Notes From the Bunker

23rd March 2020

The first thing I said to my CBT therapist on our skype call last weekend was: I’ve picked one hell of a time to deal with my health anxiety. Henry was pretty ho-hum about this.  I expect he was thinking the same sort of thing my old therapist, the psychodynamic one from almost a decade ago, used to say about issues I shied away from because they seemed too hard: you’re dealing with it all the time anyway, so you might as well really deal with it.

And we are dealing with it all the time. In our village the shops have been empty and every day is a Sunday. Things that people would have said were impossible to change have changed almost overnight. We are seeing already the best and the worst in people. One finds out quite fast the best and the worst in oneself. Mr Litlove and I are, I think, fortunate, in that we both work from home and our village is very supportive. And yet I find myself in a state of constant partial stupidity because my brain is so busy assessing every moment for threat. A few days ago I decided to spoil us with watercress soup and put both my precious bags of watercress in with a tin of coconut milk that I then discovered had expired in 2015. I caught myself just in time as I wrapped my Mothers’ Day gift in paper that said Happy Birthday.  And I keep thinking to myself that I could manage all this better if only the world would shut up about it for a bit.  There is constant chatter and no real news and for people like me who are anxious and readily self-isolating, far too much frightening stuff designed to rein in the cavalier and the rebellious.

One of the things that upsets me foolishly this time around is being 51. The last pandemic, good old swine flu, was back in 2009 when I was only 40 and happily out of any real risk category. And swine flu turned out to be very mild for the most part and more hype than bother. I remember being in the porters’ lodge at college when the nurse came in with the most enormous box of thermometers. When we asked her what they were for, she said she’d sent an email around all the students telling them that they absolutely had to bring a thermometer to college when term began again and these were for all the students who thought that message didn’t apply to them.  Well, plus ca change, but even while it was happening, we could joke about it.

When my good friend from the university dropped by last week to bring me some paracetamol, bless her, the situation there was quite different. Her husband is one of the key figures in the college organisation and he was having a huge headache reducing down to a skeleton staff while trying to get students home who couldn’t find flights out of the country. We stood about three meters apart while my friend lobbed the box of tablets to me. Her first attempt hit the wall of the house. The second made it through the door, I stretched out my hands, and watched it sail over them and into the cupboard under the stairs. Moral of the story? Don’t make academics play catch. But there was some good news, in that while the virus was going through the remaining student population fast, they were suffering only mild symptoms and were soon back on their feet. I think about that, how the virus affects people on a very wide spectrum, as part of my rule that any catastrophising must be balanced by a positive thought.  Good things come out of bad things, because only bad things force us to make real change. So whilst it feels mad and disastrous at the moment, we must keep one eye on what positive change we want to come out of all of this. If I am forced to improve my anxious thinking habits, then that would have a significant and lasting impact. It’s worthwhile trying.

So where have I been these past months, you may wonder? Well back in October I was sent for a routine medical test, and over the fortnight between learning I had to have it, and the date of the test, I discovered that my medical test phobia had been growing in the dark and was now a bit of a monster. Long story short, I didn’t have to have the test in the end. But then there were a couple more (minor) incidents that provoked my health anxiety and each one brought with it greater and deeper angst than the last. By the time Christmas rolled around, I didn’t need the excuse of a minor incident any more. I was having white nights of overwhelming anxiety, sitting downstairs too agitated to be in bed and just waiting for the dawn. It takes a long time to come in midwinter.  I wanted to get past it on my own, but in the end I rang my GP who allowed me to increase the anti-anxiety I take for four weeks. And he said it was time for some therapy, so here I am a few months later with online Henry, who likes to tell me I have to challenge my thoughts with evidence – as if reason had any real purchase on the irrational. I’ve had one bad virus that made me debilitatingly ill for well over a decade. It’s quite hard to be sensible once something like that has happened to you.

But, and here we come to the useful part of this post, I am beginning to see properly for once that when you are up against it, you must stop faffing about and actually attempt the difficult things that scare you. I am very guilty of thinking I can both change and stay the same. As someone who loves their routines and the old familiar and accepts powerful default settings, I have the biggest tendency to sit around waiting for everything just to come right. And this is not what happens. I watch what is going on in the UK and I can’t help but wonder how long it will take us to cotton on to the fact that we must change. That for the next three or six or more months, we cannot simply transfer the lives we were living into these strange new boundaries. How much time will we waste in frustration and resentment before we realise that we must take hold of our situations and alter them radically? And that this might be an opportunity for good things to come out of bad things?

