mental health – Autistic and me

Me and The Lady

I’ve been watching Rebecca Zung lately again as I found her videos really informative. Rebecca Zung is an US divorce attorney and ‘narcissists negotiator’ as she calls herself. She seems to know a lot about narcissists, definitely much more than me, however, she’s focused on divorces and not on working with one so it’s hard to say what her advice would be.

I did say, when I just started blogging, if you are autistic and find yourself being targeted by narcissist at work, get out of there as soon as possible. I am wondering now, whether that is a good advice, as it only allows narcissists to get away, one more time, with their malicious practices. But then, after I found out what they are capable of, I would not feel comfortable to advice to anyone to stay and fight. We’re just not equipped to win this fight, unfortunately, and we need to remember that neurotypical people also loose in the fight against narcissists.

I never discussed the situation in Home Group in more details here (and I will not be emailing CEO or their customer service after I post this, as they’re clearly not bothered) so I’ll do that now.

The person who was giving me troubles was senior to me but she wasn’t a manager. I called her The Lady in my story and I’ll keep this nick name for her, as she indeed was a real lady, when she wanted to. She could, however, also play ‘the girl next door’ if she decided that would suit the situation better. That’s why, I think, it could be so difficult for people to pick up on her issues, as one just don’t expect someone who is so friendly and familiar to have nasty intentions.

As you may, or may not know, after a long period of feeling that I was being bullied but had no evidence, I left my job in Home Group and took them to employment tribunal. In the response to my claim Home Group stated that my autism diagnosis was delivered through AXA occupational health and it was them who organised it while in fact it was on NHS and they never got involved. How come that lie got as far as into official document for employment tribunal?

NHS waiting time is normally really long but my appointment was brought forward when I made the diagnostic centre aware of my work situation and as a result I only waited three months. Bringing the appointment date forward was really not a good thing: not only it made me believe that diagnosis would protect me from bulling but also it made it easy to believe for other staff that my diagnosis must have been private, that’s why it was so quick.

When me and my diagnostician discussed my employment support plan she at some point emailed me almost ready version as a word document and I then forwarded it to my manager, just to give her something as she seemed really eager to solve the issues between me and The Lady. It was in May, as far as I remember, or possibly beginning of June. I now believe that word document was used to make it look like it was provided by AXA and The Lady made the manager do it. The manager was going to retire in September the same year so she was probably hoping to get away with it. And why she agreed for it in the first place? Believe me, The Lady could turn anyone’s life into hell, she could get tenants to give other staff trouble (that’s what Rebecca Zung calls flying monkeys) and those two knew each other outside of work too.

Obviously at the time I had no idea what was happening, I was just getting disappointed that the diagnosis was not a solution I was hoping it would be.

At some point I actually wanted to leave, but then a combination of factors made me decide to stay and fight for my rights. One, very important factor was the fact that I started feeling terribly sorry for my dad. He had mental health breakdown in his 50’s and never recovered. I believe the breakdown was caused by sensory issues – he was undiagnosed autistic and worked as a welder. Going on disability, however, didn’t bring him peace. I think it was because he never understood why he couldn’t do the things that were coming easily to others. I believe he’d be much better off if he was supported to find himself a job that he could actually do. I was getting angry with all those psychiatrists who saw him over the years and no one would ever suggest he was autistic, but then, psychiatrists at the time weren’t trained to look for it, and the thing was my dad was atypical autistic, a lot like me: cravig for social interactions, telling jokes and driving loads of attention to himself while in bigger group of people and yet not having even a single friend.

So my dad was just one of the factors, but there were other too. Around that time The Lady started talking about people who are unhappy at work and yet, they do not leave. They should leave, she woud say, and I knew she meant me. So I thought, I won’t leave. I’ll stay and I show her she shoud have not been starting that silly game with me.

To make myself looking like a desirable person in the team I contacted a couple of people within the company and as a result I wrote a short article about Asperger’s syndrome (that’s how I used to call it at the time) to the company magazine and I also gave a speech about it during our away day, in front like 100 people – all when I felt badly bullied and when I had to take antidepressants to survive.

The speech went well, however, and I had people congratulating me. The result? A few days later another manager that I used to get on well with and trusted her started being nasty to me. What caused it, I really don’t know. I can only imagine that it was The Lady who got it organised but what it was she said, I really don’t know.

As that was our area manager I doubt she was told my diagnosis was private, as she would have to authorise the payment for it, so I guess The Lady must have come up with something different for that particular occasion. It was all too much for me and I went off sick for a couple of weeks.

Rebecca Zung says in her videos that to make the narcissist stop doing nasty things to you, you need to hint that you’re ready to expose some uncomfortable truth about them. I didn’t watch her videos at the time, possibly they were not available yet as it was 2016, but the problem would still be, I didn’t have anything that I could expose about The Lady. We worked together for a few months only and, despite the fact she was very chatty and craving social interaction all the time, she was actually very private person, only telling you what she wanted you to know about her. There was no way I had anything to expose.

So that is my question for this post: to leave or to stay and fight? I’d advocate leaving and yet, I know it’s unfair.

I feel like going on strike

Well, I was in a good mood for a few days already so now it’s time to be low. Btw I do not think that means I’m bipolar (which is my second diagnosis): I didn’t overspend, I didn’t get drunk, I didn’t even overeat (ta da!), I also didn’t make any strange plans regarding my future and I believe my insight was good. I think I really was just in a really good mood, possibly elevated slightly due to the use of therapy lamp.

