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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

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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.

Childhood memories from Junior School.

Sports Day

It’s no secret that I hate sports and PE. I’ll go into more detail in my senior post but I hated them with a passion. This was on every PE report penned by myself.

‘I hate PE and there is nothing anyone can do about it’

So. Sports day was a problem and I would lock myself into a toilet cubicle all day. You can’t stop a kid going to the loo. There I would stay with people screaming and shouting until they gave up. I remember the complete chaos outside as I stimmed quietly in that locked cubicle.

I’m a problem child. No one thinks about autism at the time. I’m just very naughty and obstinate.

The drawing

I loved art and drew a lot. Mostly copying other art. One day my third year teacher (who I really hated) Started shouting that I had traced a picture of a dragon. she absolutely wouldn’t have it that I had drawn it by copying.

I got very upset about it because I had drawn it myself, but she called me a liar. It got to the point where my parents were called in to discuss my behaviour.

From what I can remember my dad was furious and he noticed that my picture was identical but actually bigger than the original. Therefore I couldn’t have traced it.

I never got a proper apology I don’t think. It was just swept under the carpet but I never forgave that woman for calling me a liar about something I could do.

To this day I love copying things. They are normally pretty much identical and as an autistic person I can’t really come up with my own artistic ideas. But hey. I like copying things. I think that’s fine.

The Octopus pool

As a child my parents would always take me to a holiday camp. And this camp had an indoor swimming pool.

There was a giant octopus painted at the bottom of the pool. My parents would try their hardest to get me to go in it but as far as I was concerned their was a monster in the bottom of that pool. A huge scary monster and I would scream. Cry. Beat my fists on the floor. Completely melt down. Anything but get in that water and be taken by the kraken

A social task

I think it was very clear that I suffered socially, but instead of talking to me, my teachers would try and push me to bring me ‘out of it’

I was asked to to go round all the classes with a message for the teachers. Honestly I can’t even remember the reason why. Just that I had to go into every class room.

I felt like a stone had been wedged in my stomach. I felt sick with dread. I think I managed one class and my head exploded.

I just couldn’t do anymore. But I daren’t go back because I had failed.

I don’t remember much else but I believe I cried. A lot. And was looked on with disappointment. I had failed. It’s that whole thing of pushing your children when in fact being pushed is the worst thing you can do to an autistic child.

The park

My mum would send me to the shops to get various items. However to get to the shop, I had to go past the park.

I would hover at the side of the house checking the park out. If it was empty I would run for it.

The one situation that filled me with fear was boys playing football. As soon as I saw a group of ‘footy lads’ I would panic.

There was absolutely no way I could walk past a group of boys. Absolutely terrifying. I would hide in the jitty for a while. Time it, walking to and from the house and going to the shop. About fifteen minutes.

Then I would walk back in the house and say that they didn’t have the specific thing in.

I’m not really sure how my mother didn’t put two and two together. The shop didn’t have things in every time there were groups of kids on the park.?

I was so scared of people at that age. Pushing me just made me worse.

Honestly I would still be pretty scared of lads playing football. But thankfully as a women past 40 I’m now completely invisible to teenagers.

Egypt mad

I was obsessed with Egypt, I read book upon book about ancient Egypt. I even had books about deciphering hieroglyphics.

Instead of playing with other kids, that’s what I would do because learning was fun. I wanted to be Indiana Jones and be an archaeologist.

I should have been ridiculed for it by the other kids, however I did everyone pictures of their names in hieroglyphic cartouches. They loved it, and honestly I’m not quite sure how I got away with being such a dork.

Dad got me tonnes of cardboard and I spent my free time turning my bedroom into a massive Egyptian tomb. I created a huge Egyptian scene piece by piece and placed all the cardboard sections on my cupboards and walls, I’m devastated I don’t have a picture of it.

All the other little girls were playing with dolls and socialising. Not me.

Ghost club

Later on at junior school I became obsessed with horror films and ghosts. I watched a film called the Shuttered room from the 60’s. Spoiler alert but there is a terrifying woman locked in an attic.

I had a few friends by then and I would make them reenact the film at dinner times where I was the monster woman in the attic. I’m not sure how on Earth this was acted out now but that’s what I did, probably until my friends started complaining that we did it every day.

