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.

 

 

It’s Been A Strange Sort Of Week

And it began with Mr Litlove discovering a Pokemon gym right outside our house. At first, he’d thought there was some sort of youth convention taking place in the village, as we kept seeing teenage boys with their phones out walking up and down in front of our windows, and congregating by the village pump across the way. But Mr Litlove had heard of Pokemon Go while I was still in blissful ignorance. In order to test out his theories, he loaded the game onto his phone and was delighted to find that his suspicions had been correct. The first I knew of it was when he shoved his phone under my nose and exclaimed at a three-dimensional arrow pointing downwards on the map towards the place where our front door could be found.

Now personally, I might have left it there. But Mr Litlove decided that if we had a gym outside our house, he ought to be able to take advantage of it. So he began collecting Pokemon, which I confess I found very disturbing. Once when we were waiting in the car by the traffic lights, I noticed a middle-aged man turning the corner onto our road. He had a bald tonsure above dark hair in a ponytail that reached his waist. He was tall but with a stoop and a little pot belly. He was wearing glasses and flipflops and he was not looking where he was going, his gaze glued to his phone. ‘Look,’ I said to Mr Litlove. And that steadied him for a few days. But then the cox of his rowing boat turned out to be keen on the game and she helped him catch some more. Finally he reached the required level five and took his Pokemon to the gym, where apparently they all received quite the whooping. ‘It’s put me off a bit,’ Mr Litlove admitted and I am hoping very much that that is the end of the Pokemon craze in this household.

In any case, Harvey was now taking up all his attention. For some reason (he is getting older but still seems sprightly) he’s been suffering very badly this summer from hairballs (Harvey, not Mr Litlove). And when Mr Litlove had a good look at him, he found his coat was unusually matted and he is moulting like crazy. So Mr Litlove set to with the brush, despite our cat’s disinclination to be combed, removing great piles of fluff that looked like we could knit whole other cats out of them. I do stress that this is highly unusual; we’ve never needed to comb him much. But every time Mr Litlove got hold of him and started work, great clouds of fur would dissipate on the air, and I fear I might have breathed in enough cat fur to produce a hairball myself. It began to strike me that Harvey was racking up more hours of concentrated attention out of his owner than I had enjoyed while we were on honeymoon. I even asked one morning whether, if I came down with my hair especially matted, Mr Litlove would comb it out for me. ‘You’d understand if every morning you woke to a new hairball on the kitchen floor,’ he said. I believe Harvey had been sick not just on his new rowing t-shirt, but also on his Kermit chair, and at that point, a line had been crossed.

But in any case, I soon had a distraction of my own. On Wednesday morning I woke full of anxiety after a nightmare in which I had walked into a familiar room to find it full of cobwebs that had dumped all these big spiders in my hair (writing this now, I am inclined to blame the cat, though I hadn’t seen the connection at the time). And the anxiety stayed with me throughout the day. When my jaw started to ache I felt sure that it was muscle and nerve tension, but I was uncomfortably aware I had a cracked tooth in the vicinity. You won’t know about this because it all happened on the eve of the referendum. I’d seen a mark on the tooth – the corresponding tooth to the one that was removed – and thought it was a cavity. So with a heavy heart I went to the dentist only to be told it was a crack that we just needed to keep an eye on. I was so happy I floated out of the surgery and down the street to the polling station. What a great day! How could anything go wrong now? I thought, as I posted my vote in the box.

Ah well.

So I spoke to my sister-in-law on the phone and she said, ‘Listen, I have a tooth that aches all the time and it’s been x-rayed so many times,  but it’s fine. Aching isn’t always about decay.’ Indeed, the right side of my face was feeling very odd, as if my cheek had gone to sleep, and it certainly wasn’t like your usual toothache. But then I went for a session of reiki and my practitioner more or less hit the roof. ‘If a dentist has told you there’s a problem that you’re keeping an eye on,’ she said stressing the words, ‘then you’ve got a ticking time bomb in your mouth that could explode at any moment! Get to the dentist!’ Then she said, ‘Honestly, Litlove, I don’t think there’s enough reiki in the room to deal with your anxiety. What are we going to do about it?’ When the healers start to doubt, it’s not very encouraging. And I actually felt that was a tad unfair. I think I’ve been pretty good about my anxiety lately. What used to be generalised seems now to exist in acute pockets that are difficult to manage. But when I’m fine, I’m fine.

