Foundation Exercises (NP, NP #2)

29 07 2018

So it has been a few weeks since i have finished the “No Pain, No Pain” book and I deliberately (at least it was deliberate at the start!) didn’t begin Adam’s exercises immediately. I KNOW they work so it seems bonkers but the theory of pain outlined in the book was so against everything i have been taught – both as a sufferer of chronic pain and also as a biologist – that I really felt I needed to think about it, test it and and come to believe in it before I began. This was not because I did not believe it, despite my surface scepticism, I recognised its truth at a deeper level immediately, but because it horrified me so completely that all this might have been self induced. So I tested it. I am renovating our new summerhouse and at the minute all i have done is paint the outside. I have done it in short bursts because it caused pain in my shoulders, elbow and wrists so it has taken ages. That day, instead of managing one window as per my previous record, I told my brain it was being ridiculous and should shut up. I got all 3 remaining windows and door painted with two coats and still managed 2 dog walks that day. And the next day, I was well enough to clean all the paint off the glass on all 4 windows and the door.

So far so good. In theory i shuold have begun the exercises then but i didn’t. Why?

I don’t know really. The bit that Mhairi wrote in the book about putting things like this to the back of the queue really struck home. I am always so busy with a to do list that stretches on for a million miles. I have a photography page to update, blogging to do, about a bazillion photographs to edit, the occasional set of nails for friends, kids to look after, shopping to do, the dog to walk (twice at least) and it just seemed like too much hassle. When i had time, usually in the evenings, I was too tired and just wanted down time.

In the meantime, I have been getting sorer and my painkiller doses have been going up. Co-dydramol, Naproxen and Tramadol. Not good for me, not doing anything to solve the problem.

And it has always baffled me that I end up being my own worst enemy. It has never made sense to me and it is incredibly difficult to combat.

However, I am at rock bottom today, I was on a rocky beach in Fife on Friday and my right ankle is agony from balancing myself and yesterday, i went on a photo walk in Edinburgh which involved a great deal of walking (and a couple of pubs!). My ankle is sore, my calves are sore, my hips are sore, my shoulders are sore and my wrists and elbows are sore. I have Asperger’s so i am feeling flappy from over-socialising with strangers, my chest is tight (I have asthma) and i feel very low and depressed. Some of this is my brain being an arse, in fact, probably a lot of it is my brain being an arse but i decided it was time.

So i have done my first set and my god, my hamstrings are horrendously tight. Still, I completed all exercises. I had forgotten how queasy they made me feel at the start. And i must be the only person who actively hates the legs up the wall exercise! I find it difficult, uncomfortable, my toes get cold because of my crap circulation and it takes me about 10 minutes to get up afterwards because it makes me go all PoTSy!

Still. Step 1 done. I am now off to set multiple reminders on my phone so I will continue doing them! And, despite today’s pain, I am going to try and avoid painkillers. Taking them validates the pain as real and justified.





Fantasy Books

29 07 2018

Sara Holland – Everless (Series not finished)

Anything by Robin Hobb, Trudi Canavan, Brandon Sanderson, Joe Abercrombie, Jeff Wheeler and Sarah J Maas

Brent Weeks – Lightbringer series (Series not finished)

Jay Kristoff – Nevernight series

Naomi Novik – Spinning silver and Uprooted

Laini Taylor – Daughter of Smoke and Bone series and Strange the Dreamer (Series not finished)

Garth Nix – Abhorsen series

Melanie Rawn – Glass Thorns series

Jonathan Stroud – Bartimaeus series

Steven Eriksson – Malazan books of the fallen (Not an easy read but one of the most original series’ i have ever read)

Leigh Bardugo – Grisha series

Melinda Salisbury – The Sin Eater’s Daughter series

Andrew Rowe – Sufficiently Advanced Magic and On the Shoulders of Titans (Series not finished)

Amy A Barton – Secondborn series (Series not finished)

“No Pain, No Pain”

9 07 2018

So a year and a half ago, I met Adam, The Fibro Guy, at a meeting of the Edinburgh Ehlers-Danlos Syndome support group. Over the years, I have had many interactions with health professionals over the years and none of them, not one, spoke half as much sense as Adam did. He understood my condition, how I moved and what I needed to do to reduce pain way better than any of them.

He gave me a series of exercises which helped almost immediately and later recruited me as part of a group testing a programme of movements specifically for EDS people. The 8 week programme made a tremendous difference to me. My pain lessened, my movement was better, I could run again. It was fabulous.

But in the absence of a follow up programme I could commit to (I couldn’t afford to join a gym), I let it slip and full time work, severe anaemia, a LOT of stress and a bout of severe depression has led me back to square 1. I’m now in almost continual pain and a cocktail of Co-Dydramol, Naproxen and Tramadol. None of which I am happy to take and none of it addresses the core problem.

Adam then sent me a copy of his book, co-written with Dr Mhairi Hunter, “No Pain, No Pain: Building the foundation for recovery from fibromyalgia.” I have read it with interest and no small amount of horror.

In it, they talk about an alternative theory of pain which provides a plausible new account to oppose the classic theory of pain that we’ve all grown up with. Chronic pain, as I understand it, is not a sensation received by the body on encountering a stimulus that may cause damage but a sensation PRODUCED by the subconscious brain to prevent actions that may cause damage similar to that encountered previously. So in Fibro, the pain you suffer is not caused by tissue damage (which to be fair, has never been found in Fibro sufferers) but by your own brain being over protective.

This is fascinating because to me, it makes sense. I don’t have Fibro, or rather, the fibromyalgia pain I suffer is not as clear cut to me because EDS does include physical damage as I understand it. It’s not clear to me how hypermobility EDS and the non existent condition of Fibromyalgia interact.

There is tissue damage? Or are the physical symptoms I feel (principally very, very tight muscles) also caused by my brain? That makes a certain amount of sense in that I know my back muscles are ridiculously tight to give my body some stability, tighter than they need to be. This is produced by my brain and I have often wondered how to trick or persuade my brain to relax them a little and, to be honest, it is probably what the initial exercises I did with Adam achieved.

But my tight back muscles have caused leg, arm and wrist pain because the back muscles are unable to move enough to adequately support my limbs. Is the leg, arm and wrist pain also caused by a protection action? Or is the inflammation caused by tissue damage from repetitive strain?

Hopefully, once I have completely finished the book (I’m on part 3), I will fire a set of questions over to Adam. Maybe he can make it make sense to me.

And the horror? The idea that my own subconscious has been the cause of 8 to 9 years of chronic severe pain is the most profoundly depressing thing I have ever read. I know it’s not a blame thing, blame is rarely useful for positive action, but it feeds into my existing autistic and depressive narrative. My brain cannot navigate social issues, it cannot keep me free from depression and now it is gratuitously causing pain? How much more useless can I be?

Protected: Musings on Friendship

14 01 2018

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15 12 2017

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

22 10 2017

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 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.

Protected: Debt

2 09 2017

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