Confused about accepting society or not.

[Skids]

Basically i've reached a point where i have gotten into a routine.

I have the time to get involved in lots of different things but i don't. I have some challenges holding me back. One is that i do have M.E / CFS and generally feel ill every day although i'm mobile and can do lots of things still. However, constantly being around people and being 'forced' to interact is not only extremely stressful due to my HFA but when you feel ill on top of that then it's not a pleasant experience.

In addition i have pretty bad anxiety and panic disorder and speaking to people a lot often makes these worse and unbearable in some cases depending on the scenario.

Finally there is a maladaptive schema which i developed during adolescence and which seems to have been made worse by my autism. This schema is basically a deep distrust of other people, a deep sorrow within when i see around me on a daily basis just what morons people can be and how many repulsive behavioural traits many of them have and the schema also has convinced me that i don't particularly have any interest in others and their lives and particularly for small talk. Often i fear others too, especially younger people who wear baseball caps and tracksuits. lol

Taking into account the above then staying at home and having minimal contact with others is, on the face of it, paradise.

But i'm in a dichotomy. I feel that i wasting my life. I don't necessarily require other people to be happy but in order to go out into the world and at least feel like i'm somehow part of the one consciousness that Eckhart Tolle always bangs on about and feel a part of society then that involves other people.

Don't get me wrong. I like a lot of people also. When i meet nice people and i can genuinely tell they are nice people then it makes me happy and i can often overlook my ingrained negative bias towards human beings but the fact is that for every good person you come across that uplifts you, i may come across one, two or maybe more who are not so good.

It's this time consuming filtering out of people.

I simply can't be bothered with people anymore as it's too stressful and disappointing as an experience. I'm not in any way claiming that i am a superior person so please don't think that. I'm sure that many people would think i'm the height of tedium also which i accept but i'm more concerned about where i go from here. It's like i'm at a junction and the road sign to the left says 'PEOPLELESS ISOLATION-VILLE' and the road sign to the right says 'COMPLETE MADHOUSE'. Perhaps with a 'NO EXIT' sign to accompany it. Or maybe that should be a 'NO ENTRY' sign even and then it would at least save some of us from joining the absolute circus that seems to be modern society.

It's a terrible confusion as even i know that each of us needs people and needs contact and stimulation but it's the sheer overwhelming apathy and even scorn in some respects i have of other people and society in general that is holding me back.

If it was as easy as meeting someone for the first time and they immediately start annoying you or being obnoxious and you just tell them you think they are annoying and not to bother me again then that would be a start. It's honest and saves all the false pretence but for some reason you cannot do that.

So therefore i might have to go through lots of people like this (as i have done in life and other jobs) putting up with their archaic, narrow minded views, vacuous interests, backstabbing, lying, cheating, selfishness before i find one person who is really interesting, polite, non judgmental (as i am being with this whole post ironically) and friendly with no hidden agenda or nastiness.

I can't be bothered. I'm tired and i'm deeply disillusioned at the moment and possibly depressed as everything is viewed through a negative lens.

For example just say i won a weekend break to Disneyland Paris with the partner and kid. I'd get bad anxiety because i was going on a trip. There would be queues (i hate queues passionately) on the motorway driving down for the eurostar train check in where there would be more queues there. Then i'd be sat on the train and someone will be listening to stuff on headphones that i can hear and i'll be tuned in and huff and puff to myself calling the person an inconsiderate a-hole all the way, then some kid will start kicking the back of my seat and his parents (as usual) aren't even aware that it's happening let alone telling them to stop it.

Then (as usual lol) i'll need the toliet due to stress and i get into the cubicle and some dirty bandit has urinated all over the seat and not wiped it causing me to castigate inconsiderate people even more. Then the train will arrive in Paris and (as usual) people barge and shove to be first off. Quite why. i don't know as we are all going to get off at some point.

At this point my anxiety is through the roof and i'm getting into angry, possible meltdown mode.

Then it's queues again in the terminal and then we get to our hotel. We settle in for the night and there's seemingly a herd of elephants in the room above or more like ignorant people who don't think about others below (as i always do). Then some dolt next door has his TV on at what seems like full volume without apparently considering others in the hotel (as i always do).

