We’re barely two-and-a-half months into 2019, and already it’s shaping up to the be another dumpster fire of a year.
My fibromyalgia has been particularly bad lately: all of my joints ache constantly, with the worst pain in my fingers and elbows, making it very painful to type/write when it’s flaring.
I’ve tried to figure out how to describe the pain, but it’s such a subjective thing. My best effort is: you know the achiness you feel with a flu? Well that’s kind of like the baseline pain on a medium to bad day. The pain I feel just sitting doing nothing.
But when I actually move my joints (including the knuckles in my hands) it gets worse – almost feeling like the bones are rubbing against each other. (As an indicator of how bad things are: last week on a medium-pain day, I had to get one of my 7-year-olds to open a jar for me.)
Some days it’s bad enough that I can’t even try to work – all I have the energy to do is lie on the couch with a heating pad. Other days I can manage to type for a while in the morning, but have to give up by noon.
And some days it’s not the physical pain that stops me so much as the mental strain of dealing with it – I’m just so exhausted from hurting all the time that I can’t focus enough to think coherently (let alone write coherently).
Of course, all of these have the wonderful effect of making me feel guilty for not working, which stresses me out, which makes me feel worse, which makes me unable to work, which…well, you get the idea.
I don’t have a solution.
My doctor says there are no good treatments for fibromyalgia (the main pain pills he suggested don’t really work for me – as I discovered when I tried them for my migraines).
I feel so useless on my fibro sick days. Like I should be able to push through somehow and work anyways. Like I’m failing my family or myself by doing nothing except sleeping, reading, or watching TV. But just because the pain is caused by misfiring synapses in my brain, it doesn’t make it any less real.
I should probably look on the bright side. Fibromyalgia isn’t progressive – while there is a cumulative effect to the pain (the longer a flare lasts, the harder it gets to push through it) my joints aren’t actually breaking down, they just hurt.
And the pain isn’t every single day – just everyday during a flare. I can still write and work when I’m feeling good.
I’m also lucky to have a family that supports me.
But some days I just wish I could get my old life back.
Of course, that’s not going to happen. Short of receiving an overnight visit from the Good Health Fairy, this is my new normal.
So I have to find a way to work with it.
One of my Twitter acquaintances who was just diagnosed with fibro got a list of some of things to help her pain (including compression gloves and a special knee rest for sleeping), so I may try a few and see if they help.
I also think I’m going to try adjusting my diet and see if that helps (not particularly fun, since I’m already on a restricted diet for another health issue) but if it lessens my pain, it’ll be worth it!
And maybe I’ll try and adjust my daily schedule as well. My pain tends to be a bit less in the morning (well, after my initial half hour or so of morning stiffness – aka waking up feeling like the Tin Man after a night in the rain), so I can try writing immediately after breakfast, until the kids get up.
Being chronically ill sucks. Especially with an illness that’s invisible. But I’m doing my best to adjust and struggle through – because, well, what other choice do I have?
I wasn’t even sure if I should post this. Whether it would just come off as a bunch of whining. But I know other people are suffering too and I thought if my post could help encourage someone, then it’d be worth it.
(Or if any of you have fibromyalgia too and have any advice to offer in the comments, that would also make it worthwhile!)
So, that’s what’s going with me. I promise next week’s post will be writing-related.