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.

That’s not too many patterns

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.

Even less patterns

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.

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.

Rather plain reality

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.

A little bit of optimism.

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.

How I look for a job

So I see a job advert, let’s call it job A, I quite like it and apply for it. Then I see job B adverised, it still sounds ok but I would prefer job A. I feel like I should not apply for it till after I find out I wasn’t successful for job A. It seems to me like by applying for another job I create problem because what if job B is offered to me and I accept it, then I will also turn out to be successful with job A after a couple of days? I have to reject a job that I already accepted or reject the job that I wanted more.

I can’t reject a job that I already accepted because that will create a mess for the employer! Seriously, who said that autistics don’t see things from other people perspective? This is literally all I am focused on, constantly worrying about the companies that I applied to work for.

Normally, when I look for work I don’t apply for more than 3 jobs. I first assess where I’m most likely to get hired and then only apply to those places. Obviously that makes it very difficult to move on, if that’s what I want. Sometimes I only apply for one job. I really can’t help but see applying for multiple positions as creating a mess not only for prospective employers but for the system I am part of (we, autistics, love being part of a system).

I’m not quite sure what the system is in this instance, I bet my instinct imagines that all the jobs I applied for are controlled by an external server that is going to crush if it has too much data to process.

Also I already applied for 4 jobs today, which is more that I would normally apply for during a work search, and I’m going to apply for 2 more during the afternoon.

Not sure what I’m going to do later on as I’m supposed to spend 35h a week on work related activities and it really seems like there’s not enough jobs to keep applying, unless of course recruiters start contacting me and asking to fill in detailed application forms – that can take a while, and then prepsring for interviews and commuting also takes time.

Otherwise I’m absolutely petrified that I’ll find no job whatsoever to the end of my life. I’m not sure what to do about that.

Another day…

Trigger warning: mentions self harm but also talks about nice weather and speaking up.

It was another warm and sunny day so I made an effort to spend couple of hours outdoors. It still surprises me how the town changed over the years, since I was in secondary school. We didn’t have McDonald’s at the time and the only shopping centre was an outdoor market, which still operates now, it’s just not as busy as it used to be.

McDonald’s was opened when I was in my mid 20s and I was convinced it will go bankrupt within a few months. There was high unemployment rate in the area (like 24 percent or such) and salaries were low. Also the prices of McDonald’s food is not really adjusted to our salaries and prices of other food items and it ends up being an expensive place. Like for example I pay 13PLN for main course and a drink in my ‘home dinners’ place, Chinese restaurant in the town centre would be around 18 and McDonald’s would be 26.

Yet, my prediction was totally wrong and the place can get so busy at times that it’s difficult to find a table to sit down. I’m not into McDonald food but I appreciated the place for the fact that if I missed an evening bus home when I was studying part time in Łódź, I could go there to have a cup of tea and wait for the next one instead of getting cold and angry outside and planning how to self harm when I finally get home, if you remember that story.

So having McDonald’s in town is a very good thing. If it was opened two years earlier possibly I’d not have scars on my left lower arm.

Well yes, so how did I get in here, from a nice, warm day to talking about self harm? I don’t do that now and hopefully I never will. I seemed to notice very quickly that it doesn’t bring any solutions with it. But I don’t know what does. Very often it seems like there isn’t anything I can do. I know I can’t change the things I’d really like to change (like my brother’s drinking) and with the rest I am just plodding along while having no idea how to change anything at all.

Tomaszów, the park I was in today

I’d really wish it will be different this time. A few days ago I posted my representations regarding putting me on barred list. I don’t know if I was asked to do that as have no access to my post (The Boyfriend doesn’t seem confident reading it) so I thought I’d better explain why I did what I did, just in case.

I posted some days ago I don’t want to work in care any more but after carefully considering my real feelings I realised that what I really don’t want to is to work somewhere where I’m being silenced and can’t be myself and I only assumed that’s what my experience would be if I get another job in care: people assume things about me, that I love doing extra tasks when others are socialising, that I have no feelings and it’s ok to laugh at me because I don’t mind.

