I remember being a teenager, staying overnight at my best friends and not sleeping more than four hours; and as a young adult going out dancing with my friends until 2 a.m., needing to be at work the next morning by 7 a.m. I thought I was tired then. A few years later, I seriously thought nothing could make me feel more tired than a baby who refused to sleep. One night my husband’s Gramps was staying over. He climbed the stairs at 1 a.m. to hear our daughter crying from her room and to see me at the kitchen table. “I am so tired,” I cried.
Nine years later, I was wishing I was getting as much sleep as I did with that sleepless baby. I had gone months without sleep due to physical pain and emotional stress. I fell into the viscous cycle (no sleep=anxiety/depression=pain) = insomnia.
I went to the doctor in tears. I was just so very tired. After running a lot of tests and finding nothing contributing to it besides the fibromyalgia, I was sent to take a sleep apnea test. The results showed what I already knew. I did not have sleep apnea, but I was diagnosed with sleep maintenance disorder. This meant that even though I was sleeping, I was never entering the deep REM stage of sleep, causing me to never feel refreshed when I woke up.
I was willing to try anything to help me sleep. I started adding water exercises to my daily routine. I tried acupuncture, bought an ergonomic memory foam mattress and began practicing good sleep hygiene. Before this, I didn’t even know there was such a thing.
What is good sleep hygiene?
Maintain a regular sleep routine. Go to bed and awake at the same time every day.
Exercise regularly before 2:00 p.m.
Limit caffeine intake.
Do not read or watch TV in bed.
Bathe or mediate prior to bedtime.
Keep your room at a comfortable temperature.
Keep the room dark and/or wear a sleep mask.
Despite the fact that I was now able to sleep better, exhaustion became my new enemy. How can someone sleep 12 hours and still wake up exhausted? I was told that I was tired “because I slept too much.” It didn’t seem to matter whether I slept four hours or 12 hours, was active or resting all day or a combination of activities and resting. I was always tired and once 3 p.m. hit, my mind and body were done.
I was diagnosed with ME/CFS/SEID (myalgic encephalomyelitis/chronic fatigue syndrome/systematic exertion intolerance disease).
In addition to fatigue, one or more of the following symptoms are common:
Cognitive difficulties – poor concentration and short-term memory, reduced attention span, difficulty planning or organizing thoughts, difficulty finding the right words to say
Sleeping difficulties – early waking, insomnia, disrupted sleep/wake patterns
Pain – muscular and joint
Dizziness, nausea and heart palpitations
It is hard for others to understand how horrible this disease is because we don’t look sick. A good way to describe ME/CFS/SEID is to imagine having body aches and exhaustion like the worst flu you have ever experienced – only it doesn't get better. It is a debilitating condition that has a serious impact on a person’s quality of life. There are times when it has left me feeling alone and isolated. I have one friend where I live that hasn’t given up on me. Even though I have turned her down so many times, she still asks me to get together.
This year I cancelled my trip to my parents for Father’s Day. I knew that the long drive would be hard on my body. It would be too tiring and the following week would be difficult without the weekend to rest. Our spouses and children often resent us for not being able to do the things we could before, and they are often expected to do more. I have to plan to do things when I am least tired. I go grocery shopping in the morning when my family will be home to carry the bags up the stairs. It takes me all morning to shop, put away groceries and rest before I can do anything else.
Those who live with ME/CFS/SEID have to learn to accept the changes it will make to your life. I have accepted it but I don’t like it and it still bothers me. My house used to be clean and picked up. Now laundry will stay unfolded in baskets for days before it is put away, and dirty dishes will pile up in the sink waiting for the dishwasher to be unloaded.
This summer I was looking forward to my new job's hours. I would be working four hours in the morning, giving me the opportunity to work in the flower beds and do my writing and house projects, all while enjoying the beautiful sun. I know this isn’t the rest my body needs, but I thought if I created a “daily routine” it would be perfect. My plan was that after working my four hours, I would go home and take a two hour nap, allowing me three hours of time to work on my to-do lists before making my family a “good” home cooked meal.
It has been three weeks now following my new schedule, and so far I have been unsuccessful in accomplishing my to-do’s. In addition, the changes have not made a difference. In fact, my tiredness has increased, as well as the pain in my sciatica, IT band and arthritis.
One suggestion was that I eliminate napping and to try working in 15 – 30 minute intervals, breaking up my afternoon into shorter work periods balanced with equal amount of rest time – remembering to pace my activities and not overdo it.
It felt like I was back when I was first diagnosed with Fibromyalgia. I feel that I am taking good care of myself. I use a mix of medical care, daily self-care and support. Included are prescription medications, vitamins, acupressure, chiropractor, light therapy, tens unit, ice packs, good sleep hygiene, warm Epsom salt/lavender baths and avoidance of sugar.
I called my friend/mentor Celeste Cooper, telling her of my increasing non-restful sleep and fatigue. She said, “Whatever it is, this is not normal. It needs to be investigated. It is also possible it is not ME/CFS/SEID. Contact your doctor and discuss the severity of your symptoms. There are many possibilities such as Hashimotos, postural orthostatic tachycardia, neutrally meditated hypo-tension, Epstein-barre virus – or it could be something else completely or a combination of problems. The most important thing to remember is to not sweep all of your health problems under the fibromyalgia rug.” (For more information on fibromyalgia's overlapping conditions, see Overlapping Conditions)
Gotta love the Fibro life! Just when you think you have it figured it out, it throws you a curve ball and you are back seeking answers.
“For there is nothing quite so terror-inducing as the loss of sleep. It creates phantoms and doubts, causes one to questions one's own abilities and judgement, and, over time, dismantles, from within, the body.” – Charlie Huston, Sleepless
Melissa Swanson is a chronic pain patient, advocate, and author. Through her Facebook page, she offers positive encouragement, medical information, resources, and support to 10,000+ fibromyalgia and chronic pain patients. In addition to her own blog, Melissa has been published in "Living Well with Fibromyalgia" and the NFMCPA "Advocate Voice."
She is a graduate of the 2014 Class of Leaders Against Pain Scholarship Training sponsored by the National Fibromyalgia & Chronic Pain Association and is a member of the Leaders Against Pain Action Network.