cross-posted from: https://sh.itjust.works/post/28619185

> Mastodon.

Mother of Popocatepetl. From Oct. 2021 til about Oct. 2023, the meds a doctor put me on for two weeks in 21 messed me up so bad that my tired pains were extremely masked by severe dizziness, but they came back last year, and damn, I still prefer the pains over what those meds did (and I still have some problems...Though, thank the Aztec gods I can eat some cheese again. That pissed me off, heh).

I am kind of seriously pissed off at the doctors. I spent so god damn much money trying to fix the shit their meds did to me, that I could have attempted to find a decent chair to help with these pains...or even a fucking cheap shed to have a place to work (to try and make more money)...God damn, so much fucking time and money wasted...Grrr!

End rant...Now try to relax and be very careful shoving my back buddy into my knee as hard as I can.

Knock, knock!

German Fairy Tale Ending

\#chronicillness #autoimmune #chronicallyill #chronicillnesshumor #chronicillnessmemes #autoimmune #fibromemes #fibromyalgia #spoonie #mecfs #longcovid #chronicillnessmemes @chronicpain

\#chronicillness #autoimmune #chronicillness #chronicillnesshumor #chronicillnessmemes #autoimmune #fibromemes #fibromyalgia #spoonie #mecfs #longcovid #chronicillnessmemes @chronicpain

I'm almost 50, and my knee kept me awake all night long. I have a son going in for a colonoscopy, so I tell my wife I may not be able to stay awake...I got yelled at for it.

God damn I wish I could find a job my broken body could do and get the fuck out of this house. Just leave.

End rant.

now I put this yoga mat wrapped under my back when it hurts too much

it doesn't really reduce the physical pain

only financial suck cost

!

Not as I envisioned, but still not too bad.

About four years ago I had come up with this kind of design for a dandelion as a representation of pain. Which, this one gives a sense of loneliness, too (at least for me. My wife is beginning to show her anger and hatered towards me again. So it's definitely how I have been feeling today).

A campaign group will be targeting UK media outlets during global ME Awareness Day – calling out what it calls the corporate media’s systemic “mis-and-disinformation” relating to this chronic illness.

It comes amid growing concern that the same psychologisation certain medical professionals and the media have enacted towards myalgic encephalomyelitis (ME, also known as ME/CFS) patients is now also being used against people living with long Covid.

ME Awareness Day: what is this debilitating illness?

ME is a chronic illness that affects almost every system in people’s bodies – like the immune, nervous, digestive, and hormonal systems. Many of its symptoms majorly impact a patient’s day-to-day life – like cognitive impairment, profound and disabling fatigue, influenza-like symptoms, heart, lung, temperature, and blood pressure dysfunction, hypersensitivities, and digestive dysfunction.

However, the main symptom which sets ME aside from other illnesses is called post-exertional malaise (PEM), the NHS Scotland website says. Oddly, NHS England’s website makes no mention of this. PEM is a worsening of many, if not all, the body’s systems, as well as symptoms, after physical, mental, or emotional exertion.

Research has shown people with ME have a worse quality of life than many cancer patients, people living with type I diabetes, and stroke survivors.

Severe ME

In its worst form, people with severe or very severe ME often cannot eat or drink, are permanently bedbound or hospitalised, cannot sit or stand up, and are completely reliant on others for their care. However, crucially ME can kill people – and has.

In 2021, Maeve Boothby O’Neill died from very severe ME at the age of 27 after the NHS allegedly neglected her. Doctors denied her a feeding tube, and later denied total parenteral nutrition, which could have saved her life. An inquest into Maeve’s case is ongoing. Her father, journalist Sean O’Neill, wrote about his daughter’s story for the Times.

Much of the appalling treatment of people with ME is due to a cartel of medical professionals who have for decades claimed the illness is psychological.

