Spinal Tap and the Art of Survival

Another Spinal Tap week. You know the kind, when every time you manage to tweak your personal stress dial down to maybe a 6 or 7 (with autism in the house, it will never be below 5 unless several of us are unconscious), the Universe decides to crank it up to 11. So just as I was trying to build some order into our days, organising days out, insisting on chores and that Lily did some studying… a friend was hospitalised for almost a week. She has no family and is a single mother, which made her heavily dependent on friends to bring in changes of clothes, wash laundry as needed, bring her son in to see her. Most – almost all – of this fell to me, as it seemed very few were stepping up to help. It’s not possible to say NO to someone who is in hospital alone, scared and desperate, at least not for me. So my two have been left to their own devices – literally, computers and phones – while I’ve been driving to and from the hospital, dashing into the supermarket, collecting her son, cooking and houseworking, and still trying to squeeze in a couple of trips and activities for the summer holidays, all the time knowing that this wasn’t sustainable. Thankfully, as I write this, she’s now been released, but will still need a considerable amount of help at home; her home is half a mile away though and not fifteen miles, which makes it easier.

Several things emerge from all this. Firstly a documentary by Paul O’Grady about the working classes that I caught during the week in which he suggested that being working class was an attitude and set of values – the unspoken implication being that working class people had a stronger moral ethic about looking after each other. It had to be that way, helping each other out in times of illness and hardship, creating a web of kindness and loyalty that was the earliest version of the Welfare State. You helped each other, because you might be next in need. You helped each other, because you were up close with each other’s suffering, and one family going under could be any family going under. I’ve heard it argued that going wayyy back in history, the tribe’s hunters would share out the meat they’d caught – it wasn’t exactly easy to hoard it, pre-refrigeration. Stockpiling it or demanding that others paid a high price for it (pre-currency) just wasn’t feasible. Sharing it was not only generous, it boosted your social value to the tribe and created a debt of gratitude. If the hunter was injured or ill, it was then more likely that they would be looked after by the others. The anarchist creed; from each according to their ability, to each according to their need. Until relatively recently I’ve always believed that most people acted in this way, now I’m not so sure; a lot of people seem to be walking around wearing the attitudinal equivalent of Melania Trump’s I Really Don’t Care jacket. So; care. Help. Be kind. It’s revolutionary.

Second – thank God for the NHS. I’m trying to avoid politics on this blog, but it’s not as if politics are separate from real life. Things that our grandparents and older generations fought for are under attack again, as chunks of the NHS are sold off to private companies, workers’ rights are eroded through zero hours contracts and enforced “self-employment” for firms such as Uber, meaning that people lose the right to holidays, sick pay, pensions etc. Again, I thought that those battles had been won on the understanding that it was right and necessary to pay workers fairly, give them enough time off, look after them when they’re sick… but no, there are still too many bosses and CEOs who really Really Don’t Care and are more than willing to exploit others for wealth. I’m in despair at where our society is heading and that the fight – basically the fight to get everyone to treat each other with respect and fairness – is neverending. But in the meantime there’s a 10 year old boy who still has a mother, thanks to the NHS.

Third – if it were me that was ill, I’d be screwed. I don’t have any back up, no one to look after the kids, drive them to school etc. I really don’t know what I’d do and it’s terrifying. I will just have to add it to the list of things I’m not allowed to think about.

Fourth – I can’t change the circumstances. I can’t magic good health for my friend, a house with a parking space for me, or take away Lily’s epilepsy or ADHD. So it’s going to have to come down to changing my attitude – grrr, my hackles are up already at the thought of it – and developing better coping strategies. I’ve been complaining too much, which seems fair given the stupid amount of things I’m having to deal with, but which doesn’t actually help any. This creating a life worth living isn’t easy, particularly when the pressure keeps getting turned up, but I’m so aware of how my days have become about surviving rather than thriving, and wanting to change that. Better support systems are required – and let’s face it, we’re talking self-support here – somehow finding habits and actions that build positivity and peace of mind. I also need more downtime and mental space, particularly if I’m going to seriously start writing again; I can squeeze in the time, but my brain is too frazzled to do anything with it. Which makes it sound like I need to take up meditation. Bother. Perhaps I can transmute this into more gardening instead?

Fifth – I’ve been determined to keep up with my newfound exercise. I refuse to use the word regime. Still fitting in an early morning swim, a yoga class, a Pilates class before heading off to hospital or the To Do list. Before now I’ve had gym memberships that went entirely to waste – exercising was something I should do rather than wanted to do, and working out felt like punishment. Now, I’m treating it as me-time and approaching it gently, making it far more sustainable. I’ve still got absolutely no desire to head into the proper gym and attack the treadmill or cross-trainer, and so I’m not going to beat myself up about it. I might be the youngest in my exercise classes by a good 20 years, but hey – it’s working. Exercise is becoming my support rather than a bugbear, which is a lovely, positive shift. Along with intermittent fasting and a general reduction in snacking and comfort eating, I’ve been able to lose almost a stone over the past month. I guess this ties in with the previous point, creating support systems and positivity. Finally, I’m seeing some kind of recovery in action. Now I just need to expand that into the rest of my life…

Not waving, drowning.

