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Semi Hiatus.

@thefibrodiaries / thefibrodiaries.tumblr.com

Katie. 20s. She/Her British. Bisexual. Capricorn. I pretty much made this side blog to talk/rant about anything chronic illness related. CURRENTLY DIAGNOSED WITH FIBROMYALGIA, HEDS, POTS,COMPLEX PTSD, POSSIBLE ENDO + co-morbitities . (Main/Fandom Blog: margaerytyrels) my posts are always ok to reblog unless stated otherwise.

so since it’s been so long since I’ve updated this blog or used it regularly and I want to get more involved in the chronic illness community on here, I thought I’d reintroduce myself:

I’m Katie, I’m from the UK (not England) and I’m bisexual.

I’m currently 26 and started this blog at 18 looking for a sense of community and somewhere I could rant about chronic illness, ableism and my experiences.

I have Fibromyalgia (as you may have guessed) Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome,

I’m currently occasionally volunteering for a mental health charity and I write articles for their website. I may post some of them here as I’ve written about my disability issues too. Pre-Covid I started to create a social group for isolated young people in my area which officially started in 2019 but is currently under construction (thanks ‘Rona)

This is a sideblog, my main is my fandom blog @aryasansa (my tv/film related interests can be found there) if I’m following you or replying to you it’ll be under that username!

Anonymous asked:

Happy disability pride month either this year or next July! <3 I decided this needs to be more of a thing and get more visability about disabilities, chronic illnesses, mentally illnesses, and any other physical or mental problems which get in the way of people being seen!

Happy disability pride month to you too and you're absolutely correct there needs to be more awareness. I actually wrote a local article about it here

Patient: *has a bunch of different symptoms without a clear cause*

Doctors on medical shows: right I’m ordering every single test or scan available, I want a specialist from every department paged to take a look at this case and I want this group of interns looking into every possible rare disease that this patient might have. We won’t let this patient leave until we’ve gone above and beyond to help them. Let’s go people!

Doctors in real life: lol idk the three basic blood tests I did came back normal so it’s probably just in your head or something.

Doctors in real life: have you tried losing weight?

Fellow white disabled people - please stop comparing ableism to racism. I see a lot of “*example of ableism* is just like *example of racism*” they aren’t the same thing and they aren’t comparable, even if they were, us white disabled people are not qualified to make that comparison because we do not have the experience with racism to understand what we are comparing our experiences to. We can make our point about the ableism and injustice we experience without bringing racism, or any other kind of descrimination we don’t experience, into it.

Anonymous asked:

Hi! Sorry to bother, noticed you have a hogwarts house in your bio and thought i shoudl give you a warn. Love your work standing up for people with fibro but the terf who writes those books has openly said she thinks anyone who still likes her work agrees with her and just doesn't want to say it out loud, so if you're wondering why you don't get much engagement from trans people, might be that which is scaring them off. It's become a bit of a big red flag.

Not to say there's anything wrong with you, obviously, you seem a decent person, it's likely just a case of not knowing how upsetting it can be, so like, i thought I'd let you know, just in case you ever go "i wonder why trans people are reblogging posts avoiding my additions" or anything like that. It's not a you thing! It's just that unfortunately little things like houses give off big warning labels these days, even though i imagine you're all for trans people.

Anyway, have a nice day and take care, and know that if people are sort of going around you, it's not your fault, it's just some words feel inherently unsafe these days.

HI, I am really sorry. I haven't updated my bio or pfp on this blog since 2018 when I went on semi hiatus and haven't engaged much with this blog in a while (which is why I don't always answer asks or comments or answer them really late) I stopped reblogging her work on my main fandom blog @aryasansa when she started with the terf stuff and I removed the house from bio on that blog ages ago but I completely forgot that I had it on this blog as I haven't edited it or even posted on it much. I am so sorry to any trans people who have felt uncomfortable by my bio, I should have checked this blog when I removed HP stuff from my fandom blog and thank you anon for sending this ask. The HH has now been removed from my bio. I do not support JKR and no longer have an interest in her work. I want my blog to be as inclusive as possible and a safe space for all so if I ever for example, reblog a post written by someone who has been racist, transphobic etc or if do anything problematic intentional or not, please feel free to call me out on it.

