Chronic Illnesses and Physical Diseases Megathread

[dr18]

The NHS does not seem to be able to treat anything nowdays

oh 100% agreed, they're so shit and incompetent. sure, ive met some wonderful nurses when i was inpatient for after my first surgery (that they completely fucked up, theyve disfigured my diaphragm causing constant pain/pressure issue swallowing/breathing) and its deffo some of the people that 'make' the NHS atleast 1% kind and considerate. but the 99% is...really fucking bad.

my first lung collapse was misdiagnosed by a pakistani female doctor, as "muscle sprain" in my chest wall.
after surgery to correct my lung collapses, another pakistani female doctor/surgeon said it is "theoretically impossible for it to be related to endometriosis". <-- obviously untrue because in the USA its standard practice to have a scope check up behind the liver/diaphragm/chest walls when looking for endo, as it can be more common than we might think.

IDK if its lack of knowledge or lack of inspiration to seek out new info as a doctor or whatever the fuck else. but most doctors do not seem to care. is what it is. i should of been more sue happy the first time they made a fuck up. and im waiting for the next fuck up to take it to court over.

 

[UnrulyNightmare]

so i took LDN within my first 2 months of Long COVID, in that time I also tried Zoloft and Cymbalta, which also gave me some kinda bad side effects, but nothing permanent like LDN has.

Now, 4 months in, I'm taking amitriptyline and 2 nasal meds and trialing Mestinon, and not having any significant side effects

It would be a miracle if my balance disorder could work out like your SSRI experience. I would probably start believing in a god. But it literally hasn't changed in the 3 months since I took that fateful dose.

Shit... No should have been gone by now. Sorry! Must be a horrible feeling... The meds do anything positive?

 

[qewpie]

Shit... No should have been gone by now. Sorry! Must be a horrible feeling... The meds do anything positive?

amitriptyline enables me to sleep more consistently 6-8 hours and getting back to sleep after waking up in the middle

the others do literally nothing, I've had sinus pressure since my Long COVID started and nothing has made a dent

 

[UnrulyNightmare]

amitriptyline enables me to sleep more consistently 6-8 hours and getting back to sleep after waking up in the middle

the others do literally nothing, I've had sinus pressure since my Long COVID started and nothing has made a dent

Uhgl. Well the sleep is a good thing.. I"m glad that's at least working!

I hate the pressure and tinnitus...

Thanks for putting up with my questions!

 

[Feux]

I have sickle cell disease and asthma. Fortunately, they don't impact my life as much as they used to. Autism, depression, anxiety and AvPD are way more difficult to live with for me.

 

[Dot]

 

[castlebravo]

I have a rare neurological disease. At some point I may not be able to walk. I started having gait difficulty in the last 3-4 years though I felt physical symptoms (stiffness and pain since I was 40. I'm 55 now).

I don't want to be in a wheelchair. I really really don't want to wear diapers. I know where this disease leads from family members- so I think I'll know when the time comes to CTB.

 

[doomedbynarrative]

Gosh, hello hello.
I'm so glad this thread is here though I'm sorry for the reasons for it. It makes me feel less crazy for wanting to ctb. It's disheartening to see other disabled folks out there who are "inspirations" or who don't feel this way cause then it's like wtf is wrong with me then?
I have progressive hearing loss that really started when I was in my last few years of college studying for... a music degree.
I am still actively losing hearing despite best efforts to preserve it and, as a result, I have multitoned, very severe tinnitus 24/7 365 that sounds much like nails on a chalkboard, tea kettle whistles, drones, and the high pitched EEEEEE. None of it is really maskable anymore. It is also extremely reactive and always has been. Wearing hearing aids for any length of time is a special kind of torture.
I haven't sang or anything in a little over a decade and I cry often about it.
I also have hypermobility that causes random temporary pains in my joints that is steadily getting worse (not EDS) and MCAS that started around the same time as my hearing loss and has also progressed over time.
Also AuDHD which really just made my already hard childhood soooo much harder than it needed to be.
Lump it in with severe depression, anxiety, and CPTSD and well... I really find it hard to keep going.

 

[Dot]

An NHS hospital is starving a severe ME patient and has now stopped giving her fluids

Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk

www.thecanary.co

 

[doomedbynarrative]

An NHS hospital is starving a severe ME patient and has now stopped giving her fluids

Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk

www.thecanary.co

I've seen this happen to so many ME/CFS patients... Over and over and over again. When will they stop killing them like this? It's so unfair and makes me scared for some of my friends who have ME/CFS.