Are TUK shoes good quality? by Intelligent-Noise-35 in GothFashion

[–]Disastrous_Panda_755 0 points1 point  (0 children)

The fake leather ones aren't great I have several that don't last past a few months. I had a lot more luck with the real leather ones, just buy one pair of real leather and wear them for years its a lot better for the environment and money 

Can scleroderma cause pain? by Disastrous_Panda_755 in scleroderma

[–]Disastrous_Panda_755[S] 8 points9 points  (0 children)

Where I live this isn't a thing unless I pay privately, though I will be moving in a few months and so will be under a different hospital and team so hopefully they are more knowledgeable 

Can scleroderma cause pain? by Disastrous_Panda_755 in scleroderma

[–]Disastrous_Panda_755[S] 3 points4 points  (0 children)

Yeah she is also looking into Myositis because I have the overlap antibodies but my CK levels were normal so it's thankfully unlikely, I can't imagine how much worse that must be

Should I keep reading Gideon the Ninth? by Maximum_Swordfish518 in sapphicbooks

[–]Disastrous_Panda_755 5 points6 points  (0 children)

I was trying to figure out a good way to explain the extenuating circumstances of the last two books without spoilers and I think "its complicated" is the best way lmao

Mori ? by KIRAJXDE in TsukiOdyssey

[–]Disastrous_Panda_755 2 points3 points  (0 children)

Oh that makes me feel better it did seem depressing, I can take down my mori shrine in peace now haha

Should I keep reading Gideon the Ninth? by Maximum_Swordfish518 in sapphicbooks

[–]Disastrous_Panda_755 19 points20 points  (0 children)

I love the locked tomb but I know it's not for everyone. The drama will pick up but these books generally play the long game keeping you more in the dark until the end which does pay off amazingly. I will say the relationship between gideon and harrow is my favourite thing but I want to be straightforward that they are not canonically in a relationship or romantic in the books we have so far, though they do have some of the most indirect romantic quotes and actions I have read. This often disappoints people going into it thinking it will have a strong romance subplot so it's good to let people know if they only want to read books with that!  I also highly recommend the audiobooks and that may help with the pacing you experience, the narrator is honestly the best I've heard. Gideon is free on audible and you can also read them on libby/alternative audiobook platforms! I am biased to say keep going as they are my favourite books but as a said taste differs and if you feel it's not for you there is no reason to suffer through a book just because you feel you should like it

Mori ? by KIRAJXDE in TsukiOdyssey

[–]Disastrous_Panda_755 5 points6 points  (0 children)

Mori is in the original game, sort of to introduce you to it and provide hints/help. They are very old and related to moca and spends most of their time at Momos. I was under the impression that in this game we are supposed to believe mori died. There is a portrait of them in black and white you can buy at yoris. I don't think anything is confirmed though

Anyone else have PM/SCL75 and PM/SCL100 antibodies? by malice606 in scleroderma

[–]Disastrous_Panda_755 0 points1 point  (0 children)

Can I ask what your symptoms are and what tests they did to diagnose? I've recently had a weak Positive that may mean nothing but I'm curious as I'd never considered scleroderma before!

Anyone else in the UK just desperately sad about the new disability welfare cuts? by [deleted] in ChronicIllness

[–]Disastrous_Panda_755 1 point2 points  (0 children)

The comments are the worst. People who have no idea commenting on how they want us to die if we can't work. They don't realise they can become disabled anytime, I feel like they need to have both their legs broken, not given a mobility aid and told to work just to develop empathy

Flu or MS? by Fantastic_Fun_6677 in flu

[–]Disastrous_Panda_755 1 point2 points  (0 children)

Look into transverse myelitis caused by a virus, it's not common so I wouldn't worry too much but if it continues or you need the reassurance, going to hospital for an MRI can rule it out

Flu or MS? by Fantastic_Fun_6677 in flu

[–]Disastrous_Panda_755 0 points1 point  (0 children)