Why I’m feeling bad now, then? Because I keep getting this idea that I’m not meant to have only one job: whatever I choose to do I’ll be running into trouble. It will either be too much contact with people and too much politics (like in a care home), sensory issues (in a warehouse), too boring (cleaning) or not enough time for myself (live in care). I do realise that other people don’t have some of those challenges and also cope better with those that they do have. Perhaps they don’t loose sleep (like me know) over the fact that they can’t find an ideal job and just get on with what they have, as long as it’s good enough.

One of my problems is that, when I have been somewhere for a bit of time, I start focusing on negatives and find it very difficult to move on from that type of thinking. Over the years I learned that making decisions based on this is not good to me and it’s much better to be logical and stay in a job because it is, in general, ok. However, what is really happening is, the fact that I force myself to be logical doesn’t mean the negative thinking will go away – no, it will stay with me and slowly eats me away, until one day I get sacked (oh, ok, that only happened once).

I don’t know what to do about that. It seemed I was getting ok with the fact that I need to have at least two jobs, that I can alternate, but now it seems to me like it’s a sign of failure, something that no one would understand, let alone support.

Gig economy is supposed to be bad for us, that’s what we are told, isn’t it? And yet, now, I need to put myself in a situation where I purposefully reject the idea of having permanent job, with all it’s benefits, to protect my mental health. Other people don’t need to do that and yet their mental health is good.

I really do not think that’s fair.

Yay!

As this blog is meant to describe me, as an autistic person, and I did post in the past about some of my difficult emotions I think it’s only fair to also post when I feel better. So basically, I feel incredibly excited since yesterday afternoon. I have no idea what I am excited about: my shop cleaning job finished two days ago and my DBS is still not back. I received a letter from mum’s bank and they’re not going to refund her any of the stolen money that we have no evidence for, so what she’s going to get is like 10 percent of what was stolen and the bank is having difficulties to even admit their employee was stealing – they don’t even use the word fraud but instead call it ‘this situation’. Fantastic.

Home Group did not even contact me regarding the email I sent two weeks ago – this is, I guess, them saying they don’t really care about what happened to me, as long as their business is intact. It’s really strange that all those big companies create procedures for similar situations, and then, as things happen, the employees never follow them because they don’t want to disturb the internal politics. Would someone working in a customer service department stand up against their CEO – as I already contacted him and he ignored me? As much as I understand that in hindsight, having procedures that state a different behaviour is expected is only clouding my, autistic, judgment – if there was no procedures at all I’d be much better at predicting other people behaviour, or at least that’s what I think. I wonder what Professor Simon Baron-Cohen would say about that.

Ok, moving on from Home Group – I decided to complain to University of Cambridge about Professor Simon Baron-Cohen and his extreme inability to communicate with me. As I stated in one of my previous posts, I felt at some point that it’s getting a bit better but then suddenly Professor sent me an email to say he feels sorry for me, which just totally didn’t make any sense. I do not feel sorry for myself at all. In general it is said that autistics tent to have misunderstandings with people, but I’d expect it will be a bit better when you talk to world famous autism researcher, and instead it’s much worse. Professor Simon Baron-Cohen has an incredible ability to misinterpret absolutely everything that I am saying, therefore what value his research has? I only contacted University of Cambridge yesterday afternoon (Friday) about it so it’s too early to say anything. As much as I am curious about what will happen, I doubt my excitement comes from that.

I managed to secure another temporary job, in a warehouse this time – in a food distribution centre, I will be starting a training on Monday (it’s Saturday today) and it will include… driving pallet truck! I wonder how I’ll get on with that. Please keep your fingers crossed for me. Is it possible that my excitement comes from that? Possibly my subconscious mind already knows that I’ll be ok there, will get noticed for my ability to follow procedures and understanding systems and will keep getting promotion after promotion until I get to the very top? Oh well, probably not, but I’m very curious about how I will cope. I never tried this kind of job before so it will be interesting to see how it will work out.

I was also thinking that possibly I should have two part time jobs instead of one. I used to do that in the past and I quite liked it: the transition from one job to the other helped me to release any tension; while being in one job only makes me feel trapped. I suppose there should be more understanding in the society for having two jobs – it seems like it’s often being seen as a sign of failure, inability to commit or possibly not being wanted anywhere full time. But the question is: do we need to commit? Obviously if you want to progress commitment is needed but plenty of us don’t want that, we just want to pay the bills and have some money left for fun things, so what is the commitment for?

It’s snowing at the moment, and it’s extremely windy. I’m unlikely to leave my flat today. I decided, however, I shouldn’t be spending all day in bed so I moved to the living room and I’m on the sofa… such fun! I don’t suppose I’m excited for that either. As I stay in I may do some updates on the blog: I decided symbols (as a form of communication) will get their own tag, as so Redecor. Redecor is a very important part of my life now, hard to understand how I coped without it, and I’ve only been playing for around 10 months. The more patterns I have available to use, the more fun it is, although again, I don’t suppose my excitement is caused by the game.

Did I mention I baked another lot of beetroot muffins? I used better quality beetroots this time and added some almond essence – they’re much better this time, no beetroot flavour, so this is, I think, the way to go with my baking. However, again, I don’t suppose that is what I’m excited about.

