Autism dealing with dementia

All my posts of late have been very crisis driven and this one is no different.

I’m just waking up after a day of extreme meltdowns and a 15 hour sleep to get over it.

Basically my mother is now in hospital and has dementia which has got a lot worse. the problem is, we have never got on and she has never understood (or believed in autism)

The worse she gets I go through two choices. Not mask as much and she gets very angry. Or mask and I go home and spend a couple of hours having an extreme meltdown. Then around 3 days to recover.

Now she’s in hospital in a ward with other confused people and complete chaos. I’m in a seriously stressful situation that is very quickly going make me Ill. At the time of writing this. I don’t even know how I’m going to visit again after yesterday.

Let me give you some examples.

Dressing gown

The first day I visited I made a list of things she wanted from home (I can offer practical help. Not so much emotional)

One instruction was a dressing gown hanging on the back of a door.

So before yesterdays visit I went to her house. looked on the back of a door. Found the dressing gown and took it in.

When we got there I said I have a dressing gown for you. She then said she had one already. ‘Yes it’s in there. I bought one in myself’

‘Oh ok. You said you wanted one’

‘No I’ve got one’

‘I will take this one back then’

‘No I need a dressing gown’

‘But you have one already’

‘No I don’t’

‘You said you already had one in this cupboard’

‘No I didn’t’

‘Ok, we’ll. here is you dressing gown then’

This left me completely lost. I’m fact based and every single fact is changing all the time. Nothing she says can be taken as truth. It’s exhausting and chaotic. Later I asked if the dressing gown was ok ‘clawing for something to say’

‘No I hate this dressing gown. It’s the wrong one’

Her demeanour changed. I had done something wrong.

‘But this was the one on the back of the door’

‘I didn’t want that one. I wanted the one in the cupboard’

Starting to veer into a shut down now ‘but you said the one on the door’

‘I hate this dressing gown. It’s wrong’

‘But it’s lovey and soft?’

‘Someone bought it for me who I hate. I don’t like them and I don’t like this dressing gown. It’s the wrong one’

‘I’m sorry but I got you the one on the door which you asked for’

‘Oh did I? Who bought me this? I don’t like them’

Technically I know that she has dementia and this is what happens but I dont know how to deal with it and I simply can’t cope with it for long periods of time.

The ring

On the first visit out of nowhere she said ‘look what I’ve got’

I looked and she had a ring on her finger.

I said ‘it’s a ring’ but she started to get agitated becuase I wasn’t answering correctly.

She burst out ‘it’s your dads ring’ I slowly started to piece it together. It was a wedding ring that she expected me to recognise. And it was on her wedding finger.

Now my dad has been dead for 8 years. They had been divorced for over 30 years. They absolutely hated each other and it was a massive relief when they got divorced.

I didn’t know what to make of it so I said…. ‘Oh. Ok’

I could see the dark clouds descending on her face. I had got it wrong. She went very quiet until we managed to change the subject. if she had any energy I’d have been screamed at.

I still don’t understand what the ‘correct’ response should have been.

The attempted escape

The lady in a wheelchair in the next bed did us a ‘favour’ by letting us use her chair. Then she wanted a favour for us. To wheel her out of the room so she could leave, go outside and have a fag,

We politely wheeled her to the door and she just sat there. Eventually most of the nurses on the ward ended up in a full scale argument with her to get her back into the room on her oxygen. She was very poorly and couldn’t leave but also very argumentative.

We caused an absolute nightmare for the staff becuase we were being polite. It was awful and I could feel myself descending into a full on anxiety attack brought on by the shouting.

We got used because we aren’t used to being in this kind of situation.

The questioning

Another lady found out my name and kept asking me question after question. Or would just give me unrelated facts.

It was relentless and all the information was completely random and I had no clue how to deal with it.

I totally understand how these poor people stuck in this ward are desperate for contact with people outside of the situation. Unfortunately I struggle with talking to people when I’m already struggling. And again the disconnected conversation put me in a head spin.

No room for autism in a acute care environment

There is quite some time of this ahead for me. And let’a not pull punches. I cannot be autistic in this situation.

My stimming would cause upset in a ward where people have dementia and have had strokes.

Any false move on my part could cause massive upset for my mother or anyone else on the ward. I have to be fully neuro typical in this room. 100% masking is required. It can’t be any other way.

And over all this, there is the real fact that this may be the start of something much worse.

