans

A Mighty Girl has started a petition to ask Disney to stop trashing Merida. Now, I’m not the greatest fan of Brave, as I blogged here, but I cannot believe Disney is turning their first real female character into another cookie cutter pastiche of femininity.

This is the text of the petition:

Merida was the princess that countless girls and their parents were waiting for — a strong, confident, self-rescuing princess ready to set off on her next adventure with her bow at the ready. She was a princess who looked like a real girl, complete with the ‘imperfections’ that all people have.

The redesign of Merida in advance of her official induction to the Disney Princess collection does a tremendous disservice to the millions of children for whom Merida is an empowering role model who speaks to girls’ capacity to be change agents in the world rather than just trophies to be admired. Moreover, by making her skinnier, sexier and more mature in appearance, you are sending a message to girls that the original, realistic, teenage-appearing version of Merida is inferior; that for girls and women to have value — to be recognized as true princesses — they must conform to a narrow definition of beauty.

In an interview with Pixar Portal, “Brave” writer and co-director Brenda Chapman stated, “Because of marketing, little girls gravitate toward princess products, so my goal was to offer up a different kind of princess — a stronger princess that both mothers and daughters could relate to, so mothers wouldn’t be pulling their hair out when their little girls were trying to dress or act like this princess. Instead they’d be like, ‘Yeah, you go girl!’”

This new Merida is a paler reflection of her former self without the spark and the ‘you go girl’ quality that her creator intended.

We write to you on behalf of all the young girls who embraced Merida as a role model, who learned from her that they too could go off on an adventure and save the day; that it’s not how you look that matters but who you are. For them and for all the children — both girls and boys — who benefit from seeing depictions of strong, courageous, and independent-minded girls and women that are so scarce in animated movies, we ask you to return to the original Merida that we all know and love. We ask you to keep Merida Brave!



To:
Robert A. Iger, Chairman and Chief Executive Officer, The Walt Disney Company
Zenia Mucha, Executive Vice President, Chief Communications Officer, The Walt Disney Company
Nidia Caceros, Director, Corporate Communications, The Walt Disney Company

Merida was the princess that countless girls and their parents were waiting for — a strong, confident, self-rescuing princess ready to set off on her next adventure with her bow at the ready. She was a princess who looked like a real girl, complete with the ‘imperfections’ that all people have. 

The redesign of Merida in advance of her official induction to the Disney Princess collection does a tremendous disservice to the millions of children for whom Merida is an empowering role model who speaks to girls’ capacity to be change agents in the world rather than just trophies to be admired. Moreover, by making her skinnier, sexier and more mature in appearance, you are sending a message to girls that the original, realistic, teenage-appearing version of Merida is inferior; that for girls and women to have value — to be recognized as true princesses — they must conform to a narrow definition of beauty. 

In an interview with Pixar Portal, “Brave” writer and co-director Brenda Chapman stated, “Because of marketing, little girls gravitate toward princess products, so my goal was to offer up a different kind of princess — a stronger princess that both mothers and daughters could relate to, so mothers wouldn’t be pulling their hair out when their little girls were trying to dress or act like this princess. Instead they’d be like, ‘Yeah, you go girl!’”
This new Merida is a paler reflection of her former self without the spark and the ‘you go girl’ quality that her creator intended.

We write to you on behalf of all the young girls who embraced Merida as a role model, who learned from her that they too could go off on an adventure and save the day; that it’s not how you look that matters but who you are. For them and for all the children — both girls and boys — who benefit from seeing depictions of strong, courageous, and independent-minded girls and women that are so scarce in animated movies, we ask you to return to the original Merida that we all know and love. We ask you to keep Merida Brave!
Sincerely, 

[Your name]

MRE vs MRA: Changing the Terms of the Debate

I’ve only just recently come across the acronym MRE which stands for misogynist rights extremists. I like it much more than MRA [male rights activists]. MRE makes it much clearer that we are talking about violent, abusive misogynistic men who genuinely hate women. Far too often when I use the term MRA someone pops up to ask, genuinely, why someone advocating for men’s rights is automatically a misogynist. Obviously, there are a whole lot of derailers who ask the same thing but that doesn’t negate the importance of answering the question. After all, no feminist would argue that men should not have the right to campaign for rape crisis centres that are men-only or that male breast cancer is lost in the pink hoopla of campaigns to raise awareness of breast cancer in women or that men aren’t also victims of domestic violence

Misogynist rights extremists makes it clear we are talking about the men who think domestic violence is just women being whiny rather than systemic violence. It stops the malicious derailment of the discussion of male violence whilst ensuring their is no confusion between men genuinely campaigning to help other men and misogynistic arsenuggets who prefer whinging to actually getting off their arses to do something.

Gwyneth Paltrow, Goop and the Inability to Separate the Personal from the Political


I got rather excited when I came across this article by Annette Bourdeau in the Huffington Post entitled: “10 Actresses I’d Rather See in the IronMan Suit”. Silly me. I thought it was an Ironman reboot idea with a woman as IronMan. 