I also realised a little while ago how much better my mental health is now, when I don’t work in a care home any more. Possibly I should never go back to this kind of job? And not because I’m not a caring person. One thing that I found extremely difficult was the need to constantly switch between tasks: I could not do one thing for long enough before a different resident needed an urgent assistance. On top of that all that bitchiness you get there… God help me, seriously! And the problem is I tend to oversimplify everything where people are involved. I can think, for example, that everyone who works in a care home is caring so they will be nice people. And believe me, some staff really are not! And I don’t talk here about scandals like Winterbourne at all; the staff may be actually caring towards residents but bitchy towards themselves – not fun.

Ok, end of post. What am I excited about though? I still don’t know, but it’s a nice change at last.

Good quality sleep (contains app recommendation)

This post is meant to be informative so I will really try to refrain from mentioning my parsnip muffins (that are btw all eaten now) or any other healthy muffins, my childhood, my mum, my alcoholic brother (I’d really like if he stopped drinking, but somehow I can’t even imagine him being sober), Polish Christmas traditions, pierogi, SAD lamp or The Friend.

I’ll also try not to mention Home Group in this post, although it’s them that caused me my first, stress and insomnia inducted psychosis. So yes, good quality sleep is very important, but poor sleep is still better than no sleep at all, please remember it.

It is said that autistic people don’t sleep well and I certainly believed that as my problems with sleep were with me as long as I remember. My parents would make sure I’m in bed by 9pm but very often I was still awake at 1am, and that was when I was a child! It was also very difficult for me to nap during the day, although it would happen occasionally.

When I was put to do night shifts at work for a few weeks I could barely get any sleep during the day. I’d thought I’d get used to it but the second week was even worse than the first: in total I slept 14h during the entire week, I felt partly unconscious and had to go to GP for sleeping tablets.

After my second psychotic episode I started looking for ways to improve my sleep. Initially I found a program based on sleep restriction, which was available on the NHS but I wouldn’t be able to take it due to my mental illness history, which was a relief really as treating my inability to sleep with restricting sleep even further felt even worse than pulling teeth!

And then I found an app called Sleep School created by dr Guy Meadows, a sleep physiologist from London. The app is based on acceptance and commitment therapy and doesn’t requite any sleep restrictions, more over, dr Meadows advises to stay in bed and rest if you wake up in the middle of the night.

I reluctantly signed up and started doing all the exercises. It felt really weird at first, how observing what my senses are telling me was supposed to help me with insomnia? But somehow it worked. I started seeing first results after around two weeks: falling asleep was getting easier and easier and after a few months I was able to fall asleep within 3 minutes (down from 2-3h). I got slightly disappointed later when I found out dr Meadows stated falling asleep quicker that 15 minutes could mean we’re overtired.

When you’re in the dark the number of patterns shouldn’t be an issue

Mind you, I fall asleep without using the app now, just practicing techniques I learned from it, and after a while they got so automatic that I don’t even think about using them. One could say I retrained my brain.

I still had problems with falling back to sleep if I woke up around 2-3 hours before my alarm was due, so, again, following the knowledge from the app (even a little bit of light is damaging to our sleep) I decided to try eye mask and that reduced number of early morning awakenings, but didn’t fully eliminate them.

Mind you, I wasn’t even actively using the app any more and some of the courses were still not done. So I went back to it to find out what to do to fall back asleep and it turned out we have to try noticing body meditation again, which is exactly the same techniqueto get us to fall asleep in the first place. I tried it yesterday and it worked! I fell back to sleep at 4am, even though my alarm was set for 6.

Since adding eye mask to my sleep routine I consider good sleep to be 9h, no kidding, I slept 9h on number of nights, even though I wasn’t overtired. 5h is now poor sleep, while it was almost standard before using the app.

As I said the techniques provided by the app are a bit strange at first and I really didn’t see how they would improve my sleep but I was determined as I wanted to avoid another psychotic episode and being on meds to the end of my life. And, surprisingly, it worked!

Dr Meadows warns us that insomnia cannot be fully eliminated and therefore I wonder if I ever get to a point when I don’t need to use sleeping tablets even if I’m under severe stress. Possibly not, but still, I am suprised how well it works for me when I’m not under stress and how easy it is to switch back to the techniques learned when stress is eliminated. I’d really recommend everyone to use this app. It can be life changing.

What comes next

I really didn’t want to go to work today in the morning. I am sorry to say that but this is probably the most boring job I’ve ever had. Who said that autistic people want to do repetitive tasks over and over? I mean, ok, there is something calming in the fact that I know that when I go there again, hoovering will be the first thing to do and will take me one and half an hour, but… if I want to do things a bit differently, there’s no space for that.

When I was a housekeeper in a hotel (mind you, I did it for one day only), I felt there was something magical in the fact that I enter a room that a guest just left and I’m preparing it for another guest. It felt like for those couple of minutes (well, it was probably more like 3 quaters of an hour) I was part of their life. Well, ok, after a day of this work I had such a terrible back pain that could barely move, so no magic could make up for it, I’m just summing up the general experience.

