This is going to be short because I have some evil, life-force sapping virus. I think I’ve had it for a while, which probably explains why my blogs have been so crap recently (doesn’t explain their quality before that, but oh well).
But anyway, the foxes came back, and had a sleep near their shoe, so I glad I kept it. My phone wouldn’t get a good enough picture, so this is from Hamoudi’s. Look at the little chaps!
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.
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
However, there are a few things I had to figure out for myself, so I’ll put those here in case they’re useful.
As always any additional information in the comments is much appreciated.
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.
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.
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.
Eventually, I worked out it was like this. There are different types of 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.
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.
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.
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.
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).
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.
Continuing with things I needed to understand about my brain:
For previous BI and PTSD posts look under the category to the right.
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.
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:
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.
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.)
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
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):
I came to realise the following (more on all of these in future blogs):
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.
inkbiotic 