How to Fight Depression: Final Method

Repeated small note: this is one of three methods that I found worked for me last week, but they aren’t replacement for medication, therapy or living healthily, they are only in addition to those things. They can’t cure depression, but notice the warning signs early enough and they may help to stop it taking hold. There are plenty of excellent blogs and medical sites talking about depression and the various ways to fight it, but I haven’t seen these three methods (methods one and two in previous blogs) anywhere else, so I’m writing them down in the hope they will be of use to someone. If they don’t work for you, please try not to get frustrated, we are all different, and depression is a complex illness. 

When the doldrums start to take hold, try:

Doing something you don’t want to do

This sounds counter-intuitive. When I start getting depressed, all I want to do is hide in comforting, often repetitive, behaviour. I want to watch TV programs I’ve seen a thousand times before; or eat cake, then biscuits, then more cake; or browse the same websites over and over. However, instead of making me happy, ultimately this behaviour makes me feel useless and that I’ve wasted time; which leads to me feeling even more disgusted with myself.

As I explained in previous blogs, the things you want to do when depressed tend to be the very things that will lead to more depression. It’s as if the depression gremlin himself is taking control of your behaviour to perpetuate your state of misery. In order to reduce the power of depression you have to ignore what the gremlin is telling you, and do the opposite. In this case that means stop seeking out comforting, lazy behaviour and do something useful that you don’t like doing.

The thing you choose to do needs to fulfil certain criteria:

  • Not too difficult or stressful, something you can definitely do, even when feel rough
  • Something that needs doing and that you tend to avoid doing, so that you can feel smug afterwards
  • Preferably something physically active
  • If not physically active, then something that takes all your concentration

The best things I have found are to clean the flat, sort out bills, or have a tidy up/clear out. Or all of those.

Now the depression will try and convince you that it isn’t fair you should have to do something crappy when you’re feeling bad, but that’s because it wants to survive. And if you’re feeling crap anyway, then you might as well make the most of it.

At the end of the activity you may still feel sad, but at least you won’t have an additional reason to be angry with yourself. And your home will be clean.

A final round-up of the information in these three blogs:

The best time to fight depression is before it has really taken hold. It’s not easy to work out when this is happening, so try to pay attention to when your thinking starts to get negative, learn what kind of thoughts appear when you start getting low.

When are you are still in those early stages, the following methods may help:

  1. Paying attention to pleasant sensations/happenings in order to combat negative focus. Method one here.
  2. Being nice to people, so that they are nicer in return and that makes you feel more positive and happy. Method written about here.
  3. Do something that you tend to put off, so that you can feel smug afterwards.

 

I hope that at least one of these methods is helpful for you. If you’re suffering with depression, please remember you don’t have to go through it alone.

 

 

 

 

Fighting Depression: Method Two

Small note: this is one of three methods that I found worked for me last week, but they aren’t replacement for medication, therapy or living healthily, they are only in addition to those things.. They can’t cure depression, but notice the warning signs early enough and they may help stop it taking hold. There are plenty of excellent blogs and medical sites talking about depression and the various ways to fight it, but I haven’t seen these three methods (method one in yesterday’s blog, method three on Friday) anywhere else, so I’m writing them down in the hope they will be of use to someone. If they don’t work for you, please try not to get frustrated, we are all different, and depression is a complex illness. 

Be nice to everyone.

On the whole I think I’m a fairly cheerful and friendly person, however, when that depression gremlin starts to tighten his grip on my soul, I become negative, whingy and I don’t smile. This is the depression keeping itself going, because by being unpleasant I cause people to be unpleasant back and then the gremlin convinces me that everyone is being horrible because they actually hate me, so I become even more unhappy and unpleasant, and the misery continues. Usually I tell myself at the time, that I physically can’t smile and be friendly, and there is definitely a level of depression when this is the case, but there are many points before that when it is difficult to be nice to people, but still possible. And very much worth it.

And I don’t think I’m the only one who acts this way, I’ve noticed many other people get tetchy and snappy when depressed, so that everyone around them also becomes tetchy and snappy; it’s self perpetuating. In order to stop this cycle, the best method is to be nice. Even to people you don’t like; especially to people you don’t like. This starts a new cycle, you’re nicer to people, so people are nicer to you, so you feel happier, so you feel more able to be nice.