Cleaning in a shop is mostly removing dust, and believe me, there’s loads of it. Dust can even settle on a vertical surface, did you know about that? I only found out a few days ago. So it is really boring, after a while. Well, I can probably say, that I am cleaning so that people can come over and buy some new, fancy clothes, but – this is probably what is a big problem here – I am a no logo girl. So, in my head, there’s no reason for people to come to this shop for clothes.

By being no logo girl I don’t mean we should all start buying all our clothes from Primark from now on (for those from outside of the UK: Primark is a chain selling extremely cheap clothes, sometimes badly made), I do understand that logo reflects quality a lot of times and that we need good quality clothing so that we could donate them to charity shops when we’re bored with them while lower quality clothing is going to end up in landfill much quicker, however, I still do not fully understand the purpose of brand.

I mean, I get the fact that business owners want to differentiate themselves from competitors, but still, the fact that they use brand to do that is something I don’t fully get. Brand is something totally made up, isn’t it? You can’t wear it, can you? So why people put so much attention to it, I don’t really know.

Another part of the problem is that I really don’t understand what this particular brand is actually selling. Grunge clothing on one hanger, a cardigan that my grandma would be proud to wear to church in the 80s on another… That doesn’t make any sense to me.

It is said, sometimes, that autistic people don’t understand fashion. Mind you, for some of us fashion is our special interest, but as you probably guessed correctly, I’m not one of those people. I’m one of those people who could argue that fashion doesn’t really exist or, at least, is overrated. I mean, ok, I just mentioned grandma style cardigan in an on trend clothing store, but possibly you know what I mean.

When I was 12 and I went to town with mum, I’d knew within 30 minutes what was in style: I saw 3 ladies wearing white buttoned, slightly transparent blouse over colorful, floral bra, so this must have been on trend. It was not on trend the next year or the year before. Now, when I am at work, I see a very nice satin top just by the entrance, and it’s almost identical to what I bought in M&S 3 years ago, just in a different colour. I’ve never seen anyone wearing anything similar on the street, so I find it difficult to believe those tops were ever on trend, although certainly they were in stock in more than one clothing shop.

So that is my understanding of fashion: trends are just unnecessary distraction, especially when there’s so many of them. I wonder if anyone has similar views, whether you’re autistic or not.

If it was up to me I’d created a universal clothing brand that companies could sign up to and the clothes created for that brand would have to meet strict quality criteria. Then people would now that what they’re buying is not going to fall apart after wearing twice, won’t shrink in a wash, won’t shred and even, possibly, was made of recycled plastic bottles, yet it’s fully breathable.

I made parsnip muffins today and they’re ok, although have strange parsnip aftertaste and I really don’t know where this is coming from, any ideas?

Tomorrow I’ll be having a day off, possibly my last one, as my last day of cleaning job will be Thursday. So from Friday I won’t have any more days off, I’ll have days of full time unemployment. You could argue those are pretty much the same thing, I will insist they really are not!

I had this idea a while ago to go to a cafe one day and ‘work’ from there. I mean, write a post while having a coffee and a slice of cake on a commercial premises, which I think I already done once while in Poland (and the cake was not great). Obviously blogging is not my job as no one pays me for it, I suppose it’s more like a hobby, a way of creative self expression, where I imagine that what I really have to say is finally being taken into consideration by people who read me (normally I’m being ignored when I try to be myself and no one ever understands my jokes). Writing from a cafe could be a way of making the moments with my blog even more special and also would give me the opportunity to photograph the cake I’m eating, I will think later on if that’s worth splashing out as it could be my two days food budget or even, possibly three. Also, another problem that I could encounter could be that the cafe will be too noisy for me to focus enough to write anything sensible (Polish cafes are usually much less busy) but I’ll definitely think about it again before Christmas.

My DBS (criminal record check needed for a job in care) is still not back. I’m wondering, what I will be posting about when I work as a live in carer. Posting about clients is not permitted of course and I’d never do that. I suppose, at a push I could disclose whether I work for a lady, a man or possibly a couple, but then that would make all the boundaries blurry for me so it will be better to stick to only disclosing which town I am based in, or even only a general area in case I’m sent to a village. I’ll see if I’m creative enough to come up with anything new to post at this time, as most interesting stuff from my past has already been discussed here. Oh wait, I forgot about one exciting thing: how I got sectioned in December 2019 (feels so strange to think that’s only two years ago) and dragged out of my flat in handcuffs by police (I always count that towards ‘been arrested’ on all of those Facebook games) while my deputy manager was a witness!

I will definitely come back to it one day, I promise, but for now I’ll just try not to eat another parsnip muffin.

Feeling pressured and ways to relax

Good few weeks ago I was referred to an employment support service by my psychiatric nurse and I now feel pressured by my consultant. I did tell her I would want to change career and now I feel like she wants that more than me. I don’t know, possibly she’s trying to be energetic to make me feel confident but it really doesn’t work. It feels to me like I’m not allowed any second thoughts or doubts. I did like her decisiveness to begin with, now it feels like it’s getting in the way of me communicating my real thoughts and feelings.

I don’t know how to tell her that without sounding rude and ungrateful, so I will possibly not say anything, but it comes to my mind from time to time that this service is there for me to benefit from, not for her to demonstrate how effective she is in placing me in a job that I won’t like but once thought I could enjoy.

