Litlove and the UFO

A couple of domestic incidents in fact, as quirk and whimsy seem essential qualities to balance out what’s going on in the world right now. You may remember a while back I wrote about my cats using next door’s delightful garden as the litter tray from Harrods? Well the campaign of intimidation continues. When the cats come sauntering into the kitchen with a particular look in their eyes we ask them where they’ve been, and they reply, ‘Oh just next door to do a poo,’ and wink at each other. Knowing full well that they annoy our elderly neighbours, they are doing what cats do and upping the ante.

About a week ago, Mr Litlove was just closing up the house for the night when he received an emergency text from our neighbour. Could he go round because Deedee was somewhere in their house and they couldn’t find her? Mr Litlove put his shoes back on and went round. Deedee had made the first stupid move by deciding to explore next door’s kitchen uninvited, and then our neighbour had compounded the stupidity by trying to chase her out. The result was a small black cat in a big dark house, coordinates uncertain. Mr Litlove hunted about to no avail, with our neighbour expressing disappointment that Deedee didn’t come when he called (as if!). And eventually they gave it up for the night, hoping she had left the building while they looked.

But by breakfast the next morning, Deedee had not returned home so Mr Litlove waited for the inevitable call about our miscreant child, which came about 9.30. Deedee had been found preening herself behind the dining room curtains and was now in the kitchen, and they couldn’t get her our. Mr Litlove went round again and was successful, for Deedee came rushing breathlessly into the kitchen, telling us excitedly that she had had a big adventure and been very, very brave, and maybe just a little bit stoopid. Then she wolfed a huge breakfast and rolled around in her favourite places until she calmed down. Mr Litlove returned having had to do a lot of apologising. and in need ot pretty much the same kind of therapy. ‘She kept making such strange noises,’ our neighbours had complained. Well, Deedee IS quite a chatty cat but she’s only really mastered the imperative (‘Stroke me!’ ‘Feed me!’ ‘Clear my path to the cat flap!’) so I suppose she probably was hard to understand. Mr Litlove looked grimly at Dexter and said that Deedee had gone one better than him, and what was he going to do about that? Dexter didn’t reply but in his eyes there was a faraway look. We live in mild dread.

As it turns out (and this will probably surprise no one) I live in a permanent state of mild-to-medium dread. Fed up with the perfect storm caused by perimenopause and CFS, I started working with the OHC, a clinic in London that specialises in ME/CFS, and I have finally had some tests. My big anomaly lies with my cortisol level, which is off the charts in places. What was really annoying was that I felt quite good on the day I did the tests and was of the opinion that they would come back fine. But high cortisol over a long stretch of time accounts for most of my symptoms. How to solve this problem? Well, that’s the million dollar question: it’s not easy. Diet, meditation, maximum rest and peace and quiet that sort of thing. I need to gain the sort of serenity I’ve never really possessed. Suggestions on postcards, please.

I’m working with a nutritionist who is okay but a bit scatty. Before our first interview I filled in a 16-page questionnaire and wrote a medical and personal history worthy of a Pulitzer. In our first skype call it was clear she had read neither. When I told Mr Litlove he said, ‘You should have asked her if she’d like to take a moment to read through the papers.’ I stared at him and told him that was brilliant and it had never occurred to me. He said modestly that he had learned one or two little things in his 25 years of conducting meetings. The nutritionist and I are at a bit of an impasse as we must move to the next level of tests but are undecided as to what they should be. I think my hormones are all to blame and want to have my estrogen metabolism checked; the nutritionist is longing for me to have parasites (I so do not). I am supposed to get arbitration from my GP who, as a matter of professional dignity, will undoubtedly disagree with both of us. It’s too hot for any of it.

But like the good girl I am, I go to bed nice and early and lie there listening to audio books, summoning inner calm. A couple of nights ago, as I was doing just this, the most extraordinary noise suddenly erupted directly above my head. It sounded like the extractor fan had gone berserk, or an old strimmer in the loft had leapt to ghostly new life. It was the kind of noise that propelled me off the bed, exclaiming, what the hell is that? I called for Mr Litlove who normally has short shrift for the strange noises I hear, but even he found this one disturbing. He went up in the loft, where all was quiet, and then moved towards the back of the house, feeling the ceilings as the noise carried on in staccato bursts. I had just asked him if he thought it came from outside, and he had said no, when there was a knock on the door.

Mr Litlove went down and opened it and all I could hear was some guy saying he was so very, very sorry. And then Mr Litlove went for his shoes again. He called up to me as he went past – there was a father and son on our doorstep apologising because their drone had got stuck on our roof. Who could have guessed that? Apparently they’d been fitting it with new batteries when it had come to life, completely out of control, and flown madly away down the street. It was lodged on our roof and Mr Litlove offered our stepladder. He said the first time was amusing, the second time he would be shorter with them and if there was a third time, it was staying there. The father hastily promised we would never see it again. The next morning, they came back with a bottle of wine as an apology, which was very sweet and as I said, entirely unnecessary. I told them I fully intended to dine out on the story for weeks to come. It’s so 21st century to have someone at your door saying, please may we have our drone back.

Yesterday we were in the garden, trying to brush Deedee (don’t ask) when we heard the strange noise again. I looked up and high in the sky above us, twinkling in the brilliance of the sunlight, was the oddest contraption I’d ever seen, a fine metal cat’s cradle flitting about. We stood up and waved at it while it hovered uncertainly over our garden. And then it flew away.

 

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).

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.