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.

Agent Hunter and other stories

So, where were we? Ah yes, we had finished the Barbara Pym part of the narrative concerning Mr Litlove and we were moving onto the Stephen King part of the narrative that involves me.

But first! Let me tell you about Agent Hunter. You may recall before Christmas I mentioned a novel I was thinking of selling, and I probably grumbled about the selling part because it’s so not fun. Any of my blog friends who’ve been around since I started blogging may remember that we’ve been here before. Back in 2008 I started working with an agent on non-fiction ideas. Now she was a lovely agent and I very much liked her; the problem was a cultural one. I was still theoretically teaching French (though on sick leave) and undoubtedly my mindset was very academic. I just could not put a proposal together that sounded the way the agent wanted it to sound. She even sent me a proposal under cover of darkness that she thought was a good one and between you and me, I didn’t think much of it. It was very vague, very unstructured and by this point I was beginning to feel as if I really ought to write something rather than plan endlessly to write something. We drifted our separate ways, with no hard feelings but I didn’t feel much the wiser about the commercial world.

The thing about working with an agent is that it’s a very, very strange relationship. When you start to write commercially an agent is presented as the Holy Grail. Find an agent, we are told, and then you have someone who believes in your work and who will sell it tirelessly to big name publishers like Penguin and Bloomsbury. And because the ratio of literary agents to people who have written a book is atrocious, the odds of getting an agent are slim. So, even more frenzy is whipped up. It’s impossible! But you must do it! And when you do you will be validated forever!

Ah well, life is never like the movies. I had a very nice agent. She liked my writing well enough and I liked her, but we couldn’t make it work. This is because having an agent is a lot like marrying a virtual stranger with whom you’ve shared a couple of internet dates.  The splicing together of agent and writer is such a high pressure, hardscrabble affair that you never get to know the really important things about one another until it’s too late. Then of course the commercial publishing world is such a viper’s nest that every new book becomes another hurdle in the agent/writer alliance. Most of the authors I know seem to spend their time switching agents.

Anyhow, I digress. When I began looking for an agent again, I have to admit that my heart wasn’t much in it, my confidence was low and my desire to trawl through the internet even lower. So when I saw that a site called Agent Hunter was offering a trial period for an honest review, I gratefully signed up. And thank goodness I did. This site is fab. You can search it for agents who are actively looking to build up their client list; you can search for publishers who don’t require an agent at all. When you find an agent there are often a lot of helpful interviews included that tell you what the agent is looking for. I’ll pass on the information right now that the vast majority want a chilling psychological thriller with a great twist. This makes my heart sink, but never mind, we’ve established that I’m jaded. The point is that in half an hour of my time I had a list of seven possible candidates with notes about their specific requirements in terms of submission materials. Sorted!

And then, not quite. Oh dear friends, I have been up and down the streets and around the houses with this question of an agent. As good as the Agent Hunter site is, it does not have a search criteria for agents who are willing to take on the medically challenged. And I keep imagining scenarios in which I have to explain that no, I cannot charge up and down the country giving author events, and no, I cannot turn my galley proofs around in 24 hours after six months of waiting for them because the editorial department has mysteriously got behindhand. In the wild dating world of the agent, I am not at all an enticing proposition as a go anywhere, do anything kind o’ gal. I’m more your refuse everything kind o’ gal.

I had an okay January, and it was definitely a busy one. Part of it involved doing interviews for an article  with friends of mine, one a poet, one a painter, about their different kinds of creativity. This was a lovely experience with two incredibly talented women. And then we were more booked up socially than usual. Towards the end of the month I saw my eye specialist and he was pleased with me; he decided I should try to come off the medication. I skipped out of the surgery… and then found myself straight back in it a week later, with keratitis back in one eye and a stye in the other. I’d never had a stye before but it didn’t bother me. The second one that came up did. And when I developed a third, all in the same eye, I was distinctly unhappy about it. I sort of had this feeling that CFS would form an unholy alliance with the perimenopause and February was all about that. I asked my eye specialist if hormonal imbalance could be at the root of the problem and he said, for sure. Apparently changes in hormones can completely alter the chemical composition of your tear film – hence the ongoing mayhem. By this point I also had a mouthful of ulcers, sciatica and a lovely new symptom involving muscle spasms and twitches up my diaphragm and esophagus. Think that’s nothing to do with perimenopause? I found this very interesting article that did make me feel better, in a dispirited kind of way. There was much in it that made sense to me, not least because I’ve always felt that my own brand of CFS has a lot to do with my hormones.

