A Bit More on the Benefit System

Change.org just sent me an email about benefit sanctions with a couple of good articles, so thought I’d add those here, for anyone interested…

The Effect of Benefit Sanctions – the effects are depression and hunger, unsurprisingly.

Sixteen of the Most Senseless Benefit Sanctions –  A stern warning for all you work-shy claimants: having a heart attack during an assessment and therefore not completing the assessment will result in a sanction.

BI Blog: Sleep

There is loads of information online about what to do when you can’t sleep, so you don’t need me to reiterate it.

Here are two excellent websites that talk about sleep and BI

Sleep Disorders and TBIs

More about sleep disorders

However, there are a few things I had to figure out for myself, so I’ll put those here in case they’re useful.

  • Doctors don’t like prescribing medication for sleep – and they are absolutely right to be reluctant. Strong sleep medication is addictive, and quickly becomes ineffective. However, taking strong medication for a short period of time (maybe only a few weeks) can be enough to get the body over whatever barriers it has created (fear, habit, whatever). Once you are through the initial barriers, it’s important to stop taking the addictive medication and move onto something gentler, then deal with remaining issues through other means.
  • If you have a tendency to wake up a lot in the night – DON’T LOOK AT THE CLOCK. If the desire to do this is too great, hide the clock before you go to bed. By looking at the clock when you wake, you are programming your brain to wake at that time. That might sound odd, but try it for a few days.
  • Stress about sleeping can stop you sleeping. It’s true you need to take lack of sleep seriously, but once you have come up with methods for dealing with it, you need to try and let the worry go.
  • If noises wake you up, then get a noise machine (although some people hate the sound of these). They make a constantly whirring sound like a fan.
  • As I said, there is plenty of conflicting information online about how to sleep, but one thing seems fairly universal – spend at least an hour before you sleep not looking at any kind of screen (TV, laptop, kindle). Instead do something restful, not exciting, not stimulating. If reading is difficult, then maybe drawing or listening to an audio book is better.
  • Don’t pay attention to your dreams. In this culture there is some focus on dreams as being important and oracular. With PTSD, dreams can become intense and seem important, but paying attention to them, especially writing them down, makes you more likely to wake up after having them.

As always any additional information in the comments is much appreciated.

BI Blog: Expanding on Spoon Theory

Spoon theory is here

When I first read the Spoons description of being ill, I thought That’s it exactly, surely every healthy person will understand now!  But I still read people dismissing it as whinging and not getting what is being described. And of course, it didn’t explain how to deal with that situation of limited energy. So this blog takes a few tentative steps to solving those two problems.

The Crux of the Problem

When somebody you know is ill or struggling, it’s easy to think ‘toughen up’, ‘make an effort’, ‘you’re giving up before you even try’. You may actually be sort of, sometimes right, but you also may not be right at all. By simply looking at someone, you can’t know how hard they are trying and what they’re capable of.

Just to complicate things further, if you are the chronically ill person, you probably also don’t know what you are capable of, because it changes day by day.

My Experience

When I first got sick I didn’t believe it. Having a brain injury, I was living in a half-haze most of the time anyway, so I just slid my attention away from the reality of illness. This meant I could avoid completely giving up hope, but it also meant that I kept doing ridiculous things. For example I’d go out to meet friends in town and get so exhausted that I couldn’t find my way home again. I couldn’t remember the route, couldn’t read train timetables, couldn’t understand bus routes.

Pushing myself in this way was harmful, but after a lifetime of living at normal speed I didn’t appreciate that I just needed to slow right down and rest. And while there were supportive people in my life telling me to slow down, there were also many people telling me to push myself, stop being lazy. To them I didn’t look ill, because they only saw me when I was well enough to leave the house, and I tried to hide symptoms until I was on my own.

Energy for the Sick and the Healthy

Eventually, I worked out it was like this. There are different types of energy:

  1. Easy, healthy energy
  2. Energy that you have to push for
  3. Harmful, desperate energy

Energy

  1. Easy healthy energy

This is the energy that you use up freely with no ill effects.

When you are healthy, you mostly operate with this kind of energy – you use it to go to work, hang out with people you like and look after your basic needs. It sometimes feels to a healthy person that these things are hard work, but once you push yourself to doing something, you don’t suffer any bad effects afterwards, and probably feel better for having achieved something.