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Crying and headaches

Very recently I have been hit with numerous changes all at once and as a person with autism. The one thing I’m not good at is change.

And all the change is mostly work related. Which is bad for me because work wants people to be good at change and I don’t tick that box so I have to keep it to myself.

And masking autism traits is a one stop shop to getting Ill and having meltdowns.

New company

So change no 1. My company has merged with a bigger company which means that everything is changing. New people. New processes. I didn’t get another job myself so it all feels out of my control.

Promotion

This is a good thing but it’s still a change. I’ve had a promotion. I’m very happy about it but in my brain a promotion means that I need to be even less autistic. I MUST be able to deal with things.

I MUST not be autistic. Don’t get me wrong. I deserve it and I’m good at my job. But a change is a change. And having a good job is for neurotypical people. So more money = less autism.

End of a work project

My 1 year project has come to an end. I’ve loved it. I’ve been in control of it. And now I don’t know what’s next and I don’t have any real say in anything. What I do, who I work with. So again I’m feeling like things are spiralling out of my control.

I have spent the last few months dreading this but the ‘normal’ reaction is to be really happy that a job is done.

So then I feel guilty for not having ‘normal’ reactions, and I have to hide it. What do you get as an autistic person when you hide emotions and traits? Internal chaos.

The aftermath

The last few days I’ve had dreadful headaches and I’ve been feeling quite poorly. I’ve struggled to sleep and I’ve been waking up with bad headaches.

A couple of days ago after work I had a really intense melt down. Crying to the point of having a panic attack. Extreme stimming. Afterwards I felt calmer. It had clearly been building for quite some time.

The next day I felt very upset about it, because it’s not a normal response and it’s a reminder that I am autistic. It’s not been an issue much for a while because when I’m in the middle of a project I like I’m super happy and focused.

From what I can fathom my next job won’t be as in control. I have to work with other people . Splitting the job up. I will be doing something I’m not as interested in and it’s a shorter project,

I’ll get through it. But that’s about all I can hope for. Get through it to try and get to something I love again.

Along with the headaches and the meltdowns I have been crying a lot. I’m clearly quite overwhelmed and struggling.

I feel like I have accidentally got a new job without all the rigmarole about actually getting a new job.

I worry that if I ever have to work in an office again it will be game over. I constantly worry that home working will be taken away from me. It’s home working that’s allowed me to focus and be as good as I am.

I worry the new systems with the ‘new company’ are going to be so different that I’ll have to get a new job.

I worry I won’t be allowed to do the work I want to do.

I worry about working with large groups of people that aren’t working specifically on tasks im giving out.

Basically I worry all the time.

I guess that’s being autistic. Being worried. Constantly worried and breaking at change points.

I’m old enough to know that I will get through it but I’m also experienced enough to know that this won’t change. This happens every time and I never deal with it any better.

So, another therapist bites the dust

I do hope they don’t read this post but my goodness I need to vent.

I’ve tried a lot of Councelling services in my time and only one has been good. 

Better help was pretty awful. Paying too high a price for a therapist who was nice but seemed right out of school. No way were they qualified to deal with someone with autism and complex needs,

So this time I tried face to face. 

The first session was okish. Nothing special and I was told a couple of times that everyone had autistic traits which I tried to ignore. 

This then morphed into saying that people had autistic traits. I wasn’t happy because ‘I am autistic’ to me is empowering. ‘I have autistic traits’ is not empowering. Also not true. I’m autistic. One of my traits is that I never put lids on things properly,

The second session died a death after 10 minutes and I had the privilege of paying £45 for it. 

The sessions are to try and deal with my medication anxiety but I had had a really bad day. Actually super stressful with parent issues. Dealing with Gps and adult care services on the phone. 

I had already had three meltdowns that day and I really wanted to talk about it. Get it all off my chest. 

The session was 5 minutes late and I was left in a room full of loud new age bonging noises. That immediately started to grate. I needed silence. 

Not long into the session she decided I needed to try meditation, now I’ve already said I hate meditation. It tends to make me feel worse. But she kept going on about it, then she started to look for a script to help my stimming, 

This confused me. I don’t want to stop stimming because it helps with the stress. Not stimming = meltdown at home. And if I want to meditate to a script I’ll download an app. Not spend £45 on a Councelling session,

I needed to get it all out, stimming and talking.