However, in an attempt to be fair to my ex employer I must say that while they didn’t try to listen to me, I didn’t make any effort to speak up. I suppose it was too complex, I’m much better at writing that at expressing myself face to face so hopefully this blog will bridge that gap.

Feeling joy again

Redecor

I suppose there are some advantages to being unemployed, like for example I can post several times a day, including about things from the past. I do wonder sometimes if I possibly post ‘too much’ but I guess no one can decide about that, but me. Also, as much as it would be cool to be able to influence the world with my blog, I pretty much assume this is not going to happen and I just blog for my own entertainment and to continue to have the feeling that the glass jar that I was covered with has been finally lifted. Therefore if I need to post 10 times a day to keep this feeling, that’s what I will do.

If this is your first time reading my blog, please be advised that I often blog about being autistic (everything goes in here really, even what I have for breakfast), my two psychotic episodes, my family and my emotions. I often add images from Redecor to my posts, Redecor is an online interia design game that I especially appreciate for the fact that it allows me mixing various patterns.

Would you like this kitchen? Me neither! But I think it’s cool to look at it for a little while. I created it on Redecor just a few days ago. I haven’t been playing recently as much as I used to, especially when I just came to Poland and stayed with my brother initially. Seeing him drunk and neglecting the house had a massive negative impact on me. I didn’t feel like I was deserving of playing. Silly thought really, why would I not be deserving of anything because of his problems, but that was exactly how I felt.

I am in a much better place today. Mum likes her care home, I sleep well, my anxiety is greatly reduced and I believe that when I’m back in the UK I’ll find a job and all will be well. I mean my nose will still be too big but that’s not a horrible problem, is it?

Self harm (I used to do that)

So… this is not something that I normally talk about. It was always taboo, but my left arm is covered in scars. It’s normally easy to cover it as I am oversensitive to cold but on a really hot day wearing long sleeves becomes a problem even for me.

Yes, I used to self harm on a couple of occasions when I was in my early 20s. First time I tried it it was when I was bullied by my roommate in a student dorm during my first year of university, in Łódź. It was only a couple of scars at the inside of my wrist, nobody would probably noticed anything.

The second time it was when I was studying part time at a private university, after being suspended from the government one. The unemployment in the area where my family lived was 24 percent at the time so no wonder I couldn’t find a job. My dad was going through a maniac phrase of his bipolar at the time and giving everyone troubles. It was winter. I was coming back on the bus from Łódź and missed my connection to Smardzewice. I had to wait at the bus stop for over an hour and there was nowhere to go. There was no cafe close by and no shopping centre at all at the time. So I got really cold and stressed.

Redecor

Just a few days earlier I saw an article in a magazine about a girl who used to cut her skin to relieve stress. So I thought let me try that too, and it helped. I did it on a couple of more occasions, sometimes while having evening bath. I do not recommend it, however stressed you are.

I stopped quite quickly but got several scars by the time. I tried to remove them later on but only burned my skin. A few years later I tried silicone scar patches and they flattened my scars a lot but didn’t make them invisible.

I tried tattoo but didn’t look for an artist who specialises in hiding scars so again, they’re still visible.

And sometimes I do think: Yes, I self harmed, do you have any problem with that? But I’m not brave enough to do that, so let me write about it instead.

Early morning, Saturday

Mum asked me to get her mobile fixed for her and I did but I’m not sure now it was a good idea. My brother will be calling her and demanding money and getting things organised. But then, what I was supposed to say? She’s an adult, adults have mobiles.

A couple of days ago mum told me to go to the neighbour, this one who’s just building a house, and ask him to fix our roof, stay there as he’s doing that and pay him. I said no. Why do I have to do that for my brother when I have other things to organise and he’s not even bothered? Oh, maybe he is bothered, enough to bully us to do things for him, but not enough to do them himself.

