#my fatigue has been so fucking bad my health is getting worse my POTS is getting worse i've had such bad side effects of this fuckin meds

[thistlekiss]

Fucking exhausted from my grocery shop today and dad drops that all the fuckin work i did clearing shit on monday/tuesday that he SAID needed to be done "as soon as possible" aka THAT DAY when i was ALREADY SUPER FATIGUED is FUCKINGGGGG USELESSSSSSS

i am. Pure rage.

[rabbitindisguise]

Acute illness is really not different and shouldn't be immune from ableist elitism from doctors just because it's come on suddenly. People know their bodies better because they live in them. Period. A doctor will never know better about the experience of symptoms someone has.

Example: last fall I twisted my back wrong and got shooting tingling pain down my left leg, "nerve pain," that matched how my grandfather described years of dealing with a herniated disc that was caused by an injury.

I went to the doctor. I googled it beforehand, because fuck doctors. I described it using ~my own words~ and not medical terminology. "Yep, that sounds like sciatica!" I pretended it was the first time I heard it, even though I definitely found that info in two seconds through google. "So how long has it lasted?"

As soon as I explained that it resolved within thirty minutes because I knew how to fix it (a subluxation), I was rushed out of the office.

I have had thousands of subluxations and even hip dislocations (translation: BAD). It was always the same. My pain, because it came and went, was ignorable. Despite the fact that almost all chronic conditions I know of have flares, or at least times when symptoms are sometimes worse than other times.

I have hypermobility. Ignoring acute symptoms is exactly why they ignore my illness. Acting like someone who googled chest pain is any more likely to be wrong is ableism full stop. Unfortunately, the above statements are entirely mutually exclusive. They're mutually exclusive because my one-off issues discussed in a single appointment are all that remains of years of ignoring symptoms through childhood because I was told to. Joint pain? Growing pains. Tendonitis? I didn't stretch enough, and I lied about the amount I did stretch. For two decades I was coerced into believing I had a "normal" body that just needed some yoga. Because the acute symptoms just weren't that bad. "You don't have joint dislocations. Those are for seriously ill people, that have serious illnesses, and you were assigned female at birth, so you can just fuck off and take an Advil."

There's proof that 27% of referrals happen because of personal internet research (for one rare kidney disease). Those referrals had a equal accuracy rate of approximately 25% to doctor referrals. The study doesn't actually prove that rare diseases are diagnosed from their life long symptoms (the symptoms are acute and fatal, so research was done by people in seemingly good health). Instead, it proves that the information is only as good as what patients are able to give. That means patient education is necessary. That means people googling chest pain is vital, also with academic literacy, the ability to evaluate credibility, and the accessibility of the language of doctors to the public.

Another example: I would have never colloquially described my visual snow as "static" but rather as "fuzz" or "interference." I often interpret things differently as someone with ADHD. Because I'm neurodivergent, someone would have never been able to tell me that I have a symptom based on my patient reported symptoms formed in my own words. Language should not be a barrier to diagnosis. Gatekeeping the internet for acute illness is a good way to get people seriously hurt. Multiple times I've discovered illnesses connected to my other illnesses . . . where I'd talked about the symptoms with doctors multiple times without realizing it, only for them to be ignored. Because "I never heard of [symptom], it's probably fine."

Hell, even POTs is associated with college graduates. Weird right? But according to patients themselves: they often do academic research and have been actually trained to read academic papers. They stick with it when the fatigue and other symptoms persist. A diagnosis is a class privilege.

Google isn't failing people because it's a bad tool. It's not failing people because they're hypochondriacs, or worried well. It's failing people because classist gatekeeping of information, ableism within the medical field, along with sexism, racism, and transphobia.

Hypochondriacs should still be given necessary medical care anyway. A couple bucks on an "unnecessary" MRI or something is pennies considering how many disabled people have lost so much time, money, and actual functionality from untreated symptoms from disbelieving doctors that think worried well patients don't deserve medical care.

Here is further information about why it's incredibly messed up to continue to suggest patients are more wrong than doctors. You need a degree to diagnose someone else, you do not need a degree to research symptoms in order to save your own life. And here's another.

The 7 years, 5 doctors statistic is not isolated from the dismissal of laypeople with a concern. According to doctors, we're all laypeople with a concern. Until we aren't. And sometimes, if they don't like the diagnosis itself- IBS is a diagnosis of exclusion, ME is "made up," depression is "overdiagnosed" so it doesn't happen ever I guess- it's still true. The ableism of the stereotype of "worried well" impacts disabled people long after they've been validated and diagnosed by the medical establishment. The problem doesn't just start as soon as they get diagnosed, it's long before. And long after. Ending ableism people with chronic illnesses face in the medical system means changing even these attitudes, even if they don't seem relevant to disabled people directly.