She couldn’t find the stimming script so then said ‘but I have found one for fidgeting which is basically stimming right!’

Well no, not right. And I did say. Actually it’s kind of a bit offensive to equate autistic stimming with fidgeting, it may look the same but it’s not.

She was determined to get me to meditate to calm me down, my stimming started to get worse.

Calm me down

There was a lot of that and actually considering the day I had I was pretty good. Just stimming a lot. To be told repeatedly to calm down it NOT COOL!

I was ushered into a tiny room and she went to get me a heat pad. While I ‘calmed down’

I didn’t calm down. I could feel my money going down the drain. And I was upset. I needed to be upset, and work through it. 

I forgot the meditation and actually started to talk about how it is for a late diagnosed women on the spectrum. And how utterly traumatic being autistic is. 

I surprised myself with what I was saying and it felt good. But then she told me to be quiet and not speak for two minutes. 

I was horrified. Shush. Be quiet. Calm down. So when I was really coming out about my autism I was told to shut up and meditate. 

I was really….. annoyed. And done with it. The stimming got worse. She then told me twice that autistic peoples thoughts are fact based. And none autistic people think with emotions. And that’s autism in a nutshell. 

Thank you for telling me. An autistic person what autism is. It’s a lot simpler than I thought. 

I said that we were definitely more that just thinking factually. But by that point I had come to the conclusion that she really didn’t know how to talk to or deal with autistic people.

At the end of the mediation she asked if I felt better. No I said. I don’t like meditating. It’s stressful and awkward. Like I said before. 

I didn’t make another appointment and when I got home I lost it. I was really angry: the session did not help and I’m £45 down.

Why would I spend that much money on a mediation session to just sit and breathe in and out? Does this work for neuro typical people? I’m so confused.

So the search continues. And guys back me up, fidgeting is not pretty much stimming right?

That’s like. A bit offensive coming from someone who should know better?

Yes I had had a bad day and I really wasn’t myself but an hour of talking about it to get it out of my system was what was needed. To to be told to calm down and do something I’ve already said makes me a bit panicky. Well, it’s not going to magically work.

Yep. I’m really annoyed, at least I’m not upset anymore so that’s good. A change is as good as a holiday.

But seriously. I can’t believe how bad the session was. This was a woman who had told me she deals with autism and offers specific therapy for it.

In reality she just wanted to read a pre created script at me. I could had have a lovely meal out for the money I wasted.

I’m furious to be honest.

WHERE ARE ALL THE GOOD THERAPISTS FOR AUTISTIC PEOPLE ???

Physiotherapy.

Gaaaaaaaaaaaah so frustrated.

So yet again I have an issue that requires me to see a physio. All good but one major problem that has rendered it pointless since the beginning of ‘my’ time.

I’m shown exercises and get given written instructions. As soon as I get home I forget how they work. Can’t remember the instructions. Do the exercises wrong. Try and fathom the written instructions and eventually give up.

The two exercises I was given a while ago to sort out a problem after a fall seemed to be just leaning against a wall that didn’t appear to be doing anything because I had forgotten how to do it immediately. It’s just not happening as soon as I am by myself.

This time after another serious ankle issue I’m given certain excercises I just can’t remember as soon as I leave the room, even with notes. And some that I just won’t do. Like anything laying on the floor. These ones make me have meltdowns. I have no idea why but you can’t explain that to a physio. They wouldn’t understand.

When I get to the point of not understanding I get angry and upset because it’s the same story. Eventually I get so miserable I give up on everything and go into a bit of a depression.

I don’t understand where my legs are in relation to anything. It’s horribly confusing and without a trainer with me I just can’t and don’t do it. My spatial awareness is abysmal which is a big problem when being given excercises that require this awareness.

The issue people really have a struggle understanding is the fact that I just refuse to do certain exercise. Even thinking about them makes my brain fizz. The physio asked me. Are you doing all the excercises and I say ‘yes’ to avoid confrontation. In the meantime my recovery is just not working and I get more and more upset.

So what could I change with physio to make it work. For the first part, when I go in they give me 10 minutes which is pointless. I wouldn’t even call that real physio. I need a personal trainer who gets all the notes and then works with me in regular sessions.

I need the money to pay for it because the NHS route of 10 mins and off you go doesn’t work for me.

All doable. If I could find someone that I could cope with and I could even dare sort something out. Both of those seem quite a big exhausting task.