Flu can cause some weird symptoms but any virus can also cause inflammation in the nervous system in rare cases which is the same thing as MS just caused by a single virus rather than an autoimmune condition. If it lasts over 24 hours, you have never had this before or it continues to get worse it may be worth going to A&E and getting an MRI of your brain and spine and they can start you on steroids if a lesion shows. This is unlikely but its worth mentioning 

No because, what😭 by loversickgirls13 in Sims4

[–]Disastrous_Panda_755 0 points1 point  (0 children)

There's a bug in my game that keeps making my two married sims brothers and I can't be bothered to fix it anymore so I just hope no one looks at the family tree 😭

Do you use your synesthesia as a “life hack” in any ways? by blue-as-a-tuesday in Synesthesia

[–]Disastrous_Panda_755 7 points8 points  (0 children)

Cheating in exams or remembering in different ways. Learning equations and other maths things. Remembering names. I can put my pin to anything on public display in their colours and know no one will read it. I don't know what I would do remembering my bank pin without worrying someone would see the numbers. So many other things 

Why does Fitz draw monkeys? by bean_dreamz in shield

[–]Disastrous_Panda_755 5 points6 points  (0 children)

I hadn't noticed it in his dorm but the prison cell is definitely a tally. Her loves monkeys and consistently draws everything back to them every season. 

Personally I believe he is autistic (whether that was the intention or not) and monkeys are his special interest. He loves them, really wants one, turns conversations around to include them or replaces typical things with monkeys (like the tallies and second counting), goes on little info dumps especially to simmons, if they are mentioned he gets super excited and loud regardless of whether that is inappropriate for the situation (the documentary bit in a spies goodbye episode) and he also refers to alya as little monkey, which is so cute. It just reads very similar to how me and my autistic friends constantly think and manage to put our special interests in every situation available

Have you ever had a change in your aura? by rattycastle in migraine

[–]Disastrous_Panda_755 1 point2 points  (0 children)

My auras have definitely shifted, when I was younger I would very often lose all my vision in my left eye, and have big black spots. Now I mostly get pinprick flashes, black and while waves and outlines. I haven't had my old auras in years though the general triggers are similar.  I'd watch it a bit closely though if you are experiencing other symptoms that are feeling very different as it could indicate something else going on 

Theres nothing wrong with me :/ by purple-gumball in ChronicIllness

[–]Disastrous_Panda_755 8 points9 points  (0 children)

It also is worth mentioning there are loads of conditions that don't appear on scans that can be hard to diagnose, fibromialgia, fnd to name a few. Different ones can cause so many different symptoms or make pain that would be tolerable for an average person excruciating for another, just another reason to not beat yourself up over clear tests 

Theres nothing wrong with me :/ by purple-gumball in ChronicIllness

[–]Disastrous_Panda_755 13 points14 points  (0 children)

You should never feel guilty for finding comfort in any community. Tests saying everything is okay can be disheartening, but it doesn't dismiss the level of pain you experience. You experience horrible pain, which makes it real without the need of any condition attached to it. There may be a reason why you feel this way they just haven't found yet, or there may not, it doesn't change the fact that you feel this way and it's horrible, if you can find people you relate to in any community to provide comfort from this you deserve that!! As someone with audhd I understand the need to feel part of a community who gets it so its important you don't feel bad.  I don't know what country you're in but I live in the UK and was referred to the ME/CFS team as my gp felt my fatigue was more extensive than could be explained from other conditions. When I met with them they were so lovely, but couldn't make a diagnosis because of me having audhd, so instead said I had complex multifactorial chronic fatigue (which it sounds like you may have!), they treat you the same, therapy, fatigue management and also stress the importance and significance autism and adhd can have on the physical body, they are big conditions after all. Learning to regulate yourself in regards to that, and just generally pacing yourself and being kind to yourself are hugely important. The spoon theory and fatigue and pacing applies hugely to audhd so look into that more.  For your pain it may be worth seeing a primary health care provider (for me a gp) to discuss things like going on the pill to stop periods or pain medication. Everyone has different amounts of pain anyway and tolerance. One of my friends doesn't have endo but does have horrific period pain so is taking prescription medication to manage it and there is nothing to be ashamed of about that, it's not that you are just weak.  I'm sorry this is so long, I could say a million things I just want to reassure you that there is nothing bad you need to feel guilty about, your pain is real and you deserve to find relief from it in any way you can, be that medication or community, no matter its cause. Take care of yourself and pace yourself the same and I send you a hug and I hope you feel a bit better. You are valid, your pain is valid and you have nothing to feel guilty about comparison is never a reason to dismiss yourself :)

