When you’re feeling good, write advice for your hardest days

Acute hepatic porphyria is characterized by episodes of intense pain and fatigue, and then windows of feeling decent. In the six short years I’ve managed the disease, I’ve noticed that my symptoms come in cycles. I’m currently in a period characterized by prolonged stretches of fatigue.

I’ll remember these past few months as the winter of hibernation. I didn’t leave my house much, not because of the weather (it was actually a pretty mild winter by Iowa’s standards), but because I was in bed. It seemed like I spent a lot of November and December either in bed or in pain. So in January, I decided to test that assumption.

I began to track three types of days: those I spent in bed, those I spent in acute porphyria pain, and those when I felt all right. I already knew a stretch of bed days always followed times when I was in intense pain, but last January was the first month I kept records. Out of 31 days that month, I spent 11 feeling decent, 10 in acute pain, and the remaining 10 in bed.

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A day or two in bed doesn’t mean I’ll sleep and then start feeling better. These weren’t relaxing hours spent reading books or watching movies. These days came in sets of three to five at a time. The longer the stretch, the harder it was not to question my very purpose in life. These were days to endure, to survive. The fatigue would settle over me like the weight of an animal that sucks the life force out of my body. Was it a physical response to the trauma and exhaustion of managing intense pain?

Sometimes I’d sleep for days. Eventually, I’d no longer be tired, yet my muscles were too weak to get out of bed. The thought of an easy, mundane task like putting away the neatly folded laundry that my partner, Michael, had stacked for me on my dresser seemed an impossibility. I didn’t eat or drink much. I didn’t answer my phone, texts, or emails. I gave monosyllabic responses to Michael’s questions. I couldn’t access critical thinking or make plans for a day when things might be easier.

Visiting the clinic for fluids or a medication infusion was a herculean effort that I planned the entirety of my day around. I needed to make an appointment, coordinate a driver, and find someone to push my wheelchair.

Following the advice of past Claire

I’ve entered a room for which there is no lock, no puzzle to solve or task to complete, only a rough time requirement. My only choice is to wait it out. I could be trapped within it for three days, five days, or even longer. Any more than three days and the depression sets in, snapping around my bed like the dome of a snow globe.

The shame from spending days in bed can become suffocating. I don’t have the emotional capacity to check social media or the news, so I feel isolated. But I do rely on my phone’s “do not disturb” setting, because each notifying chirp provokes anxiety and distress. I start to gaslight my body and doubt my worth.

From the outside, I’m managing my care, resting in the snow that’s falling lightly around me. But inside, I’m a prisoner. I cannot access self-compassion or gratitude, nor can I recall how easy life can be during the 11 days in January when I felt pretty good.

That’s why I recently developed guideposts and mantras to refer to on my hardest days. I keep this handwritten, bulleted list folded up in a basket next to my bed so I can read past Claire’s advice when I need it most.

Guideposts for days I struggle

1. Only do what you have to do. (What can you cancel today?)
2. Tell Michael you love him.
3. Be honest with Michael about where you are at.
4. Show yourself love and compassion today.
5. Ask for help.

Mantras for days I struggle

1. You are doing your best.
2. Rest is the most important thing.
3. Your health comes first.
4. It can wait until later.
5. I love and accept you just the way you are.

A third of a month is a long time to live under the dome, but words from a healthier version of myself are powerfully healing.

For anyone who’s dealing with intermittent illness, I recommend writing guideposts for your hardest days. Keep them by your bedside and pull them out when the hardship of illness feels overpowering, for when it seems like no one else could possibly understand. You may be surprised at how impactful your own advice can be.

Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.