So I’ll keep going and getting upset when I just don’t do excercises right. That’s without the ones that make me melt down because I hate them so I avoid them.

And why do I need all this physio in The first place. My autism makes me incredibly clumsy and I fall over a lot. I just have no spatial awareness. Maybe one day they will create physio packages for autistic people that involve meaningful one to one sessions where the physiotherapist actually does something and a period of time.

I can but dream.

Vocal and speech oddities. Apologies. I’m not being rude. I just like mimicking like a parrot.

This is something that I have just realised I do and now I’m a little bit paranoid that people may think badly of me. I’m not mocking anyone. Not at all.

I can’t help it. I love to mimick people, it’s how I’ve lived my life. Mimicking how girls speak to each other. Watching how people talk to each other and mimicking that. ‘How are you?’ ‘I am fine. And you?’

When people have different accents to me I joyously copy and in some cases it sticks.

I have an odd accent and way of talking and it’s not just accents. I quickly pick up phrases and ways of saying things. This, I think makes me seem a lot younger than I am.

When I was younger I lived in Germany for a time and picked up a few phrases and still say them to this day. I always say danke shon instead of thankyou for example.

It never occurs to me that I’m not speaking in the correct language. I also used to live in Ireland and quickly picked up the Irish accent which has stuck on just a few words I say now.

‘Now’ , ‘two, ‘you’ and ‘do’ are particular words that’s stuck.

I’ll copy people with Irish accents when I’m watching the tv becuase I adore the accent and my partner will always tell me off because our neighbour is Irish and he’s worried they will think I’m being mocking but that is so far from what it is.

Also I can’t really help it. It’s what I do when I’m not masking.

As a comedy obsessive there was a show that was, let’s say very very northern. Im also northern (from a different county) but I would shout out their phrases joyously until again. Some of the accent lodged itself onto some particular words.

I’ll give you two sentences from it to see if you can guess what I’m talking about.

“I won that one. I won the mums’

And

“You always knew I had this gun didn’t you”

It’s not just accents. And phrases. I have this odd behaviour or singing little phrases in the middle of a conversation. It flashes into my head and before I know, it’s out of me. When I mask I can hold it back but if with my partner I’ll completely forget to mask so he has to put up with it a lot.

For example. When buying kalelettes in the supermarket. My partner would say. Shall we get some kalelettes? And I would sing ‘KLF. A h ha ah ha ah ha’

Baby bels are always sung to when I see then to the kids theme tune of ‘gummy bears’.

‘Baby bels. Bouncing here and there and everywhere‘

I know NTs also do this and I thought it was all just normal but I have been told that I do it excessively, and that’s ok.

Not ok in the office though. Just another reason why working from home has been an absolute game changer for me. No one wants me singing at them accidentally.

Is it starting to get too scary out there to leave the house?

Since Brexit, we haven’t gone abroad on holiday because all the rule changes are too much for me. And I’m also embarrassed about the whole thing. Since covid we have shut ourselves off in our house. Scared we may get Ill.

We are now trying to live a normal life in the big scary world. However I’m finding that external negativity in this country has massively outweighed any positives. There might be less ‘bad’ people out there but they are loud and proud and every thing else becomes background noise.

As an aside. I started this blog to record all the funny things about being autistic. However there are lots of things that aren’t funny about being autistic and many times we will probably have periods of depression and anxiety.

Some of these posts aren’t ‘fun’ and I apologise for that. But I think it’s important to record the highs and lows of being in the spectrum. This was written at a time of a real low but honestly. Right now in 2023 I think it’s more worrying if you aren’t worried about everything.

It’s the small things

Take the little things. We were on a horrifically packed train. Absolutely awful. The stress of public transport is hard for anyone. And you top it off with the large amount you have to pay for it.

Someone somewhere near us put awful tinny techno on really loud. The kind of techno that comes with chipmunk vocals. We can’t get away from it. I can’t even fully drown out the noise with my headphones.

And you just know now. If anyone said anything, The person would most definitely kick off. What makes someone think, ‘I’m going to play my music in public really loudly and everyone else can stuff it, becuase that’s what I want to do?

I just don’t understand. It’s so incredibly rude and I hate loud noises so it’s very upsetting to me.

You go to the pictures and people are talking or staring at their mobile phones. Emitting beams of light and not caring. No one ever tells them off anymore so I watch my nice tv at home. Away from idiots.

