Fibromyalgia Diagnosis – Grieving the Life I Once Lived

golden gate bridge in san francisco at sunset with text overlay
golden gate bridge in san francisco at sunset with text overlay

There’s a moment when you’re sick when a line is drawn in the sand; a line is drawn across your life. On one side of the line lies the life you once had. On the other side sits your future. That line was drawn for me last week. And it came in the form of a diagnosis of fibromyalgia.

It’s strange to see this line when you’ve been sick for years. In that moment of diagnosis nothing has really changed. I’m no more sick than I was yesterday. I’m no more sick then I’ll probably be tomorrow. The positive people around me come bearing gifts of platitudes – ‘at least you know what it is now’. And I’m sure in time I will come round to this opinion, too. But not today. Today, deep within me, it feels like everything has changed. Now my sickness has a name. Now my sickness comes with the words ‘no cure’.

When you’re in chronic pain, the words ‘no cure’ are terrifying.

Today is the last day of February. It’s 4 p.m. and despite the generally lightening days, it’s already going dark outside. It’s raining and today I’m relived, because it means I don’t have to deal with the sadness of knowing that I couldn’t go out even if I wanted to. I don’t have the energy to drag my body past my own front door. Today, washing and feeding myself have taken up more energy than I have. Today, I have barely managed to take 1,000 steps. Tomorrow will likely be the same.

Three months ago I was in San Francisco. I’d managed an 11-hour flight and I’d already skipped through five cities across three states. I was with my dad and each day we pounded the city pavements, tackling the hills, hitting 30,000 steps a day. Each night I tucked myself into bed, exhilarated, a cracking smile filling my face. I felt strong. My body felt strong. My mind felt strong. I was living the life; my life – the one I wanted to live, full and glorious and complete with grand plans for the future. Plans I fully expected to keep.

It blows my mind that there exists these two such very different versions of me: the version of me that exists in the midsts of a full-blown fibromyalgia flareup; and the version of me when I feel well.

My current flareup started mid-January and has been going on for six weeks. Right now, there isn’t a hint or promise of it ending. I don’t remember feeling this bad since my first flareup. Except, back then – five years ago – I didn’t know what it was. I didn’t know it was the first punch of fibromyalgia. Back then, I hoped it was a one-off illness. Like most illnesses, I thought that if I rested or took pain pills or saw the doctor, or all of the above, I’d be cured. Sooner or later, at least. Back then, I didn’t know these flareups would be mine for life.

In fact, I didn’t know that my illness had no cure until last week when I sat in the office of the kind, gentle rheumatologist as she drew that line in the sand and across my life.

Since then, I’ve thought a lot about that version of me that walked the hilly streets of San Francisco just a few months ago, and I can’t help feel like she died in the doctor’s office last week.

I know that’s ridiculous by all objective measures. I know that once this flareup is over, I can get back to being her once again. Hopefully. Slowly. Carefully. Gently. In time. Maybe.

I know that now I have a diagnosis I can better focus my limited energy on doing the right things to get well and reduce the symptoms of this pervasive illness.

But not yet. Not today. Today I grieve. Because I’m allowed to. I’m allowed to take a moment to look back over the life I have lived so-far; the life filled with travel and good health – health that I once took for granted – and mourn their passing.

Today, I watch the rain. Today, I torment myself with photos of me smiling in the Californian sun.

Today, I wipe a tear from my eye.

Tomorrow, I’ll try again.

Want to read more?

God, I’m Tired – Pandemic Fatigue

When Mother’s Day Is A Sad Day

10 Self-Help Books I Wish I’d Read Sooner

How The Fu@k Do I Meditate?

I’m always up for a chat – leave a message in the comments below and I’ll reply when I can.

Fibromyalgia Diagnosis – Grieving the Life I Once Lived

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