SCARY. Response to another thread but deserves a new thread

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Karamazov
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09 May 2020, 9:05 am

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skibum wrote:
You definitely play very well compared to me! I sometimes still write as well. I was a composition major at uni. I can imagine Bach is a bear to master at guitar!

Haha! Yes, Bach isn’t an intuitive fit to the guitar at all: I managed to get as far as a barely passable amateur take on the first section of BWV997/1 before I realised I was going way beyond my skill level and risking RSI by forcing the issue! I’m in the process of teaching myself composition from a variety of C19th manuals: tend to over complicate things re modal mixture and chromatic chords, but knowimg formal structures makes that sort of stuff easier to integrate without alienating Mrs K and her friends :D

skibum wrote:
I find it so interesting that we have these similarities. It is really helpful to me to know this. I am hoping this shared info can help my new doctor figure me out as well.
Oh good :D I wasn’t sure if I was contributing helpfully, or waffling in parallel! :lol: (It’s never occurred to me to mention anything to the doctor)
skibum wrote:
I now wear some inexpensive disposable mouth guards when I sleep. They are very small and comfortable. I got a pack of them years ago at Walmart for $12 US dollars. You are supposed to toss them every three days but I called the company and she said that they only say that to people but you can use them as long as they don't fall apart. I have been using the same one for years. I soak it in hydrogen peroxide every morning to clean it. It is extremely effective and small enough that you can drink and speak clearly while wearing it. You might try to see if something like that helps you. I also tried breathe right nose strips. They seem to help but they are expensive. Even the knock off brands are pricey
Hmmm... I might give those a try if I can see them in the pharmacy next time I’m passing :idea:
skibum wrote:
Do you yawn when you shouldn't? Sometimes I yawn not because I am exhausted but because I feel like I have to in order to get air. I just remembered that because I doing that now.
Yes! I find it often gets misinterpreted as a comment on my willingness to continue a task, which can lead to very perplexing situations where I’m being asked why I want to stop for no reason I can fathom in the moment.
skibum wrote:
I like what you said about you feel like there is something you are not doing and then you realize that what you are not doing is breathing. I feel that way too sometimes. It's like there is a brain disconnect or something.
Yeah, it happens with various things I find: I spend a lot of my time at work talking out loud about what I’m doing to keep it in my conscious process.
“What was I doing? What was I doing? Ah that’s what I’m doing!” is pretty much the refrain that ends every conversation with a customer I have. (Lucky they’re all elderly widows who are delighted for the help and have got used to me doing that!)

@MG I’ve forgotten my own name too: it’s a bit weird when you realise it’s happened isn’t it?



kraftiekortie
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09 May 2020, 9:52 am

I didn’t know you’re a classical singer, Skibum.

You seem like a person of many talents. If I had those talents, I would be able to occupy my time and take solace.

I wish I could find a way, somehow, to alleviate the sorrow you are going through now. So that you can really enjoy those talents.

In general, most people are decent—but they are mostly limited when confronted with things and people beyond their own experience. One has to experience misophonia in order to understand misophonia, for example.



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09 May 2020, 10:42 am

Quote:
@MG I’ve forgotten my own name too: it’s a bit weird when you realise it’s happened isn’t it?


Haha. It is embarissing! Especially when the other person is waiting for the reply! It seems so wierd when it happened because I could talk normally... Yet what was my name again? HAHAHA! Oh dear! Fortunately, though there was a delay, it came back to me before they thought I was mad. :P

The only real problem is when it happens and one delays in giving a response, the other person assumes you have made your name up and then you have to find ways to prove who you are. But it would be even more suspicious if I looked at something like my bank card and then say "Oh yes. Its ****" as they will assume you are using someone elses card.

Fortunately, forgetting my own name does not happen that often, but it is more regular that I can look in the mirror with surprize and think "Is that me?"


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Karamazov
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09 May 2020, 12:11 pm

^ Can’t recall ever failing to recognise my reflection: but I did find it creepy.
Still find looking at my reflection a bit weird: I don’t like sitting in the right-hand back seat of cars because you can always see yourself in the rear view, and I’m very careful to avoid looking into my own reflected eyes when shaving.



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09 May 2020, 8:33 pm

Skibum, glad I could help. For the last two years or so I’ve been noticing that I “forget” to breathe at times during the day too. It’s only when I take an unexpected gasp of air that I realize I’ve not been breathing. I think it’s made worse by a med I take.

I’ve gone through phases of really clenching my jaw and sucking on my tongue. I got an appliance made by the dentist. Expensive but it’s lasted for years. My one brother did grind his teeth so badly they got so worn down they were removed, but that was about fifty years ago!