Then we started ghost club where we (I) would tell spooky stories and declare areas of the school haunted.

The outdoor girls toilet block was always a source for haunted stories and dares. So was the back of one of the storage areas.

Grandmas footsteps became zombie footsteps. All the normal games were turned into scary games. I loved it. Basically it was my obsession that led everything for a while with my little group of friends. It never occurred to me that they wouldn’t be interested in Ghost club.

Primary healthcare is pretty much a thing of the past.

Since I can remember, I have had nothing but bad experiences with the NHS. The only good one was after years of being misdiagnosed and treated badly I got my Asperger diagnosis in my 40s.

Which honestly should have happened when I was a child. They had enough opportunities. I think I am incredibly angry with them. I very much blame the dismantling of our health services on the Tory party who want nothing more but to have the public’s health as a way to make money.

I needed to deal with the ‘new normal’ of dealing with your local GP surgery. I have other issues (being over 40 sucks) so time to try again.

Phone call 1 June

The woman asked me what it was for and then judged me a none serious case and said I would get a phone call in over a months time.

That was just over 4 weeks away. I understand about COVID but they have long messages saying don’t phone about this. I understand It’s not a true emergency but a month is a real slap in the face.

I think this is the new normal and they will stick to it.

As a person with Aspergers I struggle to get across my problems and it often takes a few goes. That’s if the GP hasn’t pushed me over the edge by saying something rude or upsetting which they have done.

Just one little example. I went to see my GP about extreme PMT before I knew I was autistic and was told ‘well most women cope don’t they?’

So here I am, waiting a months for that 10 minute phone call. Getting it right had become extremely important. It has to lead on to something. I can’t mess this up.

How very stressful. This is just not a way to be.

So I wait a month and get to the day of the call.

And no one calls. I don’t know if they have forgotten about me. I don’t know if they will try, say when I’m in the bathroom for 30 seconds and then happily put the phone down as a ‘did not answer’.

I don’t have a clue when it is so that 10 minute call now means I can’t do anything all day.

So I phone the GP surgery. It took ages. They wouldn’t answer for such a long time. This now happens a lot. You are lucky if you do get through.

And the receptionist today was clearly just annoyed with me. I asked if there was any idea of times? Like morning of afternoon. Just something I can plan around.

She sighed and said no. This wound me the wrong way and I explained that I needed to plan my day and just any idea would be something because I didn’t want the call when I was with people.

Again a sigh we’ll I guess it will be the afternoon now.

I gave up at this point. Basically this system is unworkable. Then to have to cancel your entire day including work just for a short phone call because it could happen any time is unreasonable.

This really knocked me down. I should have known it would. 99% of my GP visits have lead to tears. Upset and in some cases depression.

Phone call 2 July

I eventually get my very rushed call. I cannot take everything in because it feels like I have to be quick and I don’t feel like I can ask the questions I want to ask. I get prescribed some medication which is at least something.

So I go off and pay for it, try it that night and I don’t sleep. I feel nauseous and shaky, it’s quite a frightening experience.

I try again in the day. Same again and I have to spend the day dealing with feeling terrible.

I give it one more go and the side effects get worse. Nausea, shaking panic and wooziness.

At this point I throw in the towel, yet again the medication has made me ill. I speak to a forum, they all say that it’s unusual and am I sure it’s not in my own head?

I am therefore an oddity and I’m convinced my GP will be irritated by me. I cannot be helped.

The medication was a stop gap to more medication and now I’m convinced that I can’t take the main medication. I need to speak to my GP for advice rather that running away and giving up.

I phone my surgery again. ‘You want to speak to the same GP? that will be another month’

So, to talk about the medication I was given I have to wait another 4 weeks.

At this point my negative view of health care has dropped so low I don’t know why I am even bothering.

The trick is now to at least try because there is a really serious end game to this.

I’m older, at some point I may get a serious illness. At this point with trust at the lowest I won’t take the medication and then it’s game over.

Now that’s serious and scary. I don’t get the opportunity to talk to my GP about these things because there is no time. Hurry hurry hurry. Get your meds. Get out.

But what can they do with a person who hyperventilates, and suffers scary side effects when anything is prescribed to me?