Psychologising the physical

As the Canary’s Hannah Sharland recently wrote, there is:

> > > a long global history of medical misogyny and trivialisation of the illness. Notably, one flawed 1970s study for instance, labelled a significant outbreak of the disease as hysteria. > >

> > > This psychosomatic diagnosis, with sexist origins in tow, has persisted into the modern medical era. Of course, this also tracks, given that both historically and today, more women go on to develop the disease than men. > >

> > > The medical establishment’s approach to ME/CFS is still mired in this same pernicious thinking. Largely, this pervasive psychologisation in recent years has come as a result of a persisting and highly controversial clinical study known as the PACE trial. > >

> > > You can read more on the disease’s history here. > >

As Sharland also noted, medical professionals are also now using this ‘all in your head’ gaslighting against long Covid patients.

So, every year 12 May is global ME Awareness Day. This year, campaign group the Chronic Collaboration is set to up the ante when it comes to taking action.

Calling out the corporate media

The group’s founder Nicola Jeffery said in a statement about ME Awareness Day:

> > > Patients have seen mainstream media repeatedly discredit and disregard any attempt to correct this – while at the same time continuing to platform medical professionals who are committed to the psychologisation of ME and Long Covid. > >

> > > Enough is Enough. > >

> > > The mainstream media has refused to report correctly on our chronic illness, so we have decided to do it for them. > >

> > > On ME Awareness Day, the Chronic Collaboration will be reporting live from outside different media studios and offices at different times of the day – calling out their mis-and-disinformation and doing the corrections they should be doing for them. > >

It also wants people living with ME and long Covid to get involved. Jeffery said:

> > > Whenever we do direct in person actions, we’re always really conscious of the fact that some of us are privileged to be able to even get out on the streets. So, we focus on how chronically ill people at home can get involved. For this demo, we want people to support online to get #MEAwarenessDay #ExposeMENow and #ExposeLongCovidNow trending on 12 May. > >

> > > But we also want people to have a visible presence at locations we’ll visit. So we’re teaming up with campaign group Not Recovered UK to design roll up banners to plot outside media offices. > >

> > > We want photos from people living with both ME and long Covid to put on them. People can email hello(at)thechroniccollaboration.com with a square photo (preferably 550×550 pixels), with their name, how long they’ve been sick for, & what they used to do, and we’ll add them to the roll up banners. > >

The Chronic Collaboration has set itself quite a challenge for ME Awareness Day. It will struggle to find a corporate media outlet that hasn’t contributed to the psychologisation of this very real and very debilitating condition.

ME Awareness Day: not the usual awareness-raising

As the Canary has documented, outlets like the Guardian and the Daily Mail, and broadcasters like the BBC have repeatedly contributed to the distress and gaslighting of people living with ME, and the regression of research into the illness.

For example, BBC ‘entertainment’ show Dragon’s Den was recently embroiled in controversy. It promoted a snake oil treatment for ME called Acu Seeds.

Meanwhile, the Guardian has repeatedly, published inflammatory articles pushing what is best described as junk science, without recourse.

Plus, the Daily Mail has defended members of the psych lobby – smearing chronically ill people in the process.

Until the idea that a physical illness can be ‘all in people’s heads’ is consigned to the dustbin of medical history, then we have to keep fighting back every time it rears its ugly head. Specifically, the Chronic Collaboration is correct to be targeting the corporate media within this. These outlets quite literally shape the views of much of the population.

So, as Jeffery summed up for this year’s ME Awareness Day:

> > > Using the hashtags #ExposeMENow and #ExposeLongCovidNow we want our followers and supporters to let these media outlets know exactly what we think. Tag them in posts and tweets throughout the day, showing the reality of these chronic illnesses and correcting their lies. We want our voices to finally be heard. > >

This ME Awareness Day looks set to be a very disruptive one for the corporate media. What a shame that would be.

All the details of the Chronic Collaboration’s protest are in the image below:

Image

So I was prescribed 15mg MSContin on top of my 4 7.5mg Percocets daily. Oh my God. I had SO MANY SIDE EFFECTS. It made me violently ill. The first week I was actually happy because it worked very well for the pain but the longer I took the more it wrecked me.

