UK writer with ME Susanna Clarke - press articles

MeSci said:
I haven't had this: “I think it may be a feature with chronic fatigue that you become incapable of making decisions".

Does anyone else?
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This happens to my wife and I put it down to the fact her exhaustion includes mental exhaustion.

For example if we are out shopping (when we occasionally used to do that, prior to covid), there will typically come a point where my wife simply cannot make the simplest decisions - decisions she would have been making easily a short while before. We have learnt to do a bit of teamwork here, because if it is something I know my wife really wanted to get sorted, and if I've gleaned enough on our shopping trip to suss what she most likely wants, then my wife is happy to defer the decision making to me. Invariably seems to work. But it's almost like a shutter comes down.
 
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Mithriel said:
Doctors should ask what helps as that can be a better diagnostic tool than just asking about the problem. If it was any sort of anxiety, having a list of what groceries are available would not help.
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I completely agree it's not psychological nor in any way anxiety related. When I was unable to shop because of lack of mental capacity but was capable of physically walking around the shop by my husband's side occasionally he would forget and step away from me. I would find myself alone, unable to see him, not knowing where the exit was, even if I found the exit I wouldn't be able to find the car or be safe walking in the car park alone. There might be an initial feeling "oh sh......" but I knew nothing terrible would happen. I might look a prat if I had to sit or lie on the floor but if I stayed put my husband would find me.

Mithriel said:
Doctors should ask what helps
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I think this is only true for a subset of people. When it's bad enough nothing helps. You are conscious, but incapable of coherent thought. You cannot read, follow instructions or verbal commands, understand even simple sentences.

You are aware of suffering but can't describe or explain where it hurts or how it feels. Of course after, you don't remember clearly.

Time passes, but you aren't aware of time per se.

It's like there is enough power going to the brain to provide essential functions but not enough for higher functions like speech, or grappling with even basic concepts.

While I am classed as severe there are levels much, much worse than me. I shudder to think what that experience might be like.
 
Invisible Woman said:
I completely agree it's not psychological nor in any way anxiety related. When I was unable to shop because of lack of mental capacity but was capable of physically walking around the shop by my husband's side occasionally he would forget and step away from me. I would find myself alone, unable to see him, not knowing where the exit was, even if I found the exit I wouldn't be able to find the car or be safe walking in the car park alone. There might be an initial feeling "oh sh......" but I knew nothing terrible would happen. I might look a prat if I had to sit or lie on the floor but if I stayed put my husband would find me.



I think this is only true for a subset of people. When it's bad enough nothing helps. You are conscious, but incapable of coherent thought. You cannot read, follow instructions or verbal commands, understand even simple sentences.

You are aware of suffering but can't describe or explain where it hurts or how it feels. Of course after, you don't remember clearly.

Time passes, but you aren't aware of time per se.

It's like there is enough power going to the brain to provide essential functions but not enough for higher functions like speech, or grappling with even basic concepts.

While I am classed as severe there are levels much, much worse than me. I shudder to think what that experience might be like.
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I think from this and your other posts my severity level is similar to yours. What I'm interested to learn is whether when continuously pushed by others (such as in a medical environment) do PWME have anything like a full blown autistic meltdown, where they can't stop themselves lashing out at others as the cognitive ability to inhibit ones behaviour has long since passed? As I'm also autistic, it's hard to gauge how much my 'meltdowns' are due to my autistic sensory overload and how much due to the severe M.E.
 
Simbindi said:
What I'm interested to learn is whether when continuously pushed by others (such as in a medical environment) do PWME have anything like a full blown autistic meltdown, where they can't stop themselves lashing out at others as the cognitive ability to inhibit ones behaviour has long since passed?
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Before I understood how ME was affecting me it was much more likely to happen. As I understand better how my body & brain are likely to react in given situations I am able to manage it better. In the early days there was one GP appointment where I came very close to losing my temper so I walked out.

