Disabled Community Megathread from June 30, 2025 to July 13, 2025
If you carry one thing with you today, let it be this: you are beautiful, you matter, and you are loved.
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"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.
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257 comments
Haven't been very active the past couple of days as my laptop charger died, but someone came through and helped me get a new one.
It seemed OK at first but then I had a bad 24 hours after my surgery, much more bleeding and pain than usual, but it seems to have died down to a normal amount of oozing and not much pain now. And they had a cancellation so they've moved my next surgery forward to the 24th.
But for the past few days I've had endless tingling and pins and needles in my legs and feet. I don't think it's related to the surgery. I'm wondering if it's related to my hair loss as both these things started very recently. So bloody difficult to get medical help these days though.
And to top it all off: I mentioned a while ago that I take an anti migraine med that can cause autism and ADHD in your child if you get pregnant while taking it. For this reason the government now says women who take this drug must also take birth control. I had a big battle fighting against having to take birth control and I thought it was finally over - now they've started sending me messages demanding I make an appointment to get birth control, again! I am furious. I am asexual, I am going through perimenopause, I'm a stroke patient so hormonal birth control would be very dangerous for me and I don't want a coil - being forced into a painful and degrading medical procedure against my will. This is sexual discrimination plain and simple. Just because I'm female I have to take drugs I don't want or have my migraine meds taken away? Not to mention the fact that society must really hate ADHD/autistic people if they are this desperate to stop them from being born.
I have written to my local MP to complain about this but he is useless, I'd be amazed if he even replies.
glad you got a new charger!!
god that thing about birth control is absolutely crazy. i started taking birth control again (for pcos, im also ace) and that shit sucks ass. i just love that the government can control a woman's bodily autonomy like that. and it's over ableism too. absolutely disgusting nonsense
Yeah I mean, blood clots, strokes, cancer, thyroid problems and headaches are just a few side effects of the pill but hey, it's better to suffer that than to bring an autistic child into the world!
Hey love, I'm glad you got the charger situation resolved
As to the medical stuff, holy shit, not even recovery lets you rest up, does it? I hope getting the blood work will turn something up concerning the pins and tingles. Take care.
Thanks.
Yeah now I've had another thought. I'm wondering if this tingling could be some adverse reaction to all the local anaesthetics I've had in my feet these past few months. I suppose I'm going to have a battle getting a doctor's appointment and they might be as useless as the doctor I saw last week and do nothing.
Good grief, I remember when you first posted about having to fight them on that medication the first time. I hope it goes in your favor comrade, it is absolute nonsense to put you on something that will have no benefit.
Did anything ever come from your recent bout of tests you got done? I'm catching up on the comments, but I'm glad you were able to get the cord for your laptop, and that they moved up the next surgery. Hopefully you can get some relief from the tingling and pain soon. Really hope it's not like an allergy or something. Sending hugs and peace, love.
I haven't been contacted about the blood tests results yet. I don't know whether it's because there's nothing to report, or because the GP surgery is such a shambles now, or whether they're waiting for the endocrinologist to deal with it.
However I am amazed to be able to report that I got a response from my MP already. Last time I contacted him he didn't respond for 4 months. This is what he says:
*Thank you for your email regarding this matter, I deeply regret hearing about the challenges you are currently facing.
I have contacted the Secretary of State about this matter and I am awaiting a response.
In the meantime, if you have any further concerns or questions please do not hesitate to get in touch with me if you feel that I could be of any assistance.*
Maybe if they have to debate this in parliament I could get the law changed! Or maybe they are so desperate to prevent the births of more ADHD/autistic people that they will refuse to change it and force women to keep getting contraception anyway.
That's actually decent news about the MP response! I really hope it pans out, that would be wonderful to have that actually addressed. Fingers crossed that your results come back soon, and you can get some answers.
I got the blood tests back today, and they say there's nothing particularly wrong, everything is more or less within the normal range. Slightly reduced kidney function and very low TSH but my TSH is meant to be kept low to prevent the cancer from coming back, so that's acceptable. The pins and needles are constant now though. I managed to get an appointment with the nurse, she said she'll ask the GP and see what he thinks but she thinks it's not a big deal. OK so over the past 2 weeks my hair has begun falling out to the point I have bald patches and I now have permanent pins and needles but according to medics, everything's OK, nothing to worry about and they have no idea what the problem is. Very helpful, as ever.
That's utterly disappointing. I'm so sorry they're not taking you seriously and that it's such an uphill battle. I mean, it's obvious your body is telling you something is going on. You deserve better. Maybe that upcoming GP appointment will provide some answers or get you closer to a treatment option. Hope you're hanging in there okay, love, and that you're able to get some rest despite everything.
Thanks, but it's actually really starting to freak me out now. It just won't go away and this is even scarier than having cancer. I'm worried I could lose the use of my legs or something. And if it still hasn't resolved by Monday, I think I will have to cancel my upcoming foot surgery. it just doesn't feel safe at all getting this area injected with a load of local anaesthetic when I am having these problems.
Definitely do what you think is best. Your comfort and care are the most important.
Thanks.
I don't want to cause panic, but the tingling and pins as well as nothing out of the blood work makes me think this could be neurological. Maybe it's a nerve that is locked or wedged in?
I was thinking something similar. The tingling is spreading into my hands now. I think I'll phone the neurologist on Monday and ask for an appointment although god knows how long that will take. I don't have the energy to go and sit in the emergency department for 10 or more hours waiting to be seen. I've had this tingling feeling before, recently prior to and during migraines but it was just in one side and went away when the migraine did.
Yeah, sure, hair loss like that is totally normal, no biggie. What a joke. I'm sorry you have to go through this again.
In all seriousness, maybe it isn't something in your blood? Or maybe whatever is missing wasn't covered by thr tests done?
If I manage to find out where my hair loss is coming from, I'll let you know.
Thanks. Yeah the doctors just don't seem concerned about bald patches suddenly appearing at all. That's why I had to google "hair loss blood tests" and trick them into doing them. So it's possible there might be other tests that I don't know about that could be done. But I have an appointment with the endo in August, maybe she might say something about it, although I doubt it. This is exactly how they kept fobbing me off, for over three years, previously and in the end it turned out to be thyroid cancer. It's just so hard to get taken seriously, no-one cares, although right now I'm much more worried about the pins and needles.
I sympathize, love. And I'm sorry you're being ignored again. Wish I could do anything to help you out
Thanks. Having someone to talk to is a huge help. I don't have anyone to talk to in real life. If I ever mention a complaint about my situation to my landlady she acts like I'm living the high life, saying I get free money and don't have to do anything. Ignore the fact that I don't get any "free money" until my appeal, and the fact that my entire life had to be ruined to get this "free money."