It’s my fault. I cannot be helped. I must give up and stop bothering the NHS.

Phone call 3rd August

This actually is a slightly better one in some respects. My GP tells me that there is no way the meds are causing the reaction. They are not strong enough but clearly I struggle so don’t worry. Just don’t bother with them.

Oh ok. I won’t then……….. she has a way of being really chirpy but at the end of the call you realise that the entire two months has come to nothing.

I did actually try the medication I was given again and didn’t get a reaction which is good. But it also didn’t do anything because it was so mild. By this point I don’t have the energy to ask for the meds that I was originally going to go for. I will Just put up with not feeling well.

And like my GP says. Oh well you can always have another go.

Here are a few things that stay in my head from over the years

  • Struggling with extremely bad PMT. my GP told me ‘well most women cope with it’
  • Sleeping all the time due to a medication I was on. My GP said ‘have you thought about getting a better alarm clock?’ and ‘you just need to get up instead of sleep’ and ‘well what do you want then? A week off work’ no I want to not sleep for 16 hours a day.
  • Going back to a specialist because of constant migraines. Being told that the drugs I would be getting meant I also had to take the pill because I absolutely couldn’t get pregnant whilst on the drugs. It would be damaging for the baby. When I said I didn’t want the kind of meds in me that would ‘mess up a foetus’ he looked at me like I was shit on his shoe and said ‘why?’ And then basically said there was nothing else he could do.
  • Walking into an eye specialist. He didn’t speak to me. Motioned for me to sit. Clamped my head in his hands and put dye in my eye without any word that he was about to do that which really frightened me. Then simply shook his head and went back to writing things down without even looking my way.

The list goes on.

There have also been some really lovey people who have helped. The nurses who made me feel comfortable to be able to have a smear test.

The lady who went above and beyond to get me diagnosed with auditory processing disorder.

The nurse who told me that my heart was absolutely excellent and made me feel like I had won a competition about having the best ticker.

The nurse who during my pre op looked worried and started asking me about my multiple operations and medication. Till it became clear someone had attached the notes of an 80 year old woman to my details accidentally. We had a laugh about that.

The GPs who have listened and been more gentle in how they treat me. So it’s not all bad.

And it could be worse. The Torys could get their way and privatise the who system American style.

Meltdown triggers that make you look like a bad person – Parents

I have always struggled with my mother. She has always been chaotic, talks in a confused manor and has no filters, whilst telling everyone how good she is with people.

In the past it wouldn’t take long for things to break down and we would start arguing with each other.

One of the worst offences for me was the crying, my mother would always turn on the waterworks to get what she wants and for me that is an immediate shut down.

We have nothing in common. Nothing to talk about and she continually pushes a negative agenda.

I made a pact with myself a long time ago that for my own mental health I needed some space and I have to keep her at arms length.

However, a while ago my elderly mother got ill and I am the only person who can deal with it.

It seems to be mobility and cognitive functioning and it’s entailed a lot of stress in my part and a lot more contact.

I’m very aware this marks me out as an absolute hell spawn but it’s a complicated problem.

For example one day she went on and on at me. Logically making no sense. Constantly repeating things over and over again, it’s a sensory overload of none information. If I ask questions she doesn’t like she gets angry and shouts at me. ‘Don’t you dare question me. You think you know better than me?’

Well yes I do unfortunately. Especially now.

There are lots of things I can talk about historically that add extra weight to this problem. As a child I was undiagnosed and suffered from stimming in public (I know they are now stims, normal for an autistic person. )

I would always be slapped and told repeatedly to stop showing off. This made my ticks worse and I was shouted at all the more.

I did tell her that I had been diagnosed with autism but she barely noticed me saying it. It meant nothing at all and she made no effort to find out more about it.

Another time she had told someone close that she didn’t know they were pregnant and got the response ‘I’m not’ and when she told me I laughed and said ‘well there’s no wonder she went a bit quiet on you’

She exploded at me. Calling me names and saying I was an arrogant snob (which made no sense) I simply got up and left because it was another sensory overload

  • Information overload
  • Emotional overload

To me it just doesn’t seem right for two people to come together to argue. I upset her. She annoys me.

