Feminist Mothering with Fibromyalgia

I have fibromyalgia. I rarely admit to having it in public. If people ask why I look exhausted or am limping or struggling to use words, I say I have migraines. People have sympathy for migraines. They know it means extreme pain and sensitivities. When you say, “I have fibromyalgia” the response wavers between “I have a sore knee too” or “I’ve heard of that. My third-cousin twice-removed, next-door neighbour’s parakeet’s beautician has it and they got to go on disability for life.” Neither response makes it possible to explain what fibromyalgia does to your body.

Fibromyalgia has been called the “aggravating everything disorder.” I cannot control my body temperature. It doesn’t matter what the weather is like outside, my body runs on its own internal thermostat which is, inevitably, wrong.  I’m the one in the school playground in a t-shirt in the middle of winter and a hoodie on the hottest day of the year. I am also light sensitive, which means I’m also the one in sunglasses in the rain. My biggest ‘aggravator’ trigger is noise. When it is bad, the noise is so over-whelming that I can’t differentiate sound. Everything is extreme. I wear headphones to drown the noise out.

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. We won’t discuss the side effects of the irritable bowel syndrome that co-exists with fibromyalgia.

A Facebook meme a few months ago made it clear: “my pain is not like your pain”. I have pain everyday – sometimes it’s manageable with painkillers and heat pads and sometimes its not. Sometimes I can’t turn my head because the muscles have seized. On more than one occasion the pain at the base of my skull has been so severe that piercing the back of my neck with a knitting needle didn’t seem like too bad an idea.

I’ve been really open about how hard it is as someone who loves writing to be unable to put my thoughts out coherently: that what ends up on the paper isn’t what was in my head because of the way the fibromyalgia has effected the ability of my brain to communicate clearly. It’s also affected my ability to speak since I lose words and have huge pauses in between words (that I don’t realise are happening). I also find it difficult to process what is being said to me when tired: I know people are talking but I can’t hear the actual words and, even when I can hear some of the words, my brain can’t actually process the message. When it’s this bad, the only thing I can do is nap. This isn’t exactly conducive to being a writer.

It is the fatigue that is the worst symptom. Sleep deprivation is classed as a form of torture for a reason. I am often in a severe state of exhaustion. I can’t sleep so the pain increases and because of the severity of the pain, I can’t sleep. So, I have depression as well. The depression and severe pain require long-term medications, which result in weight gain. Weight gain makes it harder to exercise and the circle continues.

Obviously this pain and exhaustion impact on my daily life, but it is my mothering where it impacts the most. Living with fibromyalgia makes mothering nearly impossible. I can cope on school days when the pain is in a ‘good’ phase because I can nap during the day. Weekends are more difficult. I cannot manage the day without a nap that means I have to plan my time with my daughter around my sleep schedule. It is even worse when the pain is severe or I have a cold.

I have two daughters. My eldest was 9 nine before I was diagnosed with fibromyalgia. I used to take her to castles, the zoo, and to the beach all the time. We would walk for miles in the woods, scramble up hills, and go camping. With my youngest daughter, walking three blocks to school can result in a four-hour nap. Camping outside is a no-go since tense muscles and pain don’t respond well to sleeping on the ground – and this is without dealing with the issue of my inability to control my body temperature.

How do you explain to a young child that the reason you can’t listen to their story is because the distortion in your ears is so intense that you can’t actually hear their words? Or, that the much promised trip to the zoo is impossible as you can’t walk?

The guilt is immense.

The guilt is not improved by media constructions of the “good mother”. How many news articles are written about children watching too much television or spending too much time on an iPad? Television fetes mothers who bake cupcakes, run marathons, and volunteer for the PTA. When they only thing you are capable of on a bad day is making a packed lunch, the myth of the SuperMom feels like an extra massive kick in the teeth. To be a mother with fibromyalgia is to be a failure.

Today is Fibromyalgia Awareness Day and I’m having a relatively good day. I have time for a nap before collecting my daughter from school and I managed to get some work done. I’ve balanced the need to pay my rent with caring for my child. Most days aren’t this good and, even if they were, it wouldn’t change the stigma of being a disabled mother. Or, erase the guilt for not being a great mother.

In child protection, the term ‘good enough mothering’ is used to describe women with multiple support needs who have children – whether these needs involve substance use, alcohol dependency, mental illness or trauma. This is what mothering with fibromyalgia is: good enough mothering. It’s just not that easy to remember this when faced with a disappointed child who only wanted to visit the zoo.

My Life with Fibromyalgia

I woke up one morning and my leg didn’t work. I stood up then fell over.

I was 14 years old and I couldn’t stand up by myself. My leg didn’t hurt. It just wouldn’t bear my weight. I was living with my father at the time and had to call my mother to come and collect me. We spent the morning at the hospital . In between the x-rays and blood tests, I got to have a conversation with an utterly bemused police officer who was trying to interview some teenagers who had been in a car accident. Trying to convince him he was in the wrong room helped pass the time at least.

In the end, I was told I had had the flu and that the virus had attacked the liquid in my hip socket resulting in the bones grinding against each other causing permanent damage. I don’t remember having the flu, just a runny nose, however the blood tests showed influenza so influenza it was. I only stayed on crutches a few days. I should have stayed on them for a few months to let my hip heal, but when you’re the class victim of bullying an imaginary disease doesn’t exactly improve your street cred.

Whether or not this is when I developed fibromyalgia is open to debate. Some medical professionals say yes and others say no emphatically, my favourite doctor takes a “who the fuck knows” approach to it. I did remain asymptomatic for about a decade after. When I got sick, my body took longer than others to heal  – a frequent indicator of fibromyalgia – something that did not make me popular with teachers. And, Mr Stewart, I do still remember you insinuating I was faking illness to the rest of the kids in the class. That really helped with the bullying issue.