Now if you are struggling, the depression gremlin  is probably whispering to you that you shouldn’t have to be nice to people if they can’t be bothered to be nice to you; that you haven’t even the energy to be nice anyway; that you’re too hopeless to even try. However, he’s saying all that because he doesn’t want to create a situation that is likely to make you happy. Remember why you’re doing this: not for anyone else’s benefit, but for your own.

Note!: If there’s a danger that people might take advantage of your niceness, remember being nice doesn’t have to mean you do whatever anyone wants. You can still say no, just do it gently.

 

 

 

Three Little Things to Fight Depression

For all my posts about mental illness and brain injury, I haven’t talked about depression, because up until now I didn’t have any useful coping methods to pass on. However, the last few days I’ve felt the depression gremlin creeping up on me, but instead of it dragging me into the murky depths as usual, I figured out a couple of ways to ward it off that actually seemed to work. So in hope that these methods might help someone else (although very aware they might not), here goes…

Spotting the Warning Signs

It’s important to recognise the early signs that depression is curling its fingers around your thoughts. Once the depression has you fully in its grip, most methods of escape are useless (including the following ideas). For me, the warning signs are: believing that nobody likes me, ruminating on past unfairness that doesn’t matter anymore, and thinking of myself in a negative way. When I notice most of my underlying thoughts are like this, bubbling under the surface, then I know I’m in trouble. The sooner I spot the signs, the more able I am to stop a full attack.

So if you notice the first hint of the blues, this might be something to try to stop them taking hold…

The First of the Three Little Things

Focus on small but lovely sensations/events.

This sounds twee I know, and seeing it written down is already irritating me, but when I tried it it simply worked.

Method

Every time you find negative thoughts crowding your head, stop and take a moment to pay attention to something pleasant. For example focus on how your feet are warm, or think about a friendly text message you got earlier, or just remind yourself that something nasty isn’t happening: eg I’m really happy I don’t have to go to the dentist today. Properly focus on that good thing, let it be all you think about for a few seconds.

If you are anything like me, you’ll now be thinking: but how can I focus on my warm feet when my hands are cold? Or Maybe I don’t have to go to the dentist, but I do have to go to work!  The thing is, there are always going to be bad things happening, I’m not asking you to pretend that there aren’t, I’m just asking you to try ignoring them for a few seconds and focus on something good. Don’t just do this once, if you find it helps, do it repeatedly.

And with the negative response, I don’t believe it’s the clear and rational thought that it seems to be, but the depression messing with your perspective. Because the depression gremlin is very persuasive and he wants to survive, he makes sure that you perpetuate behaviour that will make you miserable. If you try and do anything that might quash the depression, then he needs to convince you you’re wrong. So, ignore the nasty voice telling you to dwell on shitty things and, for a few moments, concentrate on the delightful; relish your senses, or a memory, or just anything nice. Give your mood a few moments of relief.

I reckon this method works because a big part of depression involves the build up of whispered nasty thoughts. You might not even notice these thoughts until they have taken you over, but they are there: telling you you are crap, that your life is awful, that everything is going wrong, that you can’t cope. It’s very difficult to just stop thinking these thoughts because they are so insidious and constant, but it is possible to drown them out with positive repetitive thoughts.

Next method on Wednesday…

Let me know if any of you find this helpful. I’m always very aware with depression that any advice on overcoming it can seem like trivialisation of a very serious and complex illness. I’ve been battling the gremlin for most of my life, and I know that there are no simple, cure-all solutions, but I’ve managed to figure out a few methods that seem to help me,  and I really hope they might benefit someone else too.

 

Because of I, Daniel Blake…

How our benefits system costs the tax payer more money

Last weekend I watched I, Daniel Blake (late to the party, as always). It was moving and beautiful, but I’m aware there are many people in this country who think that a film about benefits does not apply to them. So, using this film as inspiration, I wanted to point out a couple of things to those people:

Our benefit system is costing you more money by punishing claimants.

  1. The benefit system makes sick people sicker for longer, so they claim for longer.
  2. The benefit system creates benefit cheats.

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The benefit system makes sick people sicker for longer

We all know that stress is a killer, but stress also makes sick people more sick, so they can’t work, for longer. I had a brain injury, but what really prolonged my ability to get better was extreme stress. The stress was rooted in the accident, however, I didn’t show any symptoms of it until I tried to claim for benefits and that was clearly a trigger. One of the most stressful things you can experience is to have your survival in the hands of lying, incompetent people who don’t think of you as human. The film explores how this feels, how it destroys vulnerable people, breaks them down.