And so here we now are in a situation where I have to be the bigger person.

But the overload is so much. So intense. It’s alarming to me and I’m not coping with it. When I speak on the phone ☎️ with her I feel myself lose all my energy straight away. I didn’t sound like myself. I just want it done.

When someone emotionally ‘needs’ me to this extent it actually makes me feel ill. I’m not that person. I’m doing all the practical things but I cannot offer emotional support to a person who has no understanding of Aspergers.

I can’t cope with the chaotic loud communication loops.

The drama continues and it gets worse every day. She is buying large value items over and over again because she gets angry and keeps clicking buttons on her iPad.

She does it secretly and then she cry’s that I’m not helping her. We sort out all the issues with the bank and tell her, how can we help when you are doing these things without our knowledge?

At one point when we went down she started screaming in my partners face and I finally had a meltdown. I went very quiet and said that I needed to leave because I didn’t want her to see me have an autistic meltdown. It’s the last time I have been to the house.

I spoke to someone about this the other day and they said that normally, when a parent gets old and starts to struggle, you normally have a lifetime of love and good memories to hold you up. I don’t have this.

I now struggle between making sure I am ok mentally and giving her time. It’s one of the biggest challenges I face at the moment and the one that causes me the most difficulties with my autism.

There isn’t an answer for it either. She will never change and I will never be the daughter she needs. It’s a daughter I don’t think she deserves.

Gyms

I have decided that I want to go back to the gym.

This is now really true since I broke my leg and ankle. I realised that I need to get much fitter. I had absolutely zero upper body strength and if I was in better shape. This whole breaking my leg and ankle ordeal may have been easier.

I usually just walk and jog but it’s clear I need full body workouts.

But, I DON’T THINK I CAN DO GYMS.

Cheesy European Techno, maximum volume

A couple of years ago I tried the gym 5 minutes from my house. Perfect.

However it seemed to be very male, beefcake oriented. Pretty terrifying. But the very worst thing was the music, it was louder than anything I had ever heard. The worst kind of bang bang bang dance music with that awful chipmunk singing over it.

No noise cancellation headphone was going to help me here.

The guy was talking to me but I couldn’t hear him. I just wanted to get out and get away from the hammering.

I knew that I wouldn’t cope with that so I politely said thank you and left.

Why am I so polite / pathetic?

I should have said. “Hey I have autism. Your gym is great but the music volume is too much for me. Do you have times when you turn it down?”

To be honest. I don’t think I would have got anywhere anyway but it was worth a try. I was very upset at the time because that would have been ideal.

Lady Gym

I joined a ladies only gym. You went round the course, 5 mins per equipment. Which annoyed me because I like to do my own thing.

From the start the place made me feel uncomfortable in its aggressive ladies only stance. The walls were pink (for ladies) it was covered in posters of ladies quotes. Ugggghhh. That was just about deal-able with. But there are more ‘this is how ladies work’ problems to negotiate.

The girls who managed the gym had the concept of ‘ladies like to be talked to whilst working out. Ladies like to chat’

Therefore I got followed around every time and small talked to. The entire time. And all I wanted to do was switch off and listen to my podcast.

It got to the point where I was getting panicked about going because I needed an hour of chat. Don’t get me wrong, they were all super lovely but that is absolutely not for me.

Eventually I just couldn’t bring myself to go anymore because of the worry. Again, if I wasn’t so polite I could have said “Hi. I’m actually autistic and I want my gym session to be a place where I can just switch off and listen to podcasts and not have to socialise. It’s fine to just leave me too it” but that wasn’t going to happen.

So I eventually I cancelled the membership. Ladies gyms are not for me.

Plan of action.

Once I’m walking I may try the one close to me again and see if I dare mention the music. You never know, it may have changed.

There is another one a little further out I can try too. it’s such a shame I don’t drive. That would open up so many more options.

As an autistic person I need a space where I can switch off and not have to be beaten over the head with extremely loud techno music.

A place where I can just concentrate on exercising and feeling like I’m blending into the background.

It would also be nice to find one where it’s not just scary muscle built men who all spot each other. I find that incredibly intimidating.

