It's over a year now since I suffered a major burnout leading to long term sick, and since I've returned to work I've been taking care of myself by not travelling and really carefully managing my sensory environment & keeping away from hubbub (lots of conversations etc.). My self care has worked really well, and I've feel that I've discovered "normal, healthy" levels of stress for the first time in my working life (healthy levels of stress for *me*, at least).
Now that I'm looking like I've recovered from burnout and I'm starting performing at 95% again, I can feel myself coming under pressure to start attending meetings in person again and travelling again. Before my burnout I was flying into Europe alone maybe every month and just feeling important rather than stressed. Now I'm very wary about returning to what everyone else will see as normal.
I don't know what I'm asking others here for - maybe just sympathy & to tell me that yes, I need to look after myself and not put myself under pressure.
By the way, one of the things I'm *really* mindful of is giving an inch and being expected to do a mile.............
With me, as soon as I felt even a little bit ok, I would rush back to getting things back to where I was before the burnout. But that was pre diagnosis. So I’m learning from that and I’m getting good at it and I’ve learned the art of baby steps, knowing my limits and being able to pick up on them before I get overloaded. But it’s been a process which has taken me a good year to get to grips with.
BlueRay, could you please explain in more detail how you find your limits? I'm really struggling with the whole "keep calm and carry on" attitude at the moment, and I can't seem to turn it off.
I'm typing this while I should have been at work, I phoned in sick this morning even though I'm not really all that ill, I'd normally have just taken a paracetamol and got on with it. But it's more emotional than physical, and the place I work isn't very sympathetic about that sort of thing. I explained to the manageress that I was struggling and wanted to reduce my hours a couple of months ago, and although I was able to do that, she has been distant towards me ever since and looks at me differently, sort of puzzled and on guard, I think.
I'm actually worried that I might be close to some sort of personal crisis, because I've been through bouts of depression my whole life, but never anything quite like this. The closest I can describe it is like being smashed to pieces on the floor and kicked to all corners of the room, with no plan for how to put myself back together. The things I normally do to calm myself aren't working very well. I feel bad about asking for help right now, and even feel bad about feeling bad about it. My inner voice is still telling me not to be such a wimp. How can I make it shut up?!?
I wonder if I could just put something in there quickly, OrinocoFlo, because I identify so much with what you've said here.
As you may know, I left my last job after being signed off long-term with stress following a period of bullying. While I was off, I managed to get a new job at a local FE College, which I started at the end of January. Although I was working with a familiar client group, I had to learn a new pace of work, and cope with a lot of training in a short space of time. After two days, I went sick again. Like you, it was more emotional than physical. I hadn't fully recovered from my previous experience, but I think I would have been able to cope with the new job were it not for all the changes hitting me at once. I felt awful about it. Within a couple more days, I was giving myself a really hard time for being such a wimp. The point is, though, I'd underestimated the impact of all of it: the new routines on top of still trying to recover. I began to wonder what the hell was wrong with me - and if I'd ever get out of this hole. It got to the point last week when I didn't want to get up and face the day any longer. I couldn't figure out why I hadn't realised what my limits were. But I hadn't. I thought was ready. But I wasn't.
That all changed again on Friday, when I was interviewed for another job - in a place where I used to work, which I liked and which is more familiar (I can fit straight back in) - and was offered it. The difference this has made to me is enormous. It's like suddenly, all of my switches have come on again. And I feel hugely better and more able to cope.
So it's made me feel like a huge fraud this morning, trying to explain to my work coach at the Job Centre how I could be in such a pit over the last few weeks - and am now suddenly better. She's saying to me that I need to get a new sick certificate if I want to continue my UC claim until I start my new (old) job in March. But I can't go to my GP and ask for another certificate... because I feel okay again now! I can't fake feeling ill.
I guess all I can say is... sometimes, those limits and tolerances - depending on circumstances - can be changeable. Sometimes, it simply isn't easy to predict the impact things will have on us. So please try not to give yourself a hard time over it (though I do understand why you are, because I'm the same). Go and see your GP again. There's nothing worse for anyone than being in a place of work where they aren't particularly sympathetic - but I think the impact on people like us can be much worse. Your GP can maybe back up your request for reasonable adjustments (reduced hours). And if that is going to make you feel better about your job and improve your performance at it, then that is surely a bonus for your employer, too.
'Keep calm and carry on' is a bit like 'look on the bright side'. It's quite demeaning and damaging to people with mental health conditions, and ASC.