Then it's 1am and i start dropping off after a very stressful day and some drunken louts are heard slamming doors in the corridor and shouting on the way to their room from a night out. Thanks for that.

You get ready in the morning feeling drained and then get to the Disneyland park where it takes you about an hour to get in as there are, yes you guessed it. Queues. I get anxious in queues and i'm waiting in this hypothetical queue and kids around me are running amok and screaming and shouting and i can feel the frustration and stress building.

Finally we get in and make our way to the first ride only to be met with a QUEUE! Then another queue for another ride then another queue. So i say sod it, let's have something to eat so we go into this restaurant. I find a table which is quiet near the corner as i don't like being sat near others.

Then we look at the menu and suddenly realize we need to take out a small personal loan just to pay for the food because something that should be about £25 is now £50 and beyond. Then the food takes ages to come. Then a large annoying, loud family with six kids take residence on the table next to us. I'm getting stressed.

Then i have to go up and ask where our food is. Then eventually it arrives and their are bits missing and it tastes like McDonalds crap (which i should have expected). Then i get frustrated because ordinarily i'd have marched up to the counter, exclaimed that i wasn't eating that crap and wanted a full refund but the kid is hungry and so we just accept it and eat and i go away angry that someone thinks it's not only acceptable to serve sub standard rubbish cooked without any care at all but it's also ok to rip people off by charging over the odds for it.

Then we queue for more rides. We see a photo of us on the ride we had just been on whilst passing the exit and it was hilarious. I want one and so does my kid but the lady in the photobooth wants £10 for it so i tell her it's a disgrace and leave hurriedly and angrily. My kid gets annoyed at me as she wanted it to take back with her and she doesn't understand that i am not prepared to get ripped off.

She starts getting upset and my partner overrules me calling me mean and we are only here once so we should buy it. I have a principle and that is now being put to the sword. I buy the photo and further contribute to an already rich companies profits when i could have given that £10 to a dog rescue charity instead.

I'm not enjoying myself at this point i'm sure you are aware. lol I've won a free holiday to Disneyland Paris and see it as a negative. How am i allowing this to happen?!

It's a really long post and if i continued with my fictional holiday to Disneyworld then i'm sure you can appreciate that things get worse. But the reality is that this kind of stuff happens to me all the time and i've got enough on trying to calm myself down and deal with things like this let alone be able to enjoy myself and enjoy time with the kid.

The reason i don't enjoy myself is because of people and society. How society is so dog eat dog, so greedy, so uncaring and so selfish by and large.

Now whether it's because of other people and their inability to see how their behaviour impacts on others or a total lack of awareness of others or even other people and their desire for money over delivering an acceptable service / product at an acceptable price i don't know.

It could be argued, like the therapists always do that maybe i MYSELF am the reason i am not enjoying myself as if i simply change my mindset to accept that all these people are morons and all these incidents are 'just how life is' then i'd be able to enjoy myself.

That to me is accepting that we may as well all just give up, have no standards and all do what we like.

I am never allowed to be truly relaxed and enjoy anywhere i go as other people and their selfish, ignorant behaviour will always cause distress to me.

So should i pursue a solitary existence and write books and be happy with the small circle of friends i have? Have i just answered my own question?

Apologies for the sheer length of the post and if you read it all then genuinely thank you so much and make yourself a cup of coffee and put your feet up now as i reckon you are exhausted.

Anyone else in this constant battle with other people and their own mindsets?

 

[Tom]

Never did the big park thing, ever.

But I did take the kids to the little temporary ones that pop up in little towns. Much smaller more managable experience. Just go on the rides to hold onto your kids. They don't seem the safest sometimes.

 

[OkRad]

There is no need to engage in stressful activities. If being alone and writing makes you happy, that would be awesome! There is no need to do anything more than that if you can afford it.

You have had a long time of feeling the way you do. It may take a long time in your own safe thoughts to heal. It sounds like you've really been hammered trying to do things that are not natural to you. That would cause anyone to be distressed.

Do what it takes to bring you peace and heal. Maybe in a year or two or even a decade, it might feel safe to test the waters.......

 

[Skids]

Never did the big park thing, ever.

But I did take the kids to the little temporary ones that pop up in little towns. Much smaller more managable experience. Just go on the rides to hold onto your kids. They don't seem the safest sometimes.