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09 May 2020, 8:46 pm

I forget to breathe too! Every now and then I have to catch up because I'm out of rhythm having missed a few breaths.

It's hard to catch up because I can't breathe quickly or take deep breaths. My body has missed "normal" breaths, so any type of overcompensation doesn't suffice. It takes a while to feel like I'm back in pattern.

I also have severe Bruxism like you, Anne. I chew through my dental appliances within a few weeks, but insurance makes me wait a whole year for new ones.



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10 May 2020, 3:08 pm

To Kraftie,
Yes, Classical singing is one of my favorite things. It is very interesting how I enjoy things that actually make me breathe like sports and singing. I think I actually find that they physically feel really good to me because they create a breathing pattern. I also really enjoy them emotionally and in every other way possible.


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10 May 2020, 3:09 pm

Karamazov, you inspire me to keep studying my music. Thank you!


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10 May 2020, 3:44 pm

I am so glad and grateful that you are all sharing these things. I hope that others will be able to share as well. This is so incredibly helpful. I definitely want to discuss some of this with my doctors and hopefully they will be able to hear it. Tomorrow I am going to demand to be shown the note that the after hours doctor that I spoke to on the phone the other day sent to my then GP. The reason I need to see this note is to find out which one of them actually decided to refer me to behavioral therapy for this. This is so important to find out. If it's the doctor I actually spoke to then she needs to be disciplined. When we spoke, I explained to her exactly what is going on and she agreed with me. This is a medical issue, it is neurological. Yes, PTSD and stress definitely do make it worse but I strongly believe that the underlying condition is neurological. My neurologist and I talked about it last year when it first started to really impact my life. So it is important that I actually get some kind of help with physical breathing whenever I need it, whether is is more oxygen flow or whether I am actually hyperventilating and actually need need help regulating too much oxygen. I actually tried doing the paper bag thing and at first it helped but not after awhile. But something is physically happening and it has nothing to do with behavioral issues. But even if this is not a behavioral issue, I understand how psychological issues can affect it so even in that regard, studies need to be done so that psychological therapies can reflect the actual real issue so that the person can be helped from every angle and not just thrown into some cookie cutter nt based therapy mold that does nothing or that can hurt us.

So I need to know if after our conversation, this doctor told my doctor that I need psychiatric help or therapy from a psychologist, or if my doctor decided that on her own without ever talking to me about it. And my doctor, the one I just got rid of, told me when she first met me that she never reads patient's charts but only goes by what they say to her verbally. This means that she never bothered reading any notes in my chart from my neurologist which actually documents these symptoms as well as others that I have and that I am now seeing that many of us share, as actually being neurological and Autism related. Now of course that is just one opinion from one neurologist who happens to be chief of the department, and I understand that, but I believe that that because of these conversations with my neurologist and because of the anecdotal evidence from other Autistic people and their families, it is extremely important that research and studies need be done on these issues from a medical/neurological perspective.

I think one of the biggest massive and destructive issues that is plaguing our community today, and this is probably common not just for the Autistic community but for other disabled communities as well, is that because we are told that we don't understand our own condition, no one yet really listens to what we have to say about our own bodies. Much of the information that nts know about us is at best incomplete and a lot of it is just wrong. But many of us have the analytical and research abilities and intellectual intelligence and powers of logic and deduction to be able to come up with theories and ideas about our issues that make logical sense and that are worthy or being explored by the medical community from a medical and neurological standpoint. But because we are not taken seriously as people who can understand our own condition, when we bring some of this up to ignorant doctors who have no ability or interest to look into it further, we just get slapped with the "you obviously have psychiatric or behavioral issues" card because "there can't be any other possibility in existence to explain what you are experiencing."

So I believe that a lot of us are being treated for psychiatric or psychological issues that we don't actually have and so the treatment doesn't work and in some cases it is actually destructive. And this becomes a huge issue because the real problem does not get any help or attention and then we often get blamed for the psychological or psychiatric treatments not working, or we tend to blame ourselves. Now some Autistic and other disabled people really do have psychiatric or psychological issues and that is fine and they need to get that help and it should be available to them. I have no problem with that at all and I completely 100% support it. What I do have a huge problem with is some doctor deciding that the problem is psychiatric or psychological and prescribing a protocol for that without ever actually talking to the patient about it first or without consulting the chart and seeing if a neurologist or another medical doctor has advised on this condition or without even considering that there could be a possible other explanation. It makes me wonder how many of us are unnecessarily drugged up or being put through therapies that are actually hurting us because someone made a snap decision that what we are experiencing is psychiatric or psychological rather than medical. And the other huge issue is that when these things get severe enough that they have the potential to become life threatening like is happening to me now, when we show up at the ER during a crisis moment, we are not being helped or taken seriously and we are dismissed and sent home and if we protest, sometimes we are referred to a psyche ward or even worse, threatened with arrest like I once was.