When I hit menopause I can go get myself some lovely HRT and feel better. But until that point, which may be a couple of years off… Well, extreme forms of dating are not very appealing. When I laid this problem out to my friend the painter, she was wonderfully clear sighted about it. She reminded me that I was selling the book, not myself, and that if anyone wanted the book, then they’d have to take its owner no matter what state she was in. ‘Litlove,’ she said, ‘we are just too old to be anything other than totally honest about the people we are.’ Which I absolutely agreed with. I think a lot of my problem here is that I did SO MUCH hoop-jumping in the Cambridge University years that my spring is sprung. I do believe we all have a hoop-jumping quota in our internal systems and once it’s exhausted, there’s no going back. And then she said that maybe the book deserved a chance to have its own life as an artwork. Oh, she is one clever woman.

So I am still just about in the game, though I promise faithfully that this is the last time I will mention this book as it’s a tedious topic. But I did promise Agent Hunter their review and it really is an extremely helpful site that I would like to recommend. Next time, I’ll talk about the books I’ve been listening to.

 

 

New Shiny and News

Our Christmas Edition of Shiny New Books is live today! Do go on over and decide what you want to unwrap under the tree this year…

snb xmas

The BookBuzz section is rather a special one for me, as it’s my last. It’s been an amazing three years in which I’ve had the chance to interview some lovely writers and experience a slice of the joy that other reviewers have had for years, receiving free books through the post! And it’s been a real delight to work with Annabel, Harriet and Simon. We’ve been such a great team and I will miss our group chats terribly. But it’s time for a big old revamp, something that has to happen regularly on the fickle internet if sites want to keep up their audience and stay tempting. Annabel and Harriet will make an announcement in the New Year about the New Look Shiny, while Simon and I are bowing out as editors. Though we will keep a hand in as Editors At Large, a title I’m enjoying immensely as it makes us sound wild and dangerous, which is not something that happens to me every day.

Undoubtedly my decision has been motivated to a great extent by the fate of my eyes. I went to see an eye specialist back in September and finally understood what was happening. I have recurrent marginal keratitis, and when I looked it up on the internet, the advice was to go to the vets – it’s more common in dogs than humans, apparently. Honestly, you’d think one of these days I’d suffer from something nice and noble. Basically, the rims of my corneas keep getting inflamed and this has been caused by two perfectly ordinary conditions – dry eyes and blepharitis – that have grown out of control. It’s not serious, thankfully, although my corneas have taken a fair bit of scarring, but it is extremely tenacious. I’m on four months of anti-inflammatories, and may require more.

It would have been nice if an optician, on one of my four visits to them over the course of this year, had mentioned either dry eyes or blepharitis. It might not have got so bad.

Anyhow, I think they are gradually improving, although it is slow. In a normal day now I can read for up to an hour, look at the computer for about 90 mins and watch an hour or so of telly without annoying them too much. But it’s been the kiss of death to blogging. I am still not comfortable with posting and then not visiting you all, and sometimes not managing to answer comments. It feels all wrong somehow. And I’m not reading enough books to make a decent show of reviewing. It is so funny how things happen. After a year of not reading, I wonder if I will ever go back to the lovely long hours I used to spend at it. I have listened to a LOT of audio books, and Mr Litlove has been very good about reading out loud to me. There are two things you should know about this: 1) he really enjoys it and 2) he is dyslexic. So it can be an intriguing and hallucinatory experience, listening to the myriad ways language can shift and change under his gaze. For instance, we are currently reading a book about the occasion when the painting, The Scream by Edvard Munch, was stolen from a Norwegian art gallery. ‘And the next chapter,’ says Mr Litlove, ‘is called: “Munich”.’ Then he pauses. ‘Oh, hang on a minute. The next chapter is called: “Munch”.’ Honestly, it’s delightful and an oddly creative experience, but I wonder how much of a book changes when he reads it to me.

You’ll all be glad to know that he is doing well, and making lots of furniture. He started a new upholstery class this autumn, a much better one than the first, which is full of lovely ladies and he is the only man. He loves it, and they love him. And nowadays he comes out with things like: ‘Please can we go and visit the haberdashery above the bike shop in Ely?’ Which is not a sentence I ever thought would pass my husband’s lips. Life is full of surprises.