Today is probably a first day that I actually miss my old job, this one that I got sacked from. I did like most of it’s aspects – I say it even though I realised I needed a change. I even started missing some of the workplace politics and ever changing team dynamics. In my current job I manage to avoid all of that, which is very easy as I’m ‘just a cleaner’ so there is no need or even an opportunity for me to participate in any team work, plus it’s only temporary agency placement. However, after being there for a week I realised I still don’t even know who the manager is, so this is probably as far from workplace politics as one can get and I decided I don’t particularly like that either.

My DBS (criminal record check needed for work in care) is still not back and this is the longest I’ve ever waited, I think. Me and The Boyfriend decided that if I get live in care job placement for Christmas, I’ll take it. He’s concerned about the fact that I need to earn money, I’m more focused on the fact that I wouldn’t even enjoy Christmas after having so much time off already. Therefore we will be eating various Christmas food over the next few weeks when we meet, so that we don’t feel like we’re missing on anything.

Despite having said that my SAD therapy lamp is working and giving me energy, I had to have a nap in the afternoon today. Also, I haven’t been to the gym since I started my cleaning job, but I may go tomorrow.

I came back to my habit of baking ‘healthy muffins’, recently I baked chocolate beetroot muffins and they had such a lovely texture and were very moist, better than any regular cake I ever tried, however they really smelled like beetroot! Today, two days after I baked them most of that smell disappeared and they are lovely, so I had two of them (not at the same time) with some sweetened apple sauce on the side. Next time I’m going to try zucchini muffins, hopefully they will be as moist but without any strange smell.

I use mixture of gluten free flours in my baking, but not due to any health reasons but because, apparently, gluten is what makes cakes go stale quickly and I don’t want to have the feeling that ‘I need to eat those muffins’ and indeed, they keep very well in the fridge and are always soft after I warm them up gently in the microwave.

The above reminds me, I was meant to write a post about how I’m managing my eating habits, but this needs to wait till when I get an urge to write about that, and possibly, after I loose another tiny bit of weight (yes, I lost some already).

It feels quite cold out there every time I’m outside, but yet, I’m managing without heating most of the time, which is not like me. I am oversensitive to cold and I was told it’s due to being autistic, but I didn’t really have this problem till my early 20s, so possibly it’s something to do with hormones or maybe stress levels. It would be nice not to feel cold that much any more, however, I would then be tempted to wear short sleeves much more often in summer and my scars on my lower left arm will be easily visible. They are from a couple of episodes of self-harming that I had when I was younger. I used to wear silicone patches that really helped to flaten the scars and I have a tattoo, but the tattoo artist didn’t do very good job and some of the scars are still visible, which will obviously only make people think the tattoo is covering the rest of them. With all the talk about mental health awareness, and even me writing about it here, I don’t feel like I’m ready for people to see my scars and have an opinion on them, an opinion that they will obviously not share with me.

After having a good few days away from Redecor, when I only did challenges that I found particularly interesting, I’m back on it and I did a couple of unusual designs again. This app is such a good creative outlet for me that I stopped doing other arts and crafts projects. Which is probably for the best as, with my bad executive functioning, I used to end up with loads of mess. Once I even damaged my bath enamel with some art experiments (I was trying to remove some paint layers from canvas and thought I’d do it in the bath to avoid mess everywhere else. How the enamel got damaged in the process, I don’t really know). I may try looking for other ways to create digital images out of patterns when I’ve got time.

Things change all the time

It’s been good couple of days since I last posted. It’s not like me to take a few days off from blogging, but then, I am a beginner blogger and my habits may change, especially after I state everything about my life history (you know, all the Home Group stuff and such) but this time the reason for not posting was that I sensed change coming in my circumstances and I didn’t want to bore my very few readers with every little details while at the same time agonising over what is and what is not appropriate to be discussed on a public blog and what consequences it can bring if I decide to include something.

I guess the biggest change is that I managed to finally find some common ground with Professor Simon Baron-Cohen. It does look like what happened before between the two of us, that I moaned about in here at least twice, was a miscommunication. It’s not good, obviously, when an autism researcher is unable to communicate with an autistic individual, but the truth is, he’s not the only one who has difficulties with that and if he wasn’t famous, I wouldn’t blame him for that at all.

So finally, after we both managed to see the other person’s perspective, we agreed to move on and leave things where they are.

The other thing is that last week I spoke with the lady who was my advocate a while ago. I initially asked her to speak with Home Group on my behalf but at the end I realised I’m better off to do that myself. If she reached out to them, she’d probably get better results, but then I’d end up agonising over the fact that Home Group only tries to be nice to me because my advocate works for a an organisation and they’re worried about their image only and not my wellbeing. So, last week I emailed Home Group on their general email address. I briefly described the situation, I stated that I post about it on my blog and that every time I do, I send an email to their CEO, but never got any reply. I asked if they have any comments regarding that.

It’s only been a few days and technically they could still reply but so far they didn’t. It’s a good exercise on trying to predict neurotypical people behaviour I suppose. What I would do if it was me who was working there and read similar email? I’d pass it on to my manager, that’s for sure. And then, what the manager would do? This is what I am not getting because on one hand they have all those procedures that state how to behave in similar situations, on the other, they would have to challenge their CEO, and what for, if I’m just a beginner blogger.

I guess we can safely assume there will be no response to that email, even if I email the link to this post to the CEO again. But then, that makes me wonder, what does he really think? Is he actually reading my posts? I find it impossible to work that out from my statistics.