Support disabled bisexuals.

Support chronically ill bisexuals.

Support bisexual children.

Support bisexual people of colour.

Support trans bisexuals.

Support non-binary and genderqueer bisexuals.

Support bisexual women.

Support bisexual men. 

Support bisexuals. Listen to us when we tell you about our experiences and identities. Celebrate with us!

disabled members of the lgbt+ community who don’t interact with the community outside of the internet and who can’t date or go to pride events or go to gay bars and aren’t able to take part in any lgbt activism are still valid members of the lgbt+ community.

THIS IS SO IMPORTANT. Disabled LGBT+ people, we all matter so much. I would add that it’s worth re-thinking our understanding of activism. There’s so much more to it than protesting in the streets. It’s about making people feel seen, valid and worthwhile. That post there by @thefibrodiaries? It’s LGBT+ activism. It’s had thousands of responses and has made loads of people feel like they’re recognised as queer human beings.

This post that I wrote? It’s also LGBT+ activism and has received throusands of responses. I wrote it because it was something I needed to see. It turns out that other people did too.

My disabled, chronically ill and queer identities all exist at the same time. This blog has provided me with the space to develop as a disabled, chronically ill, queer activist. And you know what? If neither offline nor online LGBT+ activism are accessible to you? You still matter. You are such an important member of our community and we need you.

Halsey coming out on their Insta story with their diagnoses of EDS (Ehlers Danlos Syndrome), MCAS (mast cell activation syndrome) and POTS (post orthostatic tachycardia syndrome) is a huge banner moment for zebra & spoonie visibility and awareness and I stan a zebra queen. Thank you for your honest, raw presence here with us.

Hey, unpopular opinion, apparently. But people don’t just “have pain for no reason” doctors say this all the time (especially to women and chronically ill people) and the truth is, Thats literally not possible. Even if your pains are psychosomatic (a word I hesitate to even use because of the way its used so often) there is a reason you are having those pains whether its mental illness, abuse, etc. If your doctor consistently tells you that “well some people just have pain for no reason” get a new doctor. That’s a doctor who is not going to give a shit what your actual symptoms or experiences are.

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I just wanna add to clarify the psychosomatic thing.

That word DOES NOT MEAN you’re making it up. It doesn’t mean you’re imagining the symptom. What it means is that the symptom ISN’T DIRECTLY CAUSED BY ANY OF THE THINGS THAT WOULD NORMALLY CAUSE IT.

I fought to get a PCOS diagnosis for 2 and a half years. For the ENTIRE time I was fighting, I was dealing with 3 cysts that were not going away by themselves and eventually required surgery to remove. At one point close to the end of the battle, I suddenly went blind. I was visiting my parents and was standing on the veranda looking out over the tree we had planted in memory of my dog and suddenly I got one of the shooting pains that I was quite frankly used to at that point and my vision started to go dark. It was like the sun was setting while being completely hidden behind storm clouds but it was 2pm in the middle of Summer on a clear day. Within about 30 seconds I couldn’t see ANYTHING. I was 27 years old and I was screaming for my mother.

My mum raced me to her doctor (he was a 15 minute drive away as opposed to 45 minutes to the nearest hospital) and he quickly worked out that there was nothing wrong with my eyes and what had happened was totally unrelated to them. Then he said it was psychosomatic and I freaked out, yelling that I was NOT making this up and I definitely wasn’t imagining it. Very quickly he calmed me down and said he believed me and I had misunderstood. He explained that whatever was going on with my abdominal pains (he suggested PCOS which I hadn’t even heard of at that point) had been ignored for so long that my body was starting to do things other than the normal pain response to try to draw my attention to the problem. My sight going was my body basically jumping around in front of me going “HEY ARE YOU EVEN LISTENING TO ME HELLLOOOOOOO??????”

He gave me some prescription strength painkillers and my sight started to come back as soon as they started to kick in. About 45 minutes after it started I could see well enough to walk around without help and within a day and a half I was back to normal. On top of that I finally had a scan booked to figure out what the hell was causing all the pain.