In chronically sick people, this energy can be brief or non-existent. It might be used up getting out of bed and getting dressed. And that’s it.

  1. Energy you have to push for.

This is the energy that gets used when you make an effort, but has few ill effects. It’s a good energy to use, the one that enables you to do new things, take on new challenges.

For a healthy person it can take determination to go to a party where you don’t know anyone, or to go for a run early in the morning on a cold day, or to mow the lawn. A few side effects might be aches and pains or some awkwardness. Once it’s over, you feel fine, perhaps better for having accomplished something.

In a sick person, this energy is also brief, you might use it to read the paper or make yourself dinner, and then it’s finished.

  1. Harmful desperate energy

Using this energy causes physical damage that lasts for days/weeks. You should only really use this in exceptional circumstances.

Healthy people will rarely ever use it. If you talk to someone who has run a marathon, this is the energy they use. It involves pushing yourself beyond the exhaustion barrier, time and again. Afterwards, you are not just tired, you are destroyed, and your body is suffering for some time as it recovers.

A chronically sick person uses this energy a lot, it may be all they have. Because they are only doing simple tasks that should be easy, they don’t think at the time they are using harmful desperate energy, and often there won’t be the immediate physical symptoms that a person gets while running a marathon. It may only be when the activity is over and their body is in pain, leaden with exhaustion and they can’t think, that they realise they have overdone it.

Using the Right Energy

It took a long time to work this out, but slowly, and with many mistakes, I stopped using the harmful energy. I put restrictions on myself, on seeing people, on how many things I could do in a day.  I started using mostly the healthy energy, occasionally the push energy. It was the right thing to do, because it gave my body the rest it needed to heal. And I was lucky enough that it did heal.

But then, over the next few years, that belief that I shouldn’t do things became my disability. I wasn’t lazy, I hadn’t given up, I was just trying desperately to look after myself, to treat my body with kindness. Out of fear, I stopped using the push energy at all and my health stopped improving.

Once I realised that, I began to head in the opposite direction once again, to push myself, to take risks, to take on tasks I felt I was incapable of. Because by this point I had much better health, it was possible to actually achieve some of those things without ever using the harmful energy. And in doing those things, I gained in strength, optimism and my health improved.

 So to sum up

  • When you are very ill you need to learn how to slow down and stop forcing yourself to carry out activity way beyond your abilities.
  • As your health improves you need to start gently pushing yourself and finding out what your boundaries are.
  • There is no clear way of knowing when that change occurs, and it is not smooth or a clear point. Nobody else can tell you when that point is, but you will also struggle to recognise it.

How to Figure Out What You’re Capable of:

For a sick person:

Experiment – the only method that worked for me was to experiment gently, slowly increasing activity and doing so without stress or pressure – avoiding stress is especially important with BI, frustrating though it is, you need to be gentle with yourself.

Mistakes are ok – accept that you will sometimes get it wrong, and that’s ok.

Vary activity – for times when you aren’t feeling motivated or inspired, have a list of hobbies ready (see previous post on this: https://inkbiotic.com/2016/04/15/brain-injury-refinding-purpose/)

Listen to your body – one of the most useful strategies was learning to recognise the messages my body was giving me.  Mindfulness and meditation help with this a lot. Time spent just paying attention to pain and anxiety will help you learn to listen to your body and brain.

Other people – listen to what people you trust are saying, ignore completely what other people  are saying (they may well mean well, so no need to be nasty about it, just smile and ignore them).

For a healthy person:

Looking back to my life before I got the BI, it fills me with shock how much I didn’t do because I thought I couldn’t. I put up imaginary boundaries all the time: not taking jobs I thought were beyond me, giving up on learning new skills because I seemed so crap at them, being creative to the point where I got praise and then trying no harder.

When I was trying to recover, everything was so insanely difficult that I discovered just how much effort is possible. Not that I was a lazy or undetermined person before, but compared to the effort of learning to read again (for example) it was nothing. No effort at all.

Talent and intelligence are useful, but they are nothing compared with effort. Speaking as someone who has less intelligence now; I am way more able, have achieved things I never thought were impossible before the accident, just because I try so much harder.