The Boyfriend is praising me for getting things organised and I think, yes, I did do a lot. The most important thing is that mum has quality care.

Redecor

It’s early morning and I feel a bit low. I had enough sleep as I also managed two naps yesterday. It’s been the 4th night when I didn’t wake up with anxiety so I guess I should be ok but I want to be back at home, in my flat in Swindon.

I’m wondering for a bit how is that lady who came here to have a rest. I hope she managed to sleep ok. I also realised that I used to have that colleague who left the job without having anything else organised and she later found employment in M&S cafe. So it’s not impossible to find a job that is not in care, even if one was working in care for a bit. I don’t think I’d like to work in a cafe though, too social. Hopefully I’ll find something else.

Maybe I’m too harsh for myself?

Possibly. I’ve been through a lot lately and it has only been 3 nights since I stopped waking up with that terrible anxiety in the middle of the night. I guess I should be allowed a bit of a downtime. I’ll deliver mum’s suitcase tomorrow and write the letter regarding the fraud on Monday.

I spent a bit of time online researching other jobs I could do. I’d really like to try working in a supermarket and see how I would like that. I know it can get a bit noisy and I’m oversensitive to noise but maybe I could manage. I never really gave myself opportunity to try different work places and possibly that’s part of my problem with constantly being dissatisfied. But I guess work that is less social could really help.

Universal credit

It’s been 28 days today since I left the UK and my universal credit payments has been stopped. It feels sad and unfair as, if I had to leave to another town in the UK to do the same that I do here I would be ok.

I don’t think I’m even sad for the money, I know that at the end I will be ok. I’m more sad about the fact that once again my story haven’t been heard, that my personal circumstances haven’t been taken into consideration.

If I didn’t lose my ID card I’d need to go back home today and I’m nowhere near ready. I didn’t spend enough time with mum, I didn’t make sure she’s alright in her new place and it’s only been 2 nights since I stopped waking up full of anxiety. I’m not ready to go back and I feel like my feelings and my personal circumstances are not valid for the system that I am part of.

Tomaszów

If my ID comes back next Wednesday, I should be able to leave a few days later.

I’m in a park now, the same one where I took photos of outdoor art. It’s really nice in here.

In moments like this I wish I could stay here forever. I wish I didn’t have to leave in the first place.

My future job

When I was reading online about how one may end up on safeguarding barred list (being on one would prevent me from ever getting job in care) I found two conflicting sources of information: one stated that I have to provide my interpretation of events or I’ll be put on it, the other that I only need to provide my interpretation of events if I’m asked to do that.

And then I left the country. I don’t know what’s happening with that. Possibly the letter is already at my address and I just didn’t see it. Possibly I want the destiny to decide for me. Possibly I want to get support to find a different job but have no option to do that, no one would understand why I could work in care for like 13 years and now suddenly I can’t.

I wouldn’t know what to write in my side of the story anyway. ‘I did what I did because I was under enormous stress. I shouldn’t probably be at work but then the main source of stress was my mum who then lived with me so I didn’t want to call in sick. I’m autistic and that’s how I think.’ That doesn’t sound too good, does it? It sounds like, if circumstances are not right, I can make a mistake because I’m autistic. But then, does that not apply to everyone of us?

Redecor

Being on safeguarding DBS list feels so final and also stigmatising but also I don’t want to fight the destiny. Possibly change is what I need?

At the same time I wanted to say in here that I liked the aspects of care in my care job. I liked my one to one time with residents, I liked cooking for them and giving medications. It was my colleagues that I found difficult to deal with: constant chit chat, bringing family problems to work, the fact that everyone applied rules in a different way. It all made me so tired and on the edge.

It feels like it’s not ok that I have to give up this kind of job for that reason. It seems like it should be them who need to adjust not me, but even though I’m autistic, I know it’s not possible: we can’t request people to stop using their own personality. But then actually why, that’s what is requested from me on a permanent basis.

So… I just need to find a job now and everything will be well.

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