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So Misunderstood
Tufted Titmouse
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21 Apr 2020, 9:00 pm

I really don't know what to do, think or feel anymore.

I am on the Spectrum and I also have OCD.

Up until about six months ago, I had severe agoraphobia - I was terrified of leaving my house and I was washing my hands like 20 times a day.

Mental Health Services intervened and for the past 3 years, I have been undergoing CBT, DBT, desensitizing, reprocessing, gradual exposure..all that stuff and I was told that social distancing is a bad thing and I should stop talking to people online and get out into the "real world"...it took those 3 years for me to finally feel comfortable and safe, then about 6 months ago, I took my first baby steps outside, encouraged by everyone.

Gradually, I managed to attend yoga class, sit in a crowded restaurant, go to the beach and begin to live some semblance of a "normal life"...all of the desensitizing, deprogramming, behavioral therapy and neural net rewiring was obviously working.

I also managed to get washing my hands down to about 5-6 times a day... before meals and after I used the bathroom...I was doing very well and everyone was proud of my achievements and I was also proud of them too..

After about six months of me finally being able to go outside and join in social activities, this Covid-19 thing happened and we were all told to stay inside our homes and not to go outside or go to classes or meet people because the world is a "scary place" and we shouldn't socialise or attend classes and just chat to people online and we all should be washing our hands 15-20 times a day. I was totally devastated...my spirit was just broken...crushed!

When I mentioned this to Mental Health, all I got told was "you were right all along and we shouldn't have put you through all of that for the past 3 years...we are very sorry". What should I make of that?

Problem is of course, that the damage had already been done. I have been reprogrammed, brainwashed and rewired now to break the law by going out and sitting on a park bench without even caring that I am doing so..I don't want to go back to living my "old life" but now I am forced to do so against my will...a will that took 3 years of hypnosis and mental manipulation to construct in the first place.

So now I find myself between a rock and a hard place and I feel like I am suffocating and slowly dying inside...my anxiety and depression has increased drastically to the point where I can barely function anymore and all the doctors can say is "it is normal and natural to feel this way....the world is going through unprecedented times...you are not alone" Then gives me a prescription for a "blue pill" when I have already taken the red one.

So what do I do now? Do you guys have any advice or helpful tips for me? Thanks in advance.



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Snowy Owl
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21 Apr 2020, 9:34 pm

So Misunderstood wrote:

When I mentioned this to Mental Health, all I got told was "you were right all along and we shouldn't have put you through all of that for the past 3 years...we are very sorry".




that is so unbelievable



blooiejagwa
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21 Apr 2020, 9:46 pm

My brother (the nice one) one year younger than me waz saying the same to me as he has severe OCD all his life - the handwashing thing. (Like how u say you did it and how ppl used to tell him not to and he had to train himself etc)

I have agoraphobia too used to be really severe like so much therapy needed plus everything as u mentioned. So i totally agree with what u say the contradiction of it..

So i can tell u that you can still take minor steps outside and call people during to make the transition less extreme.. Bcuz u are still exposed to people (even if it is just thru the phone) while being in a different setting.

I am like u so using bandanas and masks ks how i make myself and btw most first world countries. The leaders said 1-2hours outside for exercise is allowed.

What the mental health pro said was irresponsible as it broadly stated something that didn't take into account that this is something RECENT not all along etc so it just adds to the confusion.

Writing thoughts our is a good thing too. This website is my lifeline. My therapist helped me figure oour a lot of agoraphobia has to do with lots of confusing tangled thoughts from all directions and if u make urself check in with ur feelings and try to figure out why (several times a day) the inner tumult and confusion lessens.

The table of emotions herw helps me
https://www.google.com/url?sa=t&source= ... wf&ampcf=1


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blooiejagwa
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21 Apr 2020, 9:49 pm

Or driving around (if u have that option(.. I drive a lot these days to maintain the pre covid19 anti-agoraphobia routine if getting coffee from the drive through.. That helps me have smthing to hold onto.
Like me.. Just sitting in the car in parking lot or my driveway for hours helps me bcuz i have this yucky feeling as I am going the opposite way of what I used to think to my mind to convince it to go out...

Ive actually been sitting in my car right now for hours.


The emergency virus thread here with jimmym is really helpful actually as it gives one a bit of distraction while still being relevant to the source of confusion. Plus ppl make jokesn stuff.. It eases it.. There are several threads like that


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blooiejagwa
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21 Apr 2020, 9:53 pm

Not to say to do that n it will go away.. Just things im trying.. Its very reassuring to me how you stated this as I felt it but had not connected everything like this..

So thanks.

But definitely more frozen in one spot than usual these days from the inner confusion.. More meltdowns .


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So Misunderstood
Tufted Titmouse
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21 Apr 2020, 10:33 pm

Thank you so much blooiejagwa and I will try all that out. It is a good thing I can still go outside and exercise once a day, but I also like just staying in one spot outside and acclimatizing myself to nature without always having to be "on the move" so I miss it.

