Failure Of Imagination

I’m not much interested in a general Oh-the-humanity-of-CFS blog, which is why I haven’t been arsed updating this site since the hospital was indefinitely postponed. That was on 4th March, and I’ve been enjoying a Netflix and junkfood holiday from the duties of being a chronic patient and a person for some of the time since then, and subsequently I’ve been unusually productive. Except blogwise.

This is what happened. A few weeks ago I had my phone appointment with the CFS expert about the general survivability of the hospital enterprise. I told him I thought that the hospital would be far too much for me, however many or few tests we did, and that it was quite possible I’d be unable to speak or respond well before the first day was out. I was hoping he would tell me my predictions were alarmist, but he didn’t. I told him the slender history of my blackouts (two and a half of them, eight months ago, plus minor attendant neurological strangenesses), my current energy limits and my consequences-of-exceeding-limits history, and he said something like, “So why are you doing this?” We seemed to agree that this trip could be bad for me, but I gave him my reasons for going as outlined in the first paragraph of the Going To The Hospital post. They are fairly nihilistic reasons, but then there is a lot of nothingness in my life.

So I seemed to be faced with a choice. Or rather, since I’d already made up my mind, at least with the obligation to justify sacrificing my remaining health on this goose chase. When I started laying out my long shots (see the fourth paragraph of GTTH), he was quick to see that I was approaching hospital, as he put it, as a “behavioural experiment”, but he pointed out that “there are less extreme ways to challenge yourself”. Less schmess, I thought. Meet the measure to the mentalist.

I wasn’t scared, but this is only because I couldn’t properly imagine the consequences. My episodic memory and imagination is poor, and I remember facts much better than experience. (I don’t know if that’s M.E., or if it’s just me, but it’s been that way since I was a small child.) I know when such-and-such happened or that it was two days after this-and-that, and I know that I enjoyed it or regretted it or was tormented by it, but I can’t remember what it actually felt like, unless maybe there’s a particular trigger or a similarity with what I’m feeling now. After the phone appointment I was very tired, afraid I’d overdone it, and occupied by physical pain and dread, panic, blame, regret. It was a tiny glimpse of what the hospital and its aftermath would be like, and for the next few hours I was crawling with anxieties as the truth of this doomed enterprise came home to me. And then I forgot it again. I took some drugs and calmed down and slept, and by Sunday I was back to normal. Composure. Insouciance. Phlegm.

But I do remember the fact that the change in mood was as bad as the physical stuff, and not much easier to shake off. When Milton’s Satan says,

The mind is its own place, and in itself
Can make a Heaven of Hell, a Hell of Heaven

he seems to believe that he can believe whatever he wants to. I don’t think free will stretches that far, or at least not that fast. As Peter O’Toole says in Lawrence Of Arabia, you can do what you want, but you can’t want what you want: we’re all as encased in our minds, their dispositions and preferences, as we are in our bodies – however much that may be. I could expect to return from the hospital not only physically devastated but also irritable, depressed and unable to concentrate, and perhaps also under the thumb of a despair that might discourage me from tackling all the rest. It feels strange, losing the illusion of free will, but not new; I’ve always found in hard to distinguish between what’s me and what’s illness.

These concerns didn’t affect my morale because, well, let’s see, soon they were all lost like tears in rain, innit (see above). But the CFS expert spoke to the neurologist about how severely fucking decking the hospital would be, and the neurologist emailed me apologising because he’d changed his mind and decided that “an admission would not be in your best interests at the moment.” I’m partly disappointed, or at least deflated, partly relieved, and partly embarrassed that I’ve written a whole smegging blog for something that didn’t happen. Oy.

The next step, now that I’ve finished scoffing my hospital sweets, watching the whole of Breaking Bad and losing the weight I put on as a consequence of scoffing all my hospital sweets, is occupational therapy. The CFS Expert has recommended me a neurological occupational therapist and I hope between us we will have expertise enough to get me moving in the right direction. Thank you to everyone who offered visits or services or just goodwill, it meant a lot to me. I will also at some point post CFS Expert’s answers to my list of questions, because Genevieve wanted them. And as I’ve already mentioned, comments can now be left on this blog anonymously or with a nonsense name or email. But you can all keep commenting on Facebook if you prefer and I’ll just keep manually assuring the blog readership that these comments exist. It will allow me to exaggerate their volume and fervence, for one thing.