I am fortunate that some of my training at work has helped me cope. Preparing for and chairing technical meetings which could become hostile & heated, I was also trained in dealing with confrontation in my specific job environment (as a small, soft spoken female working mainly with males that came in useful).

So when in a meeting/appointment/assessment situation I plan well ahead and also include exit strategies should I need to shut it down. My husband & I will also discuss when and how he should intervene if necessary (usually he just acts as witness). That all helps keep things manageable.
 
Invisible Woman said:
Before I understood how ME was affecting me it was much more likely to happen. As I understand better how my body & brain are likely to react in given situations I am able to manage it better. In the early days there was one GP appointment where I came very close to losing my temper so I walked out.

I am fortunate that some of my training at work has helped me cope. Preparing for and chairing technical meetings which could become hostile & heated, I was also trained in dealing with confrontation in my specific job environment (as a small, soft spoken female working mainly with males that came in useful).

So when in a meeting/appointment/assessment situation I plan well ahead and also include exit strategies should I need to shut it down. My husband & I will also discuss when and how he should intervene if necessary (usually he just acts as witness). That all helps keep things manageable.
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No, this is an neurological thing I can't control and not due to not being able to deal with confrontation (I'm really, really good at that in normal circumstances having worked with kids with behavioural and social difficulties and always been able to handle them, building good relationships) it simply takes too much cognitive energy to avoid the meltdown once the 'critical point' is reached. Whilst most of the time I am able to manage things by walking away from a situation, this is not always possible because others won't allow it, they keep pushing me by making more verbal demands. It's like a switch that happens suddenly, I just 'flip' from trying to reason with the person causing problems to having a meltdown, in an instance I am completely overloaded. It's too often taken as an emotional response, but in autism it isn't, it's a processing problem caused by cognitive overload. It basically moves you from a human rational mode to the survival mode seen in injured animals. Then people think the appropriate response is to offer 'emotional support' which is the very last thing I need, it just makes the meltdown worse. I just need to be left alone and have the sensory stimulation stopped.
 
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This doesn't sound like the same thing to me either @Simbindi. The cognitive drain is fast but I would if pushed and pushed beyond cognitive limits I would lose the ability to think/speak or react. I'd probably also be too weak to physically stand if pushed that far.

It does sound more like the reaction I might have if I can't escape sensory overload, especially noise, but a but maybe more extreme. I can feel myself becoming irrationally angry and it will keep building until I can escape the noise. I've not actually lashed out but a couple of times it's been close and the only thing that helps is having peace & quiet not talking/comforting/soothing.
 
Invisible Woman said:
This doesn't sound like the same thing to me either @Simbindi. The cognitive drain is fast but I would if pushed and pushed beyond cognitive limits I would lose the ability to think/speak or react. I'd probably also be too weak to physically stand if pushed that far.

It does sound more like the reaction I might have if I can't escape sensory overload, especially noise, but a but maybe more extreme. I can feel myself becoming irrationally angry and it will keep building until I can escape the noise. I've not actually lashed out but a couple of times it's been close and the only thing that helps is having peace & quiet not talking/comforting/soothing.
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I actually go through stages, I internalise rather than externalise my meltdown initially. I become a sobbing mass and if left alone at that stage I need usually a couple of hours to become 'myself' again. But when I get pushed beyond this point I flip and do lash out like a wounded animal. I am also composed enough in the early stages to explicitly ask the other person to stop engaging with me and to leave me alone, that I am autistic, that I am likely to have a meltdown. I am not feeling angry so much as overloaded. Obviously by the point of full meltdown I am angry as well as overloaded.