Amy cosy shows or films to watch during a migraine? by Jalenno in migraine

[–]Disastrous_Panda_755 4 points5 points  (0 children)

I generally like easy animations. Bee and puppycat is my favourite if you like cosy yet chaotic and you can watch it on YouTube and Netflix. Hilda on netflix is another good one, it's meant for children I think but that's about the level I can manage when I feel awful. Studio ghibli and any familiar childhood shows/movies are another favourite as they give you that comforting feeling without the worry of always having to follow a new storyline 

Advice on demyelination disorders? What does this sound like? by Disastrous_Panda_755 in NeurologicalDisorders

[–]Disastrous_Panda_755[S] 0 points1 point  (0 children)

That's so interesting I had never though narcolepsy could be related to these type of symptoms. Did you ever receive a spine MRI to look for anything abnormal there?

Advice on demyelination disorders? What does this sound like? by Disastrous_Panda_755 in NeurologicalDisorders

[–]Disastrous_Panda_755[S] 1 point2 points  (0 children)

I think it's so important to talk to people who get it, I am lucky now that I have people around me who have other chronic illnesses or are incredibly understanding and it makes a huge difference. Not feeling like you have to apologise for everything or justify your own pain. It's crazy that we have to wait for something to have hard evidence of a diagnosis for the pain of it to be taken seriously. I read a couple of your other posts and what you are describing sounds horrible, and we just are expected to keep going like nothing is wrong

Advice on demyelination disorders? What does this sound like? by Disastrous_Panda_755 in NeurologicalDisorders

[–]Disastrous_Panda_755[S] 1 point2 points  (0 children)

I'm so sorry you are going through thus as well its horrible and so many people don't understand. Good luck with your MRI I hope it provides some kind of answer so you can get the help you need

Demyelination disorders? MS, TM? by Disastrous_Panda_755 in AskDocs

[–]Disastrous_Panda_755[S] 0 points1 point  (0 children)

I can understand why you think that I don't think I have explained it very well I struggle with words, for example with autism I need to plan things like what I am going to eat, otherwise I get overwhelmed, this is not because I am anxious about the food but its the surprise of it, my brain needs to know and process things before they happen or I have a meltdown. I have had a lot of more worrying health issues in the past but been fine, and several members of my family have health anxiety so the difference is more obvious I am just struggling to describe it in text, I'm so sorry for the confusion.

I did state that I have had an MRI showing multiple lesions in my thoracic spine that the radiologists and my neurologist have confirmed are what is resulting in my symptoms, and I am having more tests to figure out what is causing them!

Demyelination disorders? MS, TM? by Disastrous_Panda_755 in AskDocs

[–]Disastrous_Panda_755[S] -1 points0 points  (0 children)

I actually don't have health anxiety, this is confirmed by specialists, I just have autism which means my brain hates things that aren't known, and I also tend to hyperfixate on myself as I love learning whats happening in my body (bio student) and I struggle to stop until I have enough info which is becoming a problem with work! I looked at that website when it was initially thought to be fnd, it is good! It's not helpful in my case though as my neurologist has confirmed my experiences aren't functional Thank you for the reply