FAQ

Oh look! It’s almost as though I wrote a blog called Frequently Asked Questions and then realised six weeks later that I ought to include a Frequently Asked Questions section.

Can I come and visit you before you go to hospital?

I’m afraid I probably won’t have any opportunity for that, no, unless I’ve specifically invited you, in which case you are probably the dentist come to deal with that lost filling. But thank you to everyone who’s asked :)

Can I come and visit you after you leave hospital?

That depends on how much of me they’re able to scrape off the floor once it’s all finished, but I don’t expect to be visitable for weeks if not months if not a limited lifetime afterwards.

Can I come and visit you in hospital?

Well… no. I would like it, but it’s very unlikely I’ll be able to. Obviously if you are Cate Blanchett or look like her and you’re in town that day, like from Manchester or something, I’ll be delighted to have you visit Even If It Kills Me.

When, where and for how long are you going?

The NHNN – National Hospital for Neurology and Neurosurgery, Queen Square. Provisional plan is an overnight admission during the last week of March (2014).

Is there anything I can do to help?

In general:
image If I think of anything else I’ll put it in a separate Wanted post so I can highlight it properly on the Facebook share :)

What tests will you be having?

EEG, ECG, nerve conduction studies, and “possibly” an MRI. I don’t know what that possibly depends on; it’s the one I’d most like to see.

Will you keep your fascinated public updated from the hospital?

Probably I will because I’m fidgety and compulsive, but PLEASE don’t write back anything that invites a response from me.

What do you think is wrong with you?

Well, I hope it’s not mitochondrial, because that seems intractable and not especially reversible.

The best (by which I mean the most elegant and convincing) of the brain-type theories I’ve seen is Ashok Gupta’s, which you can find at

https://www.youtube.com/watch?v=SEtyMHbf08U&feature=youtube_gdata_player (video)
and

http://www.guptaprogramme.com/causes-of-me/ (academicish paper)

This kind of cognitive and behavioural approach is, I think, about uncoupling your experience of your symptoms from your reaction to your symptoms – not only your emotional reactions of fear, despair, frustration and so on, but also the urge to interpret, decipher, or reform. It’s not construing your symptoms in any way, while at the same time not suppressing or denying them. It’s the Buddhist attitude of non-attachment and acceptance, really. I can write more about this IAIAICBA (see Glossary).

Will you take a bear?

I’m planning on taking Grey Eeyore, because I enjoy reassuring him, or trying to. I have a thing for downbeat animals. His tail is securely attached and won’t be misappropriated as a bell pull or nurse-calling alarm or something. (Do hospitals have stuff like that?)
IMG_20140213_183412

Will you take a beer?

No.

Glossary of Abbreviations except actually they are acronyms

BD/AD – Before Dentist/After Dentist (don’t get me started on this)

CFS – Chronic Fatigue Syndrome. This term is often used interchangeably with ME. A lot of people have a problem with it because it trivialises what is in fact a disabling symptom –“the equivalent of trivialising dementia by calling it a chronic forgetfulness syndrome” – and, just as perniciously, it generalises it, so that anyone who’s ever been tired, i.e. everyone, can think that they know what the illness feels like and that it can’t possibly be that disabling and that you should be able to get over it just by, well, mainly by ignoring it. Sigh. There are about half a dozen sets of definitions of CFS (seriously), some of them so hopelessly vague as to require not much more than, just, feeling kind of, you know, out of sorts for a while.

IAIAIAWE – If Anyone’s Interested And I Am Well Enough

IAIAICBA – If Anyone’s Interested And I Can Be Arsed

ME – Myalgic Encephalomyelitis. I am grudgingly using this term to mean a serious neurological or neuro-immune illness that results in exertion intolerance, pretty-much-everything intolerance and a constellation of other symptoms. If I don’t have any particularly definitive description of it it’s because not enough research has been done to define it.