Once the side effects hit I was puking like every 3 days with an incredibly sensitive stomach daily so I had to be careful even drinking water. Then I realized I hadn't shit in like 6 days. On Tuesday morning I ended up projectile vomiting all over my bathroom trying to make it to the toilet at 8am. That wasn't the first time it happened.

I decided at that moment I'm done with this pill. Can't keep putting myself through this.

I had my pain apt yesterday and he is gonna switch me to oxycontin because I have no side effects from Percocets. I'm either a no side effects or I'm dying side effects person. No in-between. I've always been like this.

So I just gave up on taking my morphine. I've been putting myself through withdrawals. Yesterday night I ended up just cutting one in half because I didn't think I'd be able to sleep and needed to work today and it helped enough I was able to sleep but still felt like shit and same with this morning. But, in that time frame I should've taken 3 but I only took a half so I did good. I also completely cleared out my system because of diarrhea due to withdrawals and I've never welcomed it so much in my life lmao.

But man, what a horrible experience. The side effects were awful. I'm still in withdrawals but it's better than taking that pill everyday. I'm hypermobile so I have a lot of muscular pain and this obviously is just exasperating it but I'll make it through. I get the new med this next Wednesday. I told him though if I get side effects I'm done with extended releases because I've had issues with multiple. He agreed and told me he'd just up my Percocets to 10mg if that happens.

What an awful 3 weeks though. I can't wait until this is over. I feel like I've been shit out of luck with issues this year so far and I just need to bring back some stability into my life (pun intended cause get it? Hypermobility?)

This is my first experience with withdrawals to this extent. I've experienced a bit before like 7 months ago when my pharmacy decided to wait until like 6pm to fill my meds and I get refilled when I'm out. I know it's just a glimpse of withdrawal but I can see where it's horrible

I went to pick up a package this morning and wanted to go to the store after and after I got the package I just mindlessly went back to my apartment and realized it. So then I went to the store and for whatever reason grabbed a Gatorade and opened it immediately and just zombie walked through the store for like 5 minutes drinking it before I realized what I was doing lol. I obv paid for it but I thought it was pretty funny. I haven't had such a "what the fuck am I doing" moment in quite a while

Seen it's been rather quiet here, I figure a new off the wall message might be helpful to break the silence, 😉

Anyway, on top of the many chronic pains, and the medicinally induced GERD thanks to the chronic pains and the paranoia over opioids (Yay, to being a guinea pig...👿 ). Now I get the old man stuff. A pulled muscle where I never knew a pulled muscle could be. Hairs, tickling the side of my nose...GROWING FROM INSIDE OF MY NOSE. Long hairs on the sides of my ears..."Look, Ma! I'm a linx" 🙄 .

Then there's the brain drain...Hoo boy, the number of times I almost cut myself or have to be extremely...I mean extremely careful when using my power saws...Yeeeeeeesh!

And, to make this circus even more fun, I really really should see a doctor...And I have decided to just say screw it and go into deep debt...Me thinks the medicinally induced GERD has gone into a new phase. The first year was extreme dizziness, difficulty breathing, plastic smelling sweat, and bad chest pains. 2nd year, it got better, and the dizziness wasn't that bad. Going on the third year now, and hoo boy, the discomfort I had in my belly just below my ribs (both sides) are now pains...Holy halibuts can they hurt. Then there's some new pains in the middle of my back (New? Maybe? I don't have a bloody clue...It's hard to remember what's old and what's new...🤨 ). That's not all, but that's not the embarrassing stuff...Also, the plastic smelling sweat has come back pretty bloody strong, too. (And there goes a sharp stabbing pain just under my ribs about three inches from my right-most side...Yeesh).

Oh yeah, then there's my lungs being used as a damn kidney...WTH is that all about? If I eat too much salt, tums, alka seltzer I'll hack sodium/salt out of my lungs. Too much sugar? That'll come hork up, too...Hell, I made some shrimp with some lemon juice and was hacking up citrus flavored phlegm...Holy Mother of Zeus...

