Hello everyone.
As always, we ask that in order to participate in the weekly megathread, one self-identifies as some form of disabled, which is broadly defined in the community sidebar:
“Disability” is an umbrella term which encompasses physical disabilities, emotional/psychiatric disabilities, neurodivergence, intellectual/developmental disabilities, sensory disabilities, invisible disabilities, and more. You do not have to have an official diagnosis to consider yourself disabled.
Mask up, love one another, and stay alive for one more week.
Just got back from my most recent foot surgery. It’s spread and the left one was worse, also they were meant to book me a double appointment but had only booked a single, so they couldn’t get as much done. They just did part of the left one today. So they’ve booked me three further appointments, July, August and Sept. July they can clean the worst of it and the next two will be for a final clean and so any hint of it returning can be cleaned before it spreads and hopefully that will finish it for good.
So now I’ve had to make another mutual aid post for help with that. People are going to get sick of me but I don’t know what else to do.
Because of touching it, and touching clothes the infection has touched etc, it has spread to my right hand now too. This isn’t the first time and it’s never been so bad with the hands. That’s just being treated with a topical ointment. But it’s disgusting and exhausting though, dealing with this. And going to a different hospital further away wasn’t easy, my landlady drove me in exchange for petrol money, thankfully someone came through on that. But the satnav didn’t help much with finding it and my landlady was pissed off about how long and difficult it was to find. I will have to book hospital transport for next time as the next appointment is also at the further hospital.
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Despite my slight headache I’m feeling much better today than I did yesterday.
Happy to hear you’re doing better, love
I posted on here recently about a migraine that started as a weird menthol-tingling in my crotch. Well, it’s back except in my feet. It started as a headache and numbness in the face, and a migraine pill got rid of the headache (mostly) but the menthol tingling has taken over my feet and part of my legs and won’t go away and the facial numbness keeps returning. What’s left of the vision in my right eye seems to be affected too.
When will they legalise euthanasia here? You wouldn’t keep a dog alive in this state.
Are you diabetic? What about any vitamin deficiencies?
No, I’m not diabetic. I get tested quite regularly when I got to the endo for my thyroid issues. And I have been diagnosed with multiple vitamin deficiencies and prescribed supplements previously. But since I started getting help on mutual aid I’m not starving any more so the root cause of the deficiencies should theoretically be gone.
It depends on what you’re eating. The menthol tingle could be a b12 or b5 deficiency and even if you’re not starving the exact diet could be an issue, or your medication could cause malabsorption (I don’t know your medical regimen). plus if you already have had vitamin deficiencies it probably takes more to get things back in balance and keep it there. Although you’d have other symptoms too. If it’s not a diabetes or a vitamin deficiency I would have said it sounds vascular, especially if you have limited mobility, but the face is throwing me there. Eh, I’m not a doctor and I probably can’t help. But most of the things that cause those kinds of symptoms are manageable, and you’ve already shown you can handle a lot of stuff. It’s not for me to tell you how to feel about stuff, but I think when you’re feeling things like how a dog would be put down in your place, it’s worth bearing in mind just how much you can and have handled.
I get B12 shots, but the B5 could be something to look into, they never tested me for that. Malabsorption could definitely contribute, and I have a very restricted diet due to the fact my cancer treatment has caused me to develop many food intolerances.
As far as being able to handle stuff, it just keeps getting worse. Within just the last few months my already terrible migraines have turned into hemiplegic migraines (which are like having a stroke, one side of my body stops working and feeling), and my mobility situation has gotten so much worse I am basically housebound apart from being driven to the shop and going in for a few minutes (and with todays foot surgery I’ll even lose that for a while). I’ve been having issues with my thyroid meds again lately too. Whenever I think to myself “OK, life is bad but I can tolerate this,” the universe says “OH REALLY?” and makes it even worse.
And that’s just the health, never even mind the financial issues that come with being disabled. Even on top of debt, a benefit appeal, now it’s even getting more and more difficult to get an adequate response to my mutual aid posts. I’m totally out of sainsburys vouchers and it’s gotten to the stage I have to make multiple posts to get a response. I don’t know how I can handle any more but still shit just keeps coming my way.
the deficiencies should theoretically be gone
Yes and no, it depends on how long they lasted beforehand and how much & long you’re supplementing now (have that issue with iron, I’ve been taking supplements for a year and the levels are only now starting to go back up).