So I think that it is important for us to really investigate this kind of thing ourselves and do our best to understand it so that if we find doctors who are willing to learn, they can start to investigate it medically. One of the leading causes of deaths among Autistics is heart failure. It would not surprise me one bit if these kinds of problems we are describing could possibly be linked to that in some way. Another leading cause of death for our community is Epilepsy which we know can start at any age. Could there be a correlation to that as well with some of the issues we are describing? Does anyone even know or understand the long term effects of some of these issues? The answer is no, no one does, at least to my knowledge they don't and if they do they are not making it well known information that all doctors are learning in their Autism training. We also know that Autistic people die in hospitals at a much higher rate than everyone else and that we then to have much shorter life spans. But this needs to change. I am tired of losing Autistic lives because doctors think they know everything about us when they don't. They need to study these kinds of things so that we can get the help that we need. So thank you all for sharing and please continue to.

PS: I don't want anyone to misunderstand me. So I will say this again as I believe in this wholeheartedly. If meds and therapies are working for you than I completely respect and support that 100%. What I am concerned about are people who are being convinced by doctors that they have issues that they don't actually have and who are being incorrectly treated and who are being damaged by that. If you truly have an issue that requires certain meds or therapies then by all means, use the meds and the therapies. But if you do not have those issues and you are incorrectly treated, that can be very dangerous. I want doctors to do much more research so that they can prescribe protocols from a position of knowledge and truth and not just pulling the psyche card every time they don't understand something.


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Last edited by skibum on 10 May 2020, 4:17 pm, edited 1 time in total.

skibum
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10 May 2020, 3:59 pm

I also sometimes have the cognitive trouble that MG and some of you are describing. For instance, it's not that I don't know a word or my name, but there are literally times when I know it in the back of my head but my brain can't make the connection to bring it to the forefront for me to first make sense of it and then secondly to express it in that moment. Does this sound familiar to you guys?


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Mountain Goat
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10 May 2020, 4:27 pm

You mentioned a point that doctors do need to address, and some are very good at understanding this but some are not. That no one knows ones body better then the individual who is sitting inside it.

I will say though that it is never easy. I remember in the past trying to describe these shutdowns to a doctor I used to go to and he did his best to try and work out what it is, and I did my best to describe them to him... But then, as my experiences did not seem to fit anything obvious that he could think about, he put them down to "Some sort of allergy" so I spent years trying to track this mystery allergy getting no where.

I remember that before I went to work on the railways, I had to have a doctors medical statement to declare if I was fit to work, and on the form I had to state if I had blackouts. I tried to explain as with full shutdowns I loose my vision so I wanted to know what to put on this form. He said "You don't have blackouts. You have dizziness". I remember thinking to myself "How was he able to say that?" I can feel a little dizzy on occasions when in a partial shutdown as my balance is one of the things to be effected, but that was not the whole picture. How was my doctor able to feel how I felt when I was experiencing this event, as his take on what I was experiencing was actually rather mild compared to the shutdown experience. If it was just dizziness... Not to say that dizziness is not a problem..
Anyway. I actually almost didn't get the job as it took 8 months for the doctors to send back the forms, as the railway had to threaten them with legal action if they didn't (I believe the company managing director told me this as we occasionally had a nice chat as he travelled on my train), and I had to start work 8 months after they had intended me to start. I was told they sent this letter after 6 months of not hearing, as they had been trying to contact my doctors several times and they were not allowed to employ me without the doctors forms. Due to what my doctors had said, I put on the forms weakness cause by allergies (Doctor had also mentioned weakness, and the "Limp" feeling I get as my body shuts down can be described as weakness).
Anyway. The problem is with me that I was never really able to fully describe my experiences. But there again, autistic meltdowns are well known with doctors, but not all doctors know about autistic shutdowns. I am not saying that they are not good at their jobs, but wow. Bodies are minds incredibly complex just for an average NT. Add those who have ND traits (I say this as I know I have a few but I have yet to be assessed), and who don't know how to describe them, and are also merging in other issues as it can be difficult to seperate two conditions, and it is not easy. Even the best doctors can end up puzzled unless they have specialized in the field of autism, and if they have, it is such a complex field in itself, they may specialize and lack general GP knowledge.

