“You’re right where you need to be”

A friend said this to me the other day when I was bemoaning then fact that I had stalled on day 3 of a 21 day meditation challenge.

I was frustrated with myself: I have done a mindfulness course; I have felt that deep connection and huge rush of energy when a meditation is successful and touches your soul; I know it changes the brain and is an amazing tool for anxiety and depression. I know all this and yet I can’t make myself do it. Or anything else that is a benefit to me come to that – healthy eating or exercise. Exercise ( other than my 2-3 hours dog walking a day) I might have cause for – Ehlers-Danlos means I have to be careful about what exercise I do – but the rest?

Why can’t I look after myself ?

I’ve been aware of the answer for years, not in an overly conscious way but aware nonetheless. It is because I don’t deserve it.

Logically, that’s nonsense. I get it and my mind is giving all the logical responses like anyone reading this would be giving me. I get it intellectually.

Emotionally, it’s a different story. Is it because of the fall out between me and my flat mates at uni? Is it because of how S and I ended? Is it because since day dot, I have felt I was out of step with the rest of the world, a list of little misunderstandings that add up to Autism? I can’t do or sense the things “normal” people know and do so I always feel slightly wrong.

How do I work through that to feel myself worth the effort?

I don’t know but although it was said several days ago, “you’re right where you need to be” has struck me very powerfully this morning. I do not know where I am going or how to get there but for now? I’m where I need to be.

Reconnecting – University

Right well, I think I have noodled this enough and need to just get it out.

Uni was a difficult time for me. In hindsight, I can see why but at the time, I had no idea. The first two years were fun, we had a great time and I made some very good friends – mainly Sarah, Jennie and Ruth, my flat mates, and we had a wider group including Darren, Stephen, GD, Doug and others. We were typical students – bit of studying, lots of cheap alcohol.

Stephen deserves his own entry, and there will be one for him. Thinking of him and what happened between us and how I ended it has been uniquely painful. The thing about re-reading this stuff and reconnecting that i hadn’t considered is that I would feel again the feelings that i had at that time. I remember the excitement of getting together, i remember my frustration at all his cryptic comments and all that stuff.

Like I say, I want to write about him separately but it does seem as if it went wrong after we got together at the end of second year.  My diary gets grimmer and more stressed and reports more arguments. Part of this is just the tendency for me to just write when i need to get something out of my head because i don’t remember it as being unremittingly awful. I didn’t enjoy 3rd year philosophy and worried about what it would mean for my eventual degree (Classics was only available as a joint honours course). I remember Sarah had some bad essay results and took it out on me, probably because I was stroppy enough to argue back. Things deteriorated between us enough that i wanted to move out and it got to a stage where we opposed each other just because it was the other that said it. Jennie and Ruth were caught in the middle, and i sympathise now but they did say outright that they didn’t want to help on my side because then Sarah would take it out on them too. I didn’t ever forgive them for that and I felt utterly alone.

We stayed together in that flat throughout 3rd year and though i wanted to move out at the end of third year, I didn’t get my act together and Ruth finally told our landlord we’d stay. I resented that massively but that wasn’t fair, i see now, as i had given them no choice by not making a decision.

Also, towards the end of third year, they announced they would be launching a single honours course in Classical Civilisation which I really, really wanted to do. So after some confab, I decided to change course and repeat the year.

Fourth year/3rd year II was better, course-wise. I loved the subjects and the study. Friends-wise it wasn’t any better.  Ruth ended up just doing an ordinary, 3-year, degree and that meant that during 4th year, we were liable for 50% council tax. This really was the death knell to our tattered friendship as it was so, so stressful. Ruth got 25% discount as she was a low earner and the three of us got 25% because we were students but it left us responsible for the rest and we were all broke. I also remember my anger when we all moved at the end of the year and I lugged boxes and boxes down the stairs for my flatmates, only for them to turn around and refuse to help me when I moved.

My final year was weird. I had a university flat with Vicky and Richie and it was fine, we got on alright but all the people i had gone through uni with had graduated and moved on and it was all different people in Classics. I made friends ok but it wasn’t the same.