So I rang the dentists and they were kind enough to squeeze me in at the end of the day, and while waiting I distracted myself with the Booker longlist. This was good distraction! Only of course the book I had put aside just a couple of days ago as not quite right for my mood was the only book on the longlist that I owned and had been intending to review for Shiny. Isn’t that typical? It was Do Not Say We Have Nothing by Madeleine Thien, and I’m sure I’ll enjoy it, just not at this moment. As for the rest of the list, I am constantly astounded by the Booker judges’ ability to longlist books I have never heard of, not even a whiff or a trace. About half the list was news to me.

Anyway, the dentists. My extremely nice dentist gave me a thorough check over and said the pain came from a muscle spasm and I should wear my mouthguard (in daylight hours! when it makes me look like Hannibal Lecter!) and eat soft foods for a while. Sister-in-law: 1 Reiki practitioner: 0. The pain went completely yesterday, but then I triggered it with some rather chewy chicken again. It’s not so bad, though.

But it has prompted me to go back to my lovely Alexander Technique lady, whom I saw on Friday for an unwinding session. Something happens to me when I concentrate: I seem to squeeze my neck vertebrae together and clench muscles I don’t even know I have. While there I asked her if Mr Litlove could come and speak to her as he’s very keen on making ergonomic chairs and wanted to consult with an expert. Well, it turned out she is only the leader of a Campaign For Better Seating. How cool is that? Having networked so splendidly for Mr Litlove he then rewarded me by pruning the entire top off of a still-flowering clematis. So he was in the dog house. The garden is always the source of our worst disagreements because I identify emotionally with the plants that flourish, seeing in them hope for a new uprising of energy. Whereas Mr Litlove suffers a sort of negative recoil from anything he perceives as ‘getting above itself’.

But he did redeem himself by sending me a youtube clip of John Oliver looking back over the RNC Convention and the interview with Newt Gingrich in particular in which he defended Trump’s evidently untrue claim that the violent crime figures have gone up in America. Gingrich insisted that in America people ‘feel more threatened’ and his argument was simply to take that feeling and turn it into a fact: that crime is worse. Oliver’s take was that this idea that ‘feelings are as valid as facts’ produced the scary prospect of candidates being able to ‘create’ facts, which we see in Trump creating his own reality.

So it’s official: being right is an emotion.

O America! If you have any belief in this special relationship with Britain, do please look closely at what happens when people ignore facts in favour of their prejudices, fears, and frustrations. Already in the UK thousands of jobs are being shed and the economic figures are showing a marked downturn. The pound has plummeted and we haven’t even stepped into our new reality yet.

I think this state of affairs has been coming for a long time. It probably begins with economics, which claims to be a science but can sometimes look like a religion with graphs. And then there have been these big scientific arguments over (for instance) whether or not climate change will happen, and the humanities have been pulling chunks off the idea of truth for decades now. The media’s dogged insistence on reporting only the bad, the threatening and the scandalous has indeed made experts look like idiots. And then all it takes is a democratising of intelligence like the internet for the whole notion of an ‘opinion’ to be bigged up until it burst its banks entirely. Opinions are feelings, feelings are not facts. But we do seem to be living now in a post-factual universe and just think how surreal and alarming this state of affairs might become.

And so my friends, while we hurtle towards an even crazier version of life than we’ve ever managed to embrace before, I can only urge you all to read. Because the only place where untruths have real value is fiction, where we do our best to explain and understand and evoke compassion for the odd business of being alive.

 

And After Another Long, Unexplained Absence…

The new edition of Shiny is out! – but you probably already know this, as we went live last Thursday and I am only now managing to produce a blog post.

And why is this, I hear you cry? Well, let me give you the details.

Casualties so far in 2016

Mr Litlove

Trapped nerve in shoulder.

Throat infection.

Monster cold from family party at Easter.

 

Litlove

Uveitis in eye followed by WEEKS of chronic eye strain.

Cystitis once.

Cystitis twice.

Yeast infection from antibiotics.

Mr Litlove’s cold – though I caught this mildly and it is negligible in the scheme of things.

Abscess in tooth, resulting in more antibiotics and the prospect of an unpleasant trip to the dentist.

