I should be washing my hair . . . Parts 1 and 2

A life of pacing with a chronic illness, ME/CFS, and the energy it takes to live a life worth living

Hello Friends,

Part 1

I should be washing my hair, but it takes SO much energy. I really need to do it though, either now or tomorrow morning. Today is the better option time wise. Tomorrow really isn’t a wise choice, and yet I sit here watching dubbed Netflix programmes trying, really trying, to get up the ‘oomph’ and energy to go do this one task.

I am going to a concert tomorrow. It’s one of my favourite ever bands, Depeche Mode. I have loved them since the very early 1980s when I was rebelling against my father’s classical music. And of course, I was building into my teenage angst phase. Depeche Mode took me gently by the hand with their initial poppy singles into the heavier rock they now play. They have a social conscience. Or at least their songs seem to, I, sadly, don’t know them personally. (They are working with Hublot and Conservation-Collective.org so that’s good)

I saw them once before in 1988 on the Music For the Masses tour. I was SO excited. A group of us, old friends from before uni, got together and bought tickets. We were going to see them in Sheffield and were all meeting in Lincoln beforehand. No online booking on those days. I saw a poster in a shop window, probably an old fashioned travel agents, that advertised tickets and coach to the nearest venue. I took a risk and bought 4 tickets, one for me, one for my brother and his girlfriend of the time, and another for a mutual friend. I can still remember the sign, handwritten like an old newspaper flyer. The friend’s train was delayed and although we got to the bus station in time the bus had already left, so we had to get a taxi from Lincoln to Sheffield. We got to the venue having missed the support act and walked down the middle aisle to our reasonably decent seats just as Depeche Mode were coming onto the stage and everyone was surging forward. Swept up with the crowd we ended up right at the front of the stage with only one or two people in front of us. Had we been on time we would have been further back and still in our seats, there would have been no way we could have gotten that close.

Photo by Jessica Christian on Unsplash

Anyway, 36 years later I have been offered, and accepted, a ticket, for free, to go and see them again in Manchester. It’s the Memento Mori tour (translation - remember you too will die) this time. Only 2 members left now. The line up has changed a few times, this time due to death, hence the tour name. Goodness knows if they will ever tour again, they are in their early sixties now. But, hey, the Rolling Stones are still going so there could be a couple of decades more in them.

It is a ‘new friend¹’ who has been incredibly generous and offered me the ticket. She has been doing good things for people over the year and I could be one of those good things. We go tomorrow. She is driving. We are sharing a hotel room. All on her. She is making a great effort to dress up; nails were painted yesterday. I’m very sure she will put me to shame. I’ve planned my outfit, black jeans, black T-shirt, boots, my black Terry Pratchett hat (maybe, this is till to be decided), 36 year old black silk fringed scarf I wore to the last concert, and my husband’s black leather bikers jacket. I stupidly gave mine away years ago. I remind myself of the Depeche Mode song ‘Dressed in Black’

And I still need to wash my hair.

I know I’m prevaricating. I’m nervous about tomorrow. About the amount of energy I am about to expend, about being with this fairly new acquaintance and having to mask a lot. (Whenever I have mentioned autism either in connection to others or myself etc she ignores it completely, it is as if I never spoke. So I don’t feel so comfortable now, and will need to mask to spend over 24 hours in a not-quite-strangers company.) She also has ME/CFS and so we bond over that instead. And our love of Depeche Mode. I need to wash my hair today otherwise if I leave it until tomorrow I won’t have the energy to attend the concert without causing an even greater crash than will happen anyway.

And therein lies the rub, I’m going to crash. I’m going to crash hard. And I’m doing it anyway. I’ve rested for days, paced as much as possible, though also overdone it mentally helping said friend with important paperwork and so crashed as well. I’m all set for resting for at least a week afterwards. It will be worth it I’m totally sure. I have to chose what is worth potentially wrecking my life for. There is always the possibility I won’t achieve previous energy levels (previous as in todays) after any crash. I could go down and never come fully back up. But I also have to live life and occasionally, just occasionally do something for myself. I decided this is worth it.

If I was going with my husband the energy expenditure would be much less. I wouldn’t need to mask, to be on my best behaviour for 24 hours.

And look, I still need to wash my hair. I best go do it now.

Part 2

I did wash my hair, eventually. And it looked awesome. I wore all black like I had decided. And the hat.

Brain May eat your heart out. I have great curls, a tad errant like me, but fabulous.

