Living with Fibromyalgia
Living with fibromyalgia can be compared to traffic lights. Not Pelican lights – the ones we control and decide when to press – but traffic lights, which light automatically, no matter what you are doing.
With fibromyalgia, with its more than 200 symptoms, the red light is constantly going beep beep beep. It does not stop, it may change to amber, but it is always in the background. When the green light comes on, we think ‘Ah, finally, I’m myself again, I can do things’, those things pending for a long time. The risk with the green light, which comes out of nowhere, without any kind of indication, is that it may change from amber to red in a moment. And, just like that, the pain starts creeping back, after your day doing chores, or going to work, or simply enjoying a day out. It ruins the next few days, as your body needs to recuperate and might even shut down.
The brain in fibromyalgia is scientifically proven by MRI brain scans to be all lit up like a Christmas tree, when even the slightest pressure is exerted on the body.* Persons living with fibromyalgia look ‘normal’ yet, if one had to take a deep look into their eyes, they will realise that they are suffering. Physiologically speaking, every part of their body hurts, pain migrates from one part of the body to another, dull, stabbing, burning sensation, stinging, nagging pain. With that, comes exhaustion, from trying too hard to hide your symptoms, from suffering constant pain. Migraines, TMJ, IBS, sleep disturbance, nausea, dizziness, allergies, fatigue, tender joints, in my case hypermobility, muscle weakness, difficulty remembering and fibro fog. There is no diagnostic test for fibromyalgia; it is diagnosed by exclusion but, when the right tests are done, one can clearly indicate it is there. It is not in the head, it is not imagined, it is real, like a live wire, like a traffic light.
I manage to work – yet, every day I say, ‘I don’t know for how much longer’. Till now I am getting through the day, looking ‘normal’, a healthy middle-aged woman. A mother who juggles family life, work, volunteers in an NGO and handles her illness. Life is hard for every woman, imagine living with a chronic illness. Imagine wanting to meet your clients, but your body refuses to walk, talk, think or even concentrate. Imagine wanting to do house chores after a week’s work, and your body cannot move, for it is crushed with pain and exhaustion. Who will do the work? Who will do the laundry, the floors, the cleaning? Who will cook? Who will pay the bills? Who will take care of the family’s basic needs.
Persons with fibromyalgia are fighting the stigma of invisible disability. We are judged and misunderstood by most. We need help and recognition and more awareness.
f/ME, CFS & Fibromyalgia Alliance Malta