I don't like big theme parks either Tom, primarily for the reasons in my post

I doubt i'd even go to Disneyland Paris even if i did win a competition. Far too stressful, too many people, too much sensory stuff going on and even if i did i wouldn't go on any rides as i'm a big wimp as far as their concerned. Rollercoasters no thanks!

I have been to Alton Towers when i was younger a few times and coped with it better probably due to being younger and having more energy and less anxiety but still can't say it's my ideal day out. Not by a long way.

The smaller rides are ok though sometimes.

 

[Skids]

Thanks OK Rad for your reply. The bit where you mentioned that i'd had some hammer in life doing what isn't natural for me is so true. I think perhaps that's why i am having this mid life crisis thingy now. I am partly exhausted from pretending to be 'normal' and also continuing doing things out of duty that are at odds with my neurology if you like and also i've gotten to a point (or an age) where i can't be bothered with even forcing myself to do things i don't want to do anymore. Unfortunately though that means more isolation, lack of enjoyment and to some extent a lack of purpose.

Your advice is sound. I will eventually reach that moment where i stop worrying and start living. However long that takes.

 

[Autistamatic]

Coffee is hot and feet are up...

I can relate to, and empathise with much of your post and your hypothetical trip. If it weren't for the necessity of earning a wage I would likely be more withdrawn myself. I choose not to socialise in my spare time because it makes life much more bearable, and I never have time to do all the things I want to do anyway which socialising would delay even further. Add in ill-health too (I have arthritis, my wife M.E.) and it makes for a much easier life just staying out of it.
As you say - I think you might have answered your own question.

 

[tree]

"...i do have M.E / CFS and generally feel ill every day although i'm mobile and can do lots of things still."

I didn't know what those letters stood for.

• Myalgic Encephalopathy or “ME” (a term which The ME Association feels is more appropriate than the original, Myalgic Encephalomyelitis)
• Chronic Fatigue Syndrome or “CFS”

What is ME/CFS?

 

[Autistamatic]

I can't answer for @Skids but I know for my wife it means a completely unpredictable life. She's in constant pain, tired on her good days, bed bound and exhausted on her worst. Sleep is disrupted and leading a normal life is impossible.
Opinion is still divided over the cause but it is most certainly not "all in the mind" as some doctors and most medical insurers like to imply. You cannot motivate or exercise yourself to a cure - in fact "graded exercise" is a therapy which has recently been thoroughly discredited as making the illness worse.
Quite a few sufferers don't like to use the "CFS" term any more because they feel it trivialises it - it's far more than fatigue.

 

[Mattymatt]

I would say do what makes you feel most comfortable. I would say that I reject a lot of what society tells me I should and should not do. Society's mores are formed on kind of a majority opinion. As someone on the spectrum, I am therefore an outlier and I am perfectly okay with that. Nothing I do will change the fact that I am an anti-capitalist and anti-consumptionist.

 

[Pats]

I'm not a coffee drinker, but thanks. lol
I did have to laugh while reading some of your post because I do go through all the scenarios before doing anything and that alone is exhausting. I've cancelled so many trips because of that very thing.
I also feel a lot of guilt that I feel like I'm wasting 'what's left' of my life. When I start feeling like that it's because I'm comparing myself to the rest of the world. Then I usually ask myself what all these people I'm comparing myself with are probably doing right now. Probably about the same thing I'm doing. I no longer work so all my days are free. Am I supposed to go out and look for someone I might can help? I actually have tried that and it's useless because it's hard to recognize most the time and I don't live in an area where there are people standing on the street corners with signs. So I remind myself I have to wait for opportunity. Saturday I stopped at the grocery store on my way to visit my daughter and her new baby and an elderly man was walking in, too, so I shared my umbrella. He loved it and I think it made both our days. So maybe three days at home just playing games, working jigsaw puzzles on the computer and piddling around the house is okay as I recuperate from my last outing so I can go out again and perhaps run across an opportunity to do something nice for someone.
I also try to remind myself that I was a nurse and helped people and now it's time for me to rest and be helped (except I could never ask for help. lol)
I guess what I'm trying to say is don't force yourself into things that you are so uncomfortable with just to feel useful. Often times we've done something that means a lot to someone else and we never even know it. No one's life is wasted - you have done things and you will do things in the future. They may be small and you may never know it was worthwhile, but it is or you wouldn't be here. I believe we are all here for a reason. We may never receive a Nobel prize, but it doesn't make us any less valuable.
Writing books is a novel idea.