While claiming I found the system so relentlessly illogical and devoid of a duty of care that I became convinced that the government was trying to kill me, that was first sign of psychosis I experienced, after that it got worse. I was on benefits for six years, I think if I hadn’t been pushed to that point by the benefits system, if I could have relaxed, safe in the knowledge I was cared for and concentrated on recovery, I could have gone back to work in a year.

This may sound like a one off extreme experience (or maybe melodramatic), but it has happened to every genuinely sick person I have known who has tried to claim; because all illness, mental or physical, is made worse by stress. And everybody, no matter how ill, goes through the same system of being treated like a scrounger, lied to, tricked, dismissed.

Add to that the situations shown in the film – people being sanctioned and then not being able to eat properly or heat their home – all these things increase stress, prolong sickness and lead to the claimant needing benefits for much longer.

The benefit system works better for cheats than for the seriously ill – so the sick become cheats

The system is designed to be illogical and exhausting in order to put off benefit claimants. The problem with this is that benefit cheats have the mental and physical resources to deal with endless nonsensical and wrong instructions, they have the energy levels necessary to spend hours on the phone and they know the system so know just how to play it. People like Daniel in the film have never claimed benefits and don’t understand the system. They tell the truth (because they assume that is the right thing to do) and they are short on the strength necessary to play the game, all of which means they will not get money.

As a result, many seriously ill people give up trying, they rely on friends and family to survive or they kill themselves (see below for some  info about casualties). Dan sold his furniture and went hungry; and this is a seriously ill man who has just had a heart attack. I was lucky enough to understand computers (which Dan doesn’t) and I had a good friend to take over filling out forms and calling up advisers. Even with this help, I learnt that if I was to get money to live, I needed to change how I acted. Honesty and doing what I was asked to do, simply didn’t work. So I learnt to lie and cheat and manipulate, and that was how I got the money I needed to live.

Which is where the problem lies for the tax payer: The benefits system creates cheaters because honest people don’t get money. And being a cheater doesn’t just go away when you get better. If you have ever had someone repeatedly screw you over when you are at your most vulnerable you will perhaps understand: it changes you, it creates a cynicism and an anger that don’t vanish, and cynical, angry people, who have learned to work the system, aren’t good for society.

 

This blog was originally going to be a review, but there are plenty of excellent reviews about this important film and I had nothing helpful to add. In case you missed them…

Some facts about the system:

And finally a quote taken from the review above:

“I must emphasise one point. I, Daniel Blake is not a “poverty flick”, nor even a film about poverty. It’s about dignity, about society recognising you as a human being and not as a number. It’s about the relationships we create with one another to save us dying from state-imposed loneliness. The way we treat people on benefits becomes a metaphor for our society’s radical failure to recognise the humanity in others.”

Inside the House of Dreams: an adventure

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Yesterday I explored the House of Dreams, the museum/home/art installation of artist Stephen Wright. A tangled delight of junk, jumble, thoughts and images hiding behind a blue gate in Dulwich, London. The museum is only open a few days a year and photos can only be taken of the front garden, so what you see here is a fragment. I think that’s for the best though, photos could never give you the experience: the chance to explore, touch and be surrounded by the contents of the house.

A colourful jungle, absolutely crammed full of ephemera and words, the house contains powerful messages about love and loss, but also about acceptance of the self. Stephen has woven his thoughts and experiences into a visual adventure that others can share, telling a tale of love, grief and defiance.

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Part of what makes this house special is that the artist and his partner, Michael, both spend time talking to visitors one to one. I think I was my usual nosy, odd self and asked lots of questions, but both were patient and I learned first hand about how the house came into being and a little of what it means. I was also able to ask about why it was called the House of Dreams. For Stephen and his previous partner Donald the name was arrived at organically. It grew, like the house did, out of a random idea coming to life. For me, the name has real significance, tied into my understanding of what dreams are.