I used to go to a leisure centre with a hot tub. The notice said no children in the hot tub. Without fail every day adults would let there kids jump in the hot tub screaming and splashing. There is the notice and they just didn’t abide

I struggled at a cash point machine the other day because I was stressed and my brain wasn’t working. The person behind me got really angry and sarcastic ‘what’s wrong with you? Are you stupid?’ This made me go into meltdown even harder.

A while ago on a bus a man sat behind me (on a half empty bus) and started playing his music really loudly in my ear. I politely asked him if he wouldn’t mind turning it down and he lost it.

Told me I was a stupid bitch and I could F*** off. As he got off the bus he threatened me. No one made any attempt to do anything about it. Just ignored the whole thing.

We’re heading into the big issues

And now we are getting to the real major issues. The wider picture issues that make me genuinely concerned I’ll end up not being able to leave the house.

You see those awful YouTube clips every day of people being racist, homophobic or transphobic openly. Screaming out their repulsive ideas for all to hear.

Today I saw a young girl get called a c*** by a man who then went to hit her on a bus. All this captured on a mobile phone.

It’s like at some point. The current U.K. climate (as in our awful government) silently gave the go ahead for people to be proud to be openly awful.

Our government use the same language as these people to incite hate and oh boy has it worked.

Hate people from other countries? Don’t be shy. Make your points clear. We endorse your behaviour. Come on guys. Let’s be angry at people fleeing wars and everyone who dont look like us. It’s the British way.

Then there are the Tory voters. I know people hate it when politics gets brought into things but politics is everything. I feel surrounded by Tory voters.

And these people terrify me. They have enabled all this. And no matter what scandal, they keep going.

As an autistic person I tend to be very straight black and white thinking. And It feels to me like there is no ‘middle ground’ everything now is way too fractured.

The culture is now so bad that people can be openly awful and literally no one dare do anything about it.

Then there is environmental collapse

Animals becoming endangered every day

Big business destroying the world.

And on and on and on

This is the kind of world that is very hard to live in as an autistic person. It’s scary. I’m glad I work from home because I can’t drive and honestly. I would now be scared to walk home alone in the evenings when it’s darker.

The idea of getting on public transport alone is quite triggering and as for taxis. I absolutely hate getting in taxis alone because I have had a few incidents in taxis when the driver has made me feel incredibly uncomfortable.

So here we are. In a country where I feel more comfortable staying in my house. It’s very sad. I hope it doesn’t last. I hope things do change.

However right now I think the cultural shift would be so huge I just can’t even imagine it. Thank goodness I like my house.

Childhood memories from Senior school

PE

Sports were completely abhorrent to me. The idea that people would willingly do activities and then stand naked in a room together to shower was the absolute horror of my childhood. no matter how much I was shouted at and punished I could not do that.

So I played every trick in the book. Didn’t do activity at all if I could help it. I would disappear. Lie. Skive school and then if it came to it, have a meltdown that no teacher could control or understand.

It was genuinely the most awful situation and teachers complained appropriately about me. Although on the other hand I was a shining star in other subjects.

That communal shower still wakes me up in a cold sweat at night. I was quite happy to become a problem child if it meant I got away with it.

Year 4. After years of meltdowns. Some severe, the head sports teacher took me aside and asked me to go to the doctors and get a sick note. Which I did. For the rest of the year.

WHY THE ALL HELL DID I GET A SICK NOTE BECAUSE OF SEVERE MELTDOWNS. BUT THE GP NEVER ASSESSED ME FOR AUTISM AT THIS POINT????

Honestly I’m absolutely furious about that. Anyone worth their salt could have seen that immediately. I guess this was the early 90s.

With my note I ended up sat in a room studying during PE classes and I could not have been happier.

I will shower in my own house on my own thank you.

School Ties

I absolutely hate things round my neck. I feel strangled and upset. I can’t even wear tops with a high neck so ties for me are an absolute no no.

I did everything to not wear one. How could I learn when I felt strangled and my neck was itchy and burning? I struggle a lot with clothing and materials.

Had I been diagnosed. If the teachers understood my issues with clothing. Would I have been treated any differently? I guess we will never know.

A specific teacher used to make me their focal point. I was going to wear a tie god damn it. So we were at logger heads throughout and I hated her. What a stupid thing for an adult to get riled up about.

I remember being made to stand on a desk till I put my tie on and I stood there and stood there like I was on a game show trying to win something.