Psychosomatic symptoms are NOT imagined or fabricated or happening for “no reason”. Experiencing them DOES NOT make you a liar. It makes you someone who has been battling with something serious for so long that your own body has started to get impatient with you.

I completely agree. Thank you for sharing this.

Psychosomatic symptoms are literally your body flipping random alarm switches just to get any alarm blaring because you’ve been ignoring the regular ones

Patient: *has a bunch of different symptoms without a clear cause*

Doctors on medical shows: right I’m ordering every single test or scan available, I want a specialist from every department paged to take a look at this case and I want this group of interns looking into every possible rare disease that this patient might have. We won’t let this patient leave until we’ve gone above and beyond to help them. Let’s go people!

Doctors in real life: lol idk the three basic blood tests I did came back normal so it’s probably just in your head or something.

Fellow white disabled people - please stop comparing ableism to racism. I see a lot of “*example of ableism* is just like *example of racism*” they aren’t the same thing and they aren’t comparable, even if they were, us white disabled people are not qualified to make that comparison because we do not have the experience with racism to understand what we are comparing our experiences to. We can make our point about the ableism and injustice we experience without bringing racism, or any other kind of descrimination we don’t experience, into it.

Hey all! My friend Luna is going in for gender-affirming surgeries over the next four months, two in succession, and needs money for recovery. So far a good portion of the fund she has been raising has been going to costs of living, as they are a tattoo artist whose practice has had to be halted in the wake of COVID19 and a recent chronic illness diagnosis. She still needs more.

Luna will be in recovery from the first surgery in about two weeks for about a month and will need money for groceries (especially soft foods) and to pay rent while she cannot do any heavy lifting or a lot of walking. So working is out.

Luna is beloved in the community and is incredibly giving, on their way to becoming a knowledgeable medicine-person. Please help them! Please reblog this or give what you can. Even a few dollars helps.

If it's easier for you, Luna's venmo is @roseee666 and the pfp is a wolf howling with a moon in the background.

so, new fun twist in my life- my estranged dad died and since i'm his heir i'm trying to deal with his estate, which is a complicated mess and has thrown off all of our schedules, and my partner has been driving me around because i'm too disabled to drive, so he hasn't been able to work, and we have rent and new expenses, including my dad's cremation costs, so now i have to come up with thousands of dollars out of nowhere and our main income is gone. i'm nonbinary and disabled and i'm not sure how i'm gonna get through all of this. please help us, the pandemic has been so hard and now everything's ten times harder and my dad's dead

cashapp- $kateclrk or ask for vemno

10/13- $0/??

10/14- $0/?? this is all so stressful and any little bit helps so much ;_;

10/15- $30/?? thank you so much to the people who've boosted and donated!! we still have to come up with thousands of dollars (it's so overwhelming i'm not sure how much yet) and my partner's motorcycle tire is going flat and we need to replace it to be able to do anything. that alone is $2-300 we need asap

Taking medications that help you is good. Using mobility aids or other assistive devices that help you is good. Respecting your own limits to maintain your health is good.

Be proud of yourself for taking the steps you need to take care of yourself, and ignore anyone who doesn't understand the importance of this.

I get so frustrated when people act like "Yesterday you used your cane on the left and today you're using it on your right!" is a gotcha and they've caught a Fake Disabled?

Not that I owe anyone an explanation, but I don't have permanent limb damage. I have a few conditions that get worse with exertion and use. Yesterday my left hip was acting up so I was supporting it with the cane and compensating with my right. Today my right hip is having a whinge about it. You'll also catch me shuffling around without any mobility aids because my arms cannot handle all the extra work that goes into lugging my ass around wherever I need to go.

Sometimes I use a cane, sometimes a rollator, and sometimes even a wheelchair if I have someone to push it for me. Sometimes all three in one day depending on which part of my body is currently fucking up the most.

It is NOT your job to police people's use of mobility aids. Nobody owes you an explanation, assume there must be one and mind your own business.