7.30am. The water feels deliciously cool as I walk down the steps into the pool. The kids have been dropped off at the bus stop, and I’ve realised that rather than turning around and going back home, I could keep on driving and get to the leisure centre for an early morning swim. I’ve registered with a local scheme that gives a free swim pass to children with a disability, and to their parent/carer- it’s time to make use of it. I’m not much of a swimmer, but it’s not so much the swimming itself, it’s the noise and splashing and kids jumping in over my head, and the wet floor that brings me out in an overwhelmed, hyper-stimulated anxiety attack. At this time in the morning though it’s quiet, just me and the pensioners. I desperately want to get back into shape, feel fitter and healthier but since my battle with plantar fasciitis last year I’m nervous about putting my feet under strain. This seems to be the right answer; quiet, calm, gentle. My old-lady breaststroke style of swimming is entirely fitting here, fast enough to still count as exercise, yet giving me the space to iron out my thoughts and ease into the day. I begin to get excited; I’ve found something that works for me, 20 minutes of respite, of precious and healthy self-care to start my day with. Can I keep this up during the holidays when I don’t have the school run? I ask myself, feeling that the answer is still a yes. I know I need this.

I swim on the Monday and Wednesday. Friday morning, I’m tired but push myself to pack my swim bag anyway – I want to make this a habit and I know I’ll feel better for it. My membership card scans on the way in and I head to the changing room, only to hear the shrieks of over-excited kids already in the pool. I peek in and see lots of children throwing a ball around in the pool. Evidently, it’s not the early morning session I was hoping for. Back to the desk; Sorry, I’ve only just started coming in the mornings, is it on at a different time? The receptionist explains that the swim session doesn’t start until 8am on Fridays. A 20 minute wait; I decide to head back to the car to retrieve a book to read, given that the cafe doesn’t open until 9 and there’s absolutely nothing to do but stare into space in the meantime.

7.55. I’ve been reading in the car, but now put the book away and head back in for a swim. This time however, my card doesn’t scan. “Can I take a look at your card?” the receptionist asks, scanning it at her desk. “Oh, there’s nothing on your account, you need to pay.” I explain that I’m a member of the free swimming scheme. “No, that’s only if you’ve got the young person with you.”

I leave.

There are tears in my eyes as I stop off at the 24 hour supermarket to pick up something for dinner. I’m struggling not to cry as I drive home. I check the website for the swim scheme. It’s badly worded, talks of free swimming for disabled children and their Carers, but says nothing about it being only when you’re accompanying your child. I even phone up to check.

“Is it possible for the organisation to ask for Carers to be able to swim for free, just to give us some respite?” I ask.

“No, the leisure centres are doing us a favour as it is,” she answers. As if the leisure centres weren’t raking it in already, and also receiving public funding.

“But the over 60s swim for free?” I’ve heard the chatter in the changing rooms – these are pensioners who are not struggling financially. I don’t understand why they can swim for free but Carers can’t.

There’s the bottom line; I can only swim for free if I’m taking Lily. Except of course, I can’t take Lily to the early morning sessions, even if it didn’t clash with the school run; she’s far too loud, too chaotic. There would be complaints. Similarly, it’s hell for me to swim during Lily-friendly sessions; I just can’t bear it when it’s so loud and crowded, that adds to my stress rather than relieving it. I desperately need respite, and I desperately need exercise – but I will have to pay for both. If I managed to get a concessionary swim price, it would be £2 per swim. £6 per week. Over £300 a year. Non-concession, it’s £3, £9 and over £450. Our much-longed-for holiday, in other words. So while I could bumble along paying £2 per swim, I would no longer be enjoying the sessions because I’d be thinking too much about what they cost. It would cease to be me-time and become something I was paying to do in order to get fit. No longer a treat. I should be able to move money around, do it anyway – yet mentally and emotionally something has shifted in a way that’s hard to explain. Perhaps it’s because the free swimming felt like a gift, an acknowledgement that caring for an autistic child is so difficult and here was somebody who wanted to help me in some way. Having to pay turns that into Tough. Get on with it. Perhaps I’ve just reached the end of my rope, can’t take any more knock backs. Perhaps it’s anger at how once again, the people at the bottom of the ladder miss out; if you’re struggling financially then exercise becomes a luxury. Realistically, even “free” activities require money; eg a decent pair of trainers if you’re taking up running, otherwise you’ll wreck your feet.

I’m left feeling like I can’t have nice things. That the Universe has some kind of personal grudge against me, that this has been a pattern for over 10 years now; any time that I find something that makes my life easier or happier, it’s taken off me again. Just a taste, just enough to get excited, then – poof! Gone. That I want to be happy, grateful and generous in this life – but events keep conspiring against me to a point where by rights anger and bitterness should surely be the default emotions. It’s so much work to try and reverse this negative spiral – yet it’s like pushing a washing machine up the helter skelter; crazy, difficult and the minute you try to rest for a minute, it’s going to slide back down and crush you.

A few days pass. I talk to Mum, who does her best to talk sense into me. “That’s only what you’d spend on coffee and cake in a cafe, and it would be doing you good,” she reminds me.

“Yeah, it’s just I’ve taken out gym memberships before and just wasted them, haven’t gone in.” Being surrounded by no-neck muscle-grunters and perky gym bunnies is not my idea of fun.

In the meantime, my blood results come back from the GP; surprisingly my thyroid is working just fine and for once I’m not anaemic – my constant tiredness is a medical mystery. However, I’m now officially in the pre-diabetic stage. If I don’t get my weight, blood sugar etc under control then I’ll likely develop Type 2 Diabetes within the next 5 years. I’ve been wanting to improve my general state of health – the blood results are the final kick in the pants that I need. It’s back to the 5:2 plan, to cutting my emotional dependency on sugar and comfort food and to getting back into shape. Perhaps the lesson that I need to learn is not that the Universe doesn’t want me to have good things, but that it’s time to start looking after myself properly, which means being willing to invest in my health . I call the Leisure Centre.

Hi. I want to take out membership.