I’m caught between knowing that it’s super important to get fitter, and being scared of these public spaces. If only I lived in a house where I could have gym equipment. Ahhhh that’s the dream.

Broken Leg Broken Ankle. A really painful lesson

So.

Just over a month ago I fell in the garden and broke my ankle and my leg.

I have never felt pain like it and immediately went into shock. Screaming and crying. The whole time my cat sat next to me on the wet step I slipped on, wondering why I wasn’t getting up.

My partner managed to get me up and we hobbled down to the car to get to A&E. By this point I felt very sick. I was deathly pale and in a lot of pain. My brain wasn’t processing what was going on.

We got to A&E and I was fast tracked through. Got my first x Ray. If it was sprained I’d be allowed to go home. Anything worse I was going back to A&E.

I went back to A&E Chock full of painkillers by that time.

I was told I had broken my ankle and that my fibula and tibia had been yanked apart and there was too much space between them.

I then had a splint fitted and back to X Ray. After going back into A&E I was told I had also broken my leg.

So back home in a splint. Told to take painkillers and that they would be getting in touch with me to come back in asap.

It started to sink in at home.

Initial issues

I couldn’t get upstairs and down stairs anymore apart from on my backside and getting up was almost impossible from the floor.

There was a step from the bedroom to the bathroom and I couldn’t even do this anymore.

I can’t go to the loo on my own. I can’t get food for myself. I can’t do anything. Once in the bedroom I realise I have a horrible thing on my leg and I’m completely reliant on my partner. All my very specific routines I set up for my self. All gone.

I cry and have panic attacks all over the weekend. I don’t have a clue what’s happening and I don’t sleep. I just have meltdown after meltdown. I can’t even walk it off. And the medication is making me feel sick.

I wake in the night after a tiny amount of sleep shaking which lasts for about an hour. Not normal trembling but full shaking, like a fit and it’s really disturbing, it’s possibly the shock causing these shaking fits.

Back to see the specialists

I’m asked back into hospital on the Monday. They talk about an operation which absolutely terrifies me. my partner tells them I’m autistic because I’m starting to struggle a little.

In the end I have a new full cast and my bones forced together inside it. I’m supposed to have gas and air for the pain while they do it but I’m too scared to breathe it in so go for the pain instead.

I get an extremely heavy full cast and allowed to go home. The pain is intense again and I’m told I’ll be back next week.

All this is a whirlwind. Thank goodness I’m off work sick now so I don’t have even more stress to deal with.

The next specialist appointment

The next week, after a week of not sleeping, panic attacks and meltdowns. We can’t get to the hospital because I’m too tired to get down stairs so we have a phone call.

I’m told if the cast is good I may not need the op.

We go in the week after. By this point I have a wheelchair which is helping me not pull my arm joints out. Not being used to crutches I completely mess my entire body up. They don’t tell you that it’s not just your leg and ankle you have to deal with. It’s your back from having to lay down a lot. Your arms from using crutches. Every other muscle from just being in this situation.

Another x Ray and they say that it’s looking good. Everything is in place, see you in 4 weeks.

I get wheeled from the room and break, I start crying, full on ugly public sobbing. 4 weeks. 4 weeks of this. It seemed unendurable.

Bearing in mind, I can’t bear wearing trousers with buttons. I can only wear soft shoes. I have really strong sensory issues and now I have a massive heavy cast pressing my bones together. I can’t get it off. It’s extremely painful and I now have to sit for a month,

I understand there was nothing to be done but I was absolutely knocked for six.

A fortnight

Back in my bedroom. I’m looked after ridiculously well. I watch tv and I’m wheeled out occasionally to have a flannel bath. I move from wheelchair to bed.

I have a little flask to wee in and anything else I am wheeled to the loo. For the first 2 weeks I have to be picked up off of the loo.

It starts to sink in at this point and I get very depressed. Not only that but I’m having up to 4 panic attacks every day. And I can’t sleep. So I’m tired and scared. I can’t continue on like this.

Late at night I panic and start to scream “get it of me. Get it off me” there are times of the day when it feels like it’s squeezing my foot off. I have to spend most of the time flat on my back with my foot in the air due to swelling.

I don’t eat much for a while. I usually cook. I usually decide when we eat and now I have to wait. Everything is out of my control.

