FLAREGIVING (v)- The act of caregiving while dealing with a Fibromyalgia flare.

FLAREGIVER (n)-A caregiver with a Fibromyalgia flare

I am a full time caregiver for Jack, who has dementia. I also deal with Fibromyalgia. Today I am handling both at once. This day has not been pretty.

I don’t often flare this hard. Over the years, due to diet changes and stress reduction, I’ve been able to achieve a certain level of remission, which means my flares have diminished and become more manageable. Until now. After fifteen days of dealing with pain and fatigue, it is obvious that I’m out of remission and will need to up my game. The old ways of staying well no longer work.

To be fair, I’ve had more stress, which is one of the main triggers for Fibro flares. I’ve been Jack’s primary caregiver for just over a year, and it’s not an easy job. Gruelling, at times hilarious, exhausting and hair-pulling—these are the ways I would describe it. It is also a thankless, heartbreaking task that rewards me in unexpected ways. But easy? No. If it looks that way it’s because I’ve had practice. A lot of practice.

Today, however, has been a real struggle. Not because of Jack, but because of the Fibromyalgia, that full-blown-flu, head to toe throbbing coupled with rock bottom exhaustion. The all over misery that would dissolve into tears if I allowed it. After fifteen days of functioning at this level, I would love to allow it, to drop in my tracks and howl. But I don’t. Jack needs looking after, and he no longer understands Fibromyalgia.

Jack doesn’t remember me being sick. (It is this lack of comprehension that makes everything about this flare feel worse.) He doesn’t remember doing chores when I had to rest, or giving me massages to help the pain. He thinks this is a new thing. He truly doesn’t understand why I can’t just ‘snap out of it’ or ‘shake it off’.  He doesn’t get that I need down time to recover. He doesnt give massages now. All he knows is that he needs my help RIGHT NOW. Nothing else makes sense.

“You were never like this before! What’s the matter with you?” he asks, repeatedly baffled by my inability to make this dragon disappear. “You need to snap out of it and get better.”

I would give anything to be able to just shake it off, to leave it behind me in the dust and move on without it. God knows life would be easier. It is hard enough being a caregiver, and hard enough having a flare, never mind handling both at once. It is harder still caregiving, managing a flare, and having a to do list that never grows shorter. Without a flare, I am up for the challenge and everything gets done. With a flare, everything still gets done, only I use twice the effort with half the energy. After fifteen days of flaring, I have no energy left. In this moment, I am too tired to care.

I am not one to complain, but today just sucks. Thanks to the Fibro misery, every request for help seems like the last straw. Being reminded of things that need doing feels overwhelming. All I want to do is hide in a corner and cry. In this moment, I am that tired.

But Jack needs feeding and looking after. There is laundry to do and meals to make, and a trailer that needs cleaning. Jack needs help finding things, putting dentures in, getting shoes on the right feet. He needs to know he will be taken care of. He needs ME.

So I take a deep breath and pull up my big girl panties once more. I power through the pain, the exhaustion that weighs me down, the ever present wish to just stop and crumble in a heap. I make myself do what needs to be done, because Jack no longer can. There’s only me now, and if I don’t do it, whatever ‘it’ is, it won’t get done. That is the reality, and today that reality sucks.

The good thing is, I’m still fighting. Just expressing how much things suck makes them suck a bit less. Once more, writing my truth has pulled me from the darkness and allowed some light in. My days won’t all be like this. This flare won’t last forever.