From how you describe it, I’d guess it might be something that’s tied to neurological functions that is not being supplemented enough. I’m no expert tho so please do take this with a grain of salt.
Tbh there are a couple of the supplements I haven’t been taking religiously due to the side effects. I hoped eating enough would fix the issues but maybe the damage is too far done already anyway.
I don’t think it’s done yet. The body can withstand a lot, and finding the right way to supplement the vitamins that are missing will make a difference. The question is really, can you get different types of supplements
On the NHS, unlikely but I could ask.
Give it a try, I’d say
In the past week I have eaten [half bowl of soup] and [less than 200 grams of protein substance] and the occasional leftover bread that’s hard, I’m barely sleeping and my memory is getting worse.
I fear for a day that people would be right to not trust me for my decisions, as for the day I lost my trust in myself was years ago.You gotta eat. Can you not afford food or do you have some other issue?
The disgust leaves me with no apetite
Any good history books on the ancient china warlord period during the end of the Han dynasty?
I borrowed a book on how to draw and am going to spend the next two hours practising. I will keep practising for two hours every day until summer break is over.
I want to learn to draw too! Which book do you have? I’m looking at doing Brent Eviston’s online courses if I win my benefit appeal and finally have some money.
it’s not in English and based on 4 hours of practise it isn’t working anyway. Although tbf I haven’t really drawn since I was a pre-teen
Yay, you got this!
Looking at the result of two hours of work I absolutely do not have this. But thanks for the support.
It’s the first two hours, don’t be too hard on yourself. Nobody’s truly good at anything when they are starting out. You’ll get there
Update on my healing journey: I am more painfree than before, but I also haven’t worked out these recent days bc the hot temperatures were making my surgical wounds itch and pulsate. I guess they don’t like the heavy blood flow. But it’s okay.
Now I just got my period again and the cramps are so much worse than the last few times. I’ll be over here, melting into a puddle.
Glad you’re a little better at least, hope the cramps ease soon.
Thank you love
Itching is a natural part of the healing process, so itching itself isn’t the worst thing. I don’t know if that’s a comfort though. You should ask someone to bring you goodies and rub your back during your period, I believe having someone do that is in the human rights charter somewhere.
My doctor told me the same thing, so I’m not worried. It’s just annoying, you know? Having an itch you can’t scratch lol
And I don’t think it’s in the human rights charter, but I sure think it should be in there.
I’ve just realised, I think I’m going through a midlife crisis. Lately I’ve been rediscovering the EDM music I used to listen to in the 90s, can’t stop watching youtube videos of people clubbing in the 90s (the decade I started going clubbing) and watching videos of all the parks and streets I used to hang out on when I was young. Longing to go back. Wanting to change things and gaining new interests.
I’ve just received the date for my next foot surgery, it’s this Friday. I thought I’d be on the waiting list for months but because of my state of health etc, they gave me a much sooner appointment at a much further away hospital. My landlady angrily agreed to drive me if I pay for the petrol and parking costs. So that’s the third mutual aid post I’ve had to make already this month. I’m always worried people are going to get sick of me but I don’t know what else to do.
I’m glad you’re able to get in to get the surgery, fingers crossed it’s the last one for a while. I’m sorry landlady is such a shitty, abhorrent person. Hopefully it works itself out and you can get the help you need. Sending some positive energy your way, love.
Thanks so much. They actually offered me a cancellation for tomorrow but she said it’s too short notice to drive me so Friday it is.
Good luck for the surgery, and I’m also sending you positive energy. Take care, love
Thanks you x
choice between waiting 3 years to get an autism diagnosis and access to help i need or paying $3,000
That’s an insane price for a diagnosis. Like wtf
where i live the price range seems to be $3000-$5000
i don’t know why autism is gatekeeped this way when adhd isn’t they’re like uber comorbid
It doesn’t make much sense, no. Would you be fine with waiting for 3 years for the diagnosis, however?
idk, not 100% sure how much it will help me tbh
there r some gov programs that help with employing disabled people and obviously financial aid but they keep ghosting me anyway
Well, you could be put on the waiting list and even if it doesn’t help with employment, at least you’d get confirmation from a professional, eventually. Idk if that would be helpful to you, but the waiting list also allows you to drop out and you wouldn’t have to pay such insane amounts of money for it.
yep that’s my current plan, thanks for the help
i think my parents r also looking into if they can get their insurance to cover a private assessment if they list me as a dependant or something so we’ll see
Considering how badly understood patient communication is, I almost want to learn to draw to make one of those “Difference between equality and equity” comics but for the difference between compliance, adherence and concordance* in medicine.