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When I had the brain injury (gone on about here) I had many dreams, and in a few ways they were like this house: vivid, crowded and stayed lodged in my thoughts throughout the day. I decided then that dreams are the brain’s way of frantically sorting through information in order to make sense of it and learn from it. From tiny irrelevant details of a TV show to complex emotions, the unconscious brain spends the quiet time at night filing and connecting at random each nugget of your life, testing one against another until each is finally slotted into place. My dreams were my brain’s way of sorting through my own experience of death and illness. This house seems like Stephen’s more external way of doing the same, it enabled him to process intense grief (he lost his partner and both parents in a very short space of time). It uses the same random juxtaposition of dreams: putting a sculpture showing his feelings about his father’s death next to a collection of brightly coloured bleach bottles; hair curlers next to diary entries. Walking through the house was a little like walking through someone else’s dreams.

One of the most powerful messages I got from the house was to be fearless with who you are. To boldly be who no one can else can be. There is  a lot of pressure to hide our oddities, and as someone who can weird people out quite easily, I tend to tuck the messy edges of my personality out of sight. That’s an easier way to interact in society, but art is not about behaving and being normal; art should be the explosion of the self, the unfeterred release of who we are. Mostly I write fiction and I’m always adamant that I don’t write about me in my stories; but it’s important also that I don’t distance myself from what I write, that I don’t sketch half-hearted thoughts, but instead throw myself into the eye of the storm. That is certainly the inspiration I’ll take from this house.

More info, videos and pictures here. If you ever have the chance to visit the house on one of the open days then you really should. We live in mass produced, largely blank and repetitive world, the chance to see something unique and as inspiring as this is well worth the effort.

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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.

BI: Overcoming Phobias and Panic.

Phobias have been found to occur frequently in people with traumatic brain injury (the word ‘traumatic’ here means physical trauma rather than emotional). However, I would guess they can also occur with PTSD as a distortion of triggers.

 

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Note: The below method is a way of dealing with fairly simple phobias and panic, but it’s important that anyone experiencing psychological symptoms from trauma or BI also gets professional help.

 Phobias

In the year after the accident I acquired a ridiculous number of phobias. They seemed to appear at random. I became scared of the dark, crossing the road, insects, mice, conversation, sleep, lack of sleep. Some of these phobias I still have a little now, but for the more concrete ones I was able to come up with a method for getting rid of them.

My understanding of how a phobia sticks around is this:

  1. Usually, an incident causes us to associate danger with the phobia – let’s use Trevor’s phobia of the dark as the result of falling down stairs in the dark, as an example. With a BI, the phobias seem to appear without cause, but the effect is exactly the same – fear associated with specific stimuli.
  2. Every time afterwards, when Trevor is in the dark, he experiences fear, not just thoughts and emotions, but tangible physical feelings. His heart rate increases, he finds it difficult to breathe, he starts to panic.
  3. These intense reactions feed into the fear. He becomes more afraid because his body is reacting in an extreme way that is, in itself, scary ie. positive feedback.
  4. Having experienced the frightening symptoms of terror in 3. while in the dark, his brain (not the conscious bit, but all the automatic processes he has little control over) adds a few new red flags to the idea of ‘dark’ and his phobia grows.
This can also be shown by a nifty diagram

Phobias

In order to overcome a fear it is necessary to control the physical reaction to it and stop the positive feedback, this means creating new, calm associations with the phobia, to work at its blurry edges.

The Method

So Trevor starts to inch his way into darkness, using the following:

  1. He stands in a lit room, but at the doorway to a dark room, not scared.
  2. He breathes slowly, calmly, reassures himself that nothing can happen, the light is right there, he can see fine. He concentrates on the sensations in his feet, his hands; still not scared.
  3. When he feels completely calm, he takes a step forward into the darkness. He starts to feel a little panic, slight increase in heart rate and speed of breathing.
  4. So he stops. Repeats 2. until he feels calm again, all the while not moving.
  5. Repeats 3.
  6. Repeats 2.

If he reaches a point where he can’t calm himself, then he takes a step back into the light and repeats step 2. It’s important that his final association with the dark is one of calm, this is way more important than getting as close to his fear as possible.

Sometimes this takes a few attempts, and it is a slow way of challenging anything, but it seems to work.

If your phobia is one you can’t physically approach in this way, then there are substitutes. For example: looking at photos of it, reading about it or writing about it. With each of these methods, it is still important to approach the fear slowly, giving yourself time to be calm.

Panic!