They eventually told me to come down. Nothing was achieved and I was upset and angry.

Sometimes I think about school and how ridiculous it was that I was a naughty child because I had severe issues with the uniform which stopped me learning properly. And I think, being an adult means nothing does it?

Not once did anyone call me over and ask for reasons why I didn’t want to wear a tie. Not one teacher knew about Autistic traits and over sensitivity and put two and two together.

Tuck your shirt in girl

Another similar clothing issue. I hate feeling anything round my waist and the skirts always had cheap tight bands at the top. It was all I could think about. So secretly I would always have the button undone so I wouldn’t feel it as much. And I would put my shirt over the skirt so you couldn’t see.

My science teacher (another teacher that made it their reason in life to make me a better conformed person) could not deal with this.

She constantly shrieked at me to tuck my shirt in girl. She scared me so I would but I couldn’t do it in front of anyone because I had to button up again and feel like I was being sliced through my middle. So it was always upsetting and stressful.

As a consequence I hated science, didn’t learn anything and failed.

Again how stupid. Now I wear specific materials. I can’t wear any trousers or skirts with a waist band and buttons because that’s all I think about and I sit squirming till I can get it off. I wear soft comfortable clothes which I don’t have to think about.

And there I was. A naughty insolent girl who can’t tuck her shirt in when there was so much more at play, thank you for destroying my science lessons by being a uniform bigot.

The alcohol party

As an undiagnosed kid with autism, I would take my social cues from other people. I would adopt how people spoke and their mannerisms to fit in. Especially with the girls because I didn’t understand them at all and I was supposed to be one.

I went to a girls party and they said they had alcoholic punch. Everyone started to get really drunk and act stupid, so I did accordingly. Laughing and slurring. Basically I wanted to fit in and be drunk like everyone else.

I remember everyone laughing at me at one point and saying that the drink wasn’t alcoholic and I was a liar. The joke was apparently on me. I was very confused and embarrassed because I was using all my masking tricks to be one of the girls. But for some reason the night seemed to be about catching me out. How everyone laughed.

Yeah, I didn’t really like girls. Much happier with the lads who always treated me with respect. The nights round mine watching red dwarf, playing Commodore 64 and having a laugh with them. So much better.

The mean girl

I was very good at music, especially singing and I was in the school band. I was also always the star in musicals. A bizarre thing when you are autistic but really good at singing. I didn’t like being in the spot light but I always got it. This meant a lot of jealousy from other girls.

I had a small circle of friends and my brain couldn’t focus on anyone else. I didn’t know names or faces of kids I wasn’t directly involved with. But everyone knew me. And I was utterly terrified of anyone in the years above me.

One girl in the year above was really scary but I knew her brother. We became friends. We stayed at each others houses. Went out together. I had never had an older girl friend before and it made me feel grown up.

We were friends for probably nearly a year. Which is a long time when your young

Long story short, one day she turned up with other girls from her year. They were all laughing and jeering at me. She said that she’d never been friends with me. Who on earth would want to be friends with me? She had been reading my diary and telling all her friends how sad I am and they had all been laughing at me behind my back.

I was absolutely gutted about it. It was one of the worse things that had happened to me.

Later on I would have an anger meltdown and hit one of the girls outside of school with a skate, that’s an uncomfortable truth about autism. Your meltdowns can lead to you hurting yourself and other people when you are young.

But I couldn’t really fathom it because we had had a really fun time. I didn’t usually get on great with girls but we did seem to have things in common. Much later after school she found me and apologised to me and said she had been peer pressured to do it by the other girls.

Pharmacophobia

I have a severe phobia of taking medication. It’s a dangerous phobia because obviously you can’t get any help from your GP. If you can’t take medication then there isn’t much they can do.

One of the first things that they ask is, how did you get this phobia. Over the years I have been given medication that has given me severe side effects and panic attacks. To the point now where I just get a panic attack and it’s unknown if it’s me or the medication.

The current situation.

I have my leg in a cast after breaking my ankle and leg. On top of this. I got a severe painful skin infection at the top of my other leg. I was struggling to even sit up properly and in a lot of pain. The GP gave me a weeks treatment of antibiotics (penicillin) 500 mg.

She said that there is no other treatment and I can’t use anything topical. It must be this.