 

This last one was the worst. I came home and wailed that this was AWFUL. I’d barely got past the last batch of antibiotics and now I had another and the supremely dreadful choice between root canal work or extraction.

‘But this is great!’ said Mr Litlove. ‘You’ve got something definite and it has a name and they know how to fix it.’

Well, I’ve had a good run at health issues with names so far this year and frankly, you can keep them. I’ll take my nebulous chronic fatigue any day, which usually leaves me safe in my own home and without the need for medical intervention. Ten to one I’ll have the tooth extracted, as it’s been nothing but trouble since I concussed the nerve and the root canal work may well not be entirely successful. My mother assured me most comfortingly that an extraction is the sort of thing that’s worse in anticipation than in actuality and it ought at least to be quick. The dentist did warn me I wouldn’t be able to chew so well on that side of my mouth, but I pointed out I hadn’t chewed on it for the past two and a half years anyway. So. Now I just have to hope the antibiotics work (they are working, just more slowly than I’d hoped) and that I can avoid a second yeast infection. Sigh.

It’s been kind of Mr Litlove to keep me company in ill health. We were sitting on the sofa, staring at the walls not that long ago and he said: ‘We ought to be living the dream. We have an idyllic lifestyle and all we’ve done so far this year is be ill.’ ‘Tell me about it!’ I said. We are as usual oddly opposite. Mr Litlove is someone who can’t be ill quietly; there is never any need to ask him what the matter is. Whereas I get more still and more silent the worse I feel. He said he found himself wondering at one point if he’d caught chronic fatigue from me (I thought it was a bit late in the day for contagion) or whether we should have the house checked for poisonous gasses. I can understand Mr Litlove’s chain of events easily – he’s in the middle of a huge life change after all, which is tiring, and he got the throat bug from going back and forth to the doctors for me, and then his cold from a family party where it was rampant. He thinks that my run of illnesses have been provoked by fighting off this abscess for a while, and the dentist did warn me the swelling probably wouldn’t go down completely because of the scar tissue, since it had been there some time. I don’t know. I like it as a theory and wish it were true, which means I distrust it. What if this is just all about my heading-towards-fifty-hormones? What if this is the new reality?

On a more positive note, I have recently been able to read a bit again – up to two hours a day if I take plenty of breaks to rest my eyes. Which was absolute bliss after such a long, long drought. Before that I’d been forced to entertain myself with Woody Allen-esque scenarios in which I imagined travelling around the different departments of my body. So I might visit my brain to find the operatives bored and cranky, complaining there’s not enough to do. To which I would point out that the place is in a mess, half the cooling fans have burnt out, there’s litter everywhere, a good clean would make a lot of difference, etc. But they tell me that it’s no use, they can’t get any help from Maintenance. So I then visit Maintenance, where they suck in air through their teeth and say it’s a difficult time and what with all the recent problems, resources are low, maybe if they could get more supplies…? So I go to Accounts and Distribution, who are up in arms; they really need more nutrient income but they keep being ram-raided by that criminal, Stress, who makes off with all the good stuff the moment it’s delivered… And just recently I had a little fun with antibiotic ninjas storming the besieged Northern Gum Territories.

Well, you have to find amusement wherever you can.

This is true more than usual this week as Mr Litlove, now pretty much fully recovered from his cold, has gone away to Devon for a chair-making course. We’d agreed much earlier in the year that he’d go alone as a five-hour car trip is well outside my comfort zone at the moment, and normally I don’t mind a week on my own to watch what I like on telly and eat chicken risotto every night. But he’s only been gone an hour and I am missing him dreadfully. I think I’m a little lower in spirits than usual, what with this run of illnesses. But hey, I’ve hardly read any of the reviews in this edition of Shiny – and I must mention the kindness and understanding of the other eds, which has stretched beyond the pale this year! – and I’ve been feeling too rough even to look at what’s going on in the blogworld lately, so I could catch up. And I can make myself chicken risotto and watch an old movie I’ve watched so many times that I don’t need to strain my eyes on it (and I prefer rewatching movies to seeing them for the first time). And I have Elizabeth von Arnim’s The Solitary Summer by my side to read a few pages at a time, because there was a woman who really knew how to make the most of time alone. So I will do my very best to avoid a pity party.

If you happen to stop by, tell me what you are doing this week. I’d love to know!