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It’s also a method that can also be used in a number of other situations when fear and panic take over. Panic is very destructive for people with a BI, because it causes the brain to shut down functions that are already struggling. Whether trying to have a conversation, read a train timetable or cross a busy road, it’s very easy for someone with BI to panic when they find something difficult. This leads to irrational thinking taking over, eg I can’t do this! Why can’t I do this? I can’t do anything! or even I don’t know what’s happening! I’m in danger! But that panic then further shuts down reason and cognitive skills, leading to increased panic – the positive feedback shown above, and shown in the diagram below.

Panic

The truth is, you can’t make the BI go away, the difficulties will ease, but it takes time. However you can stop the positive feedback from making the problem worse. This also has the long term benefit of reducing stress, which in turn gives your brain and body the peace they need to heal.

The Method

Whatever it is you’re trying to do, when it starts to get difficult, as long as you’re not in immediate danger, pause for a moment and go through the following steps (this is almost identical to above, but to reiterate…):

  • Breathe slowly, calmly.
  • Reassure yourself that nothing can happen, you are fine.
  • Concentrate on the sensations in your feet, your hands.
  • Keep breathing and be aware of your breath.
  • When you feel in control, carry on.

Remember it’s ok to find things difficult, and most of the time it’s fine to wait, there’s no danger involved. The danger only comes when panic takes over and you make bad decisions (speaking as someone who has panicked crossing the road and then walked out in front of cars, leading to a phobia about crossing the road!)

Final notes:

This method does not work instantly, it takes time and practice to be able to control panic like this. The best time to start practicing is when you don’t need it and already feel calm.

This method uses techniques I learnt from meditation and mindfulness. Both of those are more difficult and take commitment and are not necessary for this method to work. However, if you can learn them, they are incredibly valuable.

 If you have any questions about this, please free to ask in the comments below.

 

 

Brain Injury: Refinding Purpose

An Initial note about how irritating positivity can be

I have a very fine line to tread here, between giving positive advice and seeming dismissive of illness altogether – the ‘buck up and you’ll be fine!’ bollocks that well-meaning idiots come up with. The latter is never my intention.

So I will clarify: Brain injuries are often impossibly tough to deal with. Many times during my recovery I gave up, I decided that it was too difficult and I couldn’t cope. Unfortunately, simply giving up didn’t help much, the problems didn’t go away, so I had to carry on.

For anyone going through this now, my heart goes out to you, you have absolutely every right to think Fuck your positivity! My life is shit! And when you are feeling like that, this blog probably won’t help. However, there will be other times, when you feel a little more able to make plans and hopefully I can pass on what I learned about how to do that.

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Some drawings I did while recovering

 

Losing the Things I Loved

With the BI, one of the toughest things to come to terms with was that I could no longer do the things I loved. I was struggling so much with getting my brain to work, that I had to give up studying; my job as a gardener; I couldn’t read books; I struggled with seeing my friends; I couldn’t even think of going on an adventure to a new country. I felt that everything that made me happy had been taken away from me and that there was nothing in life I could enjoy. This was a distortion of my situation, maybe an understandable one, but one that didn’t help me at all. I still had people in my life that I loved, but what I needed was purpose, without that everything felt meaningless.

There are three points to this blog, they take time to be fully understood (or at least, they did for me), but I believe they are crucial to being happy when recovering from BI:

  1. Your situation now, is not your situation for ever. Try not to think about what all this means for the future, the important thing is to find a way to be happy and calm now (not just for happiness’ sake, but also for your health), and one way to do that is to find something that will engage you, stimulate your mind but not stress you. Any more complicated questions can be left for later.
  2. Happiness lies in having purpose and that comes from investing time and energy into something and then getting something back out as a result. The two ‘something’s can be almost anything
  3. There are infinite ways to live your life, even with massive restrictions, there are many passions to pursue, and many ways to get a sense of purpose, but you will never discover this if you are focused only on what you have lost.

Notes on Happiness

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I believe that happiness and meaning in life are far simpler to achieve and far less restrictive than we are trained to think. You do not need to have a relationship, career, kids or money to be happy. Those things can all make you happy, but they can all make you unhappy.

I think the reason for this is that it doesn’t matter what you invest your time and energy in (eg children, a career, painting, learning French, collecting thimbles) so long as you make an effort and get something in return (love, success, beautiful pictures and the joy of painting, knowing French, a beautiful thimble collection).

