Confused about accepting society or not.

[Skids]

Thanks for the offer of help and advice Autistamatic. Appreciated.

There are a couple of things about the way the Government handle people with conditions like M.E / Autism or mental health difficulties which i find difficult to get my head around and impossible to comprehend.

I'm generally a no nonsense, common sense Yorkshireman which when you add the often stubborn / rigidity of autism makes for an interesting cocktail! lol

Just think of a stereotypical Yorkshireman. Blunt, miserable and gruff and then chuck in autism and you have me! That's why i'm amazed i've had a partner for 18 years.

Anyway.

1. The Government are employing more and more people to deal with PIP claims and to try and dissuade people from appealing which costs more money. Each appeal costs even more money. Tribunals cost even more money and then i believe over half of tribunal appeals are successful anyway! So they effectively spend millions trying to save millions. It's quite frankly ludicrous IMO.

Just give those deserving cases the help they need and it wouldn't even cost them anymore that it is now.

2. The Government or the Department of Work and Pensions basically look at your case if you have M.E / CFS and decide that for 5 days out of 7 for example you are generally functional therefore they think you are capable of not only getting a job but holding down a job. Because i am 'OK' for 2 days a week then in their eyes i can work.

What they don't take into account is the nature of the illness. Which two days am i going to be ok on then? Because i sure as hell don't know. Who is going to give me a job at two days a week and even then two days which could be Monday and Friday one week and Tuesday and Friday the next because i'm not well enough on the Monday? Nobody.

What they should start doing is linking up with employers and finding flexible positions that people in my position are able to do without pressure as and when and support us instead of just forcing us into poverty because our illness dictates when we are able to work, for how long and what we are able to do if at work.

They don't understand the sense of isolation such a condition brings with it as well as the depression and reluctance to want things to change through fear and the lack of confidence around other people but they suddenly expect you to jump out of bed, put your 'game face' on, ignore the exhaustive fatigue, brain fog and pain and go and work in Greggs for 4 hours serving never ending queues of people.

The Government and DWP in this area alone are not fit for purpose and there is no way i will ever vote Conservative or even Labour again because they treat their elderly, homeless, vulnerable, sick and disabled like lepers.

Sorry about the rant again.

Thanks again for the offer Autistamatic.

 

[Skids]

Hi AloneNotLonely.

Thanks for your post. I agree with the Disneyland aspect.

As for the M.E blood testing. I've had to have extensive blood work done at the infectious diseases department of the hospital along with function tests for various things like thyroid, kidneys etc and all are fine. It's when your bloods come back fine that you get referred to the specialist M.E services where you are located (if you are lucky enough to have one) for support and guidance.

That's the main issue with the illness is that there is no apparent cause. Nothing shows up on tests but you are always ill / fatigued and developing symptoms of illnesses of one thing or another and according to medical science there is absolutely nothing wrong with you. As there is no cause or 'no illness' as far as some doctors are concerned then of course there is no treatment. I can assure anybody that hasn't had their lives turned upside down because of it that you wouldn't want to have it.

Initially the doctors thought i had contracted some disease from an animal as i had worked with animals for so long and things like that or lymes disease can cause similar symptoms but that was all clear too.

It's a stress response gone crazy IMO but i guess i'll never find out.

I liked your last paragraph and that is an approach i might need to take or indeed a different angle of looking at things. I am reading Eckhart Tolle - A New Earth and he is discussing similar things.

I did try it once when i got annoyed with other road users as i got annoyed lots out on the roads but one day i decided to go out in the car and no matter what anyone did to me then i'd ignore it and laugh to myself. Other drivers cut me up and did things that i found ignorant but i didn't let it register and i actually did feel a brief moment of untouchability. Like if i can't be affected by the actions of others then i have power over them rather than the other way around as it is at the moment.

Stress is diminished as are negative thoughts and it felt good briefly. Trouble is i slipped back into old ways pretty quickly as living constantly in that mindset takes great mindfulness and self awareness at all times and i just haven't been committed enough for that yet.

I think it could work though.

 

[TempeFan]

When I finally had the epiphany that I should stop trying to be normal and start living, it was such a relief at first. Then I too had to deal with this strange unpleasant feeling that I should be contributing something more, that I was wasting my time not accomplishing anything. I've achieved some really amazing feats in my career. I used to get a lot of personal satisfaction from a job well done. Now I no longer have the opportunity to earn any money and can't afford to go places and can no longer help people. Some days I feel a bit restless and sad as though I failed somehow. Though retirement is a great joy. It bugs me I was forced into it and out of society against my will.

