To wonder is my bad Work Ethic my fault and ask you how the fuck can I change? Desperate. Do I sound ill or bad?

[shittyworkethic]

I do nothing. Nothing. I have no children. I work 4 or 8 hours a week, that's it really. It's not guaranteed work.

I'm exhausted all of the time. I have anxiety which in one way I cope ok with, but in another I seem to use an awful lot of energy just calming myself down to do normal things. Then there's no energy left for anything else. It's like I only cope if there are no demands made of me, then I can do the basics like eating, showering, laundry - but once I have to meet a commitment of going out to do something, I get really stressed and feel panicky like I can't cope. Then everything gets done really badly, I just do the bare minimum until I can crawl back to bed and eat junk food because once I've been out at work I can't even begin to think of cooking.

My mind literally feels like it's exploding (although obviously it isn't!) with so much to worry about all the time, and it's like I'm constantly working frantically to reassure myself.

Right now, there's a fly crawling up my window and i have no idea how to get it out - the window is much taller than me. I feel anxious at it's dirty feet putting germs everywhere and grossed out at the idea of swatting it. I'm not panicking but it feels like it's using maybe 20% of brain function to manage how I feel about it. I hate insects in my house.

I've moved house and had to cook on gas for the first time - in six weeks I've only done it twice because it just overwhelms me so much. I spent hours hungry today rather than just go and make a fucking omelette like I wanted. Eventually went and did it and I feel ridiculously pleased with myself, but also upset because I'm a grown woman and it shouldn't emotionally exhaust me to have to adapt to new cooking facilities.

The thing is, once I'm safe at home with a bar of chocolate and time to relax - I'm happy enough. So I'm not really sick enough for intense mental health intervention.

I have a new psychiatrist who is fairly happy with where I'm at - I had a suicide attempt two years ago and have been stable since coming out of that bad spell. I had a fair amount of trauma as a young person, so I'm fairly sure I do have a bit of PTSD in the mix. This time of year is quite hard and I get intense flashbacks which make me want to sleep to get away. I'm also waiting to be assessed for asperger's although that's not what it's called anymore.

Another doctor has mentioned possible Chronic Fatigue Syndrome because I have so little energy and also I have an auto-immune disorder.

Do I sound batshit crazy or just like a bad, lazy person? Do I just sound like a fucking spoilt brat? I don't know what to do. How do I change myself???

I just want to be a normal, healthy person, who has enough energy to work and make a positive contribution to the world.

[CFSKate]

We have a big CFS thread here
www.mumsnet.com/Talk/general_health/2618526-CFS-ME-Fibro-spoony-support-thread-2?pg=16

[flibflob]

I have chronic depression, and all of this sounds awfully familiar. Anxiety and depression often go hand in hand, as with long-term illnesses like autoimmune diseases. I also have PTSD which can often throw you a curveball esp if you're already struggling. Just my experience.

The Mind website has loads of easy to digest information on MH, and you can call or (I think) email (am on app can't link). If you are under care of psychiatrist write everything down and talk it through with them or GP if you can't see them quickly enough. We'll get there. Wishing you all the best

[lasttimeround]

And don't feel guilty you are probably ill and need a bit more support not blame and shame. Life isn't the kind of struggle you describe when you are well.

[lasttimeround]

I think you do sound sick enough for a mental health intervention. I'm sure your Drs are very pleased (as should you be) you've made your way back from being suicidal. But the level of anxiety and hard mental work you need to get through the day is not how healthy people function. It's really hard to get decent mental health support when things aren't critical but it could make all the difference. Could you get someone professional to help you work through this more systematically. Maybe there's an underlying physical cause (cfs?). Maybe meds for anxiety or compulsiveness as well as therapy and self care routines. Is there some way you csn get someone to help you fund an intervention with a big ov medical oversight. Do done tests. Make a plan for trailing certain things and actually seeing that through? Its overwhelming to go yourself snd a bit of medical and psych expertise is good too). I think that kind of low level longer term support is sorely lacking in our health system.

[shittyworkethic]

Heron I survive on PIP and housing benefit. I don't claim JSA or ESA because I feel guilty enough as it is.

[heron98]

You sound depressed.

How can you afford to live if you only work 8 hours a week?

This is an unpopular opinion but I do think there's an element of "just get on and do it" with a lot of life. Just work more hours, force yourself - even if you hate it it can't be worse than what you're doing now.