I've been wondering about this for a while (whether sensory issues cause meltdowns in PWME without autism) but have in the last week been forced into this extreme situation as I was taken into hospital with an infection. I'll write about it more in due course, but I could not escape the sensory overload. On top of this not a single nurse had even the basic awareness needed to interact with, much less support, an autistic person with sensory processing disorder. I did discharge myself after 36 hours 'against their advice'. They couldn't provide me with a bed in a location that suited my needs so I had no choice. I had 3 ward changes imposed on me within 24 hours, each one sensorily worse than the previous one. I'd already not slept for 36 hours before the ambulance arrived due to the infection, my temperature had gone up under their 'care', I hadn't got anything more than a 'microsleep' since being admitted, I was already at the stage I was banging my head with my fist to try to cope, I knew it was only going to get worse - but still they insisted I should stay on the ward, right next to a vibrating bed (sounded like a pneumatic drill to me, even with ear plugs). So how does a PWME but not additional autism cope with this sort of situation?

In this case my daughter had explicitly told them about my autism (as I kept doing repeatedly), she had asked them to contact her immediately if I was having difficulties. They didn't do this on either the 2nd or 3rd ward (the first assessment ward was actually reasonably quiet).

I quickly gave up trying to communicate about the severe M.E., none of the nurses even knew what it was and only one asked about it further. But the Autism Act (2009) requires all healthcare professionals in England to have had appropriate autism training, so they should have understood that aspect of my problems and the extreme sensory overload I was suffering from.
 
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Simbindi said:
I think from this and your other posts my severity level is similar to yours. What I'm interested to learn is whether when continuously pushed by others (such as in a medical environment) do PWME have anything like a full blown autistic meltdown, where they can't stop themselves lashing out at others as the cognitive ability to inhibit ones behaviour has long since passed? As I'm also autistic, it's hard to gauge how much my 'meltdowns' are due to my autistic sensory overload and how much due to the severe M.E.
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i had to walk out of a dentist appointment once when i lost the ability to speak the anger i felt just boiled up out of nowhere . it gave me an unwelcome insight to how some people with dementia might feel .
 
My grandson with autism never has obvious meltdowns, he just freezes unable to move or speak. The only outward sign is trembling. What I get is closer to that, a complete inability to move or react.

When we were in Tesco they suddenly switched on very loud Christmas carols. He collapsed into a trembling heap on the floor and I lost my handbag and stuck all twisted in my wheelchair. My poor husband had to cope with both of us :)

I feel doctors should ask what helps in the sense that the type of thing that would make a symptom better can clarify what is causing the symptom when it is not straightforward, not so much that anything really helps. For instance, I had trouble getting round supermarkets when I was more able and they wanted to say it was anxiety, but having someone with me did not help at all whereas using a trolley to lean on made a difference.
 
Barry said:
This happens to my wife and I put it down to the fact her exhaustion includes mental exhaustion.

For example if we are out shopping (when we occasionally used to do that, prior to covid), there will typically come a point where my wife simply cannot make the simplest decisions - decisions she would have been making easily a short while before. We have learnt to do a bit of teamwork here, because if it is something I know my wife really wanted to get sorted, and if I've gleaned enough on our shopping trip to suss what she most likely wants, then my wife is happy to defer the decision making to me. Invariably seems to work. But it's almost like a shutter comes down.
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This inability to think is a key part of ME but it is not well known. It seems to be the brain stopping working in the same way the body stops. When I have a bad crash I can just lie there without thought - hard to know exactly what it feels like as I am not thinking! Then when I begin to think again I know I am getting better.

As an aside, these collapses tend to be a reaction to doing too much which cause a short collapse which lasts hours at most and are not like the physical problems of too much activity though I can get both at the same time.
 
Simbindi said:
However, I was still able to make the cognitive decision to discharge myself...
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I've not been in that situation but I would probably have lost that ability.

The closest I can think of is during an overnight stay in A&E where I was constantly woken up and spoken to. I was feeling very unwell to start with so wasn't in great shape to communicate anyway. My husband was with me and he was the one waking me and checking on me. I couldn't even communicate with him.

I couldn't communicate with him that I needed to be left alone. It was torture.

Once it's passed a certain level of endurance, like @Muthriel describes my ability to function at all cognitive stops. You are conscious but cannot form coherent thoughts.