I suppose what I’m trying to say, is when you get the urge to say to a sick person ‘try harder’, say it to yourself instead, because you are the one that definitely needs to hear it and they probably aren’t.

TL;DR If you aren’t the one with illness, you don’t have a clue what the sick person is capable of. If you are the one with the illness, you have only slightly more of  clue.

Brain Injury and PTSD: Adventures in Brain

sunset guanacaste
A soothing picture of a sunset in Costa Rica

Continuing with things I needed to understand about my brain:

For previous BI and PTSD posts look under the category to the right.

  • BI: Diffuse Brain Injuries – these aren’t often talked about, but they seem to be fairly common, if less straightforward than focal brain injuries.
  • BI:Everything is Information – Everything we sense (see, hear, taste and feel to put it simply) is information that must be interpreted in the brain, and this can go wrong at a number of stages. The going wrong can be caused by both mental illness and brain damage.
  • PTSD: Wired for Survival – there are plenty of non-survival things going on in the brain (feeling confused, making puns, happy memories) but taking precedence is a need to survive.

 

Diffuse Brain Injury

A focal brain injury is localized to one area, a diffuse BI is spread over lots of areas, although the damage may be smaller and less intense in those areas. (Wikipedia page: https://en.wikipedia.org/wiki/Brain_injury )

I had a diffuse BI, which is why I had trouble with so many different aspects of functioning: memory, processing, movement, balance, sense of smell and so on. Because the damage did not wipe out any of those areas completely (as it might in a focal BI) I could be fine some of the time, but the more I did, the more my ability would disappear.

This made it confusing for other people (and me!) to understand what was actually wrong.

Everything is Information

I mentioned this briefly in a previous blog, but in order to understand BI, I think it needs more attention.

Images we see, sounds we hear, even physical sensations and smells, are all types of information that must be processed. This takes both energy and a number of different cognitive tools.

The process: Information enters the brain through an organ (eg eyes, ears)  and then bounces around the brain at great speed using existing information stored in the brain to interpret the new data. New connections are made and memories are formed on the basis that the brain thinks they might come in useful, a lot of information is discarded. The decisions for how the information is interpreted and what new memories are made, is made by routines (like computer programs) usually written in childhood and kept throughout adult life.

For example when we watch TV (I’m going to use Community as an example), our brains are very busy. These are some (but not all) of the processes that are happening. We are utterly unaware that most of them are happening:

  • Reading facial expressions – using memory to to decide what the expressions mean, based on experience from childhood of what those expressions meant in the past.
  • Remembering who characters are – using recent memory and facial recognition to know who they are  (eg that’s Jeff, he’s a lawyer), but also older memories of how we feel about people like that (he’s vain, I find this silly).
  • Understanding language – using memory to know what words and expressions mean.
  • Understanding the emotional intent behind speech – the tone, pitch and even speed of speech, indicates this.
  • Interpreting jokes – using all sorts of memory, some linked to the programs itself, some to lifelong memories.
  • Forming new memories –  about characters and situations that will be useful when watching the next episode.
  • Forming new opinions about life – making associations between people and behaviour, between actions and consequences.
  • Predicting – what might be about to happen based on previous experience (there’s Chang, he’s about to cause trouble).

With a BI, some or all of the processes can be damaged – either they don’t happen at all, they happen slowly or they happen wrongly. With a diffuse BI these abilities can change by the minute.

Sometimes I could watch a TV program for an hour and more or less understand and enjoy all of it. Sometimes I didn’t really get plot or even speech, but would enjoy watching the facial expressions (Jeeves and Wooster were perfect for this, they would keep me entertained for hours). Sometimes I couldn’t open my eyes, because trying to process what I saw hurt too much – this pain is difficult to explain. The sensation was a little like trying to do complicated arithmetic in your head, in a noisy room. It was a pain of extreme struggle and frustration which would quickly intensify into migraines, muscle pain etc.

As can be seen in the process above, memory is the way all this information holds together. There are many different types of memory that are stored in different parts of the brain (this website has a nice neat diagram showing the different types). It is possible to completely lose one type of memory, or to partially lose lots of them. Access to these memories can also be slowed down to varying degrees.

