I went to the hairdressers the other day. Nothing fancy, just my usual colour and trim (I’m still in grey hair denial and plan to stay there forever. Eternity seems like an appropriate length of time to me).
As I sat there pondering how bloody great it was to be sat in that chair, wearing that gown, laughing and chatting with my hairdresser as she made my head look respectable again … it got me thinking back to when my M.E/POTS was severe; a time when I was housebound, often bedridden and couldn’t care for myself.
M.E can mean – shit hair
I used to take such pride in my appearance before getting sick, and now, not only did I feel like crap: I looked it too. My hair had gone from chic to shit. It was too long, too grey, and scraggy from too many split ends. It was doing nothing to preserve my sense of self at a time when I had lost almost everything else I recognised about my life.
I could only occasionally make it downstairs in our house, so making it to the hairdressers was out of the question. And even if I could, it wouldn’t have been just the travel to contend with; the entire experience would have destroyed me. It would have been sensory overload for a start – between all the people, background talking, music and blaring hairdryers – and that’s before the conversations, hair washing, cutting, drying and styling of my own hair. Uuuugh, just thinking about it was enough to send my M.E into a crash.
Life was flippin hard. I used to be so independent, energetic, full of life, ambition, dreams. I worked hard, exercised hard, and played hard. And I did it in style – wearing pretty dresses and sporting a well-manicured bonce. Yet now I could barely do anything for myself and I lived in my pyjamas (manky old ones with holes in probably. Like a pyjama-shaped metaphor for my new life).
As weeks turned into months and then years, my face had started to age and my hair was going grey. And annoyingly, to this day the grey hair is only at the front. It couldn’t have happened at the back or in the undergrowth or anywhere discreet, could it? Noooo, it had to happen right around my fucking face; the part of my head people look right at, for fucks sake.
Pete’s Pearls
During this time, my partner Pete had become my carer. I couldn’t even make a sandwich, let alone wash my hair – so Pete used to wash it for me. And he would mansplain to me how it should be done while he was at it – like I needed hair washing tips from Baldilocks and The Three Hairs. Loving, helpful and kind, he was. Vidal Sassoon, he was not. (I also talk about hair washing in my article on managing personal hygiene with M.E and POTS, which you can find here: Personal Hygiene – chronicallycraptastic.com) I was grateful for his support, of course I was. But still, I just needed something to remind me of me before M.E. I just wanted to feel a little bit nice, ya know? I wanted a haircut. Something so little meant so much to me at that point in time.
Pete had the genius idea of booking a mobile hairdresser to come to the house. Just to give me a dry cut. As much as I would have liked to have coloured over the grey and look a little more like ‘me’, there was no way I was well enough to have someone in the house for that long. Not when they’d be talking to me while waiting for the colour to set – followed by the excruciating discomfort of washing it out over a sink or the bath. Just having her quickly chop a few inches off my hair as it was (ie., dry, and probably a mess from being in bed so much), might be too much for me to handle – but I really wanted to give it a go and see. I hoped beyond hope the experience would be a pleasant one.
Preparing for Preening
People with Severe M.E need plenty of notice and precision when planning to do anything outside their normal struggle of just getting through the day. There is no room for flexibility; a sudden change in plans can cause immeasurable distress and deterioration of health for the person involved.
I’d done all the requisite preparation in the weeks and days leading up to my haircut. In other words, I did sweet fuck all in the weeks and days leading up to it. But not my usual amount of sweet fuck all, no. In order to be in the best health I could possibly hope for, I needed to rest harder than a hibernating tortoise. I needed to make sure my hair appointment didn’t come before or after any medical appointments, as activity of any sort (even necessary medical appointments) would cause a crash in my condition and leave me bedridden for days and weeks afterwards. I therefore had to spread any appointments or activities out to allow enough recovery time.
Likewise, I had to make sure I didn’t overstretch myself with interactions with my family (which was pretty minimal anyway at this point due to my health), or use too much energy looking at my phone or replying to messages. I also needed to be extra diligent in wearing my ear defenders so as to block out the sensory noise of family life. Getting dressed and personal hygiene had to take an even bigger back seat than normal. These are all things that can make a person with Severe M.E deteriorate even further if not carefully managed.
I mean, honestly. ‘All this, just for a haircut?’ I hear you ask. And the answer in a nutshell is, yes. Welcome to the world of Severe M.E people: the shittest fairground ride that I did not buy a ticket for, but somehow ended up getting a front row seat to anyway, strapped in tighter than a camels arse in a sandstorm … with zero chance of escape.