And as others have said, the more you do the more energy you have.

When I was unemployed I slept for hours in the day and felt so exhausted precisely because I had nothing to do.

Now I work full time, work out for three hours a day and run a part time business and bizarrely have a lot more energy.

[CFSKate]

"It's like I only cope if there are no demands made of me, then I can do the basics like eating, showering, laundry - but once I have to meet a commitment of going out to do something, I get really stressed and feel panicky like I can't cope."

I have ME/CFS and so I do not have enough energy, and so when I am asked to do something which I do not have enough energy budgeted for, that is stressful, when I am required to perform to a standard which I can no longer meet, because I just don't have enough fuel. So of course I feel like I can't cope, because I can't! It's like being asked to buy something costing £10 and I only have £4. I can't do it, not without going into debt/relapse.


About exhaustion and anxiety in CFS, sometimes it can be this instead of true anxiety. Dr. Bell's case history of a patient, Maggie, with chronic fatigue syndrome and fibromyalgia plus panic attacks is excerpted from Dr. Bell’s book Faces of CFS - Case Histories of Chronic Fatigue Syndrome,* published in August, 2000.
"It shows how a expert diagnostician can tell the difference between a panic disorder and ME/CFS and fibromyalgia. In Maggie's case her prior doctors had zeroed in on symptoms similar to those found in panic attack (heart racing, face flushing, lips quivering) while ignored symptoms that were associated with ME/CFS (exhaustion, cognitive problems, leaden feelings in limbs, sore throat, IBS symptoms)."

Please note I am not saying you can't have both CFS and anxiety, of course you can, just that there may be something more complicated in there as well.

[Goldfishjane]

Gthanks callie

[Cailleach]

Well, here's what works for me.

• no caffeine for six hours before bed
  
• no sugar four hours before bed
  
• flux app on PC turns down blue light factor on PC monitor. Ditto tablet and phone. (Blue light blocks melatonin production.)
  
• rigid routine, in bed very early.
  
• white noise on in background (radio tuned to static)
  
• ear plugs in
  
• bed room dark as possible
  
• no worrying about lack of sleep. No thinking. Turn brain off, go blank. (Takes practice, this)

[Goldfishjane]

thanks op
My precious Sunday night sleeping pill didn't work
It's going to be a fun day on the office......
So yes, sleep routines interest me, if I could up my sleep it would help a lot

[outputgap]

Asd jumped out at me from your description, op. Regardless, you need to cut yourself some slack. You are actually doing great.

And Cailleach, I love your post too.

[shittyworkethic]

Of course I don't mind! Anything that helps, any of us, it's all good!

[Goldfishjane]

OP I hope you won't mind - might benefit? - if I ask Callieleach for any sleep routine tips. I don't have autism but the anxiety and depression give me insomnia issues and that in turns affects everything else.

i run, I often thinking walking might be better but running takes less time. That prob sounds a little nutty in itself but between work and commuting that's how I fit in exercise which is essential for my sanity.

[Cailleach]

Thanks, givemestrength. I wish I could teach it to you, and anyone else that needs it, but I think you just have to get there in your own time and in your own way.

Self-awareness is a big part of it... Knowing why you are the way you are and why you react the way you do in certain situations is empowering stuff, and hugely helpful.

[givemestrengthorgin]

Cailleach I love your post, you sound pretty awesome. I don't have autism but reckon I could benefit for an attitude like yours. Less procrastinating and more doing .

[shittyworkethic]

"I think autistic people are probably very slow to learn skills that other people pick up naturally, and so we get into a mindset of "I can't do this" where actually we generally can - ok not in all cases - it's just going to take fucking ages for us to learn to do so than it would do for someone neurotypical."

This made me smile, in a rueful way. It sounds like you are doing so well now - bloody well done!

I really identify with a lot of what several of you are saying. My ASD assessment will be sometime during the next six months, it's with the NHS. I wonder what the verdict will be.

My executive function is truly abysmal.

[Cailleach]

I was a lot like you in my twenties, and early thirties. I would spend all weekend in bed, exhausted, wondering why I found everything so damned hard. I had at least two major nervous breakdowns, one leading to a three month stay in a psychiatric unit.

I was eventually diagnosed with autism at the ripe old age of 36.

I am now 40 and function much better in life, although to be honest most of the time I am still clinging on by the very ends of my fingernails half the time.

I was thinking about this the other day, and wondering why I had gradually become a more functioning individual over the years, and I realised a few things.

