Apr 1
(chronic fatigue voice): yesssss i love my Naps. my Naps could never hurt me #MyNaps
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(chronic fatigue voice): yesssss i love my Naps. my Naps could never hurt me #MyNaps
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In a similar way to how I wish people without chronic pain and fatigue understood that staying in bed all the time isn't fun, I wish they understood that getting takeout all the time isn't fun either. I would LOVE to be eating home cooked meals but I just can't most of the time so fast food it is because I can't afford anything better with disability benefits. The novelty of bed and takeaway wears off Real Fast when it's your only option.
too awake to sleep
too exhausted to do anything at all
Actually we're talking about this
The medical neglect and abuse of chronically ill patients is absolutely absurd and only getting worse.
I have a multitude of different chronic conditions, many of them only being undiagnosed or partially diagnosed due to tests either being inaccessible, poorly done, or not ordered at all.
From those conditions, I mainly experience debilitating chronic pain (including inflammation and worsening of conditions), lethargy, migraines, vision loss, lightheadedness, skin damage, bowel and bladder issues, and possibly malabsorption. Just as main symptoms. I am housebound and slowly becoming bedbound.
But apparently the only treatments available are antidepressants, sunlight, exercise, and weight loss.
I've been getting more symptoms and more vocal about it, and they won't order anything other than the same blood test they always do, if that. I can't even see my results. No x-rays, no EKG, no MRI, no CT scan, sometimes I'll get a specialist referral... and then get denied. Because my doctor lists my issue as "depression."
No mobility aid, no injections, no physical therapy, no fucking help, not even a number to call. God forbid opioids (yes they do work, they're the gold standard of pain management, less than 5% of people abuse them when prescribed and also addicts deserve respect and compassion) but that's its own post.
So many patients are marked as noncompliant, over reporting, drug seeking, and plenty more things. It's common to bring an entire binder of information to an appointment, just to convince the medical professional to be professional about your medical issue. Half the time they don't even read a single page. For tons of people it's inaccessible in the first place. You literally cannot win.
It's not just this one doctor, it's a systemic issue. Doctors, nurses, psychiatrists, specialists, do not have your best interests in mind. I'm not the only one this is happening to. And it's targeted to the most marginalized groups.
This barely scratches the surface. I encourage people to share their experiences when reblogging.
(Fatphobic and healthist comments, including ones about exercise, get you an instant block.)
If the fibro could stop myalgia-ing, that would be neat
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you know when you are chronically ill and you plan an outing (bear with me) and you plan it so carefully to get as much done as possible in as little time as possible and you get back, already feeling the flare rolling in, proud of getting it all done because it was important stuff to get done except that
you forgot something
and now you have to go out again with flare symptoms, knowing you will get an even worse flare after getting back but having no other choice because nobody will help...
so you just suffer the consequences
...
just me?
*groans in chronic pain*
i really need some kinda mobility aid. but god damn are they expensive :(
i miss, so dearly, having energy as a baseline. i took it so for granted to have that basic level of energy needed to feel awake. i don't even mean feeling rested; actual fatigue is so hard to explain to people who are "just" tired, even that severe tiredness from depression, it's not like fatigue. i miss not knowing the feeling of my brain screaming at me to lie down, when all i'm doing is sitting up, perfectly still. i miss not having to convince myself to stand, not because of some mental block due to depression or executive dysfunction, but because my tank is empty and it feels like i can't. i miss not knowing what it was like to lie down and feel like i'm still not laid down enough, but sleep won't come because i'm not tired. i'm fatigued.