Many people living with chronic illness, worry, and pain, experience insomnia. In fact, even children can experience it. It is a very insidious problem, and with the current state of affairs, I suspect that more people are staying awake than before. Paradoxically, even those with chronic fatigue or fibromyalgia, may be unable to sleep, although they feel exhausted. Sometimes, after exertion, whether cleaning or shopping or laundry or even walks for pleasure, pain and fatigue hit like a ton of bricks. But at night, sleep can be elusive. Since I was a reader long before the internet, I often enjoyed reading at night. I still do. There is something magical about immersions in other worlds, while the world outside of oneself is sleeping and relaxed.
In Mexico and Cuba, the nights would be punctuated by rogue roosters, all of who seemed to suffer from insomnia, and never waited for dawn to start their proclamations! In fact, I began to wonder if the rooster- crowing- at- dawn trope was actually a myth. Or was it that ages ago, cities and countrysides were not as lit up throughout the nights, encouraging roosters to sleep?
Reading however is a great escape, if one can concentrate enough to enjoy it! I continue reading at night especially when I can’t sleep. With the closure of bookstores and my aversion to online shopping, the high-price of new novels, I have found online resources at the public library to be a great resource. I first realized that online reading was helpful in travelling, as so much weight was taken up by my books. But with the pandemic, I have resorted to online mysteries, biographies and children’s literature. Sadly, the last category is the weakest and a lot of stuff online for kids is really repetitive and badly written. Illustrated books for younger kids show a total reliance on cartoon culture and a lack of visual imagination.
The other night, while waiting for sleep, I went back to the haiku, a favourite form of poetry. After reading a few contemporary ones, I decided to try my hand at some after a long time. Here, they are.
I am sharing this piece in honour of May, Fibromyalgia month. May 12th is Fibromyalgia Awareness Day. This is a victory for those of us who have been diagnosed with this illness, which has gone through many medical iterations before finally and most recently being considered an illness of the central nervous system. Which makes a great deal of sense to me as a patient for over two decades!
In the times of the new coronavirus, COVID19, it would do us well to pay attention to the struggle and suffering of people who also have illnesses of undetermined nature that catastrophically affect their quality of life, including their abilities to earn, learn, work, and parent, as the issues of the virus we face now are showing us widely.
Sufferers of Fibromyalgia, Myalgic Encephalitis, and chronic Lyme, are the least understood, properly treated, and most maligned patients of chronic illness, precisely because experts have not been able to agree on the criteria for clinical diagnosis and the existence of chronic Lyme is seen to be a hoax by many medical types, simply because they do not understand it. In this way,the experiences associated with certain types of illness are more akin to be disparaged, controversial, patient-blaming and uncertain.
I have experienced musculo-skeletal approaches, pyschological (it’s all in your head/hysteria—mainly from female therapists!), been advised to drop out of university and become unemployed, by other professional women and been refused services employing touch at a fibromyalgia clinic by a racist physiotherapist who massaged all the white women in the rehab group. That was the last time I have gone to any group rehab referral. I have included the words of another Fibromyalgia patient, Emily, from her website at the end of this piece. If you read it, you will see it’s a tremendous amount of stress to be left to navigate on one’s own.
COVID19 needs to be well understood and we will see numerous causative explanations, attempts at treatment, and medical interventions. We will need to understand mutation, immunity, re-infection and long term impacts on the central nervous system if cytokine storms are indeed the response to severe or fatal infection. That’s a lot of new research! That’s probably because approximately half of COVID19 patients are men. This makes it unlike ME and Fibromyalgia which are seen as overwhelmingly female cohorts. And like Lyme disease which is also experienced by the population as a whole, the master narrative of COVID19, is most likely going to be one which utterly disregards the lived experience of patients and leaves people’s lives, finances, and self-esteem in tatters.
None of the descriptors or symptoms are meant to stand in for professional medical advice. They are merely descriptions of symptoms experienced by fibro patients and have been collected together. I also include some my own poetry and art on living with chronic illness.
is late. 40 minutes of shuffling and squirming while fatigue and lassitude course through my inflamed veins
then hailed, oh great goddess of the white robe, i come to make my obeisance. I offer you whole realms of symptoms, libations of bloodwork, i clean your floor with my tears
Yawning, you glance away, anything but that imagined malady, the hypochondriac sitting in your office, marring your chandeliered wellness center.
centering into the distance, at the cuboard away from the patient’s head, you begin to plan the day, your kids, your chores, your pills. You think there is no help. You say so, with your body, your unmet eyes, your screen like shield that distances from that voice that pleads for understanding and help.
Nothing is real. Not the non-diagnosis, not the diagnosis that is a non-diagnosis. not the deep scarlet of your secrets spurting into the purple, green, yellow, blue. pollock’s abstractions contained and solid in the not-real.
I come armed with lover/witness, research, anecdotes, reports, book titles.
