Alisha Nurse is a proud alumnus of the University of Westminster, UK, where she completed her MA in International Journalism. She lives with a number of chronic health conditions including fibromyalgia, clinical depression, anxiety, & Complex Post-Traumatic Stress Disorder, and for much of her life has suffered from debilitating symptoms. Alisha wants to raise awareness to help people understand, and engage with all those whose lives are touched by fibromyalgia and mental health problems in one way or another, so they know they’re not alone.

You can find Alisha on Blog www.theinvisiblef.com, Facebook https://www.facebook.com/Alisha-Nurse-1492365807708297, Twitter https://twitter.com/AliApow

“You don’t look too well” my colleague said, commenting on my tired-looking eyes.
I wanted to tell her that I was mustering everything I had in me to be at work. Instead, I smiled, and gave her the short version. “Yeah I’ve been having a fibromyalgia flare.”

My exhaustion levels were higher than usual, I was in pain and my face and head throbbed constantly. My eyes started burning and watering from the migraine which easily lasted a few days. I could write paragraphs upon paragraphs about the all the things that go wrong when I’m having a flare, and how one symptom triggers or impinges on another. It gets that bad. But I rally on and push my body to the limits because as a single person living in a country with no family or other means to support myself, if I don’t challenge my own limits I won’t get by.

I’ve heard suggestions in the past that perhaps I’m not as ‘ill’ based on the fact that I’m able to work.

This has always made me mad, because I know the sacrifices I make, and the sacrifices many chronically ill people make in order to keep their jobs. There are times when I cannot get out of bed or cannot walk properly. I still go through periods where my limps swell and I can’t get my feet into my shoes. And there are mornings when I am rushing to catch the train, and I must grip onto a pole for dear life, because the world is swaying around me and I feel like I’d collapse at any minute.

People are sometimes empathetic, but I can’t repeatedly miss work because I live with a chronic pain condition. I work, because I have to.

Persevering through daily struggles

On this day, by the time I got to the office, I had to stop to catch my breath and affix my ‘mask’ before stepping through the office doors. After settling in, I propped the phone between my left ear and shoulder, to listen to my voice messages, and grimaced from an unexpected, sharp pain in the right side of my neck. The pain shot through my shoulders, like a lightning bolt. I caught the phone as it slipped from my ear. I rested it back on the handset and rummaged through my bags.

I dipped into my little medicine bag and popped a painkiller into my mouth. These painkillers were stronger than the ones I usually take. But after three recent, impromptu hospital visits due to severe neck/back pains, my GP gave me an extra prescription as a backup supply in case of emergencies. The last time it happened, I was in so much pain, I could not travel to the hospital.

I can understand why people might think I may not be as ill because I carry on the way I do. But the truth is that I suffer every day, sometimes one symptom is more prominent than others, or sometimes it’s several symptoms raring their heads simultaneously.

On this day I carried the exhaustion like a heavy rucksack. I’d been getting very little sleep and was so tired that I struggled to keep my eyes open. But I had to, somehow. When I thought I could no longer manage keeping my eyes opened, or focused on the task, I walked to the kitchen to get a hot drink.  On return, I continued struggling with concentrating. Fibro fog, the cognitive impairments I grapple with due to fibromyalgia, is worse when I’ve not slept and I’m this fatigued. So I decided to temporarily move onto another task until I felt better able to manage the task that required more concentration.

On paper, these words don’t sound half as hard as the day had been for me. But this is the reality of life with fibromyalgia. Every day is different, some days easier than others. I might have ten easier days followed by three very difficult ones or vice versa– I never know what will come. All I know is when the day unfolds, whether I’m ready or not, I must handle it. It almost always involves carefully managing every fine detail to ensure survival, so that I can live to fight another day.

Gentle Hugs

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Thank you Alisha for sharing your inspiring story!

If you have a story to share with our readers about participating in a clinical trial, overcoming adversity or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Contact us to get started sharing your story now!