I think the biggest thing that is getting to me right now as I type this is regret. Although my agoraphobia was due to my Autism - scared to have a meltdown in public and yeah, receiving so many mixed messages via sensory input, I regret not enjoying those freedoms while I was still able to have them...before what I didn't have was taken away so that I couldn't have...and that is what hurts the most.

I am trying to stay positive by watching Jordan Peterson, Chris Eisenstein and others trying to turn negatives into positives, but it seems that my awareness isn't quite "there" yet, so it does nothing more than frustrate the hell out of me.

Again, thank you so much and I will go and find those virus threads...I could do with a laugh right now...all one can do, really.



blooiejagwa
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21 Apr 2020, 10:50 pm

I ought to have linked the threads I referred to


viewtopic.php?t=384318


viewtopic.php?t=188519

viewtopic.php?t=385835


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harry12345
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22 Apr 2020, 5:00 am

You are not stuck at home.... you are safe at home.

Once this is all over you'll be able to take all the things you've learnt and picked up in the last three years and hopefully use them to fairly quickly return to your new normal.



So Misunderstood
Tufted Titmouse
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22 Apr 2020, 5:17 am

harry12345 wrote:
You are not stuck at home.... you are safe at home.

Once this is all over you'll be able to take all the things you've learnt and picked up in the last three years and hopefully use them to fairly quickly return to your new normal.
I can only wish that I shared the same optimism.



SocOfAutism
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22 Apr 2020, 7:52 am

I have a degenerative neurological disease. It starts out mostly with physical awkwardness (tripping, can’t catch things etc) but eventually leads to losing the ability to walk, stand, and speak. And then your organs shut down.

I first found out that I have it maybe 15 years ago. For the first few years I was always freaked out, trying not to fall, making sure I enunciated when I talked. So like you, scared of things that are arguably a real problem.

But that’s no way to live. I can take walks and even still jog on good days. I do fall sometimes, but I don’t think about it so much and I know what to do if I do lose balance.

I think it’s much the same for you. These coping mechanisms you learned are still helping you. You now know the things to do to stop yourself from getting crazy about germs and safety, even during this hard time where you are constantly challenged.

What the mental health people said about you being “right” was incredibly insensitive.



So Misunderstood
Tufted Titmouse
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22 Apr 2020, 8:17 am

SocOfAutism wrote:
I have a degenerative neurological disease. It starts out mostly with physical awkwardness (tripping, can’t catch things etc) but eventually leads to losing the ability to walk, stand, and speak. And then your organs shut down.

I first found out that I have it maybe 15 years ago. For the first few years I was always freaked out, trying not to fall, making sure I enunciated when I talked. So like you, scared of things that are arguably a real problem.

But that’s no way to live. I can take walks and even still jog on good days. I do fall sometimes, but I don’t think about it so much and I know what to do if I do lose balance.

I think it’s much the same for you. These coping mechanisms you learned are still helping you. You now know the things to do to stop yourself from getting crazy about germs and safety, even during this hard time where you are constantly challenged.

What the mental health people said about you being “right” was incredibly insensitive.
I thank you so very much...and now I realise I am "home" on this forum.

Five years ago, I was also diagnosed with FND (Functional Neurological Disorder) also called Conversion Disorder or Somatoform Disorder. While the condition isn't degenerative like MS or ALS, there are days when my legs just refuse to work, I can't walk, stand, speak...it becomes difficult to swallow and breathe and then I start having PNES seizures...For five years this hasn't gotten any better or any worse but it does tend to occur more often during times of stress..now I am having about 2 or 3 episodes a week when before, I would have about 2 -3 a month.

Your Neurological Disorder being degenerative has really put the whole thing into perspective for me and I am sorry you have to go through all that...I should not be bemoaning my problems in light of it.

Having Autism as well as FND & OCD is no picnic...may see if I can get myself back on Pregabalin (Gabapentin) if only for the short term and cut out glutamates from my diet for a while...also probably Ashwaghanda and Rhodiola for my overworked adrenals...

Thanks for the advice and the help.



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22 Apr 2020, 10:00 am

Not sure I can help, but I will give it a go.

So Misunderstood wrote:
I had severe agoraphobia - I was terrified of leaving my house and [OCD] I was washing my hands like 20 times a day.

Mental Health Services intervened and for the past 3 years, I have been undergoing CBT, DBT, desensitizing, reprocessing, gradual exposure..all that stuff and I was told that social distancing is a bad thing and I should stop talking to people online and get out into the "real world"...it took those 3 years for me to finally feel comfortable and safe, then about 6 months ago, I took my first baby steps outside, encouraged by everyone.

Gradually, I managed to attend yoga class, sit in a crowded restaurant, go to the beach and begin to live some semblance of a "normal life"...all of the desensitizing, deprogramming, behavioral therapy and neural net rewiring was obviously working.