The way PTSD affects our processing of information is slightly different. Whereas BI slows down, stops or corrupts certain processes, PTSD tends to distort them through a filter of extreme emotion. Because PTSD involves emotions all turned up to 11, information that should be fairly straightforward (eg there is a dog) becomes a warning or a tragedy (that dog is about to attack me! or that dog is sad, it’s been abandoned, oh my God I have to save it!).

When PTSD and BI come together it can get truly ridiculous, because the faulty information caused by the BI then gets further distorted by the PTSD.

For example, once I was walking down a street and getting tired doing so, therefore my ability to process images started to fail. I saw a crisp packet move at the side of the road, couldn’t process what it was, so the PTSD filter came up with It’s an alien! It’s about to attack! And I was genuinely scared. It was a few moments before my memory kicked in with the information that I didn’t believe in aliens and that it was clearly a crisp packet.

Wired for Survival

PTSD is what happens when the brain believes we are in constant mortal danger. The symptoms are its way of dealing with that as it puts us in a to a physical state where we are ready for fight or flight. Due to a genuinely dangerous event, the brain seems to get locked in that state of extreme panic.

There doesn’t seem to be any logic as to why that particular experience affects the brain that way – like most people, I’ve had plenty of near-death experiences in my life, but this is the one that changed how my brain functioned.

These are some signs that the brain is locked:

(Note: All of these can be experienced when a person is stressed, but then when the stress passes, so do the symptoms. With PTSD, the symptoms are at full pelt and they don’t stop. A frustrating mismatch between our brains and modern life is that most modern stresses require clear thinking, but little actual danger. However, our brains assume all stress comes from physical threat and that thinking is irrelevant in such situations.)

  • Hypervigilance paying too much attention to sounds. This is our brains trying to listen out for danger. It is the reason we get more annoyed by noise when we are stressed and trying to concentrate, because under stress our brains think we are in danger and so are trying to listen for any evidence of that.
  • Not sleeping deep sleep is never a good idea when there is danger.
  • Physical symptoms of stress – tight muscles, gritting teeth, restlessness, these are all signs that the body is ready to fight or flee.
  • Over interpreting situations – looking for any sign that something might have gone wrong and then fretting about it.
  • Struggling to eat – you brain doesn’t want you eating because it is difficult to fight or flee if you’ve just had a big meal.

Knowing that this is what’s happening doesn’t make the symptoms go away, but it does at least give an awareness that our understanding of the world is distorted: that we have no reason to be afraid, that people around us aren’t threatening or dangerous.

One knock on effect of this constant level of threat is exhaustion. When emotions are always set to 11, the body is working too hard all the time, without any proper rest.

People talk quite a lot about the dramatic symptoms of PTSD (flashbacks and panic attacks) but the exhaustion was most debilitating effect for me. It was so complete that it felt supernatural – as if all my limbs had been injected with lead and my mind was filled with fog.

Next BI and PTSD blog: The Basics of Caring for Yourself with BI and PTSD

Brain Injury and PTSD: Understanding Brains

landscape
A soothing landscape in Bolivia to offset any disturbing stuff in the blog

There are a few things that I had to figure out in order to interpret the bizarre world of BIs (brain injuries). I’m going to try and sum them up in two blogs.

The focus of this blog is the discovery that:

Emotions and thoughts make up only a tiny part of what the brain is and does.

Up until I got brain damage I thought I had a clear idea of what my brain was. My brain was the thoughts that I had, the emotions that I felt and the copious amount of daydreaming that I did. I was aware of other stuff going on that I had no control over – my dreams for example – but I saw those as small blips in an otherwise logical organ over which I had fairly good control.

When I got the BI I realised (slowly) that my emotions and thoughts were a tiny, and largely powerless, part of an organ that was extremely busy doing lots of things that I knew nothing about.

Some neuroscientists describe the conscious part of the brain (the thoughts and emotions, the ME part of the brain) as being like the CEO of an large corporation. As in, it thinks it has complete control, but for the most part doesn’t know about what’s going on in the rest of the brain. The CEO doesn’t know how to operate machinery on the factory floor for example, and doesn’t read all the emails sent. Most of the actual decisions happen without the CEO’s knowledge. So that’s us, we think we’re in control because we make a few executive decisions, and strut about looking important at meetings, but our sense of total awareness and control is largely illusion.