The council tax thing rumbled on. We’d paid our dues for the first year we were liable but half way through the second, they all graduated and moved out. Jennie and Ruth stayed in Glasgow (I think. I remember where Jennie was as she shared a flat with Stephen and Darren but I don’t remember where Ruth was) and Sarah went back down to Essex so they didn’t feel they needed to pay. This upset me greatly, not least because the council would go after whoever was easiest to get hold of for the unpaid bill but also because, it just seemed so wrong to me to leave it undone.  The upshot was that there was an awful row between me, Jennie and Ruth. An awful, awful row. It was horrendous. All I could do after that, to protect myself from the council was to pay my share and give the addresses of the others to the council. I believe one other person paid their share and i suspect that it was Sarah but I don’t know.

It is clear to me now, just how badly my autism affected my friendships and my understanding of things but then I had no idea. Obviously as an adult, I can look back and see where i went wrong, and where others went wrong but I couldn’t see that then. I have felt like a failure my entire life for not having a group of friends from my uni days.

Mum and dad always had a strong friendship group from university and, in my last few weeks of reading, it has come clear to me that I have modelled my life on theirs – they met at Uni and were together throughout their lives, they had a strong friendship group and mum studied and loved Latin so i became a classicist. I put tremendous pressure on my relationship with Stephen and put up with more than I probably should have because i expected to meet my husband at university. I have felt like a failure for not carrying a friendship group forward because they did. I did classics because mum was an arts grad, it never occurred to me that i could be scientific through school and later university. It never occurred to me that my life could follow different lines and still be perfectly successful. It never occurred to me until now! Of course none of this was part of any conscious thought process or decision on my part. Its only now that i can look back and see why I did things.

Do i miss my friends? Yes actually,  I do. I miss the friends we were at the start. I have found them all on FB and they seem to be doing well from what little you see on strangers’ profiles but none of them want to friend me and that is fine. Not sure friendships 20 years dead can be revived anyway.

Exercise is bad for you!

Out on my morning walk again and again it’s beautiful- bright sunshine, birds singing but ohh it’s cold! I’m hirpling along like a 90 year old as I overdid it at a fitness class with a bunch of friends on Monday. When will I learn that my EDS body can’t keep up with normal people?! It almost hurts too much to hold the phone I am typing on! Still, no painkillers today so that’s a win.

I have a lot of new readers after yesterday’s post so welcome, I’m glad you liked it! I suspect I’ll bore you to tears but enjoy what you can! If you’re real and not a bot, please say hi and tell me how you found me?

A quick introduction- I’m Rachael, mid 40’s with a husband, two autistic kids and a daft border collie. My last remaining parent died last February so I’m working through the grieving stages and trying to support my eldest son through a total breakdown which occurred in 2018. He is unable to see anyone or leave the house or interact with more than a handful of people. He’s developed a phobia of education so he’s unable to learn in traditional ways, I have to trick him instead! I’ve left two professions -as an archivist when the 2008 recession happened and as a microbiologist when mum and ac got ill. I’m currently a photographer and nail technician, hobbies that have become jobs. I’m trying to find my way through all these things and will probably touch on cancer, death, grief, suicidal thoughts, autism, dyslexia, Ehlers-Danlos Syndrome and allergies. If any of those are triggers, I’ll understand.

I did post this on my Linked in profile, which is probably not a good thing as this isn’t a professional blog. There will be a photograph one in due course but I’m spending my days bashing my head against web design programmes and getting nowhere quickly. How, just how does it take quite so long to do every little thing?!

I’m wagging because I don’t actually have a focus today. My physical pain makes it hard to focus and it may end up just being a coffee and painkillers sort of day, a day where no decisions are made or anything of substance done.

I inventoried all my nail tech equipment yesterday. I’ve been diagnosed with an allergy to one of the main components of the first gel polish I used. My polishes now are hypo-allergenic as far as that goes! But I’m not allowed to use it on me and can use it on others only if I am double-gloved and masked. So yesterday, I joined the Coronavirus-panicking crew and bought masks!

I don’t know what to do though, sell up or keep trying. My current brand leaders have loads of folk with my allergy using their products successfully but is it worth it? I honestly can’t focus on two businesses anyway and my photography is important to me.