25th March 2020

I was intending to get back to this post and finish it with some sort of normal conclusion. But last night my mother was taken into hospital. Not with the virus but with confusion following a migraine. She didn’t know her name and couldn’t understand simple questions that were put to her. She is currently still there and being tested very thoroughly with, thankfully, nothing showing up yet. So we know her general health is good, but the confusion remains an enigma. A special shout out to the doctors and nurses at Colchester hospital, who are taking such good care of her despite being in the middle of the corona virus situation. These people are amazing.

Eventually, tackling health anxiety in the midst of all of this will seem funny. Haven’t got there yet but I travel in hope.

I Will Embrace Self-Help, I Will

When the kind publicity assistant sent me a copy of Physical Intelligence by Claire Dale and Patricia Peyton, she probably had no idea she was sending it to two of the sorriest specimens for self-help you could imagine. I was really keen to read the book, which claims that ‘the active management of our physiology – the ability to detect and strategically influence the balance of chemicals in our bodies and brains’ is within our grasp. This sounded like good news to me. The approach of menopause has hit me hard and my CFS has been back to the level of nuisance it was a decade or so ago. I’m clearly doing something wrong. In fact, my dry eye syndrome has been so awful that I had to ask Mr Litlove to read the book to me, and Mr Litlove and self-help… well it’s not the most obvious combination. Mr Litlove is fit and healthy and if a parallel universe existed in which he sang karaoke, he’d be up at the mike belting out Gloria Gaynor’s immortal line, ‘I am what I am and what I am needs no excuses.’ So the two of us together would have every experienced teacher rolling her eyeballs – one student eager but hopeless, and the other competent but deeply resistant. Would the book be equal to the challenge?

The book’s basic premise is that our responses to daily life are governed by a cocktail of eight chemicals, each of which has a signature feeling. We’d probably all recognise adrenaline and its feeling of excitement or fear, testosterone’s feelings of power and control, serotonin’s happiness. But there are others that are equally important and less well-known – oxytocin, for instance, which gives us a feeling of belonging, DHEA which governs vitality, and cortisol which creates the feeling of anxiety. The authors argue that the right combination of diet, exercise and CBT can be used to manage these chemicals as they ebb and flow according to the situations we find ourselves in.

The book is organised into four sections – strength, flexibility, resilience and endurance – with all kinds of different exercises designed to promote these vital qualities. So for instance, in the section on flexibility, there’s an exercise called ‘Relationshift’ which frankly every person in the UK ought to be made to undertake before we have to hear another thing about Brexit. Where this kind of loggerheads conflict occurs, the kind that has coagulated into a battle of wills, it’s important for both parties to be able to see the other side – such a shift reduces the sense of threat that has immediately been triggered, and sets in motion the chemistry of trust which can heal the breach. Name your emotions, the authors suggest, and be specific about the physical feelings that accompany them, breathe to stabilize emotion, and then consider what exactly is under threat here (they suggest possible threats to control, ownership, achievement, harmony, security, certainty, freedom, creativity or status, which is the sort of list one ought to carry around all the time because it explains a great deal). Then shift your perspective and imagine standing alongside the person with the opposing viewpoint and see how it looks. From this point of view, you might be able to come up with solutions or suggestions that benefit you both and meet the different needs. It’s not as touchy-feely as you may think, because thinking through a problem like this actively reduces cortisol (threat) and increases oxytocin (belonging). Minds, bodies and behaviours are all tightly linked.