When I have been at my worst I can be like that for long periods of time. Luckily for me I always had the odd hour or two in the day when I could understand and communicate with single simple words. I could drag myself to the loo. The rest of the day - nothing but a blurred awareness.
 
I also have ADHD, so I suspect I'm very different than most PWME neurologically. I can never 'switch off' my thoughts, although they often do go round repeatedly in a loop. Even when I fall asleep I have very vivid dreams and wake up feeling mentally exhausted and usually still 'wired'. The only time I feel like my brain has actually switched off is during an anesthetic - I actually look forward to having them as the experience for me is 'other worldly'.
 
There is a dreadful consequence of a stroke in the brain stem of the brain where a person is fully aware yet thought to be in a coma. I think we get this when that part of the brain is affected by whatever goes wrong in ME.

Luckily it reverses but it means when I most need help I can't get it.
 
Simbindi said:
I can never 'switch off' my thoughts, although they often do go round repeatedly in a loop.
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I experience episodes of this as a consequence of PEM. It's the kind of wired but tired thing - SSRI's and the z drugs - zopiclone etc also cause this for me. I'm not stressed or anxious or necessarily worried about something, my brain just doesn't shut off. Sometimes, if it's not too bad, meditation exercises can help but sometimes you just have to ride it out.

Taking stimulants or caffeine can also trigger it - especially if taken after midday.

However once my condition worsens beyond a certain point this will stop & I slip into zombie mode.
 
Forbin said:
What the writer describes sounds somewhat like "paralysis by analysis," which is an inability to make decisions because there are so many options that it becomes impossible to weigh all the possible arguments for and against each one.

Ultimately, I think the solution is to select a reasonable option (after due consideration) and to just have faith that your subconscious is making the right decision.

Maybe that's harder for people with ME because brain fog and self doubt (abetted by medical neglect) may well undermine one's confidence in their decision making.
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My whole family i have severe cognitive problems, having to make a decision is one of the worst things I can do to make my health deteriate. At gives me terrible brain brain. I've always felt one of the big causes of cognitive issues is lack of blood flow to the brain. I used to watch a lot of documentaries and the difficulties people had at high attitude of being conscious but unable to react to a situation, not being able to answer questions correctly because they couldn't think, or incapable of thinking anything over was absolutely identical to the problems I and my family had. There are some excellent high attitude researchers out there, I'd love one of them to take a look at M.E. and see if the symptoms are as close as I believe then to be. (Including the cough, and difficulty moving)
 
To be honest, the reason I thought of "paralysis by analysis" is because the author is trying to write a follow-up to a successful first novel. There's a lot of pressure when you're trying to repeat a first success and doing so has frustrated countless writers. Among other things, you suddenly have to deal with the high expectations of others. Her description of going down several different roads but having trouble choosing one would be familiar to many writers.

I guess my point is that doing anything creative can be very demanding and frustrating, even when you're healthy. It's certainly not going to get any easier if you're dealing with the cognitive issues of ME/CFS. Anyone attempting such as thing has my admiration as well as my advice to go easy on yourself and to be aware of the scale of what you are attempting.
 
Not a magic recovery story:

"Over time, Clarke slowly found her way back to writing. She learned to manage her symptoms, and discovered she could stay on track by working in 25-minute bursts. Her brain fog receded."

Re her second novel in 2020:
"The philosophical puzzle at the story’s center reflected some of Clarke’s preoccupations: The narrator, Piranesi, lives largely alone with seabirds and stone figures, but instead of feeling lost or lonely, he sees the halls as a place of infinite wonders.

Clarke had nearly finished the novel before she saw the parallels between the fictional labyrinth and her illness.


“I was subliminally aware that I was writing about someone in a fairly isolated position, but who was able to find a huge amount of meaning in that,” she said."

"When she’s well enough, she and Greenland go on outings to local pubs and coffee shops."
 
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