One was that it had taken me a long long time to learn how to do basic tasks effectively - cooking being the main example - and that the secret to doing so was basically endless, endless repetition of those tasks until they came naturally and I no longer had to think about them. I now know, of course, that executive dysfunction is a massive part of ASD, which explains a very great deal about me personally. I think autistic people are probably very slow to learn skills that other people pick up naturally, and so we get into a mindset of "I can't do this" where actually we generally can - ok not in all cases - it's just going to take fucking ages for us to learn to do so than it would do for someone neurotypical. This gets very discouraging, and leads to depression and frustration and profoundly low self-esteem.

The other is possibly more important - I have stopped thinking endlessly about things, and now I "Just Get Up and Do Them". If I start ruminating about all the things I need to do, and all the things I haven't yet done, and oh god I really fucked that up yesterday didn't I, I am using up valuable mental energy that I require to actually get things done, and I don't have very much of that to start off with.

I have rigid routines, designed to minimise stress and eliminate the need to think. So I am in bed at 10pm, no excuses, rigid sleep hygiene firmly in place. At 7am, I get up. Every day. I get out of bed before I even think about it, because if my mind starts Churning with Plans before I do, I'm fucked. Then before I do anything else, I eat to give me energy.

I walk a minimum of ten miles a day (helps with sleep) which I check on my Fitbit, take the pill back to back to eliminate periods (no mood swings, reduces sensory stress due to pain) I eat ABSOLUTELY regularly.

Shopping is always done first thing in the morning, when almost no-one else is in the store - this minimises sensory stress on me. Friday afternoon on mornings shift week is washing day, Friday morning on afternoons shift week ditto. Cleaning done once a week, Friday likewise, so I have the weekends free. Etc etc etc.

Life is kept as simple as possible: clutter in the house is kept to a minimum, I do not answer the door or phone unless I have to, I do nothing whatsoever to complicate my life, I have considerable built in down-time to allow me to decompress. If other people want to come round, I am free to say no. Just "no", with no guilt. No, I'm too tired, bugger off.

When I catch my mind beginning to Churn, I stop it.

I do not care what people think of me any more. If they think I'm weird, I am. If I don't get it right socially, so the fuck what. I'm doing my best, if that's not good enough, tough titty, like they'd be doing any better if they were in my shoes.

I basically go through life a bit like a robot, but it's the only way for me to survive - Turn Off Chattering Brain, Move. Do Stuff. Cocked It Up, Don't Care. Learn From Mistakes. Keep Going. Don't Think About It. Just Do It. Stop Caring So Much.

I realised that the stats for life achievement for people with HF ASD are woeful, so holding down a job and just living independently were huge achievements, considering everything.

It's very very hard, OP, I have to be honest.

This is why the focus society has on autism as an issue with an individuals social skills and nothing else drives me nuts. Personally the hardest parts for me are the overwhelming sensory issues and the crippling executive dysfunction, but most people have no idea about that at all.

My advice? If you are diagnosed with ASD - or something else - make sure you read everything about it that you can. You will understand yourself better.

If you had told me I'd be doing this well at this age around the time of my diagnosis - and that's only four years ago, after all, I'd have been amazed. Don't let yourself get discouraged - whatever you can achieve today is a positive.

Best wishes, anyway.

x
C

[shittyworkethic]

"What feels impossible on day one might feel unmanageable on day too, unpleasant on day three and just about doable on day four but only if you've spent those days imagining doing it, not trying to find ways to avoid it."

I can really relate to this. I seem to do everything like this, which in some ways feels like procrastination but in others feels like I'm building up to actually being able to do something.

[shittyworkethic]

Thank you.

I have a supportive and loving partner but we live in different countries. We miss each other a lot, which I think is difficult emotionally too.

I have excellent specialist doctors and nursing staff re my physical health and because they do recognise the impact of long term illness I have access to a psychiatrist via them also. I am very lucky.

Normally, I chat with some of my family once a week but over the last couple of weeks I've been making excuses. I think I won't be positive enough on the phone and they will feel awkward and worried. That makes me feel worse and very lonely.

[Mummyoflittledragon]

Itsnoteasy The money spent on research on sexy illnesses drives me insane as well. As I said upthread, I have ME/CFS. Doctors, I have read, who work with both ME and AIDS patients would rather have AIDS because of the massive injection of cash and research. There was a thread a couple of days ago started by someone, who was anxious about their BIL as he had just been diagnosed as HIV positive and from what posters said, it really sounds like it is no big deal.