So you get the idea. Unsurprisingly, there was much I struggled with. In the strength section, the authors suggested cheerfully that crunches, planks and squats were all you needed, which are the kind of exercises that even when I was in full health I would have considered a form of sanctioned masochism (one of the authors is a dancer and choreographer and yeah, proper dancers love that sort of stuff). And the exercise that I was hilariously bad at – in Mr Litlove’s estimation – was one called the ‘winner pose’. where you stand with arms and legs outstretched like a starfish. Apparently this builds confidence and power and should be used after any achievement to prevent the chemical high sort of collapsing in on itself. Well, I just can’t seem to manage it. I could do a sort of jazz-hands-by-my-face thing, but anything more brought about a feeling of such intense absurdity that I couldn’t keep it up. Mr Litlove, who has way more testosterone than any one person needs, would throw himself into winner pose every single time our paths crossed in the house, yelling ‘C’mon, Litlove!’ I pointed out that the authors of this book did not envisage their exercises being used by husbands to taunt their wives, but alas that did not prevent him from telling our son when he visited over Easter. And our son, who is training to be a therapist, immediately began asking why it was that I should feel silly? And did feeling silly matter? There’s nothing quite like one’s family piling in with the advice to make the appeal of self-help grow stronger. Some things are best done alone.

Some people, however, cannot be helped. I am sorry to say that Mr Litlove did not see the light. He read the section on procrastination out loud – and goodness knows he could use some advice here – while mentally singing la la la la la. I could see him doing it. You know that fur men grow in their ears as they age? I’m coming to think of it as a kind of enchanted forest designed to prevent any alternative point of view from entering. But the authors of the book had evidently seen us coming. They sensibly suggest that you should devote a month to each section of the book, picking out a few of the tips and exercises and ‘habit-stacking’ them, or trying to attach them to other habits you regularly practice.  And even Mr Litlove found one exercise at which he nodded approval and said it was really good. This is an exercise for when something dreadful and undesirable gets thrown at you. You begin by feeling the force of your resistance and saying – shouting if you want, punching the air – I won’t! I won’t have this! I don’t want it! And when that energy is worn out, then you start saying, I will take this on. I will handle it. Could there possibly be an allegory in this for Mr Litlove’s relationship to self-help? Ah well, time will tell. But I will definitely be keeping the book within easy access as there was much intelligent support to be found in its pages.

My Last Essay And Other Stories

Well, the middle of August is not the best time to pop up in the blogworld after a lengthy absence, but the lovely Numero Cinq online magazine is coming to a close and I have a final essay in it on Doris Lessing. I’ve had a wonderful time writing for my gorgeous editor, Douglas Glover, who is also an excellent writer himself (do check out his story collection, Savage Love, it’s incredible).

Mother Tongue | On Doris Lessing – Victoria Best @Litloveblog @NumeroCinq555 https://t.co/VdEH7nrzAk pic.twitter.com/aDcS1nkztb

— Numéro Cinq (@NumeroCinq555) August 13, 2017

And I also promised a catch-up, if there’s anyone out there who would still like to catch up with me. Basically, I haven’t been blogging because I still have recurrent marginal keratitis. I seem to have a genius for developing conditions that can’t be cured but only unreliably managed, and despite my best efforts with every eye gel, drop and lotion on the market, it still flares up, especially when I read. So I hope you’ll understand that I haven’t been around visiting blogs because a) the reading is a bit much for me and b) it’s sort of depressing to hear about the lovely books everyone is reading or looking forward to reading, etc, when I’m so restricted these days.

I got excited a little while back over Manuka honey, after finding an account of a man who’d had my condition for four years, lost his job because of it, and tried everything to fix it. Nothing worked until he bravely attempted an experiment with the honey, putting it directly onto his eyeball. How he managed this, I do not know, as I bought an eye drop with a small percentage of honey and to say the red fire ants are consuming my eyeballs when I use it is an understatement. You should have seen the comments – so many people desperate for a cure who had had marginal keratitis for up to 25  years, all hopeful for the first time. I’ve been using it for six weeks now and maybe it’s helped a bit; it’s hard to tell and there’s certainly no great change or return to stability. But I will persevere.

In more positive news, Mr Litlove launched his furniture-making business at the start of July over the course of two Cambridge Open Studios weekends. He had a terrific response: on the first weekend we had just under a 100 visitors to his workshop and the little gallery we’d set up. The second we roped in our son for reinforcements and had somewhere between 60-70 visitors which was definitely more manageable. Since then he’s done well with orders and enquiries. He’s currently making a desk and chair, with a shelving unit, coffee table, eight chairs and a table and another table lined up, a possible further six chairs in the pipeline. So he’s really happy.

