As someone with fibromyalgia severe enough to have me on a walker or bed-bound, it took ten years (beginning about age 15) for diagnosis because I was told I was being dramatic or just needed to try harder. In that time, with no alternative, I worked and suffered through numerous intense manual labour jobs.
Because I didn’t listen to my body, I have long term damage that can’t be repaired. I was only taken seriously when I ended up in hospital for a week about two years ago. It should not have had to go that far.
I’m telling you, one spoonie to another:
“Push through the pain,” isn’t an option when your body trying to tell you something.
Chronic pain (even without a diagnosis) is real and serious and needs to be treated as such. I hear you, I believe you.
I used to wear cute clothes with super cute shoes like heels and boots and flip flops. Now I don’t even own any cute shoes because I know if I wear them I’ll be in major pain (or in the case of heels not even be able to walk while wearing them or later. )
Before I was diagnosed, my doctor hugged me and told me she would rather have cancer than have fibromyalgia.
Then, years into my battle against several illnesses, I became so frustrated because it seemed like people around me were more sad about the possibility of me ending my miserable life than they were about me actually suffering so much in the first place. I felt like it was so selfish for them to expect me to hang around sick and in pain just because they didn’t want to be sad about me dying. It wasn’t about preventing my suffering, it was about them preventing their own heartbreak. I wondered, “why doesn’t anyone care enough to actually try to reduce suffering and improve quality of life, instead of focusing so much on just making sure I don’t punch my own ticket?”
Suicide prevention is incredibly important (not that I would actually call my doctor’s and family’s efforts “prevention”—more like, not so subtle suicide surveys and guilt trips). And I know now that dying wouldn’t set anyone free, not my family, not myself, and certainly not any of the spoonies I’m still around for. But that’s how I felt for so long. I still wish organizations would focus as much on taking care of us as we are, illnesses and all, as they do on trying to find a miracle cure.
one of the most annoying things about having chronic pain for me is that everyone just assumes I’m not in pain anymore because I took painkillers or that my painkillers should help me and make me not be in pain anymore at all and if they aren’t “working” I shouldn’t take them
like my meds barely help me from a abled persons point of view, they help me enough to be able to go to the bathroom (this is with my mobility aid) but that’s still a lot for me and its a difference between being bedbound and literally not being able to move to being able to function at least a little (even if it’s just crawling to the bathroom or be on my phone or eat/drink)
I can’t tell you how many times my mom has told me “if the meds don’t help you why do you even take them??” because apparently meds cure everything and should help you at least 50%??
One reason I don’t like to call them “painkillers”. They don’t kill pain. Medications hopefully dull it enough that you can somewhat function through it.
My best guess is that a lot of people’s main frame of reference is, like, a relatively mild headache. Take something OTC, maybe lie down for a little while–and it might really stop!
That’s just not how chronic pain works, or even a lot of fairly common acute problems. (Say, a tooth abscess or a broken bone.) Which doesn’t seem like it should be particularly hard to understand even with little or no personal experience–assuming that the other person wants to get it. That is too often where it seems to break down, unfortunately.
me: living with a debilitating chronic pain disorder has made it so that i am unable to quantify pain at the magnitude common people feel and thus I have no idea how to answer that
When you need to put captions on the tv, and cant hear what people are saying because the pain is “too loud”
When you need to close your eyes, or look away because it physically hurts to see, or youre too tired to use your eyes right now. Or the pain is “too bright”.
When you cant be touched, brushed against, wear clothes or blankets because the pain makes you too sensitive, and “even air can hurt”
When you cant enjoy eating or the taste of things because you cant ignore the pain and fatigue that comes with chewing/swallowing/after affects of eating/picking up and putting down utensils. So pain literally makes food “hard to taste/hard to eat”
When smelling things immediately make you sick, migraine, make the pain worse because inhaling and exhaling are actually too much and the smell makes you overstimulated and thus makes it so “youre in too much pain to handle that smell”
We need to talk more about how pain affects our senses, these arent anything to be ashamed of. If you suffer from this, im sorry but i want you to know what youre going through isnt fake, it is very very real. And it sucks.
Your valid, your struggle is valid, i believe you and i believe in you.
I was glad those new pruning shears did show up today. That giant neglected ‘Graham Thomas’ rose is wanting to grow up into the neighbors’ steps and decking again 😧 It’s really shot up over just the past couple weeks.
I was going to try and take care of it over the weekend, but the smaller secateurs I could find really were not up to the job.
Not the only overgrown rose pruning job that didn’t get done over the winter/early spring, but the most pressing with it impinging on upstairs. At least that bush barely has stickers to snag anyone, with multiple pieces poking up though the steps 😨 Those people don’t seem to like us much already, and besides just not wanting to cause problems for the neighbors? They’ve already shown willingness to call the council without even mentioning an issue to us first.
I really don’t like waiting this late to do serious hacking back. Not particularly good for the plants. It’s not just lack of spoons, though that’s definitely the biggest factor this year. It’s also way too easy to keep putting off the pruning, waiting and hoping the roses will go properly dormant over the winter. Spoiler: they just don’t in this climate. I should know this after almost 15 years, but I still keep hoping. 🙄 And before you know it, there’s tons of fresh growth to lop off too.
Urocyon's Jaunts 2.0 
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