If he reads them, does that mean he’s worried? Did he ever discuss the situation with anybody or he pretends it’s not really important? I find it so absolutely impossible to understand what neurotypicals really think in similar situations, especially that they have loads of procedures for everything but then, they hardly ever follow them, so the procedures only make it more confusing for me.

Ok, moving on from Home Group drama to ordinary life: I started using SAD therapy lamp within the last couple of days (SAD it a type of seasonal depression caused by lack of sunlight). I don’t think I have SAD but my energy levels are extremely low in between November to March. At times I can spend the entire day in bed, doing absolutely nothing and I’m not even bored. I started thinking lately that it maybe due to lack of light, especially that I find artificial light irritating and try to avoid it as much as possible. I have a couple of salt lamps at home and so far I mostly used those if I needed light on, but yes, they’re not very bright.

Apparently spending time in the dark is what causes the body to produce melatonin, that as a result makes us groggy. Why no one told me that before?! I thought spending time in the dark causes us to relax and when we had enough rest the enery will come back naturally!

So last week I bought that lamp online and I’d say it works. It is hard to say 100 percent how big the improvement is as on the weekend I had two jabs: flu and covid busters, and I felt quite unwell the next day, including having a fever, now I seem to have my monthly migraine, but yet I do get to do things without the feeling I have to force myself to get them done, my kitchen is tidy, washing up is done and I even started doing deep cleaning, so fingers crossed things will stay like that.

Apart from that, I also spoke with my mum’s care home manager and she wasn’t scary at all. Possibly ‘act normal’ is really best advice that can be given at some situations.

I also work as a cleaner in a popular clothes retailer, it’s only a temporary contract for just over two weeks, 3h a day, 5 times a week. Half of that time it takes me to hoover. It is slightly demanding physically, but then 3h a day is not much and I enjoy the fact that I don’t need to talk to anyone. I mean, I obviously answer questions if customer approaches me, but apart from that I just clean. I must admit I am slightly frightened of all those shop staff. They seem like a different species to me as they must obviously be interested in fashion.

My DBS (criminal record checks) is not back yet and I sometimes wonder whether I’d be able to start a job before Christmas. I’m ok for money for now but would not want to dive into my savings just to buy food, that feels pretty depressing. Regarding buying food though, I seem to find the reason why I used to eat so much and it’s something really surprising. However, I’ll leave this for the next post.

I cancelled my shift

Around 2am it finally occurred to me that I won’t be able to continue as a hotel housekeeper, at least not in this hotel and not for so many hours. Especially after not having slept properly. So I emailed the guy from the agency to let him know that I won’t be back but I presume the agency opens at 9am and my shift is supposed to start at 8.30 and I haven’t been given any emergency number to call.

I always had problems with cancelling shifts/calling in sick. It always felt to me that I’m putting the workplace under enormous strain so I’d only do that when I felt like I really can’t cope, if I felt like I am somehow managing I always choose to turn up, which was not necessarily appreciated by others the way I thought it would be. I mean I earned myself an image of someone who’s always ready to work and I was often called in on the last moment, when someone else cancelled and if it happened to me that I had to refuse, some colleagues would get funny with me.

During the night I started having the same chest pain that I always get when I overexert myself. I first started having it when I was a teenager and had to work really hard on my parents farm. The farm wasn’t very big and most days we didn’t have much to do at all but when the time came we had to work several hours a day for 3-4 days in a row. So that’s how my chest pain first started. Then it was that bike ride to Łódź that I took in my early 20s, merely 70km one way. Then, later, in my early 30s I was told by my trainer at the gym that it’s best to do exercises without any breaks as they’re more effective and the same thing happened. The pain is specifically on the left side and only appears the next day, it may take 2-3 days for it to go away. I never had it checked up and from what I can read online about chest pain after overexertion, what I feel is not similar to anything else.

The pain is also accompanied by feeling of rather strong depressive thoughts that are now all about my inability to keep a job. Quite frankly, I feel, I’d be much better off never accepting this booking as I now have the impression that I am incapable of any work at all.

I wonder if the heart issue can be due to dyspraxia. People with dyspraxia have problems with their coordination but they also have weaker muscles and heart is a muscle. Possibly I should go to doctor but, like with most things, I bet they’d do some tests and all of them would come back fine. Maybe the tests should be done when I actually experience the pain, but I’d rather avoid causing it.

So I can’t do jobs that are socially demanding and also those that are physically demanding. What I’m supposed to do then?

The fact that I actually have first class bachelor degree in computer science feels very heavy now. I didn’t work in IT since I left Poland, which was 2007 but quite frankly I wouldn’t be able to do it either. The constant changes are something that I wouldn’t be able to keep up with. When I was choosing subject to study I didn’t know I’m autistic, but quite frankly even if I knew it wouldn’t change anything as there is such a low awarness of what having autism is actually like. Loads of people, including career coaches, believe that working in IT is a perfect job for an autistic person, and for some it certainly is. But I, personally, couldn’t keep up with the constant changes: you learn something one day and 3 months later it’s already considered out of date. I didn’t know I’d find it so difficult, I learn very quickly so it shouldn’t be a problem to learn new thing every couple of weeks. I guess it wasn’t even that, it was the fact that I was required to reject the knowledge I already had. That was something that I could not do.