I also managed to get washing my hands down to about 5-6 times a day... before meals and after I used the bathroom...I was doing very well and everyone was proud of my achievements and I was also proud of them too.


Agoraphobia and OCD can be very debilitating conditions. I am glad you were able to overcome them and irrespective of what is happening on the outside world keep the progress that you have achieved.

So how do you do that? You are in charge of ensuring your own safety and well-being. Not the government but YOU. As such you need to develop and integrate the ability to perform risk assessment.

At the moment COVID-19 is not a pandemic in Australia. It is generally observed in passengers returning from cruise ships, nursing homes, foreign visitors from regions hit by the pandemic, and hospitals. Therefore if you avoid these, you will probably be safe from the coronavirus.

Second, almost all people who have become infected with the coronavirus were infected indoors. So if you are out of doors you are relatively safe. The sunshine and fresh air and wind will dissipate and destroy the virus. So if you are laying on a beach soaking up the sun, you are relatively safe from becoming infected. Even sitting in an outdoor cafe soaking in the sun while you drink a cup of coffee with a friend, you have minimal exposure.

But on the flip side, the areas of danger are congested cities, subway trains, buses, cruise ships, aircraft. So these should be avoided when the pandemic is present or at least take some precautions such as wearing N95 face mask and using hand sanitizing gel periodically.

Aspies experience significantly more stress than the average NT. So much so that it should almost be our middle name. Stress unless it is vented can transform into distress. Some forms of distress produce mental problems such as a agoraphobia and OCD. The stress is actually chemicals that are stored in your nervous system and your muscles. If you learn how to vent this stress, the mental issues will melt away. The coronavirus can produce an added layer of stress.

So you said, "So now I find myself between a rock and a hard place and I feel like I am suffocating and slowly dying inside...my anxiety and depression has increased drastically to the point where I can barely function anymore and all the doctors can say is "it is normal and natural to feel this way....the world is going through unprecedented times...you are not alone" Then gives me a prescription for a "blue pill" when I have already taken the red one." and "Five years ago, I was also diagnosed with FND (Functional Neurological Disorder) also called Conversion Disorder or Somatoform Disorder. While the condition isn't degenerative like MS or ALS, there are days when my legs just refuse to work, I can't walk, stand, speak...it becomes difficult to swallow and breathe and then I start having PNES seizures...For five years this hasn't gotten any better or any worse but it does tend to occur more often during times of stress..now I am having about 2 or 3 episodes a week when before, I would have about 2 -3 a month."

So let me describe one method to vent stress, the stress stored in your neck.

One needs to vent the stored stress energy in their neck muscles, vocal cords, and jaw. The best way is to scream at the top of your lungs several times. But this must be done in a socially acceptable manner. Never scream at a person. I live in the rural countryside and my dog is a free-range dog. When it is mealtime and my dog is up and about; I call my dog very loudly.

R-o-c-k-y. Come here puppy. R-o-c-k-y.
R-o-c-k-y. Where are you puppy? R-o-c-k-y.
R-o-c-k-y. Come here puppy.

I yell so loud that I can hear my voice being echoed back to me from nearby hills and mountains. My voice carries about a mile. The call is so strong that it borders on a roar. It is a very good feeling. It gives me a sense of great strength, like I could split a mountain in two just with my voice alone. I feel strong to my core. It is a great stress reliever or normalizer. And it is socially acceptable in the countryside.

One might try howling like a wolf at the moon. There is an individual in New York City that howls at the subway cars as they pass by deep down in the subway stations. But there are other ways to scream in a socially acceptable manner. A singer can do this if it is a very powerful song. A barker in the county fair can do this. A fan at a rock concert can sing along at the top of their lungs. Some commuters sing along to the tune on the radio at the top of their lungs while they are driving down the road. A spectator at a sports event can do this in cheering on their team. Even a Girl Scout can practice barking in front of the local grocery store when she sells Girl Scout cookies. Or find yourself a soundproof room.


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blooiejagwa
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22 Apr 2020, 10:13 am

A+ insight as always ^


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shortfatbalduglyman
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22 Apr 2020, 1:59 pm

Deep breathing



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22 Apr 2020, 3:07 pm

I greatly empathize with OP, and I have neither OCD nor agoraphobia. Over the past year and a half or so I have slowly tried broadening my social horizons, by doing such things as letting my few friends introduce me to others they know and trying to get to know them and joining a local ASD meetup group. I was devastated when my state’s governor announced a stay-at-home order the day before my birthday. I am more depressed now than I have been for a very long time. I agree with OP that everything I’ve learned over the years to help navigate the social world feels like a waste now. I yearn for the day when the order is lifted and I can be with my friends in person again...


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blooiejagwa
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24 Apr 2020, 5:56 am

^ would the friends and other ppl in that ASD group be open to Skype or WhatsApp video calls to check in and make sure everyone's ok and talk face to face via technology?


It might alleviate a bit of the depression.


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