Trigger warning: suicidal thoughts, descriptions of extreme pain.
We all perceive pain differently. Man-flu sends, oh dozens, to their beds yearly. While others slam back a couple of paracetamol and get on with their day none the worse. Those with chronic pain disorders start their evaluations of a 1-10 scale where most end theirs. Having chronic pain means that while we may be more sensitive to having any pain, we become used to it. Not that we become physically numb to a certain level like it vanishes. Nope. We feel it all but our capacity to cope longer on more pain increases over time. We know our limits, down to the last millisecond. While some class the pain that comes with severe flu or the worst period cramps you have ever had at a 7/8 as it leaves you curled up in a ball crying and downing Beechams and Feminax faster than smarties. For someone with chronic pain – that’s baseline normal. Everyday. Every single hour and minute without release.
We are not trying to say we have it worse. Well, actually we do, but if we gave into it we would never leave our beds and for most of us that kind of life is unacceptable. For most of us, the day can start from anywhere between a 4 and a 6. Flares, on the other hand, start at 10 and just get unbelievably worse. In “5 foot 2” you can see Lady Gaga describing her pain and weeping, screaming into pillows. That is real. And that is what we are going to share here, our flare stories.
Fibromyalgia symptoms fluctuate. They can come in waves, peaks and troughs, and we experience periods where our symptoms seem to converge and create the perfect storm. This is called a flare.
My last flare lasted for 10 days. I’d had a super busy August, and the first weekend in September was busy because it was my birthday. By Monday morning, I could barely stand. It took everything I had just to get myself into pj’s and 20 feet from my bed to the sofa. I had to rest before I could make it the next 15 feet to the bathroom. My pain levels shot up, my cognitive function decreased. Holding a conversation became impossible. I was having to take the maximum doses of my painkillers. I was a zombie.
Any food I managed to eat had to be prepared for me or grab-and-go. It was extremely unsafe for me to use a knife, heat or a kettle. My days passed in a haze. I couldn’t tell you what I’d watched on TV or what time it was. Almost all of the energy I had was used up by my heart beating and my lungs inflating. What was left of my energy was saved for conversations with my husband and dealing with the mental fall out of my world narrowing down to the 35 steps between the bed and the toilet. The living room is in the middle, the middle of my cage.
‘Living room’. It doesn’t feel like I’m living when in a flare. I’m hanging on, barely existing, while I wait for it all to pass. I can easily tell you that my pain levels are a consistent 8.5/10. Everything hurts and my body has all but shut down in order to deal with it. My body is on standby, but my mind is still active. It can’t articulate any of it, it can’t communicate with the outside world properly, but it’s still whirring away. It’s very disjointed, thoughts are more like pictures and feelings. It’s not the usual rolling conversation I have with myself. That and living with extreme pain inevitably leads to negative thoughts. It’s human nature to look for an escape when we’re trapped. It would be permanent. I wouldn’t have to feel pain ever again. I could be free.
Luckily, for me, that doesn’t last long. I’m snapped out of it by my husband and our dogs. After 5 days, my body shifts gear. The walk to the toilet feels less like a Himalayan trek. By day 10 I’m desperate to leave the house. I’ve come to appreciate normality and the simple life. A supermarket is an adventure for me, where for others it’s mundane.
Fibromyalgia, and chronic pain, is more than just pain. It’s isolating, it’s lonely. A lot of my time is spent just existing. The rest is spent trying not to push my body too far so that I can avoid the flares. It’s a fine balance, one that I often throw off through necessity and sheer desperation to do something. To be normal. So, when you see us outside looking and acting normal. Don’t think we’re cured. Think about what we’ll have to go through in the next 10 days and remember that we are warriors, about to go into a silent battle that could one day be our last.
My last flare… Started in bed with my partner just as we settled down to watch a movie (Lego Batman). Mine are triggered when I finally slow down. When the adrenaline of panic I need to get this done, or rage I need to see this through, or fear because someone needs me right now and there is literally no one else – stops. My body decides to tell me in no uncertain terms exactly how much it objects to being abused. By the end of the opening credits, I had gone from a usual end of the day 6/7 to a nightmare 10. And then it got worse.
I try to describe my pain as a normal individual would do if they were talking to a healthcare professional. 1 = paper cut. 3/4 = a bad cold or really awful period cramps. 6/7 = sprained ankle torn muscle. 8/9 = something has just dislocated or I am bleeding from a defensive knife wound. 10 = please give me the hard drugs NOW.
At 11 I white out from the pain. There is no reaching me. Like hypothermia, I lose the ability to function logically. I can’t think clearly enough to take the codeine I have prescribed for emergencies like these. (NOTE: codeine turns to morphine in your system.) Time dilates and seconds become hours. First, it feels like all the nerve ending in my body are all firing off at once. They are millions of infinitesimally tiny red-hot pokers. Joints in my spine, hands, feet, knees and hips are the worst. They feel like they are on fire and inflamed. It hurts to breathe.
12. My muscles start to spasm. Random single muscles all over my face and body. There are 12 muscles in each thigh. 43 muscles in the face, 17 in the palm of your hand. Each time one randomly spasms it cause my body to jerk which sets off a cascade to the rest of my body aggravating the pain receptors there hiking it up to 14. By this time I am in a ball crying and in denial and rocking back and forth and no longer in control of my body or mental state. I have totally shut out the outside world and my existence is just the pain.
A flare this severe can last for hours until I become exhausted and pass out. Sometimes if I am lucky at the start of a flare I can remember to take my meds. Sometimes if I am lucky and I am not alone my partner or family can get me to take my meds. It can take 20 – 30 minutes for them to kick in and the danger is that this time they won’t work and I will need to take more. And sometimes the limit of what is safe doesn’t even come anywhere close to touching it and I have to ride out the flare.
Recovery from a flare can take weeks. At first, I am so wiped out I can’t move, can’t stand for falling over and need help to get to and use the loo. My mind is so dulled by the fog I stare out the windows for hours. Thank god for Netflix! I swear I have binged dozens of series that I seriously cannot remember as a way show myself that time has moved. For the first few days I tire extremely easily, but rarely sleep. The brain fog can take a week to clear (which is why I have six jars of paprika in my spice rack and my keys in the freezer). Getting my energy back to function normally, or normal for me, can take longer.
Many think chronic pain disorders are an easy excuse to get a day off work or live off the government. I don’t get any grants and I don’t want them. What I wouldn’t give to live a normal life. To not have pain.
FINALLY, We would like to thank the Mother of all us Monsters herself Lady Gaga for being so brave to share the stories of her pain with us so that we can share our stories with you. There is strength and solidarity in numbers. We are not alone.
Fashion and fetish model, Biologist, and Internet Sensation.