Being off work – a little sum up

From what I remember, the last time I was actually at work was around the end of April, so it’s approximately 6 months now. Therefore I’d like to sum up this time here, not from the perspective of someone who can’t find a job (I did only start looking recently and received some job offers immediately) or someone who can’t pay the bills or put food on the table (most of my bills are paid by direct debit so that’s not an effort at all and I usually eat on the sofa) but from the perspective of an autistic person who managed to take time off and reflect on herself.

Initially, after I was suspended, but still employed, I took a bit of time to just rest. The year before I was suspended was a difficult one: in December 2019 I was sectioned while having a psychotic episode (a second one) and I spent a month in the hospital and then a few more weeks at home, first off sick, then working part time as a phased return. At the beginning of March 2020 I went to Poland to spend time with my family and that’s when Polish government introduced lockdown. It was all very stressful, while it was meant as a holiday before going back to work full time.

I managed to come back to the UK on one of the rescue flights a few days before I was initially planning to as staying there I was worried too much. I remember than when I was packing I got obsessed with taking all my belongings with me, like some acrylic paint that I was using to do art after recovering from my first psychosis, pijamas that was always there waiting for me to come over, some books I used to read in secondary school or even some not very elegant underwear. I ended up going back with two suitcases, not just one. I remember having that thought while packing that I’d never go back there… and that kind of turned out to be true. I went back there but things were never the same any more.

I came back to the UK, went to work, did like two or 3 shifts and my dad suddenly died. And I couldn’t go to the funeral.

I didn’t have good relationship with my dad at all but I was always telling myself that it’s due to his mental health problems and I really needed to see him that last time to say that I understand and forgive him and love him anyway and that was taken away from me, the same like his entire life.

In the meantime the UK introduced lockdown and all the services that I was intending to use to feel better, that finally were being available to me due to having history of two psychotic episodes (they were not available when I was just autistic) were starting to operate online instead of face to face and it didn’t agree with me. I also was unable to see The Boyfriend for several weeks.

In May I found out mum was taken to the hospital and from there to the care home, without asking her if that’s what she wanted or me what I thought about that. The care home staff was terrible and she was complaining of suicidal thoughts so when government in Poland suspended quarantine for people coming from abroad I went back and took mum out. I then quickly found out that there’s loads of money missing from her bank account. That was in the middle of August 2020.

Then mum and me decided she can’t stay in Poland so she’d come with me. My brother was drinking more severely than before and mum would be at risk of being hurt if she stayed there.

So at the beginning of September mum came with me and almost immediately wanted to go back. She would come into my bedroom on loads of mornings when I was meant to go to work to talk about how she’s worried about my brother and then I had to really rush in order not to be late. While my brother would call us and scream at her. Ten minutes after the phone call finished she’d say that she had a feeling that he changed. She was trying to control my spending and comment on clothes I was wearing and how I arranged my flat.

At the same time her bank completely ignored our complaints. At some point they actually changed the subject of complaint from ‘missing money’ into ‘poor customer service’. It wasn’t until I got the police involved that we finally felt someone is listening. Still, things were taking loads of time and we were asked to go there to give witness statement and, pandemic aside, when I was seeing how bank ignored us and our evidence for months, I started thinking that they’re all part of organised crime and when we go there, they’ll find us, kidnap and kill us to keep us quiet forever. It was reminding me the situation with Home Group – that was exactly subject of my delusions during my first psychotic episode (although it’s quite obvious that Home Group would like to keep me quiet, isn’t that right Mr Henderson?) and I started getting somehow paranoid.

Around the same time pharmacy (or maybe it was meds prescription service?) messed up my meds two months in a row so I’d decide to get off them as it was too stressful worrying if I’m going to get them on time…

I was off sick for three weeks around the time, certainly not enough, but then I had mum around the house moaning the entire time (well, I can’t really blame her for being stressed, it’s just that I didn’t know how to deal with that any more) so I just ended up going back to work. And that’s what happened… I ended up suspended and then fired. I’d never expected that’s what would happen to me, but it did.

So, first of all, I took some time to just do nothing and recuperate. Then, I wrote My Story. I’m glad I was off work when I did it as it needed a lot of focus to decide what details need to go into it, what needs to be left out. It took me two weeks to write it. If I was working at the same time I’d need probably like 6 months for that as my thinking process would be affected if I wouldn’t be able to fully focus on it.

Then I had this idea to start a website. At first it was meant to be very informative one and my personal experiences were meant to be left out. I wanted the website to be the a start of my own business – one where I’d be giving speeches to companies about my experience of employment with Home Group (at the time I still called them The Company) and it was meant to draw attention to workplace discrimination in relation to autism.

If you only just started reading now, I was employed by Home Group, harrased by a colleague, asked GP for autism diagnosis referral (that I earlier thought won’t be needed), got prioritised by the diagnostic centre due to my work situation but the diagnosis didn’t stop the harassment so I handed in my notice and took Home Group to employment tribunal where they claimed my diagnosis was private and they organised it through AXA occupational health! Seriously! That’s how bad workplace harassment can be if you’re on the spectrum.

So, as I was thinking, that was very important story for people to hear but knew that Home Group would likely try to stop me if I try to talk about it just like that so I was spending loads of time planning what to do about that. I was even trying to arrange for a legal advice but at the end decided not to proceed with it. Legal advice felt like I was going for a fight and that wasn’t my intention at all. My intention was to raise awareness.