Trump, Clinton, the Media and Sexism

Watching the Presidential election campaign from three thousand miles away is undoubtedly very different to being in America in the midst of it all. But from here, I have to say, it’s the strangest battle I have ever witnessed. It seems to me that the candidates are being judged on radically different criteria. If Clinton came out with one of the extraordinary statements that Trump makes on a regular basis, she’d be torn to shreds by the media, but Trump seems to be bullet-proof. And whilst Clinton is digging out every tax statement she’s ever made, and even opening her medical records for scrutiny (which surely ought to be prohibited on basic privacy laws), Trump blithely fudges all similar demands. The only way I can square this is by assuming the race pits a Good Girl against a Bad Boy, with all the stereotypical reactions this engenders. If Clinton is caught out in a lie then that’s a terrible crime, as Good Girls never lie. But Trump can say whatever outrageous thing he likes, because that’s wholly in keeping with what Bad Boys do.

But what’s happening also seems to go beyond sexism and into all kinds of stranger cultural territories. I have interpretations, which may or may not be right, it’s impossible to say. But I share them with you, for what it’s worth. As Brexit has so clearly shown us, we do get the political situation we deserve, rather than the one we need.

Let’s begin with the strangeness that was Hillary Clinton’s pneumonia. Not that it was strange for her to get pneumonia – that was the only reasonable bit. People do fall ill. And I would have thought that being a bit stressed, a bit tired, and meeting thousands of people, a percentage of whom are likely to be contagious, is a good way of catching something. Clinton’s pneumonia elicited a wave of anti-compassion that must at least say something about the weird relationship we have to illness, but let’s leave that to one side. I heard it described as ‘a poor campaign strategy’, which raised my eyebrows by a few inches. And then apparently the problem was that Clinton had tried to cover up her illness and not admit to it. So she lied, and this is all kinds of wrong.

Which, if nothing else, does indicate that the reality of being Hillary Clinton in the here and now is something no media pundit wants to take into account. I mean, just think about it. There you are, running for President of America with a massive schedule lined up, and you start to get ill. What’s the first thing you’re going to do? Hold a press conference? Of course not; you’ll do what anyone does in those circumstances. You’ll try to push through, make the least of it, look as normal as you possibly can and not breathe a word of complaint. You’ll do it for as long as you can because you don’t want to let anyone down, and anyway, tomorrow you may feel better.

That’s real, right? That’s what real people do. I can’t shake the feeling that if Trump had done that, he’d be hailed as a hero. But women live by different rules, and women really aren’t allowed to get sick. There used to be an advert on telly here in the UK for a painkiller or something, that featured two women, pushing kids in buggies, who meet in the street. They hail each other and stop to chat, discussing their busy day in prospect. It’s clear they both have stinking colds. Then they ask about each other’s husbands, who of course have the same cold but are both home in bed. See, this is what women do: they push through cheerfully and determinedly. There are no other acceptable options. This is the fantasy about female strength, and women are relied upon to make that fantasy real.

It’s no coincidence that the women on the advert are mothers. When children are little, they require their mothers not to be real. They badly need a wholly reliable presence: normal, calm, reassuring, focused entirely upon them. Good mothers do not bring their personal worries, problems and fears into the mothering realm. And I fear that the consequence of this selfless mothering is that women are forever more forbidden a chunk of their reality. They are not real people first and foremost; they are functions first and foremost.

I think it’s also a hangover from all those centuries of women being primarily wives and mothers, or else ornaments and trophies. That objectification joins up with the relationship we all had as small beings to our mothers, and the reality of being female, which includes, say, menstruation, illness, ageing, and feeling totally used by our families, becomes obscene, rather distasteful and best screened off from view. If Hillary Clinton lets slip her reality, shows her human weakness, then it’s more distressing and appalling than if Trump does it. There’s something wrong about a woman not fulfilling her function flawlessly, whereas men are allowed to be real people first, and we admire how they overcome their reality in their achievements. I think this is why men get made such a fuss of if they change a nappy or feed a baby. That man, with his important personal concerns and interests, actually took time out of his real life to do a menial chore! How amazing!

What gets more depressing is how women climb onto the objectification bandwagon in this way. There is a strong tendency for women to fight and compete over their functionality. Again, motherhood is an excellent example for this. It has become completely hamstrung by a complex and impossibly demanding set of rules, and women will be the first to call other women out on not abiding by them. In fact, there’s a tendency for women to have rules for other women in just about every situation, and to judge very harshly other women whose rules may be different. If there is a third wave of feminism that is in any way effective, it will have to tackle the brutality that can arise between women whose rules and opinions do not cohere. Note the way that men back each other up, note the basic fraternity that always means they forgive each other every flaw and petty crime. They have terrific compassion for other men involved in the business of being men. Women could learn from this.