I explained my medicine phobia but it didn’t seem to sink in. So I paid nearly £10 for drugs I knew I wouldn’t be able to take which is a massive waste of money.

Attempt 1

Day 1, I knew I couldn’t take them and had a horrific panic attack and then a meltdown. I then cried for hours. In pain but unable to do anything about it.

I asked for positive experiences on social media to read. But I simply couldn’t do it on day 1. The pain and infection for significantly worse and I was angry with myself.

My partner kept using the term ‘got to’. You have got to take this medication or you will get worse.

You have got to take the pill, just do it. You have got to because you are in so much pain and it will get worse.

I have got to but I couldn’t, it’s to much and I either succeed or fail and failing isn’t an option, I’m under way to much stress with this.

Attempt 2

I got up at 5 AM breathless and panicking. I’m also in a lot of pain.

At 9 am we tried again. My partner got the pill out for me. I couldn’t touch it and started to gasp for air. 5 minutes later I’m having an extreme panic attack,

I’m gasping for breath and I feel hot and out of control. A little later it turns into a meltdown. I’m stimming with my hands violently and making high pitched screaming noises to try and hold myself together, this goes on for a while till I start crying uncontrollably. I’m a real mess on a level 10 panic attack and meltdown.

My partner starts to realise exactly how bad my medication phobia is.

I start to calm down when I realise it’s not happening, and my partner changes the language from you have got to do it.

A possible light?

We phone 111 and a GP gets back to me within the hour.

It’s the tablet / capsule that truly terrifies me. You can get it in liquid form, that means I can take a little first before moving to a larger dose. Also it’s liquid not capsule, these are all plus points. The doctor is happy to change my prescription because of the phobia.

Attempt 3

That’s another £10 for more antibiotics.

With the new liquid antibiotics I went for half the dose in a spoon. I had half of that and immediately started to feel incredibly sick. then my throat started to close and I couldn’t breathe.

It was intense. ended up on 111 again having another scale 10 panic attack. In my brain I was screaming. Never again. Never again.

111 booked us into a treatment centre who basically said the same thing, I have a severe infection and the only thing they can do is give me antibiotics. If I don’t take them I’m going to get very sick.

So now I’m really stuck, I had a meltdown at the centre. I always knew one day my medication phobia would prove dangerous. And here it us.

Attempt 4

This time I sat outside in my wheelchair and had a small spoonful. Only because my partner was really upset and it started to get through that this isn’t just affecting me. Immediately started to play the alphabet game. Name films A to Z. Which is a great trick if you suffer from panic attacks. I have just started to do this and it’s so helpful.

Felt a little poorly for a while but managed to keep hold of myself. I would say I was at a level 6 panic attack.

It was later on that I started to feel anxious and a little wrong. I started to have a medium level panic attack and this was upsetting because it was nearly 3 hours after the last dose.

It was my stomach causing it and it didn’t last and I managed to sleep but it stopped me from taking the night dose.

Dose 3

Very nervous in the morning. Also I was in excruciating pain. Managed to take half a dose, played a new game, the movie game and felt fine

• Movie game :player 1 says a film and actor

• Player 2 says film that actor has also been in and another actor from that film.

I had a mini panic attack later when I had a paracetamol but it lasted an hour. I can’t believe I have got this far.

Dose 4

Nervous again before hand but this time I was fine. Nearly the full dose. We played the movie game.

Annoyingly I had another mini panic attack on the paracetamol a little later but I have to take pain killers. I have a broken leg and a skin infection.

By this time it’s a revelation. I have never even managed to take medication past two violent panic attacks.

However when I got to full dose I started to get an ongoing headache that became incredibly severe. To the point where I was in bed holding my head and groaning. And the nausea cam back.

After another chat to a GP we took the dosage down a little. They suggested changing meds but I didn’t have the energy and it was a case of better the devil you know.

Where I am at

A week later I have managed at a lower dosage. It’s been a horrible week but I have learned that taking the liquid is disgusting and makes me feel sick. I have to breath in peppermint aromatherapy for a while. Deep slow breaths is needed.

Then fine and occasionally I feel a little panicky and nauseous an hour after taking. But nothing that isn’t doable.

However the pills remain untaken. I only coped because of the liquid so right now I don’t know if I have made my phobia better or worse.

I have however got myself Councelling sessions discuss this specific issue.

Pharmacophobia is an extremely dangerous phobia I believe. I don’t know how widespread it is but there appears to be no one specifically treating the condition out there.