*Latest fad
But then I also realize that a great many doctors do not and have never given a shit about concordance.
It sounds like a good idea, despite the doctors being that way.
As someone who’s only ever been on the patient side of things, what is concordance in the medical sense here? What sets it apart from compliance and adherence?
Warning I’m going to be simplifying things a lot with regards to medical treatment. Medical treatment obviously refers to more than just taking a pill or doing an exercise, I’m trying to keep this light and as widely applicable as possible and you can feel free to substitute any intervention as necessary and you can obviously ask me to clarify or question or correct my wording. Also a lot of the wording may seem like I’m talking about non chronic situations but it applies equally.
Compliance refers to how close a patient adheres to the agenda set by the medical professional. It’s whether you take your medication as prescribed by your doctor, whether you do the rehabilitation as told, whether you do all the exercises your physio showed you. If you aren’t compliant you are not doing as you are told, if you are compliant you do as you are asked.
Adherence is active participation in an agenda. So if based on guidance from a medical professional you make lifestyle changes and stick to them even when not watched you are adherent. Adherence is you making a habit of taking your pills, it’s making and following an exercise plan, etc.
So in other words if you don’t take a pill your doctor is telling you to take you are non-compliant, if you haven’t made a habit of taking your pills as part of your regimen you are non-adherent.
Concordance is the agreement between a patient and a medical professional with regards to their agenda and their understanding of their own disease process (uhh i forget what the english name for that is). It refers in totality to the process of aligning the doctors desired agenda and the patients desired agenda, the level to which the two are in alignment and the patients engagement with the plan set forth. So in order to have concordance a medical professional must take into account the physical, social and psychological premises under which you exist and help you reach a treatment plan and a common agenda. Conversely you must as a patient be an active part of the planning of your treatment plan, advocate for your needs, and be honest about your ability to follow any plan and vulnerable enough to take it into account when making a plan and in your discussions with a healthcare professional.
So if you are actively changing your schedule to accommodate a treatment plan you think is ridiculous and which does not account for you as a person outside of the immediate list of symptoms you may be adherent, but there is no concordance. But if you helped set your schedule and as a result feel engaged in your own treatment and wish to follow it, there is concordance.
Some people point out that the framing of adherence and concordance puts a lot of responsibility on patients rather than doctors, and that it may be a way to avoid responsibility for the outcome of patient care. Others point out that a compliance based model limits patient autonomy which is supposed to be a core value of patient care and is likely to be less effacacious.
First of all, thank you so much for the explanation, I don’t think I’ve ever had anyone explain “medical talk” this explicitly to me.
Secondly, you are really good at explaining these things even though English isn’t your native language. You’re doing great both linguistically and medically.
And finally, I totally see now why you would be running into a brick wall with these definitions and how doctors don’t take that responsibility seriously enough. It’s a difficult topic, but I think a comic could really help explain this stuff better. You should give it a try
If you ever have any questions about jargon I’m always up for explaining if I can, I think patient communication is super important and I think as patient you have the right to know what’s going on (But I can’t provide any kind of medical assistance through the internet, both because I am unqualified to diagnose anything, and because it would be irresponsible even if I were qualified.). Now I’m making a summer project out of learning to draw better, even if I never become good enough to draw that comic it at least gives me something to do.
I appreciate the offer, thank you! And I’ll be sure to ask a local doctor for medical advice.
By the end of summer you’re probably good enough to draw the compliance-adherence-concordance comic, you’ll see
I don’t know where else to post this.
I’m basically organizing between 4 different groups. 3 are local and one is the PSL. One group is essentially an offshoot of the local crowd from the 50501 protest last week, so basically running the gamut between lib and… radlib. Another group is mostly anarchist with me and 1-2 others that identify as Marxist. This group is very much in motion. The 50501 one is trying to figure out direction and currently want to focus on ICE rapid response. I have some tech experience and offered to help. A few of the others from the anarchist group are also involved. It’s sort of a coalition, right?