No one is interested. I return broken into smaller pieces. Who will know the name of what i have become?Kaushalya Bannerji, 2018
Fibromyalgia is a syndrome with many symptoms. Each individual with Fibromyalgia will have some of the symptoms. A few people will have all of the symptoms, but not everyone with Fibro has the same symptoms or even has symptoms all of the time. Also, symptoms may vary from day to day, year to year, or even minute to minute for each person coping with Fibromyalgia and other common coexisting conditions as well. How confusing is that? Well, it gets even more confusing! Fibromyalgia patients have reported more than 200 symptoms that I have been collecting in a list for quite some time. Additionally, these symptoms are not meant to diagnose! My purpose in compiling them is to help people be more aware of what people with Fibromyalgia may be dealing with at any given moment and to help people with Fibro track symptoms, so that you have as much information as possible for your doctor to help you.
Informational Purposes Only – the content offered in this list is for informational and educational purposes only. This list of symptoms is not intended to be a substitute for medical advice, diagnosis or treatment. Please contact your doctor or professional healthcare provider for assistance with medical advice, treatment, and diagnosis.
Activity level decreased to less than 50% of pre-illness activity level
Cold hands and feet (extremities)
Delayed reaction to physical activity or stressful events
Dryness of eyes and/or mouth
Family member(s) with Fibromyalgia
Fatigue, made worse by physical exertion or stress
Feeling cold often
Feeling hot often
Low blood pressure (below 110/70)
Low body temperature (below 97.6)
Poor circulation in hands/feet
Recurrent flu-like illness
Shortness of breath with little or no exertion
Severe nasal allergies (new or worsening allergies)
Sweats 25.Symptoms worsened by air travel 26.Symptoms worsened by stress27.Symptoms worsened by temperature changes 28.Tender or swollen lymph nodes, especially in neck and underarms 29.Tremor or trembling 30.Unexplained weight gain or loss
“Growing” pains that don’t go away once you are done growing
Inflamed Rib Cartilage
Lumpy, tender breasts
Muscle spasms 41. Muscle twitching
Pain that ranges from moderate to severe
Pain that moves around the body
Paralysis or severe weakness of an arm or leg
Restless Leg Syndrome
Scalp Pain (like hair being pulled out)
Tender points or trigger points
“Voodoo Doll” Poking Sensation in random places
Feeling spaced out
Inability to think clearly
Numbness or tingling sensations
Photophobia (sensitivity to light)
Sensation that you might faint 63. Syncope (fainting)
Tinnitus (ringing in one or both ears) 65. Vertigo or dizziness EQUILIBRIUM/PERCEPTION
Bumping into things
Difficulty judging distances (when driving, etc.)
Directional disorientation 71. Dropping things frequently
Feeling spatially disoriented
Frequent tripping or stumbling
Not seeing what you’re looking at
Poor balance and coordination
Alertness/energy best late at night
Altered sleep/wake schedule
Difficulty falling asleep
Difficulty staying asleep
Extreme alertness or energy levels late at night
Falling asleep at random and sometimes dangerous moments
Light or broken sleep pattern
Muscle spasms/twitches at night
Sleep starts or falling sensations
Tossing and turning 93. Un-refreshing or non-restorative sleep
Vivid or disturbing dreams/nightmares
Blind spots in vision
Eye pain 97. Difficulty switching focus from one thing to another
Frequent changes in ability to see well
Night driving difficulty
Occasional Blurry vision
Poor night vision
Rapidly worsening vision
Becoming lost in familiar locations when driving
Confusion 106. Difficulty expressing ideas in words
Difficulty following conversation (especially if background noise present)
Difficulty following directions while driving
Difficulty following oral instructions
Difficulty following written instructions
Difficulty making decisions
Difficulty moving your mouth to speak
Difficulty paying attention
Difficulty putting ideas together to form a complete picture
Difficulty putting tasks or things in proper sequence
Difficulty recognizing faces
Difficulty speaking known words
Difficulty remembering names of objects
Difficulty remembering names of people
Difficulty understanding what you read
Difficulty with long-term memory
Difficulty with simple calculations
Difficulty with short-term memory
Easily distracted during a task
Feeling too disoriented to drive
Forgetting how to do routine things
Impaired ability to concentrate
Inability to recognize familiar surroundings
Losing track in the middle of a task (remembering what to do next)
Losing your train of thought in the middle of a sentence
Loss of ability to distinguish some colors
Short term memory impairment
Staring into space trying to think
Switching left and right
Transposition (reversal) of numbers, words and/or letters when you speak
Transposition (reversal) of numbers, words and/or letters when you write
Using the wrong word
Abrupt and/or unpredictable mood swings
Anxiety or fear when there is no obvious cause
Attacks of uncontrollable rage
Feeling helpless and/or hopeless
Inability to enjoy previously enjoyed activities
Tendency to cry easily
Irritable bowel syndrome
Stomachache 175. Vomiting
Weight gain 177. Weight loss
Decreased libido (sex drive)
Endometriosis 180. Frequent urination
Menstrual problems 183. Painful urination or bladder pain
Pelvic pain 185. Prostate pain
Urinary frequency 187. Worsening of premenstrual syndrome (PMS)
Allodynia (hypersensitive to touch)
Alteration of taste, smell, and/or hearing 191. Odor sensitivity
Sensitivity to chemicals in cleaning products, perfumes, etc. 193. Sensitivities to foods
Sensitivity to light
Sensitivity to mold
Sensitivity to noise
Sensitivity to odors
Sensitivity to yeast (getting yeast infections frequently on skin, etc.)
Sensitivity to pressure changes, temperature & humidity