For the first time in months, I amazingly managed to make some appointments at the GP surgery. Lately, it’s been impossible to get an appointment. No matter what’s wrong, they turn me away. I have a lot of side effects from cancer treatment and my stroke, and no matter the problem, they say they don’t have any appointments and send me elsewhere. Got an infection? Go to the pharmacist to be prescribed antibiotics. Musculoskeletal problem? Refer yourself to the physiotherapist (and wait months). Foot issues? Refer yourself to the podiatrist and wait months. Issues with your meds? Wait until you can see the endocrinologist. And on and on. It’s stressful and exhausting. Well as I mentioned after my surgery the surgical wounds on my feet got infected, maybe because I was left to change my own bandages at home. Which is difficult anyway because of mobility issues caused by my stroke. So today I said to the GP receptionist that I need nurse appointments to change these bandages. I fully expected to be turned away again, but she actually made me three appointments for this week, Tuesday, Wednesday and Thursday. They are the only days available . It’s not every day like I need but it’s something. The NHS has fallen pretty low when I’m grateful to get any appointments at all instead of being shocked that they expect me to go without help some days.

seeing the amount of upbears some guy got for calling me a wrecker and a fed for politely calling out ableism is making me want to just delete my account and quit the site ngl. mods got on the case but it’s obvious a lot of folks on here are ok with that shit. between that and the misogyny it’s harder and harder to feel like this site is a safe space outside of this mega and the trans one. when are we getting a purge of class reductionist brocialists fr

: “Do you hate ‘useless eaters’?”

: “Yep”

: “And you are a job creator, right?”

: “Yep.”

: “I am unemployed and want a job, hiring me will make me productive and no longer a useless eater. And if that’s the case then if you put me to work, I’ll contribute to society and have an income, and I will no longer be a useless eater. The thing you hate.”

: “That makes sense to me.”

: “Then hire me.”

: “No!”

THE FOLLOWING POST IS A BIG OL’ VENT FEST.

I have a 10 minute consultation with a psychiatrist who specializes in ADHD on Monday. I think I’ve had undiagnosed ADHD my entire life. It’s gotten to where I can barely function anymore.

I’ve had two psychiatrists in the past. They only treated me for depression. That’s partially on me. I had a suspicion I might have ADHD back then but I wanted to rule out depression as the root cause first. That was a mistake. Every appointment after that lead to the same solution: more or different SSRIs (with an NDRI). Two years, and multiple appointments, even after my therapist told me he thinks I have ADHD, and the psychiatrists continued to focus on SSRIs or other alternatives.

My suggested I have sleep apnea, and I do. Treatment has been a gamechanger. I’m grateful for that.

Nonetheless, I resent the fact that the hurdles for ADHD treatment are so high that it seems impossible for an actually inflicted person to clear them, whereas the hurdles for SSRIs are extremely low. SSRIs, like ADHD medication, have many side effects and are difficult to wean off of. It may not be an addiction like alcoholism but people can form life-altering chemical dependencies on SSRIs. Still, they’re handed out like candy, whereas the bar for ADHD treatment is so high that it seems like only a highly motivated drug user could clear it.

No shade to my drug users out there. I don’t care if someone uses drugs or not.

My point is that doctors and psychiatrists pretend that their reluctance to even screen me for ADHD is neutral, medical and scientific, whereas I suspect there is a social and moral element at play here: the unspoken suspicion that I’m seeking drugs for recreational use or resale. I’ve been frank with them about my drug use before. I’ve used psychedelics plenty, I have an on-again and off-again relationship with cannabis that is not altogether healthy, and I engaged in regular binge drinking through my teens and twenties. I tried cocaine once and didn’t like it. I barely touch alcohol anymore, and mostly keep my use to weddings and funerals. My first 2-3 years after starting SSRIs, I didn’t touch cannabis once. It wasn’t until about a year ago that I found my dead stepdad’s stash and started smoking weed again.

BTW: weed on SSRIs is great. I’m a naturally outgoing and extroverted person, but cannabis gives me crushing social anxiety. I can’t function socially on weed. That’s totally different on SSRIs. SSRIs make it so I can smoke weed and remain unflappable. That’s the best part.

My depression symptoms have all but disappeared now that my sleep apnea has been treated. I still have all the classic ADHD symptoms though.

My last appointment with my psychiatrist, I described my obligation avoidance and executive dysfunction. He treated these like they were energy related, and said that low energy isn’t an ADHD symptom. I felt crushed.

I’ve had a lot of other health issues and problems with doctors in recent years. I think being honest about my history of drug use was a mistake. Those drugs are all fairly harmless in my opinion, but I have this suspicion that any time I come to a doctor with complaints about pain, they think I’m only interested in opiates. One of the last doctors I saw was so rude, condescending and dismissive that I can’t think of any other explanation.

I have so much more to complain about. I lost my job last year because the doctor refused to sign my FMLA paperwork. My stepdad died months prior, and I’d only been on my CPAP for a mont after years of untreated apnea. Anyone who knows about sleep apnea knows that it can take up to a year (even two) to fully recover once treatment has been initiated.

I was in the largest chemical train spill in United States history. 68 tons of chlorine ruptured from a tank and formed a gas cloud that rolled down my street. I was six years old. I saw the chlorine clouds. Trees were bleached for miles around. People and animals died. All of our possessions were left coated in a mysterious white powder that was never identified. I had chemical scarring in my lungs and toxic encephalopathy (swelling of the brain). I can only imagine how my mental and chronic health issues have been impacted by this industrial incident.