 

[Pats]

Never did the big park thing, ever.

But I did take the kids to the little temporary ones that pop up in little towns. Much smaller more managable experience. Just go on the rides to hold onto your kids. They don't seem the safest sometimes.

I hated those. Those were usually the ones I'd get stepped on. I hate anywhere with a lot of noise, flashing lights and crowds but the larger ones are a little more manageable because they have more space. Even standing in line I would tend to stand so far back from the next person and hold my foot out far enough for the people behind me to not get too close, either. Carnivals and fairs, people seem more pushy and not noticing that their are others around them for some reason. Ugh!!!

 

[Pats]

Coffee is hot and feet are up...

I can relate to, and empathise with much of your post and your hypothetical trip. If it weren't for the necessity of earning a wage I would likely be more withdrawn myself. I choose not to socialise in my spare time because it makes life much more bearable, and I never have time to do all the things I want to do anyway which socialising would delay even further. Add in ill-health too (I have arthritis, my wife M.E.) and it makes for a much easier life just staying out of it.
As you say - I think you might have answered your own question.

I'm happiest when I'm hermitting. And, yes, it is nice when you get older and can use all these aches and pains to justify it a little better.

 

[Skids]

"...i do have M.E / CFS and generally feel ill every day although i'm mobile and can do lots of things still."

I didn't know what those letters stood for.

• Myalgic Encephalopathy or “ME” (a term which The ME Association feels is more appropriate than the original, Myalgic Encephalomyelitis)
• Chronic Fatigue Syndrome or “CFS”

What is ME/CFS?

Apologies tree. I should have included what these letters stood for. I just assumed people would know and got it wrong. Sorry.

Autistamatic has explained them briefly but accurately in his earlier post. I suppose you could say that M.E / CFS is also on a spectrum like autism. On the one hand you have people who often cannot even get themselves out of bed for weeks, months on end and then at the other end there are people who are still fairly mobile and active but always feeling ill, getting viruses and suffering from unrelenting exhaustion and pain that limits their daily life.

As Autistamatic says, there is a significant majority of people in the medical profession who believe these conditions are psychosomatic.

In my case, i believe that years of living with undiagnosed HFA and the pressure of trying to lead a 'normal' life whilst dealing with the ongoing chronic stress that my mind and body wasn't designed to withstand has perhaps 'tripped a switch' in my body as i am now experiencing a lot of autoimmune type symptoms along with the M.E / CFS.

I believe the conditions are the result of the body saying, "i've had enough" and something then has to give.

I can testify that it's a horrible illness with no cure, no treatments and seemingly no end. Nobody has any answers, nobody seems to recognise it so you are left out in the cold with regards getting disability benefits and i also believe that living with such uncertainty on a daily basis eventually causes anxiety, panic attacks, depression etc because before i had it i didn't have any of those things really.

The doctors have got it the wrong way around. They believe my anxiety and panic attacks caused the M.E / CFS when in actual fact it is living with the M.E / CFS which gradually erodes your confidence and self esteem enough to leave you vulnerable to anxiety disorders developing.

I am led to believe that M.E / CFS is quite a common comorbid condition amongst people with ASD. Especially people with HFA.

 

[Skids]

Thanks for your replies Pats. It particularly struck a chord with me the part where you mentioned when you feel like you are wasting your life and it's because you are comparing yourself with the rest of the world. I am exactly like this.

I worked in the UK for nearly 20 years with the RSPCA (Royal Society for the Prevention of Cruelty to Animals) and the Dogs Trust caring for, retraining and rehabilitating all sorts of animals who were unwanted, abandoned or just in need of help. Animal rescue was always something i wanted to do as i figured that all the other people you worked with or worked for the organization would be just like me and put animals before themselves and self gain but i was wrong.

This is what hit me hardest and made me think that absolutely nowhere where there are human beings is immune from selfishness and self preservation.

