I’m no optimist.
But there are some things in life that even the most pessimistic of us cannot deny. Living with fibromyalgia has been a life of pain and frustration yes, but it has also been a life of illuminating lessons.
There are things that we know as human beings, but knowing isn’t always enough to teach us gratitude. Some things must be lived through. We don’t always fully appreciate something until it is taken away. But the opposite is also true – and sometimes never having a thing teaches you its true value.
Here are ten things that fibromyalgia has taught me, including those things not to be taken forgranted.
1. Value Sleep
I’ve never in all my life gone to bed and had a night’s sleep (when I manage to get some) and woken up feeling refreshed. I could sleep for 3 hours, 8 hours or 14 hours – the end result is always the same – I awake feeling terribly exhausted. I couldn’t put a price on a good night’s sleep.
2. The little things matter
Like being able to shower oneself, comb one’s hair or make a meal… because there are days when I’m so exhausted that doing such supposedly simple tasks are so draining I must coax myself through each activity step by step. Oh and being able to remember things when fibro fog isn’t getting the best of us.
3. Never judge a book by its cover
Fibromyalgia is an ‘invisible’ illness. People are often quick to judge how ill sufferers are or are not based on the fact that we look healthy. They often do not understand the pain, exhaustion and cognitive impairments that lie behind the deceptive facade of our apparently well bodies. Sometimes I think it might be so much easier if I had a walking stick, anything physical to warn of this disability. Some fibromyalgia sufferers do, but anyway it’s wrong to assume someone’s not as ill just because there’s no external sign of it. As the saying goes, never judge a person till you’ve walked a mile in their shoes.
4. Even doctors are wrong sometimes and need to be challenged
I’ve been misdiagnosed before. A New York based doctor told me to ‘be grateful I wasn’t dying of cancer’… that I was living a normal life with fibromyalgia; That I’m healthy because I was able to attend university, and care for myself. I wanted to tell him how I struggled, fell asleep in most classes and grappled with processing the knowledge being imparted in lectures; Not remembering, often too occupied with pain. But he wasn’t listening. In the most respectful way I could possibly articulate it – living with fibromyalgia is anything but a normal life when one considers how everyday life is affected.
5. Cherish out days
Most sufferers have days when they are unable to go out because they’re too exhausted or crippled by pain. Blame it on FM that I’m no social butterfly when I’ve always wanted to be. When I’m able to go out, I soak in as much fun as I can with those I love.
6. Appreciate those who take your word for it
There’s nothing more upsetting or humiliating than knowing how you suffer, in the face of people dismissing you. Being told your symptoms are psychological or minor when you know they’re not. I am thankful for those who I don’t have to justify or prove my illness to.
7. Quality of life is important
Yes we are thankful that our muscles are not degenerating, and that we’re not terminally ill. But this doesn’t mean we have quality of life. People often take little things forgranted like being able to work. Most sufferers I know cannot work, and I’ve made it no secret that I only get by through pushing my body beyond its limits.
8. Painless days & effective painkillers
No explanation needed.
9. Gentleness is underrated
On the subject of pain, people with fm have increased sensitivity in the brain to pain signals, and things that should not be painful for a ‘healthy’ person are for us. Hugs, tickles, pinches and pokes… they can hurt us. I’ll never take it forgranted what it means to be gentle with someone & I’m appreciative when someone remembers to be gentle with me.
10. Support from other sufferers
At a time when fibromyalgia is still being wrangled over in medical circles, the support of anyone who takes us on is so invaluable. I know supporters who are dismissed by their families and friends and who bear the burden on their own. It’s taught me to appreciate those who show an interest. And who else understands the ins and outs of this controversial condition better than another sufferer? Whether it’s fibro fog, muscle pains or exhaustion, I can talk to other members freely knowing they understand exactly what I’m going through. Talking with other sufferers has also taught me not to doubt myself and what I’m feeling.