We can’t kid ourselves. Fibromyalgia is one of those complex conditions that can be really difficult to sum up adequately in a few lines and sometimes one conversation.
Remember when you first had to explain to your loved ones what it is and the myriad of ways in which you suffer? Well when you find that special someone (I’m still holding out on hope) no doubt you’ll have to do it all over again.
So to help, I’ve compiled a simple list of ten talks you’ll probably need to have with any prospective love you hope to be with in the long term. Of course this can’t cover everything but it’s a good start nonetheless. Good luck!
1. It’s you, me and fibromyalgia baby!
That’s right! As much as I don’t like it, we come as a package, ‘fibromyalgia and I.’ If I’m going to be in your life, fibromyalgia will be in your life too. The more your partner understands about how fibromyalgia affects your day to day life the better.
2. Don’t snore, twitch, scratch or do anything that I can hear or I’ll wake up
Ok, so maybe we’re not that fussy. But when we manage to fall asleep it’s a good thing and seeing that many of us are sensitive to noise (see number 10) as we either don’t ever get deep sleep or very little of it.
3. Sorry I may actually be up for most of the night
Fibromyalgia suffers tend to have sleep disorders like insomnia, sleep apnoea or restless leg syndrome. If we fall asleep we may be awakened several times during the course of the night. Oops…
4. I’m not lazy, just exhausted all the time
One of the main symptoms of fibromyalgia is chronic exhaustion which can be very debilitating. Many researchers say it’s second only to pain. For me it’s just as crippling, making it impossible to function properly without great challenge. This issue is linked to the lack of sleep and pain as well.
5. I hope you like nights in too
(See number 4) We go out but chronic exhaustion (think of how tired you feel when you’ve got a bad cold) means we’re not exactly social butterflies.
6. You might think it but no I haven’t fallen asleep in the toilet
Ok, it’s awkward for me talking about this as well so I’ll keep it brief. Three letters – IBS (irritable bowel syndrome)
7. Gentle with the hugs please
Hugs and everything else with gentleness please. We are hypersensitive to pain. Our central nervous systems don’t process pain in the way it should for healthy people.
8. Erm… I’m probably more forgetful than your Nan.
Fibro fog. That’s the name of my cognitive impairments that cause me to forget, get confused, have trouble communicating with language etc. Don’t be surprised if I accidentally put the milk in the cupboard and sugar in the fridge.
9. More patience and less kinkiness please (See number 7).
Um…this is embarrassing again. My body can be tender and achy so gentleness is key!
10. I’m not difficult, just hypersensitive
There’s that word again. Hypersensitivity in the central nervous system makes us sensitive not only to pain but to sounds, and smells. Simple everyday sounds like a blaring radio or kids crying and cleaning detergents or sharp perfumes may cause us pain or extreme anxiety and stress. Seriously.