On a good note, these new things have...erm...dulled? quieted? masked? the majority of my pains. So I've been able to cook & clean more. So...That's...um...well...nice...I guess. 😶 ...

Ok! That's my message for the day...Now wasn't that so much fun? "Not really, my belly hurts", 🤣 🤣 🤣 And now I'm hungry...again...I miss spicy food...😢 and I miss being able to out eat my entire family..."Long live high metabolism"...

The dishes are piling up. My apartment is a mess. I can't stand long enough to make a decent meal. My tasks are falling way behind at work. The physical therapy exercises just stopped helping one day. Ibuprofen makes my stomach cramp, pretty sure I have a hernia, or at least it's warning me it's close. Weed doesn't dull the pain anymore. I miss my good days.

It's caused backlash among the chronic illness community.

While Dragon's Den viewers were still buzzing over the addition of newest honorary dragon Gary Neville, social media was also discussing the devastating impact Thursday night's show had on the disability community.

ME (myalgic encephalomyelitis) is a debilitating chronic illness which causes life-changing fatigue, muscle and joint pain, brain fog and headaches to name but a few symptoms.

When a young entrepreneur popped up on Dragon's Den and claimed that a "personal healing journey" that included ear seeds had aided her recovery from ME within 12 months, most of us living with the condition rolled our eyes, as there's famously no scientific cure for the condition.

Some in the audience were intrigued, however, and the "Are you watching Dragons' Den?" messages started rolling in from friends and family.

What Giselle Boxer presented were needle-less acupuncture "ear seeds". Based on traditional Chinese medicine, acupuncture seeds trigger pressure points – and, from personal experience, acupuncture has certainly helped me temporarily sleep better.

That Giselle is confident that the seeds helped her is wonderful, but also anecdotal. To present her experience as some sort of 'cure', with no science to back it up, is concerning for those of us with ME, who are often not taken seriously by medical professionals or the general public.

In the end, Giselle was made an offer by all six Dragons. Whether intentionally or not, Dragon's Den has now left the door open to yet more ill-advised treatments.

ME is a complex disorder. A large proportion of us do not know what triggered the extreme fatigue that has led many of us to become wheelchair users and to become intolerant of light or noise, even of the touch of our loved ones.

Globally, funding into research is incredibly low despite ME, Chronic Fatigue Syndrome and similar condition Long Covid showing that sufferers have some of the lowest quality of life across all illnesses.

Despite this, some doctors in the UK are still suggesting dangerous treatments such as Graded Exercise Therapy, which has officially been taken out of the NICE guidelines due to it showing that it sets patients back further.

Many sufferers are sadly still faced with accusations that they are faking illness, being lazy or not trying hard enough.

If a tiny stick-on seed featured on Dragon's Den can cure everything, why are we not whacking them all over our pressure points and skipping off to do a full day's work followed by an ultra marathon?

Editorially, the BBC has made a grave decision in allowing a product to seem that, coupled with various wellness practises, it could somehow cure an illness, without scientific backing.

Would the BBC allow a show to go out which claimed jelly babies cured heart disease? Or taking up crochet would fix a broken leg?

What was shown on television for several minutes has collectively cost those of us with ME days and days worth of energy, filling in complaint forms and having unneeded conversations with people about the reality of living with our condition.

Dr Charles Shepard, Hon Medical Advisor for the ME Association said: "The way in which Dragons' Den has been used to promote an unproven treatment for ME/CFS has, not surprisingly, caused a great deal of upset and concern in the ME patient community.

"People with ME/CFS are fed up with the way in which products like this are regularly being promoted when there is no sound evidence from proper placebo-controlled clinical trials to confirm that they are safe and effective.

"These sort of expensive commercial products and devices should not be promoted to very vulnerable sick people until they have been properly assessed for safety and efficacy in clinical trials – in exactly the same way that drug treatments are."

In response to this story, a BBC spokesperson said: "Dragons' Den features products from entrepreneurs and is not an endorsement of them. Dragons' Den shows real businesses pitching to investors to lift the lid on what happens in the business world. This episode features an entrepreneur sharing their own, personal experience that led to a business creation."