I don’t know, it’s not a decision for today so I am going to sign off and enjoy listening to the birds and woodpeckers for the rest of my walk.

Depression

Much to my surprise, i am signed off with depression. You think you’d know, right?

I’ve been on antidepressants for nearly 12 years and suffered on and off with it. Surely I of all people would recognise it? But i didn’t. At first i was just signed off with workplace stress. I WAS aware i was under a certain amount of stress, I was aware I was beginning to fly apart and needed a breather to get my head together but depression? Didn’t cross my mind.

Only once i had stopped work (and got over the stinking cold my immune system had been saving up), i realised that i was really pretty unwell. I felt hollow and empty and numb, like i was carrying a heavy weight around. At the same time i was panicky and anxious and short-tempered. It was like I felt no positive emotions but the negatives were twice as strong. I couldn’t sleep, i couldn’t laugh, all i wanted to do is hide in my bed and never come out. There was nothing i wanted to do and nothing to look forward to. Everything was just too much hassle.

I realised that actually, i had felt like this for most of the year. Initially due to study and exam pressure where i had had to give up everything in my life except study, work, eat and sleep. I thought once my exam was over and degree was secured, i’d feel better. But i didn’t. All i wanted to do was sleep. So i thought “Well, its taken its toll. 7 years of study, no wonder i am knackered” and i slept. But it didn’t improve. By that time (and we were busy with work and short of staff), i had long since stopped self analysing or even thinking about how i felt, i was focused on just putting one foot in front of another. Getting through the day, getting the kids to school, working hard, coming home, going to bed..repeat, repeat, repeat. Things were so hectic that i didn’t really wonder at the fact that all i had the energy and willpower to do was sleep or lie and read. I didn’t miss my photography, i didn’t miss my walks, i didn’t miss being outside. It was just the new normal.

A week after being initially signed off, i went back to the doctor with my list of symptoms and she said “Goodness, you’re nowhere near ready to go back are you?” And i am not ready, even now. Even though it has been two weeks since then. My medication has gone up a dose and initially i felt better. I have rested, i have exercised, my creativity mojo has come back (and OMG how could i have not missed it? It is the core of me). And then i woke up feeling very anxious and panicky one morning and spiralled down again. I tried to exercise. Now across from our house is some woodland bound on two sides by railway lines. I tried but all i could think of as i walked was “Would it hurt to be hit by that train?” Well yes it would, obviously, but it would be quick. I gave up on the photography there and decided to take a trip down to a seaside town near me. Running water is an essential part of my chill time and the beach always helps. Except all i could think was to wonder how long it would take were i to wade out. Would i get freaked out and regret it? Would i be a wuss and take three or four steps in before the chill drove me back and left me looking like an idiot with soggy jeans? Would i get beyond the point of no return and realise that I desperately wanted to live?

Needless to say, given that i am typing this now, i came home without trying any of this (partly because of the catastrophic effect it would have on my family, especially my sons, and partly because i can’t help feeling i’d have fucked it up) and spent a couple of days hibernating and sketching and reading and sleeping. I feel a lot better now. Not well, not by any means, but better. I am not due back at work until January and i hope like hell i do not have to go back to the doctors between now and then. I am keeping the number handy, just in case. I am still numb, still unemotional, but i feel a little less hollow. The weight I am carrying is a little less heavy.

Baby steps….

 

 

 

Let’s talk about Autism Awareness aka a rant about FB chain messages

Right. Lets talk about Autism Awareness. (A wee bit sweary!)

These cryptic “post the colour of your underwear to raise awareness of Breast cancer. Don’t tell the boys!” posts do my nut in at the best of times. They raise ZERO awareness and little better than a virus or that letter from the head of the bank in Nigeria offering you millions. They’re stupid and they’re spammy and they do fuck all to raise awareness.

This latest one has really taken the biscuit though. You know the score, someone posts a cryptic status, you click like or comment and you get a PM going “AHA! you clicked like and got caught. Now you have post one of these statements…remember its for autism awareness!

