My Spoonie and me.
Back in September 19, I was asked to write a piece for FMAUK on the impact a Fibromyalgia diagnosis has had on Ness, and on our relationship. I thought I’d share it with you here:
When Nessie and I met, she was a bundle of energy and adventure. In the [nearly 4] years since we got together, I have watched her have to drop out of university, leave a job, struggle with chronic pain and fatigue, and essentially go from being a trainee circus performer to virtually bed bound in a matter of months.
It took us nearly 18months to find a doctor who was sympathetic and open to investigating fibromyalgia as a diagnosis.
Ness is 24. Fibromyalgia has had a huge impact on her life. She should be out with friends, walking the dogs, finishing her degree, going to work, getting to do things she wants to do. Instead, 9 times out of 10, she’s at home.
Having said that, Ness is a stubborn one. Which I am both immensely proud of her for, but often worried and, sometimes, I’m frankly frustrated by… I LOVE that she won’t let fibromyalgia get in the way of her going to things she doesn’t want to miss out on, but sometimes we both know that it’s not a good idea. I guess it’s a learning curve for both of us to work out where the limit is, and when the limit can be pushed.
I am incredibly fortunate that I’m a freelancer. I often work from home, or work for short and an intense periods. This means that most of the time I am able to be at home to “care” for Ness. (I don’t really consider myself a carer, I’m her partner, we are a team, and therefore I do what I hope anyone would do for a loved one).
Caring, for me, means trying to make sure we are both fed and watered, and that the laundry pile isn’t taking over so much of the house that it looks like we’re auditioning for a tv show about hoarders. I am the chef, the shopper, the occasional cleaner (we’ve recently employed someone to come and do that for us), the long-distance driver, the alarm clock, the fetcher and carrier, the “hold on to me so I don’t fall over getting out of this bath” and the “stand in front of me so I don’t fall down the stairs”. I am the wheelchair pusher on longer excursions. I am the sole income, and the dog walker.
I don’t consider this caring, I consider this what one would do for one’s partner if they need it.
I try not to get frustrated by Ness’ condition. It IS frustrating for sure, but I’m not the one in constant pain, borrowing spoons from the days we haven’t had yet in order to enjoy a day out. I’m not the one who could sleep all day and still not feel rested.
The most frustrating thing for me is that there is essentially nothing I can do to make it better for Ness. All I can do is make the environment around her as easy and as comfortable as possible both inside and outside the house.
The problem with Fibromyalgia, in my relatively inexperienced opinion, is that on the surface it’s invisible. You don’t see Fibro sufferers on bad days. You see them when they’re having a “better” day.
How can we raise awareness of Fibromyalgia? Talk about it. Be honest about what a difficult and unpredictable condition it is. I think (again, I am NOT the voice of authority) that a lot of spoonies are prone to putting on a brave face for the sake of not being a nuisance, or not wanting to “ruin” the nice day out. I think the best way to educate people is to be honest about what’s going on. Tell them the stuff you’d probably rather they didn’t hear about. I completely know that that is a really easy thing to say and not always an easy thing to actually do, but when you can’t see the problem, sometimes it needs to be spelled out.
To anyone who suffers with this horrible, debilitating condition and all of you who love and care for someone with Fibromyalgia, you’re all brilliant and remarkable humans.