  • If you don’t invest time and energy, but get something out anyway (I imagine being the child of rich parents is a little like this, without any effort you can have whatever you want) then you will feel there is something missing, an emptiness.
  • If you invest time and energy into something, but then get only bad things in return (for example, when the child you’ve loved and nurtured says she hates you, or your boss ignores the project you’ve been working on, or if you decide you actually hate thimbles) then you will feel your passion has been wasted and you will be unhappy.
  • If you invest energy in nothing and get nothing, you won’t be happy at all.

Being ill does not change this, but it can make it tricky. It may be that the things you invested energy in before the BI are either no longer possible, or no longer bringing you joy, and this is why you may need to find new passions.

Infinite Passions

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When I was ill, my frustration came from thinking that the only things worth doing, were the things I could no longer do. However, the truth is they were just the things that I had been doing up to that point, they were not better or any more conducive to happiness than the things I was eventually able to do after I got a BI. It’s true that taking up new passions was extremely difficult, and I worried that I’d never be able to enjoy them because of that, but luckily that isn’t how enjoyment works.

Having to invest more energy into doing something can, with time, make it more enjoyable than when something is easy.

Some tips on finding new passions

  • Experiment, try as many different things as possible: painting, writing music, getting a penfriend, sending postcards, knitting. You may hate many things that you try, or find that you aren’t able to do some of them, but there will be something that you can do.
  • Pay attention to what other people are doing and copy them. Ask your friends and family, look online (here’s a Wikipedia list of hobbies )
  • Revert a little to childhood. With a BI, you have the perfect excuse to pursue hobbies you loved as a child. Play with Lego, draw cartoon characters.
  • Don’t compare your ability now with what you could do before. For starters, if you are just setting out on a new skill, it will take time to learn to do it properly. For seconders, although having a BI can make things massively difficult, it can also give you a unique perspective on  whatever you pursue. Personally, I’d rather be unique than good.
  • Use technology – there are now so many apps that can aid a new passion, it’s worth exploring them to see what’s available. I have a friend who has become a master at creating beautiful music using free instrument and editing apps. .
  • The Internet is an incredible aid. Even people who have grown up using the Internet, tend to stick to the same kind of sites that they’re used to. Instead go exploring. With a BI, change and unfamiliarity can be quite unnerving, but the Internet is a fairly safe place to be adventurous in. Take it slow, read blogs that suggest sites, use sites like Stumbleupon, bookmark anything interesting you find even if you can’t cope with looking at it the time. Plus forums are a great place to meet and connect with people.
  • Approach any new activity without the expectation of a specific end result. Even more tricky is that you might not enjoy the process of what you’re doing at first, but don’t give up for that reason. Once you have mastered the basics it gets easier and you can start actually enjoying it. I took up drawing at this time (some examples are in this blog), I’d done an art degree years before, so my expectations were high. Often I hated what I did. It took months of trying different doodles before I found a new style that I both enjoyed doing and liked the end result. Some of the pictures from that time have ended up part of the Xogulano Islands blogs that I write about. They aren’t great drawings, but I love them because I don’t know anyone else drawing pictures like that.
  • Don’t dismiss something because you tried it before the BI and didn’t like it. With a BI, your abilities have changed, your passions may also have changed.

Final Advice on Investing your time:

  • Don’t have all your eggs in one basket. Almost any endeavor can fail, and if all your time has been invested in one thing, that can be upsetting.
  • Try not to be swayed/dissuaded by what society/peers tell you, you should/shouldn’t be doing. It’s irrelevant. It’s always irrelevant, because people are massively varied and the things that can make them happy are also massively varied.
  • Try to take into account how much energy and ability you have at any one time and try to have different interests for different levels of ability. Sometimes I didn’t have the energy to draw, sometimes I had enough energy to go out and take photographs, sometimes all I could do was shut my eyes and think up stories. It was good to have this choice. Because my memory was so bad, I found it useful to write down the options and then refer to them when needed.

Note: I haven’t dealt with motivation at all in this blog (I’m trying to keep them to a manageable size) although I’m aware that with a BI or just when exhausted from illness, motivation is a real problem. I will focus on it later.

As always, any comments, additions or questions are welcome.

 

 

Brain Injury and PTSD: Adventures in Brain

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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