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.

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.

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)