To My Fellow Fibro Warriors Struggling With the Summer Heat

My dear fellow fibromyalgia warriors and my companions who struggle with depression: I thought of you today and thought I’d let you know someone is thinking about you.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

I have been sitting in my flat for four days with my feet up due to swelling, grimacing at my toes that look five Richmond sausages on each side. It may seem funny, as I have beautiful feet, neatly polished nails and the cracks have been smoothed out for summer – not of my own doing, though. I cannot wear sandals to show off my feet as I did once before. I no longer wear flat shoes due to the change in my arch and oops – forgot I have a full on flare, tendonitis, joint pain, swollen muscles and my back and hips refuse to cooperate.  The barometric pressure is messing with my sinuses, so anti-inflammatory medication had been added to my already existing cocktail of drugs.

Does my medication fry my brain or is my chronic fatigue made worse by the heat? They say the heat is good for our bones. I disagree on that; dry relentless heat is not helpful – there’s no moisture. I have thought about sitting in my bathtub in cold water, but my joints wouldn’t take it.  Additionally, my joints in my hands are swollen and my nerves are singing a different song of a dull, aching pain.

The top of my neck is radiating pain. I whisper, please don’t do this today, I am begging you. I am the neck whisperer. I have a pounding in my ears. I have been able to hear my heart beat for the last three weeks. Is this normal? And what is it? My GP just dismisses it as fibro.

I think of you all as I write my sad letter, as I truly hate fibro. Sometimes I even think it’s a different disease, but all the tests cannot give answers.

I have no appetite with the heat, so ice cream and a blueberry shake it is, as standing over a hot cooker is impossible today.

I am sad today, but remain hopeful that one day I’ll be able to manage this life. I am thankful today my brain settings are functional enough that I can still write effectively. I am thankful that each day we wake up and keep trying. I am thankful for the spoons and my affirmation “one day at a time, one hour at a time, one second at a time.” It allows me to live in the moment to appreciate even that relentless heat to warm my bones.  To appreciate the farmer who brings me blueberries and every other fruit of this season.

I am thankful most of all that I don’t travel this journey alone. I may not see you and you may not see me, but somewhere high up in the stars and the million galaxies our thoughts meet. For that I am grateful.

Stay safe, keep hydrated, wear loose clothing, avoid the direct sun and get a tub of Ben and Jerry’s. Keep your feet up and don’t do what I am about to do – cry at my Richmond sausage toes.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via 00×00.