When you’re living with not one but three chronic conditions, pain is front and center. Every minute of every day. Still, the worst symptom for me isn’t pain. It’s fatigue.
Health and wellness touch each of us differently. This is one person’s story.
People often assume that because I live with multiple chronic conditions — seropositive rheumatoid arthritis, degenerative osteoarthritis, and widespread musculoskeletal fibromyalgia — that pain is the worst symptom of my chronic illnesses.
Not necessarily always the case. Pain puts a damper on my life, for sure. Debilitating depression and anxiety also tag along with my physical ailments. But my archnemesis, both physically and mentally, is fatigue.
All humans experience the feeling of “tired,” but chronic fatigue is so much more than getting too little sleep or needing rest at the end of the day.
Chronic illness is a vicious cycle for anyone who lives with it. And while every case of chronic illness is different, pain and fatigue is what commonly connects us.
Chronic fatigue impacts you both physically and mentally. It doesn’t go away with rest. It’s far more intense than what I remember from my healthier (younger) years before chronic illness. I remember feeling indestructible, staying out all night drinking and dancing, then going to work the next day on minimal sleep and the faint aroma of whatever my poison was the night before on my breath.
Ultimately, I discovered that events, fun, and work don’t always match up. Neither does the cycle of chronic illness.
Today, I can do next to nothing one day and the following day need to stay in bed with an invisible blanket of fatigue weighing down on me like a ton of bricks. Even the most mundane tasks are exhausting and excruciating. I can barely handle even showering the next day after a night out. I haven’t had a drink in two years because it makes the fatigue worse.
Fatigue turned my world upside down. Here’s why…
Sometimes my pain is manageable, which means it’s there but it’s nothing I can’t handle — or my medications have kicked in for pain relief. But fatigue is impossible to manage with medication or treatment. I can’t put ice or heat on my fatigue.
People understand “I’m in too much pain to do that” much more easily than “I’m too tired to do that.” When I speak up about my fatigue being worse than my pain, it’s usually brushed off, while the focus is always how much pain I’m in. Having people, including medical professionals, not believe you when you say fatigue impacts your ability to do something just makes you feel alone, diminished, confused, and lost.
Fatigue annoys others, not just myself. I know I made plans with you two hours ago, but sometimes fatigue is sudden and without warning. I despise hearing “Just push through it” when my body’s fighting itself inside and people are only judging what they can see on the outside. You can’t see my fatigue until I’m asleep or missing, again.
I’m too tired to prepare food for myself — especially breakfast, which then makes me even more fatigued. Too tired to shower daily, let alone wash my face, or keep up with a regular beauty routine, which I once did religiously as an esthetician. At least my hair is healthier from not being able wash it every day. Thank goodness for dry shampoo.
Taking care of yourself turns into a full-time job and involves being consistent with strict diet restrictions of sugar, GMOs, and gluten (because they make you foggier) — plus rest, medications, treatments, and exercise. Ironically, to treat fatigue, I have to first make it worse by forcing myself to exercise to get my heart rate up, while not overdoing it or hurting my joints. Really, all I want to do is eat cupcakes.
Fatigue makes simple things like keeping up with laundry or dishes a constant struggle. I’m balancing my illness, work, parenting, self-care, and all the housework. That’s overwhelming even without illness. Fatigue makes me dream of having a maid or personal assistant.
As much as I love coffee, it doesn’t touch this fatigue. There’s no cure or fix for fatigue. I’ve spent more money than I’d like to admit searching for things that work, but I’ve still come up short — and tired.
When consumed by fatigue, watching the beautiful world move by without you feels like you’re trapped inside your own invisible prison. Fatigue makes me nervous to meet new people or have a social life. It forces me to question what I can offer to others in a relationship of any kind. How do I explain it? I’m terrified of forgetting what I was about to say, or not being able to process what someone just said, or of being too tired to participate.
Any parent knows parenting is hard and exhausting. The energy of a child and chronic illness don’t match, not even close. Fatigue makes me feel like a bad mother. I struggle at night to even have the energy to read to my 5-year-old son. The guilt is often unbearable, but he still loves me and has shown incredible empathy at such a young age.
My love for my child moves me a little faster than my usual arthritic speed on many days. Still, I realize it’s not about how much I did that day, but that I put effort into it. I recognize how difficult that is through chronic illness.
I know I’m fighting as hard as I can, and it’s OK if my body needs rest. I’ve learned to listen to its silent cries.
Eileen Davidson is a Vancouver-based invisible illness advocate and an ambassador with the Arthritis Society. She’s also a mother and the author of Chronic Eileen. Follow her onFacebook or Twitter.