The Big Day: Part 1
Eventually, the big day arrived. Despite all my resting in the lead up to my haircut – I still felt pretty rough on the day. I was so unbelievably fatigued, my head was lightheaded and fuzzy, and I was simply struggling to function (nothing unusual there then). But I wanted to do this, so badly. Pete had brought me breakfast in bed, as he always did before he went to work because I didn’t have the strength to get up until later on. And he left me some lunch in the fridge, because I no longer had the energy to prepare food (and on the rare occasions I did, the energy it took would leave me feeling way too nauseous to eat it). It was all part of our daily routine.
I timed getting out of bed to coincide with the hairdresser arriving. It was hard, as my body just wanted to rest – but I did it. I hauled myself out of bed, struggled into my clothes, went downstairs and waited on the sofa, feeling relieved I’d managed to be ready on time and pretty excited at the prospect of finally looking a little nicer, and therefore feeling a little nicer too. And I waited. And I waited. And I started to feel nauseous and generally pretty grim while I waited; I had been waiting over an hour, and that was about all my body could handle out of bed on that particular day. Then the sinking realisation dawned on me: she wasn’t coming. I messaged Pete to say she hadn’t arrived.
Then, I cried. Because only I knew how much effort it had taken for me to be up, dressed, and ready in time. And now I was paying the price for it with my health – and my hair was still the same. I was crushed. Utter disappointment, sadness … and then anger encompassed me. As the tears fell, I wondered how that hairdresser could DO that to me?! I resigned myself to not getting my hair cut and went back to bed before my health suffered any further deterioration from my efforts.
The Big Day: Part 2
About two hours later, the phone rang. It was Pete. He said the hairdresser had rung him and asked if she’d missed her appointment with me, because it looked like she had made a mistake in her diary and not realised she was meant to be seeing me earlier that day (she rang Pete because he dealt with all phone calls and appointments for me, because I just couldn’t anymore. Literally everything in life impacted my health). He told her she had missed it and they rearranged for her to come see me that afternoon.
This just made me cry even more, because on the one hand I really wanted my hair cut that day – as planned. But on the other hand, my health was in a pretty bad way after the exertion of getting up and ready the first time. But the appointment was made, and she would be at the house in an hour. Obviously I could have asked Pete to call her back and reschedule for another day – but with the amount of planning and preparations involved in doing anything, I just wanted to get it over with. I knew my health would likely go into a crash after today anyway, so I figured I might as well make it worth my while and have the sodding haircut.
The hairdresser arrived, all apologies, and all conversation. I sat on a chair in the kitchen, with a little mirror on the table so I could see how much she was chopping off. As is natural for healthy people – or at least, people without M.E, and especially for hairdressers – she was in full chatty mode. She seemed nice enough, but it was too late; the damage had been done and I simply couldn’t tolerate the sensory overload of her talking, whilst simultaneously combing and cutting, and my brain was too foggy to process much of what she was saying, let alone process any of my own thoughts for replies – and trying just made me feel more nauseous and fatigued. I just needed the experience to be over so I could go back to bed. I explained to her in as friendly a manner as I could that I wasn’t well enough to talk. But she didn’t get it. She tried to stop herself from talking, but not for long. She just couldn’t handle the silence. So, I sat there, and endured it until she was done.
Afterwards
Afterwards, I did feel happy about finally having nicer hair. I mean yeah, it might have still been grey and un-styled, but at least my head no longer resembled an Old English Sheepdog’s testicle. I’m proud of myself for sticking it out, because despite the detrimental effect the experience had on my already terrible health – having nicer hair did give me a much-needed boost.
As expected, my health took a dip for about a week or two afterwards, leaving me largely bedridden – but I knew this would happen. Still, at least I was a bit happier whenever I looked in the mirror. Even when stuck at home in my pyjamas, just having nicer hair and wearing some perfume lifted my spirits. The little things are the biggest things when you’re housebound with M.E.
Fuck Yes or Fuck No? The Verdict
Did I ever have a mobile hairdresser come to the house again to cut my hair? No, I did not. This was definitely a one-time show. Despite the feel-good-factor after it was done, there was no way I was going to put myself through that again.
So, as far as Severe M.E and mobile hairdressers go – for me, it was definitely a ‘fuck no.’
And Now …
I didn’t get my hair cut again until roughly two years later, once my health had finally improved enough for me to try the small salon near my home. With a hairdresser who listened to me, and took on board all of my health needs for it to work. She is a wonderful human being, who years later, is still my hairdresser.
