Some people with Fibromyalgia, experience “flares”. A “flare means; a temporary increase in the number and/or intensity of symptoms. Some flares only last for a day or two but others may continue for several weeks or even months. I am not one of these people. My pain is with me daily and never leaves me. I don’t experience good days and bad days like some. My Fibromyalgia is chronic and impacts my daily life. I have no days off. Fibromyalgia is a full-time job. With no benefits.
Today is Saturday. Although I fell asleep early last night (early for me is 11 pm or 12 pm due to insomnia) still 12 hours later I am tired. Too fatigued to lift my head off the pillow. I am woken up by my husband at 11 am. Asking me if I am ready to get up. I am not. I barely manage to answer his questions. Too tired to say more than one-word answers. I am too fatigued and the pain is that bad that I couldn’t get up even if I wanted to. So in bed, I stay.
1 pm my husband asks me again if I want to get up. The answer is no. Still too fatigued to lift my head off the pillow let alone attempt to sit up. After 14 hours of solid sleep. Getting out of bed feels like an impossible task. Like climbing Mount Everest. So in bed, I stay.
5 pm my husband asks if I would like something to eat. I say no. I am hungry but too tired to eat. My arms are so pained I am unable to dispense my medication from the packets. Popping them out of the foil is just too much. My husband dispenses my medication and gives me something to drink. After taking my medication back to sleep I go.
My husband leaves me for the night. I continue to sleep until he wakes me the next morning. Without him rousing me. I would more than likely continue to sleep until at least lunchtime.
Despite sleeping for 24hrs I am no less tired than I was before I went to bed. A symptom of Fibromyalgia is non-restorative sleep. I have Chronic Fatigue Syndrome as well as Fibromyalgia. So I experience it two-fold.
Non-restorative sleep definition
Non-restorative sleep and daytime fatigue are two common symptoms of fibromyalgia. Some polysomnographic data suggests people with the condition experience wakefulness during the non-rapid eye movement (NREM) stages of the sleep cycle and receive less slow-wave sleep as a result.
The next day I awake having not eaten for more than 24hrs and more often than not. I don’t take all the medication I should have taken, as I have slept for a whole day. This means that not only do I wake up still chronically fatigued. I wake up in excruciating pain as I have missed 2 or more doses of my pain medication. On mornings like these my husband has to lay out my clothes, help me dress and lead me to the couch where I will stay for the remainder of the day. Reliant on him for everything.
This is how my weekends are spent. Come Monday I have a part-time job that I must turn up for Monday-Friday. I have to navigate through all my symptoms along with work and family life with 2 boys. Like anyone else I have bills to pay and a family to support.
Without being dramatic, remaining completely frank about my situation, the only word I can use to describe my situation is hell. It’s a living hell and I wouldn’t wish it on my worst enemy.
Related article: “How do you accept being told you will be in severe pain every day for the rest of your life and there is no cure? “
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