Take care of yourself. Try not to worry about what other people might be thinking of you (though, again, I do that). Your welfare is all that really matters.
PS Check out my comment directly underneath this to see how I was just over a week ago!
Thank you for your reply and compassion and help. I'll make an appointment to see my GP as soon as I can, I've been putting it off because of feeling that I ought to be able to manage and be strong. But I just can't right now, I don't have much left to offer.But I'm not sure how to tell people who rely on me that I need them to back off for a while.
A line from a Gary Numan song keeps running through my head, "My mind turned on me with a vengeance I'd never known- my own." I have a lot of anger that I'm only just recognising, I don't know where it's from and don't know how to let it out safely, or whether I should do so, or what it's directed at. I feel like a mess.
I can relate - I ran into a brick wall in October 2017 thinking I was "busy and important and a bit stressed", and now I look back on it as the mental health equivalent of breaking both arms and both legs.
If you can, can you find some seriously quiet space where you can give yourself permission to find the real you and look after *your* needs? I know this is easy to say & I don't know how I would have reacted if someone had said the same to me in the summer of 2017.
Thank you, I've been thinking it would be a good idea to take some annual leave and just clear off on my own for a few days, leave my phone at home and maybe do some meditation or go for a long walk.
OrinocoFlo said: I've been putting it off because of feeling that I ought to be able to manage and be strong.
Yes... and probably based on your previous experience. You've done it before, so why not now?
Try to think of it as something like a car. It's run for thousands of miles without a single problem or breakdown. But then something very small happens. Maybe the timing goes out a tiny bit. The car still runs, though. But nothing gets done about that fault, so it knocks on to something else, and that knocks on to something else... and then one day your car, which has never given you any problems, suddenly breaks down. And you don't know why. But it won't go any more. In needs attention.
I find my body can be just like that. A small thing can knock on to something else, and it all just builds up - and catches me unawares.
I’ll try OrinocoFlo.
I got to a point in my life where I could feel I was starting to loose it. And slowly(ish) but surely, I came to a full stop. Commonly known as burnout.
But I think that while many people have heard that term, they don’t really understand it. I wasn’t in a deep depression or anything. Or maybe I was, but because I don’t recognise emotions, I wasn’t aware of it. The best I can say is I simply stopped functioning.
It was amazing and I particularly loved the longest part, which was indulging completely, in my autistic nature. I was swimming in it. Eating it. I was it and I loved it.
After a good year or so of this. I realised, my god, this is the best thing in the world. I simply love, more than anything else, to be at home, completely by myself, not getting washed or dressed, unless I felt like it. Not eating or drinking, unless I felt like it. I learned to live off solpodeine max tablets, smoking, chocolate and the occasional shop bought sandwich and packets of crisps. It was wonderful. Going to sleep when I wanted to. Waking up when I wanted to. Sleeping for weeks at a time. My son wanted to celebrate when he told me I needed to move. Because I did what he said. I moved from one settee to the other. And it was great. The change was good. My next big move was going over the road to visit my elderly neighbour!
I realised, that there is nothing in the world I love more than being at home, researching and reading, writing, and drinking delicious cappuccinos while smoking my head off!
And at the end of that beautiful period, all my blood results and normally ridiculously low blood pressure, were perfect!!!!!!! That has never happened before. So I know we don’t get healthy by the food we eat! Even my vitamin D levels were up and the doctor said, in fact they were the highest he had ever seen!! How do you get that from two years in bed?!?!?!?
So, after realising that there was nothing better in the world than being home, alone. I also realised that I wasn’t made to live like that. If that were so, I’d be living in a cave somewhere by now. So I realised I had some purpose here. As soon as I realised I was autistic, my life changed. Instantly. For the first time in my life I felt like I belonged. That I am a human being afterall. I thought I was an alien from a different planet, before the diagnosis. Dropped off here without a clue what I was doing and with no brothers and sisters. So naturally, I never felt like I belonged and therefore that I didn’t have a place here, let alone a purpose, I didn’t even think I belonged here so there was never a question of what’s my purpose.
But when I found out I was autistic, aka a human being, everything changed. I knew I was a human being, which meant I belonged, which meant I had a place here, which meant I had a purpose.
I knew my purpose wasn’t to sit in my room all day, like some half animal, blissfully happy, but reliant on others to feed me etc. I also knew that whatever I was here for, it had to give me supreme joy. As much as sitting in my room does. Because regardless of how we think we got here. I know we are here to enjoy our time here. So I knew that there must be something else out there that I would love, just as much as sitting at home. And that’s what I set out to find. Starting from zero.
