The Fibro Symptom That Scares Me Most

Reprinted with the kind permission of Sarah Borien and A Life Less Physical

If you suffer from chronic pain, you’re used to suffering from a myriad of symptoms. One day to the next, you experience something different to the day before and you adapt and respond as necessary.

Pain doesn’t scare me, fatigue doesn’t scare me. Numbness, heart palpitations, migraines and nausea don’t scare me. But one thing does. One fibromyalgia symptom makes me so uncomfortable and nervous that I feel scared and a little sad about my health. Even though I know that fibromyalgia isn’t a degenerative condition, there’s one thing that feels like it’s deteriorating. My driving.

I’ve been a driver since the age of 17. I always wanted to drive; as a kid I had a toy steering wheel which could be stuck to any wall or door in the house, I played bus driver all day long, and I remember sitting on my parent’s lap and holding the wheel as the car crawled down the driveway to a stop. When I turned 17 I got driving lessons for my birthday, and as soon as I passed my test, I bought a car for £100 from one of my teachers at school. It was a heap of junk but I didn’t care. It was mine.

I’m now 32 and I just don’t understand people who can’t drive. I don’t care how good your public transport network is, why would you not want to drive?! I love the flexibility, the freedom, the options. I love nothing more than driving; it’s never a chore, it’s always a joy.

Last year my love of driving disappeared. It was becoming more and more painful and I eventually admitted defeated and accepted that after ten years of driving a manual, I could no longer cope with changing gear. My pain was too bad and I spent too many days unable to control my car. I gave in and bought an automatic, expecting to hate it, but it absolutely changed my life. I rediscovered my love of being in the car, and I went back to driving at any chance I got.

Then, last year, I was busy at work and doing a lot of driving. It was starting to take its toll and I had a series of scary moments where I fell asleep at the wheel; twice on the motorway and once on a country road. All three experiences scared me and after a while, I realised I could no longer commit to a three-hour car journey. It happened a couple more times before I eventually accepted that an hour is my limit – any more and I just can’t be sure I’ll stay awake.

Recently I’ve been pretty proud of myself. Once a little girl racer, I have slowed down my driving, I’ve stopped driving long-distance and I only ever drive automatics. I like to think I’ve worked with my illness, rather than against it.

But last week, I was driving at night and I felt a new level of fear. It was dark and raining and for the third time in a month or so, I couldn’t focus on the lights around me. I wasn’t sure what I was looking at, and I swerved as I thought a car was coming in to the side of me at high speed. It turned out to be nothing more than a reflection but for a moment my heart stopped.

I thought nothing more of it until it happened a couple more times; once after a long, hard day and once in extreme rain and bad weather. I justified the confusion as exactly that – bad weather and fatigue, but deep down I feel like something just doesn’t feel right.

I wrote this article a few years ago which looked at whether or not fibromyalgia is a progressive, degenerative condition like Multiple Sclerosis. Science says it’s not, but sometimes it feels like things are getting worse. It feels like some of the symptoms are less manageable than they were, and that can be difficult to cope with.

Given the choice, I’ll always choose to drive instead of drink. I’ll always volunteer to be the driver on group holidays, and I love driving in challenging conditions. The majority of the time things are absolutely fine and I’m still as confident as I always was, but I know I need to keep an eye on it. I need to be confident that it hasn’t got any worse.

I like to think I can cope with most things, but of all the things that fibromyalgia can throw at me, I’m just hoping it doesn’t take away my independence.

Sarah Borien lives in a country cottage in Oxfordshire with her husband and their two cats. She has had fibromyalgia since 2009 and is passionate about finding and sharing new coping strategies. Sarah authors her blog, A Life Less Physical, and has written for New Life Outlook (Fibromyalgia).

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One thought on “The Fibro Symptom That Scares Me Most”

  1. skubik11 says:

    I’d like to thank you for posting your article. Having 5 immune issues, I have always felt “picked on. It seems that on a daily basis, my pain level climbs to an all time high and of course never goes away. I would have to agree with you that driving is often a huge challenge, and at times very fearful. Sometimes I feel like my memory is in hiding. I tried walking everywhere I went but found I suffered for days after that trip.I I realize that no immune issues ever go away, it’s a life-long illness, and the best thing we can do is accept it an learn how to live with it. My first issue Fibro came in 2007 and was full-blown from the start. It seemed like every year after that I was blessed with yet another one. I do attend Pain management classed weekly and the support is amazing. I call myself a “Fibro Survivor” because I’ve managed to make it through a tremendous amount of pain daily and live to tell about it.

    Thank you

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