TL;DR healthcare is a right, not a privilege, and that's true for hypochondriacs and worried well people

[thewordonmainstreet]

It Doesn’t Always Get Better And I’m Proof

It’s Bell Let’s Talk time again and with that comes the messaging that some mental health PSA’s say that “it gets better”.  Well don’t I have news for them, it doesn’t and the world needs to know that it’s okay to not get better.  I’m living proof.  My depression has never been this bad since I was diagnosed at age 18.  Now at 43, my body has checked out on me and I’m left picking up the pieces and I’m not really doing that great a job at that.  I’m exhausted all the time and even after a seemingly restful 8 hours of sleep, I could use 8 more.  When I try to nap, I just can’t sleep.  Sarah (McLachlan) said it right when she sang “I’m so tired, I can’t sleep”.  That’s me.  I’m barely awake and nothing, not coffee, not water, not energy drinks wakes me up.  I have no appetite at all, cept for fast food which only seems to fill the void but I can’t afford a steady diet of that on my income.  I only cook because I have to and I feel that I’ve failed as a woman because of that.  I’m eating like a bird, picking at my food and wanting nothing to do with most of my fridge’s contents.  I want it all in a hurry or not at all.  It’s a hell of a thing to have depression/exhaustion take over your life.  My GP said that she doesn’t know what to do with me.  She’s at a total loss.  I am too.  And then I saw her, a woman whose depression or sheer exhaustion had become her.  Wearing a housecoat and earbuds at 11:58 a.m. on Tuesday morning, coming from getting a coffee at Timmie’s.  I wasn’t the only person that just stared at her and wondered if this was early onset Alzheimer’s causing wandering of just depression turned total exhaustion.  That was me, walking home in a housecoat at almost noon on a weekday.  My body has failed me and I’m failing at life.  I don’t want to be this way anymore.  I’ve got hardly any fight left within me but I’ve got to fight this tired harder than ever because it’s taking my life away.  It’s sapping my ability to blog, to read (yes, I can’t even concentrate to read a book), to cook properly.  It’s going to cost me in the long run.  I’ve decided that I’m going to fight this fatigue aggressively and just push past it. I’m going to shower when I don’t feel like it, cook when I don’t feel like it and just push myself to do everything else that my body says no to.  I just got a job today and I start next week.  I know this is depression and I need to fall in love with life again and find the right job fit for me but until then, I’ve got to not let this become me so much anymore.  I’ve got to do well at this job because my boss seems amazing and amazing and boss together are just so hard to find now.  He pretty much hired me on the spot.  I need to work because ODSP isn’t enough to get by and I want to eat and live better.  But for those that firmly believe in the rhetoric that “it gets better”, this is part of the positivity agenda and to hell with your positivity agenda because not all of us can snap back to reality because sometimes life falls to pieces and not into place. People get so disappointed when they see you’re not doing better, they lose patience so quickly with those that never seem to be on the up and up.  Well those people aren’t my kind of people, they need to get some understanding.  Some understanding that some of us have depression that lasts a lifetime.  Some of us never find our place in this world.  But until then, I vow not to be like that woman, housecoat-wearing and getting a coffee at almost noon.  I’m fighting depression with all that I have within me and there sure isn’t much left lately hence my blog title and I’ll be darned if it’s going to sideline me to the point where I’m fucking up this much.  I’m so far down but it’s not over.  I’m in the 11th hour but it’s not over.  I’ll look into getting help from herbs.  Herbal supplements, not pot.  My life has gone to pot but I won’t turn to it as I don’t like the smell on people, but bless them though.  No way in hell is this going to put me in a worse place than I am now.  So back off depression, this woman is down but I’ll never, ever be out.  Because I’m stubborn like that.  And stubborn is a damn good personality trait because stubborn gets shit done and doesn’t peace out in the middle of the fight.

EDIT:  Just as quickly as a job was offered to me and new hope sprang forward, it just as quickly died.  I’m used to things being given and taken away just moments after.  Everything ends just after beginning.  As a major mid-winter storm weathers against my home, so has life once again dealt me a blow.  I’ve spent the day in bed, unable to shower and get dressed because of the disappointment.  I’ve hardly eaten a thing today and am drowning in despair.  I don’t think I’ve got any strength left in me to rise against the storm that once against has come in to ravage me.  I’ll just take each day as it comes and rest in the assurance that what doesn’t kill me makes me stronger.