So anyway, as I was thinking how to secure my right to talking openly about what happened to me in Home Group I realised I missed an important factor: if I approach businesses with my story, they may possibly want to pay for me to talk to their staff, at least initially, and I may be able to get my business going for a while but the end result won’t be what I was aiming for, it won’t be better understanding and inclusion for an autistic staff.

The end result will be that people in charge get that message accross: if you have an autistic employee taking you to employment tribunal you’d better check all the paper work five times!

That wasn’t what I was aiming for. What I was aiming for was understanding and inclusion and therefore possibly from this place in this post I should express that I’m ready to forgive (well, at least I’m trying) and that Mr Henderson can contact me through my psychiatric nurse (he was given her contact details once) if he wants to apologise.

However, I need to make it clear here, this is not something I can keep quiet about. As I already stated million times my aim is to raise the awareness. Being quiet won’t achieve that.

Talking about difficult experiences

So today I had my second day of an online training for live in carer. When we were about to discuss dementia I decided to share my recent experience with mum: I said how I had to finally accept that she has dementia after her state deteriorated rapidly but just a few months ago her memory seemed to be perfectly fine. She would go to the shop without a shopping list and bought exactly what she needed, she remembered (and still does) what bills need to be paid and when for her house and if I agreed with her we will be doing a certain thing in a couple of days she’d remember it. She had problems with more sophisticated thinking but then, as she always was somehow disorganised and absentminded, I thought it’s just her plus normal aging.

And yet, when I was visiting her in the care home recently, where she had to be placed after a serious fall, I realised she at times talks nonsense. It was very difficult to accept the fact, that yes, that must be dementia.

And then the trainer thanked me and said it must have been difficult for me to share that and I felt rather invalidated (again – being invalidated is not an unusual experience for an autistic person).

No, talking about that was not difficult. If it was I wouldn’t even start. Experiencing it was difficult, but talking about it was easy and I was really eager to raise awareness of the fact that yes, it is possible to have dementia even if one’s memory seems to be unaffected.

The trainer’s comment was meant to make me feel better but instead made me feel worse. I felt like I should be experiencing the situation in a different way, like the fact that I didn’t find talking about it difficult meant that I don’t care about my mum.

Similar situations happened to me so many times before: people trying to sympathise with emotions that I don’t experience make me feel really bad about myself.

I would prefer the world to look like that.

At other times people ignore emotions that I do experience and that is equally bad. I’ll make sure to post about that too when it happens.

As the training progressed I found out that in fact there is a type of dementia where memory problems are not the first sign, frontotemporal dementia, that usually affects younger people but can happen in elderly as well. Pointing this out by the trainer would be a reaction much more appropriate for how I felt, but then, again, there wasn’t any point in saying that. I just had to carry on with my feeling of being made wrong by the trainer’s good intentions.

I’m wondering now whether I in fact never heard about all those types of dementia? I was working in learning disability sector of care, not elderly but we had trainings about all aspects of care so possibly it was mentioned at some point but I forgot about it. As ironic as it may seem: forgetting about dementia.

Overall, realising that your loved one is affected by this illness is difficult. But then it would be difficult for any illness, but possibly in a different way.

I was talking to The Friend yesterday that now, when I’m back in the UK and I’m on my way to being employed again I’m glad that I moved mum to the private care home. That it has to be paid for? Oh well, people pay for care all over the world but at least mum has some more space to move around in her wheelchair, instead of spending entire days in bed, like in the government care home.

That brings me to this question: should we trust our feelings?

As I was organising mum’s care home transfer I was getting extremely stressed and worried, focusing a lot on the fact that one day her savings are going to run out and what I’m going to do then. On the day when the transfer was meant to happen I woke up with a strong urge to cancel everything and tell the nurse in the government care home that mum would have to stay there. The only reason that I didn’t do it was because I hate disturbing other people order of things. Avoiding that was far more important than listening to my feelings.

But now, when I’m back, I’m really glad I moved her. It’s her money after all that pay for that and I’d feel bad if I inherited it while knowing that I didn’t give her the best quality of life that she can have, considering the circumstances.

But yet, I can think of at least one situation when my feelings were warning me: when I was just about to start my empowerment with Home Group I was getting extremely worried and having the feeling like I wanted to escape the entire thing. At one time I had an anxiety attack on the bus only because a lady sitting next to me was using strong perfume and I was by the window so I couldn’t change seats. That was my first anxiety attact in my entire life.

But then, I explained to myself, that’s possibly because I just realised I’m autistic (I used to call it Asperger’s at the time) and it was absolutely life changing: it meant I’d never learn to fit in, no matter all the effor I make and, at the time, my entire life seemed to evolve around that: how to learn to fit in. It was 24/7 project of mine. I was hoping that with some effor I’d finally manage to fix myself.

So possibly my panicking was in fact caused by the realisation that I’m autistic and not by instinctive anticipation of what was meant to happen in Home Group a bit later.

Disclaimer: links to all the posts mentioning Home Group are sent to it’s CEO, Mark Henderson. He never replies.

Some are also send to prof Simon Baron-Cohen to ask him what to do so that similar situations never happen to autistics people again. He doesn’t reply either.

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