It does go some way towards explaining the extraordinarily kind attitude that seems to prevail towards Trump and his little ways. Every time I switch the radio on or turn to the internet, it seems that Trump is getting publicity for something terrible and untrue that he has said. But the whole tenor of the reporting is genial amazement. Is it that Trump goes so far beyond the boundaries of truth and acceptability that no one knows what to make of him? No one can find the words to describe what he is doing and so he can’t be called out on it?

Well I’m prepared to give that a try. Between you and me, I think that Donald Trump may actually be mentally unbalanced. Not as a joke, but as something that it might be a good idea to worry about. And I say this on the basis that he seems incapable of distinguishing inner reality from outer reality, which is the prime factor in all psychosis. For instance (there are a wealth of examples), his recent claim that Barack Obama is the co-founder of ISIS alongside Hillary Clinton. Even when clearly directed by his campaign managers to claim this statement was somehow sarcastic or a joke, he could not stop himself from endorsing the reality of it (as he sees it) again.

Freud was the first person to identify the disparity that exists between our inner psychic reality and the world out there. The two are not the same, because our subjective perspectives, an amalgam of hopes, fears, memories, associations and prejudices, colour everything we look at. So, for example, I remember watching an encounter between a graduate student and the Head of Department in a corridor at the Modern Languages Faculty. They stopped and spoke to each other for a moment, then moved on. The graduate came up  to me and said: ‘Well I am SO glad you were here to witness that! Did you see the way she laid into me! I can’t believe she just did that!’ And the honest answer from me would have been, no I did not see that happen at all. It looked like a perfectly ordinary and featureless meeting to me. But the graduate was unshakeable in her convictions. Her hopes and fears had got in the way.

And inner reality is a very emotional place. Nothing is stored inside our heads without some sort of emotion attached to it. We don’t even know that clouds bring rain without some sort of tagging system saying #goodthing or #badthing. It’s a terrifically complex system. But at our most sane, we are aware that some events trigger us more than others, that mood affects our judgement, that we have sacred cows and terrible fears and a stealthy tendency towards crazy thinking. However. We are deeply protective of the crazy parts (probably because they carry very tender emotions along with them) and so if that crazy thinking gets validated out in the real world, it has an unusual force to it. That graduate student longed for me to say, ‘Oh yes! My God! What outrageous behaviour by our Head of Department!’. Similarly when the apocalypse comes in the specific form of our private fantasy of apocalypse, we will be packing our bags to move to higher ground while repeating on a loop, ‘YES! I knew I was right to worry about that! Didn’t I say so? Haven’t I been saying so all along? I am justified at last!’

This is what the media has been doing for donkey’s years now. It plays on our crazy thoughts. It encourages and validates them. It blows on the embers of hatred, prejudice and envy. And politicians, seeing how effective this is, how much it makes people pay attention and feel engaged, have jumped on that bandwagon for all they are worth.

So to my mind, the media don’t know how to tackle Trump because he is their creature. He is a walking manifestation of every item of media hysteria and paranoia that has festered in an anxious mind. Donald Trump is what happens when tabloid newspapers have an orgy.

I imagine all the journalists out there, watching Trump go to work and thinking to themselves, if this guy becomes President, I’ll never have a slow day again. On Monday, he’ll create new laws that mean any woman not matching his criteria of physical acceptability must remain on house arrest. On Tuesday he’ll drop a nuclear bomb on North Korea. On Wednesday he’ll say that anyone with Hispanic ancestors within the previous century has to be deported. My career will be made!

What we wish for is as dangerous as what we fear. When will we learn that we are terrible at knowing what is good for us? It’s a good thing that outer reality is not the same as inner reality – life would be unliveable if it weren’t! It’s a relief that our fears come to nothing so regularly; moderation, good sense and reason are our salvation. Why do we not hold men up to the image of the Good Father the way we demand women be Good Mothers? The Good Father is a steady, calm reality check. He thinks before he reacts. He encourages fairness, justice, and honor, even when they go against powerful emotions. He is courteous and understanding. Wouldn’t it be good to expect a male President to embody the best of masculinity? Wouldn’t that be reasonable?

I suppose my ultimate point here is that we hold men and women to very different standards, and that is more than mere sexism – it arises from deeply-held archetypes that promote extreme reactions. Isn’t it about time we looked long and hard at that disparity?

 

[I am so sorry to have been away yet again – more issues with my eyes, I’m afraid. Anyway, that’s a long story for another day! In the meantime, I just had to get the above off my chest…]