[suchawonderfullife]

2. My body is a Picasso

I’ve been incredibly fortunate in my journey to try some cutting-edge treatments in Australia, as well as having a very intelligent, compassionate and hard working CFS (chronic fatigue syndrome) specialist on my side. A specialist like that doesn’t come cheap either (very little if anything is covered by medicare so you have to be prepared to be out of pocket by tens if not hundreds of thousands over the years). He’s been my Dr for 8 years and yes he couldn’t get me better, but he has helped me in so many ways. 

He was able to diagnose a multitude of problems within my body through tests regular doctors would not have access to. His understanding and knowledge of CFS and what it does to the body on a cellular level is extraordinary. For those who know who I am talking about, they would agree that he is a brilliant man, who I owe my life to. He got me into private psych hospitals when I was suicidal, he got me in to see him on spur of the moment appointments to treat flu’s and tonsillitis so that a GP didn’t mess me up even more, he diagnosed me with Lyme Disease. Most of what I know about my body and these illnesses are because of him. 

My first 2 years of being chronically ill consisted of spending tens of thousands of dollars on testing and trialling supplements and medications. I did a tonne of research and learnt about “pacing” and other things I could do on my own to help my body repair. I did everything I was supposed to and my health slowly built back up to 80%. I went back to work part-time, back to Uni, I could leave my house almost everyday and things were getting better. Having a diagnosis of CFS without Lyme Disease (because it doesn’t exist in Australia), meant that the cause of my CFS was not being treated and therefore just a ticking time bomb. Of course I didn’t know this and neither did my doctor. 

So when I relapsed HARD, it was a complete shock to my doctor and myself. My heart became so bad I couldn’t shower standing up anymore, I couldn’t lift my arms above my head to wash my own hair, sitting up for longer than 10 minutes at a time was impossible, talking or paying attention to someone speaking to me was exhausting, looking at my phone or a computer made me feel incredibly ill and I was lucky to sleep 2 hours a night. 

It was terrifying to be this ill and not no why. I ended up on 5 injections, 52 tablets, oxygen therapy for 4 hours and drinking litres of special liquids every day. Without all these I would have been far worse than mentioned, but I wasn’t getting any better. 

You wouldn’t believe some of the tests I’ve done. I’ve peed into a huge jug over a 24 hour period and carried it into a pathology (multiple times), I’ve had to poo into a container and scrape pieces of it out to go into special containers and sent that off, I had to pee in complete darkness into a special container covered in foil because if any light hit my urine it would destroy whatever needed to be tested. Boy was that something I’ll never forget. I had to do it in my bedroom as I had blinds to make my room pitch black. Due to how sick I was, I wasn’t well enough to “squat” and hold my own weight, so I needed my mum in there to help hold me and being a girl you can’t really get your pee flowing unless you’re at least squatting. And how do you aim your pee as a female when you’re in total darkness? I’ll leave that one to your imagination. Being in my bedroom and not at a toilet wasn’t triggering whatever part of my brain was needed to tell my bladder to let it out and I possibly had stage fright from having someone standing there waiting for me to “go”. So it took some time and both my mum and I were getting quite frustrated. Then there was the logistics of finding the toilet paper, wiping, putting it into a bag once I’d finished and hoping I didn’t get any on the floor- all in pitch-black darkness. The things parents do for their kids huh? 

For you folks who hate needles, I could have 10 viles taken at each appointment if needed, I have permanent needle marks on my arm where blood gets taken because it happens so often. I also did a spit test, where I had to spit into this test tube and fill it to the top within a certain time frame. It was actually bloody hard to meet that deadline as I wasn’t allowed to drink for ages beforehand so I was dehydrated. My Dr also does a standing test for POTS (postural orthostatic tachycardia syndrome), which is one of my heart conditions. This is really horrible when you’re so sick as standing completely still for 20 minutes can be near impossible. Some patients faint before the 20 minutes are up due to lack of blood flow to their brain. I never fainted luckily, but my blood pressure would drop to something ridiculous like 45/60 and my heart rate would shoot up to 160bpm. I’d become very disoriented and brain-fogged due to oxygen not getting to my brain, my legs would shake with fatigue, I found it difficult to breathe let alone speak (the nurse would keep asking you how you’re feeling) as my heart was beating as if I was running.

Hydrogen breath tests suck too, for people that have done those. You go into a specific clinic, drink this disgusting liquid and then have to sit around for hours and have your breath tested every hour to see if you have an intolerance to foods like lactose and fructose. Being that I am intolerant, drinking a liquid containing things I’m intolerant to gave me gastro like symptoms, running to the toilet throughout my testing and feeling very bloated, nauseous and just yuck. Gastroscopy, colonoscopy, endoscopy, liver & kidney scans (very painful when they’re inflammed), I’ve been lucky enough to have all of those too!  