As for my novel, well, it’s been a very odd experience. I did well to begin with in my last submission round at the end of March. Four agents requested the full ms. One backed out almost immediately but that was fine as she was a non-fic person standing in for a colleague on maternity leave, and I wasn’t sure how that would work anyway. But then the next three just went quiet and four months later, I hadn’t heard a thing. One finally turned up about two weeks ago with a no, which I was expecting after all that amount of time. The other two, still not a peep. I mentioned my experience to the online writing group I belong to, and one woman replied to say that her last submission round came up with 10 requests for fulls. Of those, there were seven rejections (that took 6-10 months to arrive), two r & rs (not sure what this is but think it must be rewrite and resubmit), and one whom she had not heard from despite numerous prompts. She had finally saved up enough money to get a professional report on her book and now felt she had a good direction to take it in. Two years after submission.

I admire her grit enormously, because people, the timescale here! I don’t think I have it in me to stick with a novel for the two, three, four years it must take anyone to find a home for it. In the four (almost five) months of agently silence, I have fallen out of love with the old novel, started another that’s now much more interesting to me, resurrected a non-fiction project and have joined in with two friends on an interdisciplinary artwork that should be sheer pleasure. Maybe something will come out of these things and maybe not, really who knows? The system, such as it is, for turning professional with art, seems to me hopelessly overwhelmed to the point of brokenness.

But I don’t want to self-publish novels either. That’s just another way of dropping your work into an ocean of verbiage from which little is ever distinguished. Unless you are some sort of marketing guru, that is, and I am not. So I don’t know. I suppose I keep enjoying a writing life, and try not to worry too much about a writing career. That works better some days than others, of course.

 

 

When CFS Meets the NHS and No One Wins

So, last week was an unusual one for us because Mr Litlove was unwell. I always find it intriguing when he falls ill, because I get to witness what happens when a healthy person goes through a virus. Mr Litlove is a stoical type on the whole, but being ill makes him anxious and miserable, especially when, as in this case, he has an unpleasant symptom like stomach cramps. Then he struggles as anyone would not to make them worse because they are unfamiliar and unpleasant and causing him some concern. But the moment that those symptoms start to abate and he begins to feel better, I can almost see him overlaying the diminishing symptoms of illness with his memory of good health. He’s only been away from it a few days and now it’s a template he can hang onto, drawing himself nearer to normal with the simple confidence of its being his natural and typical state.

These things interest me, because the experience of chronic illness is so different. Last Friday was ME/CFS Awareness Day, apparently, and thinking about what it might be useful to make people aware of, it’s the effects on a person’s soul (if you like) of ongoing illness that are so often misunderstood. When you have an illness like CFS, you are at the mercy of a lot of symptoms which, if suffered in isolation, as Mr Litlove suffered some of them, are quite normal and readily overcome. But the effect of CFS is to hold you hostage in illness and therefore also in that anxiety state, with symptoms refusing to go away, and new ones popping up all over the place, and no diminution to give you hope that wellness will return. As the days stretch into months and then years, you forget what normal looked and felt like. You have only memories of illness and fear and they increase every time some fresh hell occurs to you. Anything stressful is that much harder to deal with because the inner ‘pint pot’ that contains stress is already half full. What kind of a monster would I have been if I’d told Mr Litlove that his stomach cramps were all in his mind, and that he should stop whining about them and just manage the best he can? And yet that’s what a lot of CFS sufferers get told, and mostly from the medical profession. Oh, doctors might couch it in more neutral terms, but often with the force of their indifference, it’s what they imply.

I last saw a GP back in February with the usual range of things that were not in themselves worrying, but were dragging me down because they came all at once and hung around far longer than necessary. I had the throaty/chesty-thing I’d caught the previous November that was still recurring (mostly gone now), styes in my eyelid (still got those), and a range of perimenopause symptoms which were making the CFS worse (they’re not going anywhere either). The doctor told me that these days they ‘didn’t think CFS was all in the mind anymore – there’s definitely something there.’ But that ‘no one can cure you so don’t believe anyone who says they can.’ Just pause for a moment here and consider that I have had chronic fatigue syndrome for almost 20 years now. I lost an excellent career to it and live a much reduced life; I’ve visited my son in London once in the four years he’s lived there; I have all kinds of skills I would love to contribute to my society but cannot. And this is what the doctor thinks to say to me? That I should give up on the thought of getting better? (I relate her words to you verbatim, with nothing added or taken away.) In fact, there are things that you can do to help with CFS, but the NHS is about 15 years behind, and the tactlessness, not to mention unhelpfulness, is quite breathtaking. I must admit that I was annoyed, and I felt determined to make the NHS do something for me. I’ve never complained to a doctor about the lack of help or support in all these years, or demanded testing or any form of possibly experimental treatment. I really felt they owed me.

