Discover Top Posts Tagged with #cfsme

It's ME/CFS awareness day. I'm stuck in bed after a meltdown at school. It made me so tired.

I can't make a good post right now.

Myalgic Encephalomyelitis ruins lives, and at its most severe, kills.

Wear a damn mask.

#myalgic encephalomyelitis #me/cfs #chronic fatigue syndrome #mecfs #cfsme #me cfs #physically disabled #disability #mecfs awareness day #ME awareness day #me awareness month #mecfs awareness month #cripplepunk #wear a mask #still masking #covid isn't over

(chronic fatigue voice): yesssss i love my Naps. my Naps could never hurt me #MyNaps

#pls help i am.so sleeply #chronic illness #chronic fatigue #chronically ill #disabled #actually disabled #disability #physical disability #physically disabled #cfs #cfs/me #me cfs #cfsme #chronic fatigue syndrome

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.

#shush robin #chronic fatigue #spoonie #cfsme #mecfs #chronic illness #myalgic encephalomyelitis

too awake to sleep

too exhausted to do anything at all

#and the cycle continues #mecfs #cfsme #me/cfs #cfs/me #myalgic encephalomyelitis #chronic fatigue syndrome #chronic fatigue #chronic pain #chronic illness #chronically ill

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.)

#note: this is all in Canada. you know the country with 'good' ''health'' '''care'''#anti psych #anti psychiatry #antipsych #medical abuse #medical neglect #fibromyalgia #mecfs #cfsme #myalgic encephalomyelitis #rheumatoid arthritis #chronic illness #chronic pain

They say myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia are rare diseases (not even recognised in my country) but then how come I know two people irl from my town and inside my narrow acquaintance circle that have had it for decades and several others online and none of them I met because of those. And I'm not even counting the irl peeps that have experienced long covid, but there are at least other two with official diagnosis. Okay. Seems fake but okay.

#I'm not saying there are as much people I know with cancer but it's three to one‚ max four to one (again not counting long covid)#so you know #rare seems like a stretch now #and still I'm not counting the other ones in the ''family'' like lyme or ehlers danlos bc idk anybody irl with those #but that doesn't mean they aren't there! I just don't know #and no one's getting covid and flu vaccines and I'm always the sole loser with a mask around #sorry I'm not having a good day #mecfs #cfsme #chronic fаtiguе ѕуndrоmе #myalgic encephalomyelitis #fibromyalgia #long covid #personal

If the fibro could stop myalgia-ing, that would be neat

#chronic illness #fibromyalgia #disability #me/cfs #migraine #postural orthostatic tachycardia syndrome #chronic fatigue #chronic pain #pots #fibro problems #cfsme #chronically ill

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?

#chronic fatigue #chronic pain #chronic illness #chronically ill #chronic fatigue syndrome #fibro #ouch #cfs #cfsme #myalgic encephalomyelitis #fibromyalgia