I am constantly both in awe of and moderately frustrated by Lady M’s pain threshold and how she talks about it. Being a strong soul, she endures life threatening injuries with aplomb, migraines with mild annoyance, and the ongoing nerve storm of her fibromyalgia with hot water bottles, swearing, and threats of physical violence against anyone touching her.
I may be slightly exaggerating about the latter.
What this does result in is a situation where she is in so much ongoing pain that she tends to downplay how she reports it. You can imagine the complications this causes when she’s dealing with medical professionals.
A recent case of this came when her back muscles spasmed in one of our body balance classes. A paramedic was called as the class finished around us, and I had to remind Lady M to not use “The Jo Scale”. Instead she was to pretend to be a regular person. The number she was quoting on the 1-10 pain scale immediately jumped from a 3 to an 8.
Fortunately it turned out ‘merely’ to be a muscle spasm hitting her sciatic nerve rather than the prolapsed discs in her spine that she had a few years ago (did we mention those before?).
In conversation this morning, Lady M said that the pain hadn’t been so bad, it was just that she couldn’t move one of her legs and that had been the worst of it. I asked why she couldn’t move her leg, and she promptly responded: “because of the pain.”
Being half asleep, I asked if that didn’t mean that it had actually been the pain that was so bad, but again she reiterated that no, it was her being unable to move her leg. “Because of the pain” I added in helpfully.
By the time we’d gone round the circular conversation the third or fourth time, we were giggling with the silliness of it, but Lady M insisted I just wasn’t getting it. I was countering this with the argument that this was precisely why she had such difficulty getting doctors to take her seriously.
Many of Lady M’s worst disruptions come from her invisible illnesses. Between mental health, migraines and her newly diagnosed neurological condition, it can feel a wonder that she can get up in the morning.
Being unable to move her leg or sustaining physical injury, is far easier to explain and demonstrate to a third party, so perhaps I shouldn’t be surprised that this what Lady M has fixed on as a memory of the event. It becomes easier to relate the difficulties of the moment to other people with a symptom they can relate to rather than just a blanket “it hurts”.
While most people are empathic enough to understand the concept, it somehow becomes more real if there’s something to point to. It’s something we both find ourselves frustrated by, even between ourselves – so don’t feel bad if you have difficulty understanding someone’s situation. It’s, dare I say, normal…
You are very understanding of what it is like to be in our condition. If a bone isn’t sticking out or we aren’t bleeding we are not taken seriously and we tend to downplay our pain because facing it head on and giving it a number makes it so much more power. Indeed, if it is not visible random people tend to put on their “doctor hat” and diagnose you as fine. “Why aren’t you working???” And the doctors don’t see the pain so unless you’re crying and shaking, they don’t get it. I have learned to just let it all loose in the docs office, lay on the papered table and cry. F it. I need help. Please tell Lady M she’s amazing for getting out of bed for me.
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Oh I will, and it’ll be like the sun breaking through the clouds when she smiles 🙂
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😊
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