And how I found my limits. This is how it happened. I realised, through close and careful observations (not judgements) that even putting a stamp on an envelope to get it ready to post, was a full day’s job, at least. Even after it got its stamp, it could still take days or weeks or even never, to make it to the post box.
It’s like I found my bliss, although I knew that, that bliss (sitting at home) wasn’t my future. Not all of it anyway. I want to be able to at least feed myself, provide for myself financially etc and have as much money as I need to do whatever I want and when I want, but I wasn’t prepared to compromise on that bliss, not even an iota (whatever that means, lol). So if posting the letter feels like a strain, or something I have to do, or like something I don’t want to do, then I don’t do it. But without any judgements of any kind. If a judgement comes up. I work on it. For example, my mind will tell me I’m lazy, or it will ask, what’s wrong with you, or it might throw other judgements at me or statements to scare me, such as you’ll never work again etc etc. So I put them on paper and deal with them. I’ve mentioned on here what I use, many times. And one of my favourite techniques is Byron Katie’s ‘the work’. I use this technique successfully with myself, friends, clients and strangers (friends to me). I use other techniques as well. But this is a great one for questioning our thoughts and particularly our judgements.
I do not keep calm and carry on. I keep calm by stopping what I do. Regardless of the consequences. I don’t care what happens from the actions I take, so long as those actions are aimed towards looking after me. I have even missed job centre appointments which, by rights, means I should have lost money, but I never. And I think it’s because I didn’t care. I am focussed on building a solid foundation from which I can begin to build a life, in which I can be happy and thrive, and I won’t compromise on this. I guess it’s also a matter of what you’re prepared to give up as well.
It’s like I have a pre diagnosis life, which I see now as my adventure to finding out who I was. The aboriginals call it going on walk about. The bible calls it being in the wilderness. All the great faiths and religions etc, have a description of this. And when I found out who I was, i.e. a human being, an autistic one, I started my new life. Which is of course going to look very different to my old life, because in my old life, I didn’t know who I was, I was still searching. But now I’m not. I am still discovering new things etc, but that’s all part of this life, my new life. I’m not searching, I’m discovering, there’s a difference.
It’s like now. I’ve just started this new course and I had planned on catching up on it this morning, as I’m behind already and we only started week 2 yesterday. But when I got up, I got a text message to say I’m at the hairdressers this afternoon. That’s a big deal to me. So although I could do both things, do my course work this morning then go to the hairdressers, it would be too much for me. Because I know that, I will make the decision to either go to the hairdressers or do my course work. Well I only go to the hairdressers every 18 months or so, so I decided I have gone to the effort of making the appointment etc so I’ll go there. And leave the course work for now. I can catch up the course work another day, and if I can’t, I can’t. I don’t worry about such things anymore. If it means I can’t finish the course, so be it. It wouldn’t be the first course I didn’t finish and the world won’t come to an end. Even though it is my next step on my journey to getting back into work, but so what. It’s just a step.
Through continual effort of using the techniques I found and being fully committed to me and my wellbeing, I have learned, over time, by trial and error etc, what my limits are and I will only go beyond them for something really special ~ and there has been nothing really special so far. This is building a strong foundation, built upon the anchor the diagnosis gave me, which I never previously had. So I work on the techniques, on me to build self awareness so I can create a life of joy that exists beyond my room!
I now do this for a living. I help other people to break free of their limitations etc to discover they can live their life any way they want.
I don’t know if any of that helped, or if it’s even clear enough. But please feel free to ask me for clarification or whatever. You sound like you’re in a similar place to what I was in, a few years ago. And don’t get me wrong, I have been in some really dark places over the course of the last few years. That’s how I found this site. I was suicidal. There have been many downs, but to me, they were simply part of the journey, and I don’t dwell on them once they’re over. I dwell more on the wonderful, freeing self discovery’s etc that they lead to. For example, my relationship with the guy who was a narcissist, lead me to discover that I didn’t love myself as much as I thought I did, so how can I ever be sorry about that relationship or look at with with anything but undying love and gratitude. Without that relationship I may still be living in total ignorance of the fact that I didn’t love or accept myself. And there’s no way you would be in a relationship with a narcissist if you loved yourself so that’s how I found out I didn’t love myself so I will always be grateful to that relationship, as hard as it was at the time. So often, our best moments come from our very worst experiences which then enable us to live in gratitude instead of anger and resentment ~ both states bring their own fruits. If a person lives in gratitude, the fruits are more reasons to be grateful. If a person lives in anger and resentment, their fruits will be more reasons to be angry and resentful. That’s just the way the world works. It’s the law. :)
Sick notes are not only for people who are physically ill. I’m always as happy as Larry when I go for my sicknotes. I just say I am not fit to work and the short answer is related to autism. And that’s good enough for them! Lol! They don’t want to hear all my ins and outs.