Well, one member of the 50501 group is onboarding for the PSL chapter I started. Another potential member contacted the cops regarding 50501. I freaked and told PSL to no onboard that person because of the current situation with the FBI as it is. For some reason the person already onboarded decided to tell the rest of the 50501 group that I was collecting data from them and reporting it to the PSL. I do not know why they think I’d even be doing this. Why would the PSL even care or need the data? I woke up yesterday am to find that I was removed from the 50501 group and spend all day yesterday piecing together why. What I realized was that the onboarded person didn’t seem to understand that since I was the person onboarding for PSL, I already have a list of potential candidates. I don’t know how that got lost in communication but I guess it did. They ran off to tell 50501 group that I was collecting data wen it was literally me just saying I don’t want to go forward with onboarding this particular person for security purposes.
Well, now I’m kicked from that group and still don’t quite know how I feel about it. I was early in planning to do a reading group with a few of the people there to introduce them to Marxism and try to help radicalize them since a 50501 brunch lib protest isn’t gonna do shit but let them wave a few flags and yell a bit. In any case, a friend in the anarchist group and I pieced together the whole story and they plan on talking to the person in charge of the 50501 group tomorrow to try and resolve things. And I’m trying to figure out how to talk with the nark that was onboarded to PSL. They literally did exactly what they accused me of doing and it’s leaving a bad taste in my mouth since I considered them a friend.
Above all, I hate how high school drama this whole thing feels.
Thanks for reading my wall of text rant. I need a fucking hug.
This is so infuriating to read, but I do believed you’re doing the best you can. Take a deep breath, you’ve got this.
As far as the nark is concerned, I do not know how I’d handle this, but if you think talking to them is a good idea, do it.
Currently the plan is after my friend talks to the leader of the 50501 group, I’m gonna see how that goes and then either message PSL higher ups and talk about dissolving the chapter or removing the nark. Friend, who is all about direct communication suggested talking to nark and explaining the whole thing and asking their side of the story and I’m considering that but I need to cool off first.
I feel like I wasn’t great at vetting people, but also there is a weird dynamic with the anarchist being vocal about PSL(because, I mean they are anarchist and the schools of thought don’t jive at time). I don’t blame them for expressing their thoughts but I think it chased away someone I was gonna put in charge while I took a step back to focus on the Food co-op project. Now that’s also seemingly off the table. I thought I was organizing material but this is really starting to feel like burnout and I don’t think I can afford that right now.
At the end of the day, I have a screenshot of the city’s PSL chat for leverage since the nark won’t be able to bring receipts. I might need to ask if the higher ups are ok with the screenshot. It doesn’t have any sensitive info but it’s literally like: nark joined May 30th, I posted about removing cop lover June 14th, and that’s literally it.
I hate that I’m spending so much energy on something so stupid though.
Oof, this is rough comrade. It really sounds like a cop sympathizer managed to scare everyone and cause trouble. I’d say take care of yourself first, since you’re much more important to the cause than the excess of bodies. We need good organizers, and you obviously are one. Know that your efforts are making a difference against an uphill battle! Hope you can recuperate and re-ground yourself for a couple days before you have to deal with this again. Rest up, comrade, you deserve a refresh.
Your comments are always appreciated
dm me if you need help with next week’s mega.
It just costs so much energy to deal with this bs. I like your plan, but I agree, this is bordering on burnout. You need a break and the nark thing really doesn’t help.
Please take care of yourself
I hate to say it but I’m really thinking I need to just move away from the PSL. Our chapter is dead in the water as it is and there was some early drama that threw a wrench in the initial onboarding anyway. I wanted to find someone to step up so I could focus on more hyper-local project. We have situation where our local government is tyring t erase our uhnoused instead of giving them proper help, and we are working on the food co-op and a few other projects. There isn’t a lot of us in this group so it’s taking a huge effort of all of us together just to do these few things.
Maybe that’s the way to go then, focusing on the local group and helping the unhoused. To me, it looks like you’ll be able to do more good there in the long run.
But, ultimately, it’s your decision. And if you think moving away from the PSL is a good idea given the circumstances, I’d say do it.
You may have stuff you need to do, but have you considered that if we don’t make it impossible to cross from one side of the city to the other it’ll hurt the bikes feelings.
Anyway I’m opening these fucking barriers and if one of these security dweebs tries stopping me I’m just gonna steal the entire barrier you fucking watch me.
YEA SURE LETS SHUT DOWN ALL FUCKING PUBLIC TRANSPORT IN A MAJOR CITY TO PROMOTE BICYCLING. THAT MAKES SENSE. ALSO YOU CANT WALK WE’RE LITERALLY BLOCKING YOUR ABILITY TO WALK ACROSS MAJOR ROUTES TO MAKE ROOM FOR BOTH THE BIKES.
