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.