And yes, I totally agree. Our limits change from situation to situation and it’s usually related to how much we really want to be in the situation or not.
I can't say I enjoy going for sick notes, because I don't like to feel 'sick' - but that's just to do with the way I look at it for myself. The truth, for myself, is not that I'm unfit for work, but that I'm unfit for certain types of work - and fit for others. A sick note (or 'fit note' as they're correctly called) is either one thing or the other: you're either fit for work, or you're not. I don't actually believe that I'm unfit for all work.
Yeah, I hate going for them. I only have to see the doctor about once a year. I just phone up for them and they last 3 months, but I still didn’t like doing it and was always late with them. But fortunately, after my health assessment, I don’t have to give them in any more.
For me, I was definitely fit for many types of work. But that would not have been of benefit to me. Because even if I did the job, and enjoyed it and wasn’t over tired. After me time and relaxation etc, there would be no time to explore what I really need to do, which is to work for myself. For that, I need time, not working. So for me, in that sense, it’s easy. I’m not fit for work. I’m only fit to work but that work would be a barrier to me finding out how to do what I want to do, which is to work for myself because I don’t fit into the workplace because of my autism. So they agreed, I’m not fit to work and they simply write autism on the sick note. And when I see the doctors, I just update them and I say I’m working on it, because I am, but no, I’m not ready to start work again now.
I want to earn my money as a writer, teacher and metaphysician, so that’s what I’m doing. I had no idea how to do it but with all the help from the job centre and autism plus, I’m slowly moving towards making that a reality. If I had got a job, that would have prevented me achieving this goal, which will sustain me long term. Whereas the job, would only sustain me temporarily.
On my very first visit to the job centre, they had to bring the manager over to reassure me that they would never try to get me to look for a job and they would never mention that word to me. I set them straight from the beginning. This was more than me finding a job. It was about me finding a way to financially support myself, long term, in a way I could sustain and which I loved and which nourished and energised me and one that did not wear me out. And before I could even get started on the steps I would need to take to make that a reality, I first of all had to figure out what I wanted to do.
So my doctors have all agreed with me. I’m not fit for work if it’s going to stress me out and prevent me from achieving my long term goals.
What you’re describing is the typical narrow minded, rigid, autistic mindset. We all have it. If we’re autistic that is. But you can work to move beyond it.
For example, the autistic mindset sees the issue of the sick note, as very black and white (typical aspie) and that we have to make a choice between the two limited choices we have given ourselves.
However, of course that’s how I see it also, with my autistic mind. But circumstances forced me to look beyond my rigid and narrow minded thought pattern, because I didn’t fit into any of the sick categories, as they were presented to me in my mind. So I simply looked at the truth, from my perspective, put it to the doctor, and he said, yeah, you’re not fit for work. And from that, I was able to process it in my mind (it took awhile, maybe months) and I could see clearly that of course I’m not fit for work. Work isn’t something that is supposed to be detrimental to a person’s life. And even if I enjoyed the job, etc, it would still be detrimental to me long term. Because I know, long term, I can’t sustain regular employment. I get burned out or something else happens.
When I got my diagnosis and realised why I don’t sustain work. I decided to never work again, for somebody else. No matter how much I would like to. For me, it’s the easier option, but it’s not sustainable. I’ve proved that. So I had to find another way, and to do that, I needed space and time. So I was clear from the beginning at the job centre and with autism plus. I’m not looking for a job. But some rest, some work on self awareness and some time discovering what made me feel alive and happy inside. And now I’m ready to start to take some practical steps. But I wouldn’t be this close if I had taken a job. So I might not be as close to working as some might like, but I’m closer than what I would be, had I taken a job. And I’ve been offered some very lucrative jobs in the last couple of years, in some beautiful parts of the world. I was offered a job last week, working with autistic people, at £36 an hour and it’s local. And as attractive as that offer is, it’s not going to work long term because I simply don’t fit into the normal work place/lifestyle set up. So I have to find my own way. Or die trying!