The journey was fine, I wasn’t driving, music was blasting the whole way. It was good hearing the songs, but they were loud and draining, with SATNAV lady interrupting often. This is where if I’d been with someone I knew well I could have asked for the music to be turned down, but I didn’t. This was the very start of our time together and I didn’t know how it would be received. This was part of my friend’s concert run up routine. I was being done a favour and was along for the ride, I could not interrupt her build up.

There is a harsh weigh up between what is good for me and my ME/CFS and what I do because of RSD and Autism. For my Autism I need to keep myself safe, and safe from judgement, so I need to mask. I do what I need to do in order for people to accept me, for me to fit in. mostly that involves isolating myself. Unmasking is hard and I can only do it in front of the most amazing people - my husband, a couple of very, very close friends, and my kids. It is certainly not for doing with a newly made friend and in a social setting. But it is at odds with my ME/CFS in situations like this, because I push though in order to be accepted and not cause a scene etc., but that means I use up too much energy, I say ‘yes’ when I should say ‘no’. When we ended up walking far too far to get food, even though there was a restaurant in the hotel, I said nothing. When I was asked to walk faster, I agreed. When the bar was too noisy and I needed to leave, I stayed. I hit acquiescence mode. The mode that kept me safe. The mode that I’ve been in since I was a kid. Be quiet, do as you are told, be polite, don’t make people angry. The sad thing is I don’t even know if it was necessary.

I’m not sure what I thought would happen when I was a kid? — well I sort of did, I’m kidding myself here — my father would ‘offer’ to ‘let’ us walk home if we didn’t behave. Some of the behaviours that evoked this response for me was very quiet humming of the same two or three bars of made up music (and it was good music) under my breathe (I learnt to be quiet and sing in my head). Or tapping my fingers on the carseat between my legs (I learnt to do it without noise on my palm). Or tracing the tracks raindrops made down the window with my fingers (I learnt to do it without touching the glass). Or jiggling my legs (I learnt to wiggle my toes in my shoes instead). All autism stims I learnt to squash, which meant as soon as I exited the car I span round and round and round until I fell down to regulate myself. I love spinning.

So I learnt, behave or get left behind.

Photo by Amy Treasure on Unsplash feeling left behind

At 57 it is still an extraordinarily irrational, internal, overwhelming fear. I mask as I want to go to the concert, I want a place to sleep that night, I want a lift home. I burn extra energy and put myself in a serious deficit by doing extra that I shouldn’t do. It takes extra energy to mask. I walk further, I walk faster, I listen hard and talk little, I don’t rock the boat. I absorb the extra sensory aspects no matter what. I was probably a quite bit more quiet than usual.

The concert was AWESOME. Dave Gahan loves spinning too, it made me happy to see him do it. I was sat on the edge of my seat all the time (except when I was standing at the end), completely drawn in. This rarely happens, I am often distracted and look at lights and the audience, and the patterns the girders make in the roof, and what the sound technician is doing, or the graphics on the big screens, or a lot of things other than the band. I’ve written some good poems at concerts, though never about the concert itself etc. This time though, no. The seats were high but still a good view.

View from my seat

There was a lot of audience participation, masses of singing. Lots of clapping along and clapping at the end of songs. Lots of whopping. It was a lot of fun. There was even a fan at the front whose birthday it was and the band sang happy birthday to her and gave her flowers. I managed a small amount of jiggly dancing. And some arm waving over my head (not much of that though cos my arms were sore). I was always aware of trying to limit energy expenditure. It was a good night.

But now I am shattered. And I masked SO hard. 22 hours in the presence of another being. I spent a lot of time being polite and feeling a little uncomfortable. So many people. So much extra noise, sights, and sounds. The guy next to me was lacking in deodorant and was filming a lot with his arms up. I could still smell him on my shirt the next day (I didn’t wear it).

I am now home, a couple of days later, and sat on the sofa now conserving energy. I am ravenous. This often happens when my cells are screaming out for the energy that my body can’t generate for itself. It doesn’t really help. I might have taken a week off my life. I do often wonder if that’s how it works now. Spend too much energy, and you end up borrowing from tomorrow, borrow enough and you must end up stealing from the end of your life. Is it worth it?

The question bugs me. Is it worth it? Maybe? The concert definitely was. The rest, possibly not so much. Ask me next week.

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1. I struggle with friends. I used to go full in very quickly, often because we moved so often with the RAF so there wasn’t time to go slowly. I’ve very deliberately changed that now. So my new friendship is less than 6 months old and still in the very early stages. I am very slowly getting to know them and they are very slowly getting to know me. I hold back a lot now having been stung many times. A lot of autists struggle massively with understanding and maintaining friendships.