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How I Deal With the Unpredictability of Fibromyalgia

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Today my skin is burning all over my body and in some patches, it feels like my skin might even rip open. The burning crawls up my arms and legs. But today is not the worst. I have no itching or burning in my mouth, ears and eyelids. Today is a relatively good day.

I haven’t done anything differently. Like most days, I got up and showered, caught the bus to work, sat at my desk doing my job and so it goes. I’m thankful I feel lucid and didn’t confuse my words in a meeting.

I imagine others, as I do, constantly checking their symptoms online to see if what they’re feeling on a particular day is fibromyalgia-related. For me, mostly it is. It’s pretty incredible just how many symptoms are associated with this confusing and challenging illness.

Yes I know I’m not alone in my struggles and I’m keen to hear from others about what they do to ease their flare-ups, their bad days. Sometimes the pain is all-consuming. It tests my resilience. It frightens me. It makes me wonder what the future holds.

I worry about sleeping too much, or not enough. I worry about my concentration. I worry I’m irritable. But this is my now and my future, so what do I do to cope with this illness and its unpredictability?

Here’s my personal top five:

1. Accept I have an illness.

2. Don’t be too hard on myself if I can’t do everything I planned to do any given day.

3. Listen to my body. If it hurts, don’t push myself where I can make things worse.

4. Remove myself from stressful situations.

5. Monitor my pain in a journal, to be able to report back to my doctors.

I know this may all seem simple and obvious, but it’s how I’m coping.

It’s also extremely important for me to share how I’m feeling with friends and family, so if I’m not having one of my good days, they will understand even if I cancel on them at the last minute.

Let’s hope now there are more good than bad!

Originally published: April 27, 2018
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