Some things that helped me realise that what I thought of as my brain was not my brain (some of these things due to PTSD, some due to BI, some I don’t know, it was all weird):

  • My emotions no longer bore any relation to what was happening, even to what I felt. Emotions happened to me, like a freak storm might happen to me. Panic attacks, mood swings (including intense rage), anxiety attacks and phobias would turn up out of nowhere and without seeming to have any specific triggers. They could all vanish as quickly too
  • I started developing bizarre paranoid delusions – that I was dead, that people from the future were following me etc. When I worked out these may not be truths, I tried to trace their origin back, and found lots of faulty wiring in my head. I realised that my brain was taking small, real events and constructing complicated and nonsensical interpretations of them, leading to intensely held beliefs. I was not consciously aware of this, until I had spent hours figuring it out; I had simply known that people from the future had put cameras in my bedroom in order to watch me.
  • For about a year, whenever I tried to explain something, the words wouldn’t be there, especially nouns. Missing nouns makes communication tricky, I would say things like, “Please could you pass the thing? You know the thing, on the thing, next to the thing, with the thing that looks like a thing.”
  • I would suddenly lose abilities that I took for granted – eg being able to recognise faces or smells. They would often return again later.
  • I no longer felt like I was myself, but couldn’t really work out why. My memories were there, but I didn’t feel attached to them anymore. I didn’t know how to act like me anymore. And mostly, I felt like an alien inside my head, the texture was wrong, the feelings were wrong. It was someone else’s head.

I came to realise the following (more on all of these in future blogs):

  • Emotions mostly follow set routines that are automatic and worked out in childhood. They are a little like programs on a computer that are always running in the background. We all feel that our emotions are automatic because they are a sensible response to a situation, but we each have different routines. For example, my instant, emotional reaction to realising someone is lying to me, is to get angry and confrontational, and that feels like a normal reaction, but other people might react by feeling guilt or doubt. BI and PTSD interfere with these routines, either with extreme or with blank emotions – these too feel completely normal and ‘right’ at the time.
  • Our brains sort through information collected during the day/week/lifetime, connecting pieces of information (from life, TV, games, daydreams etc) to other pieces of information, making sense of it. It’s happening all the time, but we don’t know about it. In order to do this the brain needs to scan the data, mix it up and play with it a bit to see where it fits – I believe this is what dreams are, and also explains why inspiration suddenly happens when we are concentrating on something else. Trauma can cause the cataloguing to get stuck on a loop, as the brain fails to move on from the event.
  • All images and sounds have to be processed by various different parts of the brain in order to be understood, this is different to the cataloguing process, it is instantaneous and enables us to see, hear and understand. Anything you see when you open your eyes is composed of complex information: colour, depth perception, texture are the more obvious details, but there are many more. For example, when you look at a cat, you are aware of fluff and whiskers, but you are also aware of whether you know the cat, whether you like it, whether you need to get it dinner. All of this is information that must be processed so quickly that you don’t notice any time between seeing it and knowing what it is. Any point in this process can get corrupted, either by emotion or damage, leading to the wrong information reaching our awareness.
  • Memory is complicated, it is not stored in just one part of the brain and there are many different types of memory. Understanding and communicating language is so complex, using a number of different types of memory, that many different things can go wrong and it is possible to lose a small detail of language, while the rest remains intact.
  • Who we are is not fixed. We are all changing slightly all the time, depending on mood, events, hormones, time etc. However, the sense of ME, the belief that I AM is very strong, it takes something drastic like BI, mental illness or drugs to shift it. Once shifted, the feeling is so unfamiliar that it can be difficult to process.

Important Note: something I’ve become aware of since I started writing about this, some of it comes across as quite extreme. I believe any illness can seem that way when reduced to the most dramatic events, the actual reality tends to be quite mundane. Most importantly, my life during these years was not all terrible, I still experienced joy, love and laughter. In fact, since many of the symptoms were kind of ridiculous in nature, I (and people close to me) laughed at them a lot.