It’s these things that are causing my meltdowns. I can’t just get up and make breakfast. I can’t make any decisions any more. It’s hell. Absolute hell.

I count down the days and the percentage of time I have been in hell.

My partner tells me that just because the cast comes off in 4 weeks. It doesn’t mean that I’ll have to have something else or I’ll be walking at that point,

I can’t even begin to process that. I need an end date to keep sane.

Cast sores

Day 27 I start to feel really sore in my heel and the cast is moving more freely so the swelling has clearly gone down.

They want me back in. Just under 2 weeks to go.

When I get there the cast comes off. I thought it would be incredible but I’m gripped with a fear. I daren’t move a muscle in case it starts to hurt again like day 1. It’s really quite scary.

They get me in another cast, apparently it’s just bruising. I don’t have a sore. I saw how black my foot was when it came off.

This cast is much snugger that my last one and I can feel it on my toes. I start to panic. “It’s too tight. It’s too tight. it’s hurting my toes”

I get ushered out to x Ray. By this time I’m meeting down again. I turn into a small child unable to look at peoples faces. I’m sobbing and stimming with my hand.

The x Ray people are lovely. We get back to our fracture department to be told it looks great and we will see you in 2 weeks.

My partner tells them I’m struggling, I’m clearly struggling. In my head I’m screaming “please get it off. Get it off me. It’s too tight”

But they said. It’s fine. Go home. Calm down.

I mean what else could they do?

So I did. Go home but I didn’t calm down. I exhausted myself with more tears. More meltdowns and panic attacks.

This cast is a lot more painful than the last one. I didn’t know how I could get through to the end of this ordeal.

It’s so heavy. So tight. My leg fees alien. I don’t think I have ever felt this bad In myself before.

I will pop another story up when we get to the next stage of this process (10 days to go) but there are numerous things that I’m learning about myself, or are scaring me right now.

  • Sensory issues. Being autistic with sensory issues and having to wear a heavy tight leg cast. I’m still insure how I have got to this point without losing it completely. It’s never occurred to me how damaging breaking a bone could be for those of us with autism.
  • My mental health after the end date. Every second of every day I have counted down to my end date. But no one has explained anything to me about what happens next, that would have been really good because I’m scared my mental health will dip even further in the ‘next phase’
  • Losing all my routine. My partner sleeps in later than me, goes to bed later and I usually cook, losing these routines has been incredibly hard for me and I have had some screaming meltdowns because of this.
  • Loneliness. I didn’t think I could be lonely but being in the same room every day. An occasional exciting bathroom trip. My partner working late so can’t spend too much time with me. It’s been really hard,
  • Pain and painkillers. The big one. I have been in so much pain but I have a drug phobia. The first few weeks, the drugs made me nauseous and panicky, sometimes I’d have a horrible panic attack at 3AM after an ibuprofen so I haven’t been taking enough painkillers. It’s been such a struggle with myself to be able to do enough to take the edge off the pain
  • Nighttime panic. at night the pain is worse and the panic is worse. I got into a habit of falling asleep for a few minutes and jumping up, gasping for breath. Then trying again and the same thing happening till I daren’t even try any more. I was so sleep deprived I would pass out in the day for a while. I usually sleep on my side. Sleeping on my back has been horrible. Along with waking to the same nightmare of my leg in a heavy cast. I need my sleeping to get better or I will get really Ill. I have become really frightened of the night.

See you on the other side. 

Childhood memories – Pre school

Baby dummies

Apparently I wouldn’t give my dummy up and when my parents tried to wean me off this baby pacifier, I would take them from other children because I wanted A DUMMY.

We were in Skegness and a child in a pushchair had one and I went right up to that pushchair and grabbed that dummy. I wanted that dummy. I was getting it.

I remember a lot of adult talk about how I was really unusual about my dummy use as an older child.

Only now, you can see hundreds of posts of adults worried about weaning their autistic children from their dummies and think, there was a clear sign. Ignored in the 70s

The murder (not really)

At my birthday party someone drew on the wall with red marker. I decided that someone had been killed and that it was blood. I had a massive meltdown and refused to go up the stairs because of the murder. Pretty dark for a pre school kid.