At the time though i felt like i had a worthwhile job although i wasn't earning much but it wasn't the money i was in it for. I was in it to help animals and spend most of my days avoiding people and for a long time it worked despite a lot of stress. There was a lot more people skills required than i realized and whilst i managed at the time, i paid for a heavy price for it with the development of my M.E / CFS and anxiety etc.

I often look back to those days and even though it was stressful, i was in a rewarding job, i had a uniform, i was part of a team (who then didn't know i was ASD) and i felt part of society. Now i am unable to work and spend a lot of time at home alone and compare myself to others who are still working and being part of society and find myself questioning the validity and purpose of my life and even if i actually WANT to be a part of this society.

My life now is making sure my kid (NT) has the best i can provide and although i can't provide much in terms of a material sense. I'll certainly ensure she grows up understanding others, understanding conditions like autism and M.E / CFS and respecting others for who they are on the inside.

 

[Autistamatic]

Skids I feel for you my friend, I really do. I work in a healthcare profession which was great for the many years I worked for small concerns but all went +1+$ up when I moved to a corporate concern. Nobody seemed to care as much as I do for the people we served.
My wife had a similar tale. She's a degree qualified Social Worker because she wanted to play a part in making people's lives better, but after years of ingratitude, increasing workloads and degenerating conditions she fell apart and has suffered from M.E. & Fibromyalgia since. We got her DLA/PIP sorted eventually but only after long appeals and tribunal processes.

 

[pamelaperejil]

Anyone else in this constant battle with other people and their own mindsets?

Yes.

 

[SusanLR]

In my case, i believe that years of living with undiagnosed HFA and the pressure of trying to lead a 'normal' life whilst dealing with the ongoing chronic stress that my mind and body wasn't designed to withstand has perhaps 'tripped a switch' in my body as i am now experiencing a lot of autoimmune type symptoms along with the M.E / CFS.

I believe the conditions are the result of the body saying, "i've had enough" and something then has to give

I'm going through the same health stuff.
After I lost the way of life I was used to and my parents, I have had to make myself do things like go to big theme parks, try to keep those I now live around thinking I am living like a normal adult, dealing with
the losses at the same time.
And my health started going downhill after one year of living this "new" life.
Totally alone and lost is how I describe it and keeping in all inside to fit in.
Doctors have had many ideas on what is wrong, but, none of them can give any proof through their tests.
I know in my heart it is my body saying "I've had enough."
Living under constant stress, supressing emotions, depression, long distance driving which creates anxiety,
trying to keep panic attacks inside no matter how I feel.
All those stress hormones and negative energy gradually destroys the body.

I had a quiet laid back lifestyle by the bay and woods. Living with nature around everyday.
Life was just life and now I wake up and wonder what is there to get out of bed for?
It's just eat, work, sleep. Work as part of my rent to live with the guy who offered the arrangement,
listen to his profanity and drive him to what he wants to do.
Those big theme parks are part of it.
I've taken him to DisneyWorld three times and I sure know what you mean about the queues.
Hours standing in line just to get into a 15min ride or show!
I mean, it was bitter sweet. Sweet that I experienced DisneyWorld as I never would have
on my own, but, the anxiety is too much. To make it through once would be enough.

I have to take him to Busch Gardens everyweek in the spring for shows and concerts.
Again, the anxiety of going and now I can't walk it like I could 5 yrs. ago.
And he has to eat out in a restaurant everyday for dinner.
I never enjoyed restaurants that much. So no such thing as a relaxing dinner now.
I think some time to hermit away would do wonders for healing, but, there's so much at stake.

 

[Skids]

Skids I feel for you my friend, I really do. I work in a healthcare profession which was great for the many years I worked for small concerns but all went +1+$ up when I moved to a corporate concern. Nobody seemed to care as much as I do for the people we served.
My wife had a similar tale. She's a degree qualified Social Worker because she wanted to play a part in making people's lives better, but after years of ingratitude, increasing workloads and degenerating conditions she fell apart and has suffered from M.E. & Fibromyalgia since. We got her DLA/PIP sorted eventually but only after long appeals and tribunal processes.

Thanks Autistamatic.

Hope your wife can get back on the road to recovery.

As regards the PIP situation. It's an absolute lottery and an absolute nightmare. I was awarded higher rate PIP for mobility about 5 years ago. The assessor was such a nice lady and i actually believe each person's success depends on the accurate recordings and views of the assessor which i've since discovered that most don't know the meaning of the word accurate.

