Fibromyalgia Awareness Day 2014

Fibromyalgia Awareness - A Life Less Physical

Today is National Fibromyalgia Awareness Day, and I’ve been thinking all day about how best to blog about it in a way that really helps people to understand the condition and go on to spread the fibro word.

The first thing I did was search for images and logos from reputable organisations that you might have seen elsewhere. You know, brand recognition and all that, trying to reinforce the message. Unfortunately, this is the best the entire world wide web could offer me. It’s a lot of purple isn’t it? Not only did I not find one good fibro image, I managed to create a list of my top five worst. (I know, I know, I can create a list for anything.)

In the mean time,  here’s a little wordle I created taking text from the NHS and Arthritis Research UK websites. Some of the most common words are fairly obvious, but perhaps there’s some things you didn’t know were linked to fibromyalgia.

Fibromyalgia Wordle - A Life Less Physical

So what’s the best to raise awareness about fibromyalgia? I reckon it’s to share real examples of how it affects people day-to-day. Here, at my most honest, are the top 20 difficulties that comes from having fibromyalgia.

I can’t…

#01: Lift anything; ie. a heavy bag, a full kettle, a saucepan, a child

#02: Use strength or grip; ie. to open a heavy door or round doorknob, to chop an onion, tighten a belt

#03: Climb, stand still or walk far; ie. up a flight of stairs, up or down a hill, around a museum or on public transport

#04: Look up or down for prolonged periods; ie. at a TV in the pub, when washing up, from the far left/right of a stage

#05: Prolonged movement of my arms; ie. to get dressed, wash and dry my hair, to change bedding

I need to… 

#06: Stay warm and dry, avoiding cold or damp weather; it makes my joints stiff

#07: Avoid bright lights or a sudden change in lights; it causes sharp headaches and a painful neck/upper back

#08: Relax; stress and exhaustion triggers a flare up

#09: Do gentle exercise in spite of pain; there’s a risk my muscles will start to waste away if I stop using them

#10: Talk to other people; this is an invisible illness and I know people can’t help me if I don’t tell them

Every day I…

#11: Take medication

#12: Sit with a hot water bottle or heat pads

#13: Forget simple words when trying to articulate myself

#14: Experience severe pain in at least one area of my body

#15: Have to change something; often plans need cancelling or pain needs managing which impacts something else

I commonly experience… 

#16: Some form of anxiety

#17: Stomach cramps and IBS symptoms

#18: Sleep difficulties, with frequent and horrific nightmares

#19: Exhaustion

#20: Irritability

i hope

I hope this doesn’t seem like a pity party, and I hope that there’s something from this list that you can share with someone who has never heard of fibromyalgia.

If you or someone you know has fibromyalgia, I hope you can recognise that whilst there are many awful things about the condition, there are still many things you can do. Check out my ‘Activities’ category on this blog for a list of fibro-friendly things to do for a bit of inspiration.

I hope people with fibromyalgia find an outlet to speak out about their own symptoms and experiences. Everybody has a different experience of fibromyalgia, and we all cope and struggle with different things.

I hope that by this time next year, fewer people respond to “I have fibromyalgia” by saying “fibro-what?” I want that diagnosis to mean something.

In the mean time, those of us in the know will keep trying to make fibromyalgia visible whilst – let’s be honest – secretly wondering if we’ve been misdiagnosed.

Advertisements