To be made to feel like we are not deserving or question ourselves and be ridiculed by family and many in society because we don't have one of these high profile diseases is really shit.

Op yes, some of your symptoms are undoubtedly being made worse by anxiety. This would be the same if you had cancer or HIV. State of mind has a big bearing on any illness.

[givemestrengthorgin]

You are not pathetic or a burden OP. In fact, you sound like a tough cookie who has come through some very hard battles. Yes you have the battle scars to show for it but given time, compassion (from yourself) and the right support from a therapist you can change how you feel. It sounds like you are very self aware which is great but you are being too hard on yourself. Don't put undue pressure on your shoulders but setting yourself some realistic goals each day could work well. Like going a walk, using the gas hob or doing some shopping. Do you have much of a support network in real life?

[Goldmandra]

Do I sound batshit crazy or just like a bad, lazy person? Do I just sound like a fucking spoilt brat? I don't know what to do. How do I change myself???

You sound very like my DD who has AS and is at university.

She has to plan her life around how much mental energy she has to share between all the tasks she needs to complete. She also has to let some things go just because she knows that doing them will prevent her from doing other things.

Her severe anxiety makes her ill when it is bad and long lasting. That level of stress on your body does affect your health.

One thing that helps her is to plan to achieve less so she doesn't feel like she's letting herself or anyone else down when that's what she does. Once she gets her head round only trying to achieve a manageable amount, she finds that she is more able to achieve the things she has decided she can manage.

So, on days you are working, have food planned that you don't have to cook because you don't have the mental energy left to do that.

Demand avoidance is common in people on the autism spectrum so don't feel like you need it to be diagnosed in order for it to be recognised. A good strategy for managing it is to allow yourself time to process the demand and come round to it wherever possible. What feels impossible on day one might feel unmanageable on day too, unpleasant on day three and just about doable on day four but only if you've spent those days imagining doing it, not trying to find ways to avoid it.

Remember that stress fills your brain with chemicals that make it hard to think and not being able to think properly makes you stressed. Try to get out of that vicious circle by stopping, using distraction and relaxation and coming back to tasks later when you feel less stressed.

Lastly, find out about impaired executive function. It can cause highly intelligent people to find a simple series of tasks impossible to manage. If it rings bells for you try to remember to break tasks down into tiny steps and only ever focus on one of those steps at a time. Creating lists to follow so you don't have to work out next steps all the time can help too.

Don't try to change yourself. Try to cut yourself some slack and stop trying to live a life you don't find manageable. It's OK to do the things you can manage and let other things go, even if they are things other people can manage easily.

[Goldfishjane]

ah, so the auto immune disease, does it flare up in trying times?

I have depression and anxiety and no idea how I'd have held down a job if I wasn't medicated. I think in previous era I'd have been homeless or in Bedlam frankly.

I hope you find a way to get more progress made. I'd also look at pernicious anemia btw, I think it's under diagnosed.

[Itisnoteasybeingdifferent]

What is the auto imune disorder?

I am a sarcoid. It is thought to be an auto imune disorder, though no one yet knows because most research money goes on sexy illnesses lime cancer. One of the biggest effects is chronic exhaustion, and depression, and being very difficult to deal with when it is active...

[WobblyLegs5]

I'm another who thought I would be fine once I dealt with the baggage from my childhood. But actually there's also all my disabilities underlying that add up to cfs also. And many disabilities cause us to be able to push through things then crash later. I actually have a few months of my life in a few different times periods where I was just literally asleep allways, I would be asleep at 6 pm then sleep through my alarms and not be up until 3 or 4 then back to bed. My partner used to make my meals/wash my clothes. I'd be up for a day or two each week then back to my job of sleeping. It can take some of us much much longer to build stamina, emotional, mental and physical kind of stamina, and I only maintain the minor amount of this I have now by very strict pacing, lots of presciption Meds and tones of supplements. Although exercise works for me too- started with physio because I was bed bound and added in pilates and hydrotherapy when I could, now weight lifting works too. But still need to pace myself. Work wiser rather than harder, pass the mundane stuff onto others. Also when I work or write the little amount I do I get a huge rush out of it, which is emotionally energising. So if you have a passion or hobbie that can give you that kind of kick it's worth building up to that. And throw away stereotypical notions of success- join us non conformists on the dark side.