Anyway after about 2 years they reviewed my award and i had another assessment and despite worsening symptoms and quality of life and me getting even more illnesses and conditions, they downgraded me to standard award which was about 20 pounds a week and a big drop.

I appealed and they then simply stopped my payments altogether and stated that i wasn't entitled to anything. Out of nothing but spite as i had the cheek to appeal IMO.

Anyway. I claimed again in December last year. Had another assessment. Total inaccuracies and lies by the assessor and i was told i had not been successful in April. I then put in a mandatory reconsideration appeal backed up by some sizeable documents and evidence and they refused and pretty much sent me the same response as though they'd not even bothered to look at any of the documents and evidence i worked so hard to provide.

I failed the mandatory reconsideration and now i have appealed again, put forward further evidence as my difficulties are worsening and i am awaiting a tribunal date where i will be under such intense stress as i'm going to it in person but they aren't getting away with it.

It's been a battle and very stressful and not acceptable when you are talking about already vulnerable people having difficulties to have to deal with all this but they simply don't care. All they care about is saving as much money as they can. If i felt i had been treated fairly and respectfully at any point during the process then i'd sort of understand but i have been misrepresented, ignored, misunderstood and cheated.

So now i have to wait up to 4 months to get a tribunal date and then i'll have to wait after that for a decision. So in essence it will have taken me over a year to get to the point where i will be able to receive some help - if successful obviously. This in itself is an absolute disgrace.

The double whammy for me is that i have two conditions (amongst others) that generally don't seem to be recognized by the Department for Work and Pensions as a problem and conditions for which most GP's are more than happy to ignore through ignorance as they know nothing about the conditions.

M.E / CFS and Autism.

If you have one or both of these and you want some help then basically you can get lost as far as benefits are concerned as they don't believe they are real and don't believe that they can drastically impact daily life. If i had one leg though i'd get everything.

My problems are often unseen and not easily explainable but i've often said. I'd much rather have a leg amputated and be free of M.E, challenges from autism and free of mental health difficulties for ever. With all due respect to people out there who may be amputees or are in wheelchairs etc.

I just think that if your difficulties cannot be seen then they assume you don't have any which is a prejudice that many PIP claimants find it tough to overcome.

I'm a battler though so i'll keep fighting and keep at them.

 

[Autistamatic]

I'd much rather have a leg amputated and be free of M.E

My OH has made the EXACT same comment.

We've had to do a couple of appeals for her DLA/PIP and it's an exhausting process I wouldn't put my worst enemy through. The first time we went to a tribunal the people on the board were visibly and vocally shocked that she had been declined. They even told her on the day that they would be pushing for full mobility & care awards, they were that concerned.
When she was reassessed a couple of years later she was declined again, despite the successful tribunal previously. We had to go through it all again. Thankfully the last couple of reassessments have gone through OK, but we're still on edge every time a brown envelope comes through the door.
I doubt there's anything I can do, but if there's any help I can provide, having been through the system several times, just shout.

 

[AloneNotLonely]

When I was a kid my family actually won a trip to Disneyland. We didn't go. The reason was something like "Disneyland is horrible so I'd rather pay for something that isn't full of screaming children than go there for free". I think the bigger disappointment was not being able to exchange it for money. So I don't see how you would be "forced" to go. If something sucks it sucks, even if it's free. However, Disney isn't doing too well, so your 10 bucks would be well spent on a company that's being mismanaged down into the shitter.

For the M.E. you should get blood testing done with liver values if you haven't already. Extreme fatigue can be caused by certain viruses and this can be seen on such a blood test. It's not guaranteed but it's something to try.

Other than that you shouldn't feel pressured into doing something out of an idea that you have to. Experiencing new things is good and you shouldn't isolate yourself from them, but once you've figured out that people are pretty lame it's probably better to focus on things that don't include too many of them. If you are happy doing what you are doing, then there's no reason to question it.

Your biggest problem seems to be that you are annoyed when other people seem to think or do "the wrong things". For me pretty much everyone thinks and does the wrong things, even people I get along with. It just doesn't frustrate or annoy me because why would I? They have to live with their delusions, I'm already living in the free world and they can't touch me unless I let them.