However, squeezing something out of the system is not easy. I asked if I could be referred to the CFS centre at Peterborough (about 30 mins away), but the doctor refused on the grounds that I was probably doing all the things they might suggest already. Which was pure assumption because she asked no questions. So then I asked whether I could have CBT counselling, which I had seen advertised widely as a new NHS service. The doctor was not optimistic but said she would put my name forward. Naturally nothing happened, and I presumed that the doctor had forgotten about me the moment I’d walked out the door. So imagine my surprise when an appointment for an ‘assessment’ came through last week.

The assessment was an other-worldly experience. I drove to the far side of the city and found, in the middle of the wilderness beyond the outer ring road, a dilapidated collection of buildings that held the breathless silence of a ghost town. It was as if I’d stepped back in time to 1955 and been sent to the ramshackle remains of Bletchley Park. Half the buildings were derelict with broken windows and overgrowing foliage, as I found in my tour, having taken a wrong turn which proved impossible to undo. I had to exit the complex and come in at the front again. When I did locate the building I required, it seemed completely empty. Eventually a young woman came to find me and take me to her room. We passed a number of rooms off a corridor, some set up like classrooms, others just empty spaces, but everything seemed decades old and abandoned. However, something was working: the heating. According to the young woman, the therapists had been freezing all winter, asking if the heating could be put on, and now that the weather had finally warmed up, someone had flipped the switch. In consequence I felt I was being cooked. It was so hot in that room that I actually had to ask if I could leave and walk up and down the corridor for a moment. Really, it was almost unbearable.

But we sat and sweltered through an hour of questions. I had gone in asking if I could receive CBT for my phobias. In decreasing order I experience quite extreme anxiety and fear of: medical treatment, travelling and socialising. The latter I’m not exactly afraid of, but I find it exhausting because so often being social means a certain level of performance. By the time I left, we had agreed that I would receive CBT for my phobias. The only ‘decision’ I’d made was to have this CBT online rather than one-to-one, so why I’d needed to be assessed, I had no idea. In retrospect, I suppose that the NHS waiting list for treatment is so long that an assessment is required to see if you’ve become a risk to yourself since the initial referral. If I’d wanted one-to-one treatment, I’d have had to wait another eight weeks. I have to say my heart went out to anyone who wanted to use this service who was really at the end of their tether. It would be enough to push you over the edge.

So I left the tropically heated ghost town behind me and returned home. A few days later I was invited to sign in to the service and having done so was instantly sent an online questionnaire to fill in that was essentially all the questions I’d been asked in the assessment. This was to ‘match me’ to a therapist, clearly not the young woman I’d met, who was also clearly not able to pass on the details I’d given her (though I should point out that she was very nice and doing the best she could under trying conditions). So this is the NHS: hobbled by administration, cumbersome and complex and slow, with the resources that make you think you’re living in a third world country. There must be better parts of it than I’ve seen this past week; here’s hoping I’ve just had a less-than-ideal experience.  I mean, my normal experience of therapy has been to ring up a therapist, have a chat on the phone and then make an appointment. That’s it. Well, I guess we’ll see what happens next.

What, then, to take from all of this? Well, I suppose I’d like to send a shout out to all those suffering from CFS for the Awareness Day because it’s a pig of a condition that still has a lingering stigma. But I’d like to to extend that greeting to anyone suffering from an ongoing chronic condition, who feels like they have exhausted the patience of their doctors, but who is anxious and fearful because managing life around ill health is all that can be done. Mr Litlove is one of the lucky ones. If you fall ill and it’s a passing thing, just a part of wellness as it were, then you are very lucky.  And if you are that lucky, don’t assume that other people who can’t do what you can do are lazy, morally weak or malingering. No one wants or chooses to be ill; it’s always distressing to experience. And finally, what on earth are we going to do about the NHS? Having come up close to it, I’m under the impression that its inner chronic fatigue is worse than mine.