I was wrong.

It was just another, incredibly unsubtle, personal attack on Gwyneth Paltrow. Now, I’m not a fan of Gwyneth Paltrow as an actress. This is simply because I don’t happen to enjoy the types of films she appears in. In fact, the only movies I have enjoyed in which Paltrow appears are the IronMan franchise and the Avengers. I’m a huge fan of  superhero movies and not-so-much the Hollywood version of the ‘arthouse film’. With the exception of the films Hook, Seven and Shakespeare in Love, I genuinely can’t name another film Paltrow has been in. 

I’m also not a fan of Goop. It is beyond ridiculous. It fails to acknowledge the reality of the lives of women who are not wealthy and white. It represents everything I loathe about our capitalist-patriarchal culture. I can not accurately define my hatred for Goop and the heteronormative, white, rich, and consumerist construction of a reality it endorses which is unachievable by 98% of the planet who don’t have servants and nannies and are unable to spend 10 hours a day at the gym working on their upper arms. This ignores the frankly dangerous “healthy eating” advice in both Goop and the spin-off “cookbook”.

However, I equally dislike the personal nature of the attacks on Paltrow. Granted she has form for making statements which are remarkably lacking in self-awareness but that is hardly shocking for someone as privileged as Paltrow. Her inability to understand the reality the rest of us live in is a problem but insulting Paltrow won’t change that. Yes, she needs to take some personal responsibility for her own comments but, really, she’s hardly responsible the body in which she was born. Paltrow is hardly responsible for being placed on the cover of People Magazines notoriously misogynistic ’50 Most Beautiful People’ edition.

I get that Annette Bourdeau hates Paltrow but phrases like ‘smug mug’ are waltzing into the territory commonly referred to as misogyny. Goop deserves all the criticism it gets. Paltrow deserves criticism for her, generally ridiculous, statements and her inability to see her privilege but we need to focus our criticism on her actions and words and not reinforce the misogyny of our capitalist-patriarchy by using misogynistic language to denigrate the work of a talented actress. 

Goop is the problem. 

The capitalist-patriarchy is the problem.

Our heteronormative, white supremacist culture is the problem.

We need to focus our anger on them and not waste time in personal attacks. 

Personal attacks on other women achieve nothing.

We need to call Paltrow out on her lack of awareness of her privilege but in a manner which does not involve misogynistic language and abuse.

The REAL reason #RadFem2013 is having problems with its venue


This is the official reason that #RadFem2013 has been having problems with the venue. This statement is from Off to Work as posted on their Facebook page:

The booking with Off to Work, based at London Irish Centre, was going ahead with the Radfem2013 organising committee, who are professionally organising a successful event for the Radical Feminist Community. The organisers were completely transparent about their conference and we have no criticisms to make of them and we have no opinion at all about their political analysis. 

Allegations that some media sources and bloggers are putting forward about the reason for the decision having anything to do with their political analysis, opinions, “hate speech” or the conference being in breach of legislation are completely false. Our partner, The London Irish Centre, is in agreement with us that these allegations are not the reason for this suspension. The reason, as outlined to the organisers, are specifically around the safety of staff, the overall ability of the centre to logistically manage the booking, and the level of disruption that a small group of protesters have caused. We support the conference going ahead and we are working with the organising collective to find a way forward to ensure that this happens.

This has quite clearly been their stance since the first rumours started about the venue possibly pulling out to do to harassment of their staff. The lies and deliberate misinformation spread by both the MRE group A Voice for Men and certain supposed feminist-activists are quite clear. 

I expect the feminists who deliberately spread this misinformation despite knowing it was clearly false will apologise now. That would be the feminist thing to do. 

#ReadingOnlyBooksWrittenByWomen: Radical Feminist Theory


My reading theme for May is radical feminist theory. I haven’t actually read many classic texts of radical feminism; a lot of my radical feminist theory has been learned reading blogs and discussing it with other women on FB and at conferences. Since I am attending my first formal RadFem conference this June, I thought it might be worth covering more texts than Andrea Dworkin’s Intercourse and Kate Millett’s Sexual Politics [both of which are must-reads].

These are the texts I’ve lined up for this month:

Valerie Solanas’ Scum Manifesto
Marilyn French’s The War Against Women
Gerda Lerner’s The Creation of Patriarchy
Robin Morgan’s Sisterhood is Powerful: An Anthology of Writings from the Womens Liberation Movement
Lynne Harne & Elaine Miller’s All the Rage: Reasserting Radical Lesbian Feminism
Janice Raymond’s A Passion for Friends
Diane Bell & Renate Klein’s Radically Speaking: Feminism Reclaimed

Three of the texts, Robin Morgan’s Sisterhood is Powerful, Lynne Harne & Elaine Miller’s All the Rage and Diane Bell & Renate Klein’s Radically Speaking, are anthologies. They are also huge. I’m not sure I’ll make it through them all but I wanted to get as big a variety of radical feminist voices as possible.