There is much strife and worry about what this illness should be called, and recently the American Institute Of Medicine has started calling it Systemic Exertion Intolerance Disease (SEID) . I thought this was a step in the right direction because it puts exertion intolerance front and centre, but other people I respect say the diagnostic criteria are still a bit askew. But don’t worry, they are planning to review it in five years…

Some people get very angry if you conflate ME with CFS, and after a decade or so of not bothering to find out why I looked it up: (this link) sets out the most popular arguments. There are alsopeople who believe that ME always involves observable neurological damage (myalgia = muscle pain, encephalomyelitis = inflammation of the brain and spinal cord), and that CFS is entirely a bogus category entirely composed of atypical versions of other disorders and concocted by obliging doctors in order to aid medical insurance companies to avoid paying for chronic disease. But many of these people would also believe that my illness is not ME because its onset was gradual, so to me they sound like fanatics who can’t cope with subtlety.

My opinion is that there are probably some ME-type illnesses caused by brain damage and some caused by dysfunction, and some of this can be retuned or rewired and some of it can’t. We may have a situation where this isn’t a single illness so much as a category of illness a bit like mitochondrial disorders or muscular dystrophies. We won’t know until we study its biology more. But as you’re probably working out for yourself, this much strife about what to call the Judaean People’s Front an illness means the problem is not only how to define it but who gets to define it. The division is not in fact {patients} vs {doctors} but {doctors and patients who think that biology is relevant and should be studied} vs {doctors who avoid biomedical investigation because it only encourages people to think they’re ill}. Seriously.

NHNN – National Hospital for Neurology and Neurosurgery, Queen Square, London WC1N. Where I will be going. Provisional plan is an overnight admission during the last week of March.

IMG_20140202_000549

RLHH – Royal London Homeopathic Hospital, between the famous Great Ormond Street children’s hospital and the National Hospital for Neurology and Neurosurgery (see map). The RLHH is my dad’s old hospital, now renamed…

…RLHIM – Royal London Hospital for Integrated Medicine. It isn’t really relevant to this blog except that I’ve spent a lot of time there and I love the area, which is one of the things that makes going to the NHNN less daunting. I suspect flavoured vodka might be another.

Finished packing and now considering possible outcomes of adventure

On Thursday I finished off my last bit of advance packing, although I do keep eating the snacks I plan to include, and except for a wheelchair and an eyelash comb I have everything I need to take.  My willingness to go depends on maintaining an attitude of unreality towards the event, and so far I’m cheerful – “I am looking forward to the whole enterprise, actually,” I told the neurologist, “sort of like how Meursault looked forward to the guillotine.” Before it becomes more real, and before my talk with the CFS which may alter my understanding, I will list for you my own view of the possible outcomes from worst to best. (Numbers in brackets are the estimated order of likelihood at the time of writing… which is February 2nd, Groundhog Day.)

1. No change (no deterioration and no useful information gleaned)  (2)

2. Severe deterioration and no useful information gleaned – this would at least prove my father wrong.  (I  think he thinks my that tiredness consists of lethargy/enervation/limpness and that I can do things if I really put my mind to them.  Not going to go into that now.)  (1)

3. Useful information gleaned but no effective treatment possible.  (4)

4. It would be only slightly less onerous if suggestive information were gleaned and led to unproven treatment ideas, because hope is a consumable, if renewable, resource, and I’ve been chasing these pissing shadows for over a decade now. (3)

5. Death (5 or 6)

6. Useful information gleaned leading to effective treatment and significant improvement (5 or 6)

7. Finding a benign but wonderfully culpable tumour, whipping it out, and rainbows shine and bunnies hop and the forest* all rejoices. (7)

We’ll see what my appointment with Dr.B does to these predictions. Or rather I’ll see, and if I have the energy I’ll type it out for you. (I’m following the Charlie Brooker school of audience engagement here.)

* In Cloud Cuckoo Land