I now have everything I ever truly wanted, which is so much more than most seemingly successful people have. It took almost 40 years to find my soul mate, but now I have the best husband in the world. We have a sturdy, comfy little house full of love and cats, three of 'em -Sara Snuggles & Sandy Cuddles & Nat the cat Natayo- who love us back. We even have enough health to go outside and play everyday, hiking, biking, tubing, camping, grilling - if only it would stop raining. Still, stuck safe and sound inside laughing and joking and giggling and wiggling and playing house ain't bad either. I can do puzzles and read books and watch old reruns from when TV was entertaining. I love solving puzzles and mysteries.

The day I was born, the state placed me in an abusive household to be raised by a rageaholic woman whose mother was a monster who raised her daughter to be one too. She and her codependent husband treated us kids exactly like her mother and her mother before (for who knows how many generations!) treated their kids. Even though I got straight A's and he got D's, I as a daughter was worthless and he as the son was perfect and everytime anybody did something wrong, I was scapegoated for it, even when I was 100 miles away and had no idea what was going on. Last year 'Mom' pretended she was making amends for the decades of abuse and asked me, to come over to her hoarder house for Thanksgiving dinner instead of him and his wife and kids. Being the object of her obsession for so long was causing my brother health and family problems and he had finally had enough and stopped being at her beck and call 24/7, as had all the other family members. It soon became apparent that the only reason she invited me was to use me to manipulate the rest of her big family to rejoin her fantasy world.

I had wasted half a century trying to be good enough for my so called "family" to accept me, before I asked the Question what did I want them for? I didn't. I helped my husband off the same roller coaster ride with his extremely toxic kin. Other than his sister periodically inviting herself to our house then not showing up, neither family has contacted us all year. We understand neither of us ever had a family but we still grieved for the loss of what we never had, the same thing regarding our jobs. For 2 decades we were illegally terminated due to someone else's hate/prejudice/jealousy that had nothing to do with our job performance. Now we are totally banned from the work force and from being any part of a family or other social group, stuck all alone on a moutain top in the middle of nowhere to fend for ourselves. The few friends we had abandoned us after we became too poor to party with them. We spent our lives helping others and were shocked by the realization that nobody was reciprocating.

I'm trained as a medical professional how to deal with eldercare issues such as diabetes and Alzheimer's and hoarding and depresion, etc. If you watch an episode of Hoarders on the freak channel, it's clear that when someone's house is so cluttered they can't use the bathtub to bathe or the stove to cook and every flat surface has mounds of junk on it, they have a long term mental illness from some trauma in their distant past. This couple the government assigned as my parents has obviously been struggling from their deplorable upbrining and suffering since before I was born and yet I was the only one who ever cared enough to lift a finger to try to help them out of their misery. None of their family members, parents, grandparents, aunts, uncles, 7 happily married siblings, dozens of nieces, nephews and cousins, or the neighbors, or teachers or social workers or law enforcement officers, etc. WHO ALL KNEW WHAT WAS GOING ON and whose duty it was to help, had the kindness or compassion to do anything but ignore their or the children's dire plight. How sick is that? I feel no guilt whatsoever for not wanting to be part of a society that allows such cruel callous treatment of it's children and the elderly. If I could change it, I would, but the best honest decent people like us with a working brain can do is avoid as much of the bad stuff as possible.

 

[AloneNotLonely]

You are talking about something different than what I was talking about. You were switching explosive anger with implosive anger.

It's not about coping with people doing stupid ****. It's understanding that they are stupid and inferior, and as such they are going to do such things. If you avoid them (for instance, don't drive) then it doesn't affect you. If you are out on the road you have decided to accept the stupidity of other people for what it is, and decided that it's a fair trade to get where you need to be.

When I got a puppy I got mightily annoyed when it decided to take a crap and pee on, out of all places, the only carpeted area in the apartment. However, this is just what puppies do. I kind of get it, that area was nice and soft and a very comfortable place to take a crap on. Puppies also like to be comfortable when relieving themselves. Getting angry and frustrated about it just doesn't help. You get some toilet paper, some deep cleaning agents and you go to work. From then on you pay attention to your cute little puppy whenever it starts making suspicious moves towards the carpet. People are no different.