I was relatively healthy though. I had my first daughter when I was 19 and managed to get honours in two undergraduate degrees and a masters degree as a single parent. It wasn’t until I moved to Edinburgh to do a PhD that the symptoms  got worse. My right leg collapsed again and I struggled to walk. I was sent to a neurologist and an arthritis specialist. For over a year, I was treated as though I had arthritis and used crutches or a cane to walk. This is the exact opposite of the treatment recommended for fibromyalgia. I gained weight because I couldn’t walk. I failed my PhD because I couldn’t work: I was exhausted all the time and I started losing words.

Then I got pregnant. Pregnancy and fibromyalgia are not the best of buddies. My asthma resulted in hospitalisation. I had constant nausea and migraines. These culminated in post-natal depression which went undiagnosed for years. My baby was not a sleeper making the exhaustion and depression a whirlwind of hideousness. I was so sick for so many years that I have lost huge chunks of time.

On the positive side, I haven’t had real trouble with my right hip for years. I can predict the weather depending on how stiff it is but I can walk. My body has compensated in other areas: migraines at the base of my neck, excruciating pain in my left shoulder, pain in my right arm and elbow, migraines in my right eye. I also have fibro fog, aphasia, anxiety, depression, inability to control my body temperature, and sleep deprivation. Fibro fog effects my short-term memory, my language skills (hence the typos), and ability to communicate. I have huge pauses in my sentences and sometimes I forget what I was actually trying to say.

These are the medications I’m on for good days:

  • multivitamin
  • Vitamin D
  • B12
  • B6
  • iron fortified water supplement
  • amitriptyline
  • citalopram
  • paracetemol
  • soluble aspirin
  • temazepam

On the bad days nothing works.

I’ve had fibromyalgia since I was 14 years old. I lived most of my life with a disease that no one understands the causes of or how to treat it successfully – never mind cure it. I live everyday with exhaustion, anxiety, depression, and extreme physical pain.

And, I’m one of the luckier women diagnosed with fibromyalgia. Most women have it much worse than I do.

This is my lovely friend Cath’s experience of fibro. I also wrote about feminist mothering whilst living with fibromyalgia.

#DickheadDetox: Matthew Sanders for being a selfish tosser

This as swipe, having had a massive temper tantrum at being caught illegally parking in a parking space for people with disabilities has chosen to spend the whole day wasting the time of police officers, traffic wardens and blocking a parking space. This is so quintessentially entitled male behaviour that it’s almost impossible to believe it’s true. But, no, Matthew Sanders, currently of Birmingham but hopefully soon a guest of His Majesty, is genuinely having a huge tantrum because he got caught illegally parked:

A driver who parked in a disabled bay is in a stand-off with Birmingham City Council – after jumping back into his car to stop it being towed away.

Double glazing salesman Matthew Sanders, 34, is still inside his Vauxhall Tigra, which is now on the back of a low loader in Birmingham city centre.

The drama began when he was given a ticket for parking in a disabled bay.He said he was then angered when wardens tried to tow the car, which he said was not causing an obstruction.

I’ll be here all day. They have targets. This is private corporations ripping people off at Christmas.This is my only form of transport and need it for work and I’ve got to pick my daughter up from her mum’s.The council is short of cash and is trying to load my car up to cost me more money.I can’t afford to get it released so if they try to get me out I’ll just write it off.

– MATTHEW SANDERS

See, he’s got reasons for  being an asshole: like having a job and a kid. Weirdly, lot of other people have jobs and kids and don’t behave like gigantic fucking tosspots. And, ruin everyone else’s day with public displays of arrogance, narcissism and general fucking stupid.

I live in hope this dude with be billed for all the wasted hours of the traffic wardens, police, tow truck driver and everyone else caught up in his whinge-fest.

The Heat: Good Female Buddy Film; Shame about the Disablism

The_Heat_poster

 

I really, really wanted to love The Heat: a female cop buddy film starring two great actresses. And, it was really funny in places. The relationship between the two women was lovely but it was too dependent on stereotyped constructions of “good” and “bad” women. It was also full of fat jokes, comments about frigid dry cunts and liberal use of the fucktard.

Because it’s apparently completely impossible to make a film with a woman who does not meet Hollywood’s standards of acceptable without constant references to her weight and oh-so-hilarious clips of her getting stuck in cars.

And, really, fucktard? Do we really have to have disablist words to mark out a character as “low class”. Because that’s what Melissa McCarthy’s character represents: a fat, lazy, stupid, low class women. And, Bullock: a frigid bitch with a dried up cunt.

This is Hollywood’s version of a feel good buddy film: cliched stereotypes, misogyny and disablism.

Amazon’s Halloween with Side Order of Disablism

Mens Adult Psycho Ward Mental Patient Halloween Fancy Dress Costume Outfit + Mask
Amazon has joined Asda in the annual competition for : The Most Offensive Halloween Costume.

There is no excuse for selling these types of costumes. Asda’s apology and donation to a mental health charity is more than Amazon will ever do but it’s also too late once these products have hit the market. 

People with mental health problems are statistically more likely to be a victim of violence than commit violence.

The group who commit the most violence: men. Men who have no history of mental health problems.

If the idea of “killers” is such a great Halloween costume, then we should all go out wearing masks of random men. That would be far more accurate. Instead, people genuinely think it’s hilariously funny to dress up as a “psycho” or a “mental patient”.

Honestly, if you think this shit is funny, you’re an asshole. It really is that simple.