I am so livid. I really don’t know where to start. Because this sort of cryptic shite is a taunt to those with autism. Every bloody day is a nightmare of coping with cryptic statements and conversations, of living on your nerves trying to decode the messages behind what people are saying, in real time and without any innate understanding of several important forms of communication,

I cannot look people in the eye. Ever. I kind of fake it and look at eyebrows or cheekbones but never eyes. Its far too intense, I feel like the other person can see me and knows me right down to the soles of my feet. Logically, i know this is not true but…

I cannot read body language.

I have no tools to decode what you are saying to me other than my knowledge of your personality and what you are actually, literally, saying to me. And people very rarely actually say what they mean.

Imagine growing up, knowing you were different, knowing you were missing important stuff in social interactions but not knowing what or why.

Imagine being totally cut off by people you thought were friends and having no idea why or what you’d done.

Imagine knowing you are the butt of some joke because you misunderstood something but have no idea what or where you went wrong.

Imagine offending someone you actually really like by saying something the wrong way or being a little too honest. Imagine hearing stuff come out of your mouth and realising it was the wrong thing to day but unable to stop it because your social processing (which is fully conscious rather than unconscious as for most) is running ragged trying to keep up.

And that is just the social stuff. There’s a heap of sensory stuff too.

Let me describe a party to you. You know you are going to have to work hard because its a social situation and well, all of the above. You’re wearing smart clothes and you’re uncomfortable because they’re weird and not your normal. They are tight and loose in all the wrong places and that label at the back is jabbing you like a knife.

You go in the door and heat and light hit you. Flashing lights that daze you, different colours coming at you, they feel like they hit you physically. Its so hot you think you might be sick.

And then there are the smells.Everyone’s perfume and aftershave, the smells of the shampoo they used, a million different food smells and alcohol. Every one of them hitting you physically. Jab. Jab. Jab.

The noise is tremendous. There’s music and its very loud. someone over the other side of the room is kicking his chair, someone’s toddler is having a paddy, you can hear EVERY conversation going on in the room yet you cannot decode the speech of the person next to you from the background noise.

Finally, the music cuts off and someone takes to the stage to say “Surprise! We have Kareoke and everyone has to take a turn.” so now you’re thrown by the surprise ( we do not do surprise, ever, because we work on hard-learned scripts for various situations and like to know in advance which we need to use) and the fact that you’re now in a social situation that you have no script for.

All of the above sensations come at you with equal, hard, force. I have no way of filtering them out. Its very physical and very tiring.

And this is me. I have Asperger’s and I don’t suffer from it as badly as others. I can fake it most of the time. My son is far more affected and his life more restricted as a result.

You want to raise awareness of autism? Share this. Donate to http://www.autism.org.uk/ or even better, join in awareness raising campaigns they run. If you cant be arsed doing that, please just spend 5 minutes trying to put yourself in my shoes (ironically, something i am really terrible at. Its another ASD thing to be unable to imagine/envisage other persons pov).

But for fucks sake, do not share confusing and cryptic statements with about 2 seconds thought and pretend it is for my benefit. I can do without friends and contacts like that. And if you share posts from the Autism Speaks monsters who want us “normalised”, then i will delete you.

Asthma attack

I’ve had an asthma attack since the end of November and its just not getting better. I worked a whole 2 and a half days in December as I was signed off for most of it. Back to work on the 2nd on reduced hours but I am still not getting better. I have been on steroids for a month and a half and as I am reducing them, it’s getting worse again.

I saw occupational health today and she was very concerned about my health. She has sent me home as she doesn’t feel I’m well enough to be there, that I am maintaining a level of ill health rather an getting better.

So I am waiting to see the doctor again to see what they suggest. I am so frightened and stressed. I have never been this ill before, at least not since I was 2 or 3 and in and out of hospital. My work have a disciplinary procedure for absence management which goes from investigation to written warning to final warning to dismissal. I am at the investigation stage and cannot afford to lose this job.

Yet I fear that the dust and fibres in the air from the clothes is prolonging this so it’s maybe not a healthy place for me to work anyway?

It took me 2 years to get this job and my family are so screwed if I am not working.

I don’t know why I am posting this. Just need to vent I guess.