Anyway. All I am saying is that... Uhmm. What are my saying? Uhmm. Yes. We are more in touch with our own feelings then anyone else. But also, we ourselves can have confused feelings or may not be able to describe what we feel.
If it wasn't for Kraftie, I would not have realized that on and off through most of my life (Especiall mornings before going to school or work) I was experiencing anxiety. I did not know that what I felt had a name and though I very much had heard the term anxiety, and I had been asked if I was anxious by a doctor and I said "No" because, I never knew that this feeling was anxiety! (No, I am not daft. I am intelligent enough).
Soo... Uhmm. Not sure where I am now in my reply, so over to you lot! Haha!


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10 May 2020, 4:31 pm

skibum wrote:
I also sometimes have the cognitive trouble that MG and some of you are describing. For instance, it's not that I don't know a word or my name, but there are literally times when I know it in the back of my head but my brain can't make the connection to bring it to the forefront for me to first make sense of it and then secondly to express it in that moment. Does this sound familiar to you guys?

Yes. VERY MUCH makes sense. Is exactly as you describe. Like a "Tip of the tongue" moment.
Ooh. I get it the worst when I am recovering from a shutdown and I once had a nurse who assumed I had fainted, and tried to go through the "What is your name?" type questions right at the very moment when I needed some brain "Me" time to recover.


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10 May 2020, 4:46 pm

Mountain Goat wrote:
skibum wrote:
I also sometimes have the cognitive trouble that MG and some of you are describing. For instance, it's not that I don't know a word or my name, but there are literally times when I know it in the back of my head but my brain can't make the connection to bring it to the forefront for me to first make sense of it and then secondly to express it in that moment. Does this sound familiar to you guys?

Yes. VERY MUCH makes sense. Is exactly as you describe. Like a "Tip of the tongue" moment.
Ooh. I get it the worst when I am recovering from a shutdown and I once had a nurse who assumed I had fainted, and tried to go through the "What is your name?" type questions right at the very moment when I needed some brain "Me" time to recover.
Yes!! And I find that that disconnect can be physical or cognitive or sometimes both at the same time and sometimes it can take a long time to recover. And it gets much worse when I am under stress.


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Last edited by skibum on 10 May 2020, 5:18 pm, edited 1 time in total.

Mountain Goat
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10 May 2020, 5:11 pm

skibum wrote:
Mountain Goat wrote:
skibum wrote:
I also sometimes have the cognitive trouble that MG and some of you are describing. For instance, it's not that I don't know a word or my name, but there are literally times when I know it in the back of my head but my brain can't make the connection to bring it to the forefront for me to first make sense of it and then secondly to express it in that moment. Does this sound familiar to you guys?

Yes. VERY MUCH makes sense. Is exactly as you describe. Like a "Tip of the tongue" moment.
Ooh. I get it the worst when I am recovering from a shutdown and I once had a nurse who assumed I had fainted, and tried to go through the "What is your name?" type questions right at the very moment when I needed some brain "Me" time to recover.
Yes!! And I find that that disconnect can be psychical or cognitive or sometimes both at the same time and sometimes it can take a long time to recover. And it gets much worse when I am under stress.


Relitively recently (Actually has happened over the last few days e.g. yesterday, but has happened many times in the past) where I have a dissconnect between one of my legs and my mind, and for a moment my leg does not hold my weight and then it does if that makes sense. Actually I have had it for years, as I remember as a teenager running absolutely flat out through the fields nearby and for a brief second (Which at a flat out pace is a couple of paces) where I had a momentary dissconnect and my legs started giving way... And then I would have to quickly think how to run in a mentally manual over riding way which for a fair few paces would involve my legs going all over the place as my thinking wasn't in time to my legs speed.
Never was a good runner but I did take to cycling. Cycling.. Well. Even if this did happen the way ones legs are in fixed revolutions it is hardly even noticeable.


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10 May 2020, 5:22 pm

Captcha won't allow me to quote again so I have to respond without quotes. Why the ___ does the site do that? It makes me crazy.

Yes. MG, It makes perfect sense. There are times when I have to relearn to walk. It can take over an hour sometimes. And yeah, being clipped in definitely has its advantages!! :D


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10 May 2020, 5:57 pm

skibum wrote:
Captcha won't allow me to quote again so I have to respond without quotes. Why the ___ does the site do that? It makes me crazy.

Yes. MG, It makes perfect sense. There are times when I have to relearn to walk. It can take over an hour sometimes. And yeah, being clipped in definitely has its advantages!! :D


I use toe clips when I can. I dont get on with SPD's or other clipless pedals like Look etc. I cycle at a slight angle so SPD's make my knees ache. I also forget to pull sideways in SPD's despite trying to perservere with them for a couple of years. So eventually I called it a day and refitted toe clips and straps to my bicycles. I get on with toe clips better. Finding the right size toe clips is a different matter.


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