Then there’s the trialling of all the medications. Because when you have illnesses that are incurable and largely misunderstood, even regarded as not existing, you are essentially a guinea pig. It’s not only that, but every single CFS or Lyme patient has different symptoms and different biologies, which means all our treatments must be individualised and what works for one might not work for another. My body is also very sensitive to medications (it runs in my family) and having a bad reaction to things is common for my mum, brother and I. Every doctors appointment became a Russian roulette of new medications or supplements. “This test shows your body can’t absorb potassium, take 7 of these a day/ we found your stomach can’t produce acid to digest food, take these with every meal/ your mitochondria can’t produce energy, take this injection daily/ you’re chronically dehydrated, drink 2L of this a day/ you’re not producing the hormone that helps you sleep, take this highly addictive sleeping tablet plus these horrible tasting drops just before bed/ your blood pressure is too low, take this beta blocker.” The list just goes on and on. 

My body is like a Picasso- a jumbled mess, a masterful fuck-up, where down is up and up is down (actually this is sounding more like Dr. Suess). Nothing in my body makes sense or works how it should. So when I trial a medication that I react badly to, thats where you get side effects on top of chronic illness, I have to wean off it and start all over again with something different. I’ve tried hundreds of medications, supplements, tinctures, herbal remedies, whatever was recommended to me. Because I will do whatever it takes to get better and to just feel better. But the more I tried, the lower my success rate of finding things that actually worked. 

New doctors wouldn’t understand how seriously complex I am. A kinesiologist put me on some tinctures that made me seriously ill. My CFS Dr was furious because she wouldn’t have understood that putting me THAT b12 concoction would then irritate this part of my illness and he would never have let me take something like that. Then my Dr’s own colleague tried to treat me and she even made me really ill by telling me not to take certain things and trying others things, as she didn’t know my history for the last 6 years and wouldn’t have had time to read through my hundreds of tests and doctors notes over that time. Again my Dr was angry. This doesn’t make her negligent either, we are just so complex and confusing to the majority of the medical community, can you begin to understand why we are shunned as hypochondriacs or put in the “too hard” basket? 

This is what makes my CFS doctor so amazing, he never gives up on us. It can actually be traumatic for patients like myself throughout our fight to get better. We aren’t even heard, listened to or taken seriously. I had to yell and argue with my GP when I first got sick, just to get him to write me a referral to a CFS doctor because he didn’t “believe in it” and said I must just have low iron or something (he already tested it and it was within the spectrum). He even WORKED with a CFS doctor, so he had an easy connection and getting that referral was like extracting teeth. Years into my diagnosis he would then argue with me over prescriptions and why I needed to take certain things. “7 potassium tablets a day, you should be dead!” Yet I’d have my prescription bottles with me for proof. “Wow you’ve lost so much weight, you look great, are you working again now?” Would be his opening line to me as I slowly dragged myself into his office with a walking stick, barely able to stand or hold my own head up. I don’t think he’s a moron either (well he kind of is), but this is the general consensus of how people with my illnesses are treated by the people that should be helping us the most. So if I’m being frank with you here, the majority of the medical community are morons when it comes to illnesses like mine. They’re brilliant in many other ways, but that doesn’t help me or change my story. 

Can you imagine a cancer patient getting a positive test result or scan of a tumour and being told to just take some panadol (pain reliever), get out more and see a psychiatrist? Or you find a lump in your breast and want a scan, your doctor tells you you’ve imagined the lump, probably from stress or depression and that fatigue is because you need to exercise and lose some weight, then your imaginary lump will disappear. Later you find out your body is riddled with cancer, how angry would you be? My body is riddled with billions of deadly and destructive bacteria because of this ignorance and negligence towards certain illnesses. Can you imagine my anger when I was diagnosed with LATE STAGE Lyme Disease at age 24 and I should have been diagnosed in the hospital when I presented very clear symptoms at age 16. Instead the doctors found me a novelty, they kept coming in all night and gawking at me like a medical marvel. “What the hell is wrong with her? Those are some fucked up symptoms!” is what I imagine the talk outside my door would have been. Lyme Disease is more common than HIV/AIDS, it is not a unique or unheard of disease in the medical world. 

Anyway, so I was FINALLY diagnosed with Lyme Disease in 2013, better late than never, through overseas testing that costs upwards of $1,500-$2,000. So again, you better be rich if you want to get anywhere with treating this bastard illness. This is where the fun begins!