The Morning Routine: A Herculean Task

unrefreshing sleep

Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) presents a daily battle of exhaustion, pain, and the struggle to function. Despite seemingly getting a good night's sleep, the mornings greet me with unrefreshed sleep/fatigue and crippling pain in my back, neck, and arms.

As I navigate the tasks of the day, from getting my children ready for school to tending to daily chores, the fog of fatigue and pain clouds every moment.

Waking Up: The Initial Battle

Waking up with ME/CFS is often misleading. You might think a full night's sleep would refresh anyone, but not when you're living with this chronic long-term health condition. The alarm goes off, and it's as though sleep never touched me. I open my heavy eyes to be greeted with immense pain and numbness; the familiar ache in my muscles, the stiffness in my joints, and a weariness that weighs down every thought. These initial moments set the tone for the day, presenting the first of many hurdles. I muster the strength to peel myself off the bed, knowing well the physical toll that's about to unfold. It's not just about getting up; it's about bracing myself for the day ahead, a day where the simplest tasks can feel like monumental challenges. This is the daily reality for someone with ME/CFS, where the battle begins before you even step foot on the ground.

Pain and Exhaustion: The Unseen Foe

The pain and exhaustion that come with ME/CFS are constant companions, invisible to others but all too real to those who experience them. This unseen foe takes many forms - a relentless backache, a throbbing neck, or arms too heavy to lift. The exhaustion isn't just a tired feeling; it's a deep, bone-weary drain that no amount of sleep can cure. As I go about my morning routine, each step feels like wading through mud. The effort to simply exist is immense, and it's a struggle that's often misunderstood by those who haven't felt it.

Having ME/CFS means managing these symptoms daily, pushing through the pain and fatigue to care for my family and myself. It's an invisible battle, but it's fought with the resilience and determination that define living with a chronic illness.

Getting the Kids Ready: My Morning Mission

Each morning, as I wrestle with my own discomfort, I'm faced with the task of getting my kids ready for the day. It's a mission that requires every ounce of my energy. I have to be present, ensuring my daughter has her breakfast, that her hair is brushed, her teeth cleaned, and to give her a hug as she heads out the door. These actions may seem small, but for someone with ME/CFS, they're significant victories. The pain and fatigue I feel can make these simple acts feel insurmountable. However, I push through because these moments matter. They are my daily affirmations of love and duty, and they are what drive me to keep moving forward. It's a delicate balance, caring for my health while also being there for my children, but it's a balance I strive to maintain every day.

Small Victories: Sending Them Off with a Smile

Even with ME/CFS, small victories can bring a sense of accomplishment. Standing at the doorway to send off my children with a smile and a wave as they head to school is one such triumph. It's a daily goal that I set for myself, a moment of normalcy in a life often dictated by chronic illness. While my body screams for rest, this small act of seeing my kids off becomes a source of inner strength. It's a reminder that despite the pain and fatigue, I can still contribute to their day positively. These victories are not just about fulfilling my responsibilities as a parent; they're also about reclaiming a piece of myself from the clutches of ME/CFS. Each morning that I accomplish this, sends a powerful message to both myself and my children: that love endures, even through the toughest challenges.

The Deceptive Nature of Sleep with MECFS

The Paradox of Sleep: Rest but No Refreshment

The paradox of sleep for someone with ME/CFS is one of the condition's most baffling features. You can lie down exhausted, sleep through the night, and yet wake up feeling as if rest had never come. The concept of feeling refreshed is foreign to me now. Despite my smartwatch confirming a full night's sleep, my body tells a different story. It's as if sleep, instead of being a time of repair and rejuvenation, is just a pause, offering no relief or renewal. This lack of refreshment from sleep is a hallmark symptom of ME/CFS, separating it from ordinary tiredness. It's a daily reminder of the peculiar nature of this illness, where even the most natural human processes don't function as they should. Understanding this helps me adjust my expectations and plan for the energy I have, not the energy I wish I had.

Final Thoughs

Understanding ME/CFS means grappling with the sleep conundrum. It's hard to explain to others how you can sleep for eight hours and yet feel like you haven't slept at all. The weariness is relentless and doesn't correlate with the hours spent in bed. This conundrum is a source of frustration and confusion not just for those of us living with ME/CFS, but also for loved ones. The quality of sleep, so crucial for health and well-being, is compromised, and no amount of sleep hygiene or relaxation techniques seems to break the cycle.

It's a daily struggle, trying to find restorative sleep that remains elusive. This aspect of ME/CFS isn't just about physical fatigue; it's also a mental and emotional battle as you try to reconcile the desire for rest with the reality of unrefreshing sleep.

About me

I am a married mother of four children, in my mid 40's. I run a small business and enjoy writing, which is why I blog. My blog focuses on my experiences of living with chronic illnesses and disabilities such as ME/CFS, spinal stenosis, chronic pain, and fibromyalgia.