This went on for a long time. The pattern of the red mark stayed in my head even when it had been wiped off. My mother was furious at me for being silly.

The angrier she got. The more convinced I was that our stair way was covered in blood.

Stop showing off

I think I used to stim a lot as a small child. Lots of rocking and odd behaviour. A lot of hair twirling especially when I got tired. When ever I started to get bad my mum would slap me and shout STOP SHOWING OFF. I heard this constantly. The more I was shouted at and slapped the worse I got,

As a consequence I never really got past that with my parents. The damage was done. It wasn’t showing off. I was stress stimming.

I have since told my mother I am autistic but as she doesn’t really know what it is she isn’t that interested.

It’s hard to have a relationship with this kind of baggage. After all, the more she shouted. The more I got sensory overload. The more meltdowns and stimming. It was just a never ending circle. Brought on by an adult who didn’t have the capabilities to think things through properly.

The pushchair with the green rain cover

This is one of my earliest memories. My dad would walk everywhere with me pushing my pram. It had a green rain cover on it and I loved that cover, I basically spent my baby years being pushed around not seeing anything but the green rain cover. I loved being hidden and being inside something, not on show. Hearing but not seeing.

I used to do this in the garden too. I would sit on a chair with another chair on top of my so I was still inside something. I would pretend I was in the cockpit of a space ship. Or in a ship. I loved it.

To this day I love being in small spaces like that. ultra private with no one being able to see me.

I always remember those walks in the pram when it actually rained and I got the extra bonus of hearing the rain splash on the rain cover. I always remember just seeing green in front of my eyes and being really happy.

That was all thanks to my dad letting me have my way even though it was a bit of an odd thing to do.

Again there it was. I didn’t want to communicate with people or socialise. I wanted to be in my own little world.

Extra note. Looking back I think my dad would have been diagnosed as autistic if he hadn’t been born in the 1920s. So he never had any issues with my autism traits.

Aeroplane shows and bonfire night

My dad loved to tell this one. Apparently any loud noise and I would absolutely freak out and hide in my dads coat until it stopped.

I was petrified of loud noise. I think I was trying to get inside something. Like my green hood on my pram. Dad thought It was about him but I don’t think it was. Bless him.

I think I was just trying to get in something away from the noise .

A public toilet nightmare

This type of incident is an absolute nightmare for autistic people, and I’m sure for everyone to be honest, but I wanted to look at it from my perspective to see how damaging this can be for those of us on the spectrum.

We went out on the train to a place that we have never been to before. I always panic because I need to know where the loos are in new situations and this was a trip for possible furniture purchasing purposes.

By the time we got back to the train station I really needed to go to the loo (it’s a stress thing) and the station had one disabled ladies toilet.

Inside there were extremely confusing push pads for locking the door. I wish I had taken a photo. It really freaked me out it was so confusing. No close or open I don’t think, just lock and unlock.

I immediately panicked and if I had been by myself I would have had a full on meltdown. Thankfully my other half was with me so he said he would come in with me. At this point if anyone had come to tell us off, I would have help out my autistic card and shouted ‘JUST TRY ME RIGHT NOW’

So he pushed the lock button The door started to close but at half way it opened again.

He tried again and the same thing happened. Then the door went into meltdown. Closing half way then springing open.

I was just grateful that I wasn’t there by myself. Imagine being a wheelchair user for example. This would have been absolutely horrible.

To not be near The door, just hoping the technology works. Then seeing it not work, opening for everyone to see you.

It’s just ridiculous. Just put a working lock on the door.

Every time I go into a loo I don’t know I start to panic that I won’t be able to unlock the door. It always happens but this was another level of worry.

As we got on the train we saw the door repeatedly open and close over an over again. I was very upset that this had happened to me. And very very grateful I wasn’t alone. I dread to think what would have happened.

I’m sure that for many this would have been really annoying but forgotten about by the end of the day. This will fill me with complete paranoia for months to come. I don’t do this kind of thing very often and now I have another reason to fear attempting to travel. Just what I needed. It feels like more and more it’s just not safe to be out their as an autistic person. It’s becoming more broken down and confusing.

Such a shame and easy to resolve by not adding easy to go wrong and confusing technology onto your one public facility.