Most of the time you can avoid the fact until it becomes seriously important.

This was a skin infection, not good, but imagine something much worse like cancer.

* The infection has gone but I’m left with a wound that needs looking after. So after all the chaos it did do good and I need to remember that

The business handshake

I don’t like being touched.

But I also have an extra issue. I’m always anxious. I’m guessing most of us on the spectrum are. Because of this I always have very hot sweaty hands. I cannot stand having my hands touched.

Just thinking about it makes me feel sick. It’s awful for me. And for the other person.

I’ve been to the doctors about it who were incredibly unsympathetic, they gave me pills that made me Ill. I gave up after a while as I do with everything health related. Because it’s just too hard. And there will always be a pill given to you that keeps you up till 4 am feeling sick and dizzy.

So I just make do as best I can. Which is ok normally but job hunting becomes a nightmare because of the ‘business handshake’.

I’ve sat in waiting rooms desperately mopping my hands knowing what’s coming. But it’s the heat that’s the worst. You know as soon as someone touches my hands. That will be the thing they remember. It’s like a really gross superpower. Oh you mean the girl with the hands that are so hot they can probably melt you? Yes that’s the one. Let’s not go for her. I don’t really want to handshake it again.

But you have to shake hands. It’s the thing to do in business. I dream of moving to the slight bow model of Japan. I’m hopeful that covid will have changed things but I doubt it. There is no wonder I don’t go for new jobs too often.

When I start to think about job interviews and meetings. That’s at the forefront of my mind.

Throughout the interview or meeting all I can hear is this ‘oh god they touched my hand. When will they wipe their hand? Will they try and do it secretly? Will I see it?’

It’s a factor for me staying at jobs for a long time. Because I dread the business handshake.

As we start to move towards much more working from home I may not have to deal with the business handshake as much.

Thank goodness.

Hey business people. Leave my hands alone.

We are all on the spectrum though aren’t we?

No. No we are not.

I have heard it twice in the last couple of weeks from people who aren’t diagnosed as autistic. Or, really see themselves as autistic. But to make me feel better, gave me a speech about how everyone is on the spectrum.

Well no. And I don’t think anyone diagnosed believes that all the neurotypicals out there are also on the spectrum somewhere.

You are either autistic and on the autism spectrum, every single one of us is different. Or not autistic.

Having a few similarities is not that same as a lifetime coping with autism. And when I say coping with autism. I mean coping with the neurotypical world that is not set up for those of us on the spectrum.

I get really irritated now, having the spectrum explained to me by an NT. An NT who is very social but perhaps is a little awkward sometimes. Or has poor spatial awareness. Or maybe a few other traits.

You have absolutely no idea what it’s like to be autistic. A bit of social embarrassment here or there or an intense hobby doesn’t even get you close.

There are highs and lows when you have autism. At best you can sink into your obsessions. You can have really meaningful relationships. Great jobs and a full life.

At worse it’s an absolute hell scape, made up of scary people. sounds. places and behaviours. To get through every day takes so much energy and planning you get burned out after a very short time.

There is periods of bullying, just not fitting in and extreme loneliness. Sometimes things get so intense it’s like being screamed at by a million people all at once. You either melt down or retreat and shut down when it gets really bad.

And it’s like that all day. Every day for the rest of your life.

So no we are not all on the spectrum. Only an NT would say that and think that they were being nice to you.

Of course I’m not saying NTs wander round in a world of daylight and happiness. That would be ridiculous. NTs clearly have the same issues. They can be bullied or feel lonely.

I don’t have the words to explain why it’s different for those of us in the spectrum.

For example. Take person A. Someone not on the spectrum but suffers from panic attacks and anxiety. They have issues at work. They get upset. Hopefully resolve things. It may take a long time and it’s really hard.

Me. I’m screaming and repeatedly smashing my hand into a wall or stimming. Pulling my hair or tapping and waving my hands. People are looking at me because I’m acting like a toddler but I’m in my 40s. Or maybe I completely zone out and I’m just not there anymore.

Eventually when I come back I have a melt down anyway. Just a delayed one. and this goes On and on because my coping mechanisms just don’t work.

Either someone gets involved and helps me. Or I get very Ill.

So please, if you are not autistic. Don’t use the phrase, ‘but we are all on the spectrum though aren’t we’

It’s taking away from our experiences. Not. Cool.