Dragons' Den has showcased some incredible businesses designed to make disabled people's lives easier: from all-terrain wheelchairs by AdaptAbility to adaptive clothing company Unhidden.

Getting disability aids onto the screens of millions of people is important to those of us who use them; visibility and societal acceptance are key ways to change things for the better.

However, with such a large audience comes responsibility for BBC Studios, makers of Dragons' Den, and for the dragons themselves to responsibly question contestants on scientific evidence and data sources.

ME patients don't have to prove their illness to anyone. But to present one person's journey unchallenged has a tangible, damaging impact on others.

I'm already at a pain mgt clinic but I've never seen a doctor there so I decided to checkout another one. So I asked my neurologist to refer me one and I had the appointment with them today.

They're great and I would actually talk to doctors there which I like but they have a MME requirement which is much lower than the CDC recommend max which is 90MME. This pain clinic has a max of 50MME.

Not only that, but Colorado protects doctors here from lawsuits and says it's okay to go over 90 mme if needed

I currently take 40mg hydrocodone a day so there's only room with 10mg more if I switch to this clinic.

That really sucks because he told me they would rotate meds for tolerance reasons so they would switch me to oxycodone then a few months later morphine and so on so tolerance doesn't build for one medication. But that 50mme is tough because for me to be able to do basic activities and be active in life I'm going to need more than that.

It was so nice to be able to talk to a doctor who understands opiates without feeling stigmatized while asking my questions and saying my thoughts and experiences with certain pills and how one has helped my pain more and etc. compared to talking to a young NP that doesn't understand.

It's tough because it seemed like a great clinic but that limit may be a deal breaker.

I really hate chronic pain lol, obviously. Today's been hard though. Last week I met with a new neuromuscular neurologist and she told me bad news. She disagrees with my previous neurologist on the CIDP diagnoses and thinks that I have an extreme case of small fiber neuropathy.

I can't stand in one spot for more than a few minutes without my legs starting to shake or walk up or down hills. Eventually they'll give out and just tremor. She doesn't think I'll get em normal again. She said I could get some functionality back but that's it. That's also with nonstop water therapy and normal physical therapy.

Same with pain. She thinks I'll be on pain meds forever. Not only that, but the nerve pain in my legs and low spine pain hasn't gone away since the blood patch 4 months ago. I got 500mg methylprednisolone infusions for 3 days a month ago and that helped a lot and I was hoping it would go away but it didn't. Still can't have my legs in certain positions. I got acupuncture today and she did cupping on my back and did it on my hips and lumbar spine and that general area and it made it flare up. Had nerve pain in my legs the entire time. I just got a lumbar pillow and can't even use it because it makes my low spine hurt and nerve pain in my legs.

I got wheelchair assistance for the flight home for Thanksgiving and that was really tough to do mentally. The flight home also caused a lot of pain. Not only that, but I got into a huge fight with my mom and brother because they can't seem to comprehend the fact that I'm not gonna be in a jolly mood when I'm in a lot of pain.

What the new neurologist told me sucked. It has a lot of implications. Been a mentally rough week and a half. I try not to think about my future but I have been. Idk if I'll ever be able to get into a relationship with how my life is currently. I'm just exhausted. All of this is just too much. I wish I'd wake up one day and it would all be gone and I could live the life I had a year and a half ago

I'm a newcomer here, but I would like to raise awareness for people who suffer from severe trauma. The nights of little to no sleep. The tears that are wept for something that happened 15 years ago like it just happened to you. Just here to let you know that you're not alone, and no matter what pain you feel, someone somewhere can help

I've always read mixed things about them and for some reason I always thought they were thousands of dollars. Finally decided to look them up and to my surprise they're not lol. Don't ask how I got that in my head.

I went ahead and ordered one to see if it helps. A lot of my pain is muscular and I will have muscles that will seize up for basically days. Even if this can relieve some of it, I'll be happy.

Any have experiences with them?