I used to do disability care, mostly working as a support provider in care homes for adults with intellectual and developmental disabilities, but also as an in-home care provider for people with spinal cord injuries and central nervous system diseases, so I know my encounters with the medical establishment and systemic ableism are the tip of the iceberg. I have horror stories about the care homes. If you stand up against abuse and ableism in that work environment, you become a pariah to your peers. If it’s welcomed, I’ll likely dump about that here sometime.

I just wanted to let all of that out.

The positive spin on this is that I’m doggedly pursuing treatment now. I have this consultation with a psychiatrist coming up. If they don’t see me, I’ll continue tracking down new ones until one does.

Now my surgical wound is infected! This just never ends. I had surgery on both my feet a couple of days ago to remove stubborn infections, and now the surgical wound on the left foot is infected, red, swollen and so sore. It’s the weekend so the doctor and local pharmacy are closed, so I called 111, the NHS advice line. They have made me an appointment to turn up at the emergency department at 1pm and said I might need IV antibiotics. Oh god, what is this life?

I am trying to take a tolerance break from my adhd meds. I have methylphenidate 36mgXT and 10g for breakthrough symptoms. So far I am on day two. Maybe day one cause yesterday I drank monsters all day to get me through work so maybe that doesn’t count. How long smdoes this kinds thing usually take?

I am so tired. Being ill and disabled is exhausting. There is always some battle to fight or some mess to sort out. As if fighting a benefit appeal and always struggling to keep fed isn’t enough, the doctor surgery or pharmacy always messes up my prescription, every month. Every month either something is either missing, wrong dose, the pharmacist has a go at me for costing the country too much money, the doctor threatens to change my meds or reduce them because they’re too expensive, or some other issue. Today my eczema cream is missing. As a side effect of my cancer treatment I have developed terrible eczema, so bad that I’ve been hospitalised on multiple occasions because it gets so terribly infected. Well I’ve totally run out and either the surgery forgot to send the script for it or the pharmacist forgot to put it in the bag. Either way, it’s not here, they won’t answer the phone and they’re closed all weekend. Great. FFS just legalise assisted suicide, it’s clear most people don’t care about us.

i wish i could just have like 3 days with 0 social interaction or physical exertion…

I’ve been in the throes of autistic burnout for…who fucking knows how long. Luckily I’m not working right now so have had a lot of time to just lay and stare at the wall. Yesterday, however, I did a 4 hour volunteer shift then went on a 2 hour walk with a friend and cooked dinner. Now I feel hungover and am gonna nap til 11 or 12. I hate this

When I despair/ my kind friend reminds me/ that wearing a mask/ is an act of love,/ and when I tell her/ there are days/ when I wear it/ not out of love/ but out of anger and spite,/ my kind friend responds:/ isn’t it wonderful/ to turn your anger and spite/ into an act of love

I have this saved on my phone, not sure where it’s from but I think about it a lot. Hope everyone is staying safe and sane this week.

Read a bit more in Unmasking Autism, keeps being good, not much to add other than quoting a couple extra cool bits:

Our elaborate veils of coping mechanisms and camouflaging can create the illusion we don’t need help. Often this comes at the expense of giving up on the areas of life where we might need assistance. We may eschew relationships, drop out of grueling academic programs, avoid working in fields that require networking and socializing, or completely disengage from activities that involve using our bodies, because we feel so detached and uncoordinated in them. Most of us are haunted by the sense there’s something “wrong” or “missing” in our lives—that we’re sacrificing far more of ourselves than other people in order to get by and receiving far less in return.

Throughout, I will also refer to Autism as a disability. Disability is not a bad word, because being disabled is not a shameful thing. We are not “differently abled”—we are disabled, robbed of empowerment and agency in a world that is not built for us. “Differently abled,” “handi-capable,” and similar euphemisms were created in the 1980s by the abled parents of disabled children, who wished to minimize their children’s marginalized status. These terms were popularized further by politicians who similarly felt uncomfortable acknowledging disabled people’s actual experiences of oppression. These words obscure reality and reflect a discomfort many people have with disabled bodies and brains. A person who is completely blind is not “differently sighted”—they lack an ability that other people have, in a world that was designed by and for people who can see. The world actively dis-ables people by failing to provide accommodations they need. Naming the reality of disability shows respect for disabled people and awareness of how we are oppressed. “Differently abled” attempts to erase that behind a cutesy euphemism, and many of us find the term offensive.

Medical denialism rears another of its ugly heads

This cold is fucking with my circulation but at least my period came, I feel more clear headed already

I had my second foot surgery today. Still need one more. But they cleared the worst of it today, I’m glad at least that much is over. Might be an unpleasant recovery, they said it could take up to 16 weeks. I can’t wear shoes other than open toed sandals for at least two weeks and mustn’t get the bandages wet, which is difficult in this weather, I don’t know if I’ll be able to go out at all.

First!!!

I think I have too much on my plate regarding activities outside of work. Currently, I’m trying to get an app uploaded to the Play Store, I’m trying to finish a website for a group of friends, getting ready to revamp a website for our local NAACP(big deal), started working on a new volunteer FOSS app that is aiming at being a competitor/replacement for TikTok called Pebbler by a co called Astreth(I think I can advertise them now since they are working on scripts for just that), Food Not Bombs, and also a job.

But also also, I had a fairly successful inaugural meeting this past Saturday for my book club I’m doing to promote the new PSL branch that I’m starting in my city. We had 3 people show and there are 2 more that are interested and they are already comrades. Like they all were very much on the same page with the material. It was really kind of amazing. I had a small anxiety attack after so my evening was shot but I did it! I started something and it might actually take off. I really hope it does because we feel like can do a lot of good for this community.

Forgetting to charge your headphones so they die on a work day and you have to go the entire day without them (me, I still have a few hours of work left)