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Series 1: Episode 6

Coming to terms with a brain injury

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Coming to terms with a brain injury can be particularly difficult, and in this episode, we look at how this can impact you and your recovery and how important it is to accept these changes and the help you may need.


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Ashwini - 00:00:24 -  00:01:19 

In this episode, we're going to be looking more at the issue of coming to terms with a brain injury and the impact of a brain injury. I think certainly from my experience of working with a number of people with brain injury, it's a very important step in someone’s recovery to gain that insight because without it, it's very difficult for that person to understand how their brain injury has impacted them, the way they function, their personality, etc. And also, to then go on to accept support and really make progress with their recovery. And I wonder Brooke, how did you find that process? I mean, did it take you some time to come to terms with what happened to you?

Brooke - 00:01:19 - 00:02:09 

I don't know if I have accepted it yet. I’m on my way to accepting it, but sometimes I don't know if I've fully accepted it. It's one of those things that initially you’re in hospital and things are kind of going OK, and you can exist in that space for quite a long time. 

During the early days you don't really realise what's wrong with you and I think the first sign that your brain is starting to work is when you start to look into what's happened to you. You then find out the implications and that it’s going to have on the rest of your life, and with that comes a massive wave of depression. And that's something that doctors will look out for; for people getting depressed.

Ashwini - 00:02:09 - 00:02:42 

Yes, and we talked in an earlier episode about the fake environment that you're in when you're in hospital and people are putting those structures in place for you. So you think you're doing really well, and you are doing really well - it's not that you're not at all, but it's a very different kind of environment. And then, when you're discharged out of hospital, that's when all of a sudden that shock can come into place that actually things are harder than I thought they would be. I thought I was doing really, really well and now I'm really struggling.

Brooke - 00:02:42 - 00:05:09 

One thing that you don't realise is that everything in hospital is planned and structured. It's like being at school again; you get a timetable. You might have physiotherapy and then later on you’ll have psychology and you'll have occupational therapy and you have all these things. But what you don’t realise is that when you’ve done all these things, they're all spaced apart. I used to do physiotherapy in the afternoon or something like quite cognitively demanding like psychology would be first thing. 

You just you don't realise that all your life has been like it; it's been on a timetable. It's been pretty planned. You had a school timetable, didn't you? Even though you never thought about it, you just turned up in the morning, but everything was planned. All the lessons were pre-planned.

When you get sent home and you might be looking forward to going home like mad. But you get home and then very quickly you realise that a day is a long time to fill, especially before you've got rehab in place. 

I tended to really suffer because I’d never had any thoughts about planning the day. What to do first; like I should do anything cognitive in the morning, I should do physical things in the afternoon and I shouldn't rest too late. I used to go to bed just randomly in the day and then I would go to bed randomly at night, you know, like really late. That would impact on my sleeping and I wouldn't be able to sleep and then it would just carry on to the next day. 

Something that I suffered with was fatigue and that gave me massive depression. I was doing so well in hospital, but obviously hospitals aren’t a real environment. It's not real and not a real scenario. You don't realise all the planning that had gone into your hospital stay, you then have to do that for yourself when you're getting out into the real world.

Ashwini - 00:05:09 -  00:05:54

Yeah, yeah. And also I guess I hate the word normal, but in the normal scheme of things, let's say you have a physical injury; you break your leg, you go to hospital, you have maybe an operation and some physio etc. And then you’re discharged, and you know that it'll take a certain amount of time for that leg to recover; as long as you know you carry on, mobilising it, doing physio, it will recover, it will get better. I think certainly when people talk about brain injuries, quite often we talk about a 2–3 year recovery period for the most gains in recovery, but that can be quite misleading, can't it?

Brooke - 00:05:54 - 00:06:59 

Yeah, with anything like breaking a bone, there's a lot of knowledge about most injuries, about how long they take to recover from and you know when you'll get the strength back and what you’ve got to do to get that strength back. The brains not fully understood yet, and it's quite a way off being fully understood and that's one thing that got me. 

You hear a lot that a brain injury takes three years to recover and then after that it's the strategies and the techniques that you put in place to cover for the functions that you've lost. I used to cling onto that really badly and I thought after three years, I'll be well. I remember it honestly. I remember it right up until the last day and then when I wasn't ready the next day, I fell into a big depression because I just I was just pinning my hopes on that that three year cut off point.

Ashwini - 00:06:59 - 00:07:34 

Yeah, I think for the benefit of our listeners as well, it would just help to explain that the initial two to three years, and you know, there's a bit of a range of opinion on that, but that's really in relation to when the brain makes the most recovery following a traumatic brain injury. But after that period, the recovery tends to what we call plateau, so the rate of recovery slows down, but it's not to say that that's it. Your brain can continue to make a recovery, and I'm sure you feel that you are still recovering in many ways.

Brooke - 00:07:34 - 00:08:36  

What I would say to anyone was you've got to use your brain and the only times I've ever plateaued or gone backwards is when I've stopped, and I try to avoid the word believe, but stopped believing in myself. You definitely have to challenge yourself. The way I did it is by pushing myself out of my comfort zone and I started doing something that I've never ever done in my life before, which was public speaking. The first one I did was for a local Headway group in Scarborough; shout out to the Yorkshire Coast Headway group!

It just started off with me telling my story and I got quite a buzz out of it and it's something that I then started doing. My auntie worked for the council and I got into speaking about road safety with the local authority.

Ashwini - 00:08:36 - 00:09:44 

I know certainly from supporting a number of people with brain injury, particularly after an accident, is that there is that impatience quite often to try and get back to what was before. Get back to work, in particular, get back to life as it was and it can be very difficult for those individuals, and certainly I've seen it over the number of years that I've been working with them that it's coming to terms with almost the new you and coming to terms with how your brain injury has affected your ability to do certain things.

It's not to say that you can't do them, but you might not be able to do them in the same way or as well as before, and it's about finding ways to compensate for that, and strategies around it. But that can be quite challenging in itself because it can really speak to your sense of identity. Your sense of self, and that must be very difficult to come to terms with.

Brooke - 00:09:44 - 00:10:55 

I was often told that I could do anything I wanted to do, and I suppose that was my occupational therapist trying to give me more self-confidence and what I've come to learn is that you can't do anything you want to do anymore, but you'd be surprised at what you can do, you’ve just got to do it in a different way. Like for instance, I was massively affected by fatigue and in ways 15 years on, I still am and I found that what I need to do is drip-feeding and I do little things at a time. 

I have done a lot of blog writing and what I can't do is write a full blog in one go. I can't sit for a few hours and write one in one go. What I do is maybe half an hour increments then break for a cup of tea or coffee or whatever and do it in little bits like that. Then I can produce some quite good stuff but nothing good is going to come when you're fatigued, so if you start to feel yourself getting fatigued, I think you know it’s time to stop.

Ashwini - 00:10:55 - 00:11:28 

And coming back to the issue of coming to terms with brain injury, you've set out there your strategy of how you deal with it, but before you can even set that strategy out the bigger issue is actually accepting that the way you can do something, like sit down and write a piece, has changed because of your brain injury; because of the effects of that and it is, it's incredibly difficult, I'm sure, to come to terms with.

Brooke - 00:11:28 - 00:11:44 

That's one of the ways in which I've not really accepted it. I still think I can do more than I can; I'll still sit down with the full intention of sitting down to write for like 3 or 4 hours, and I'll get about half an hour into it and then just drift off.

Ashwini - 00:11:44 - 00:12:34 

Thinking about some of the people I've supported as well, I often think it's quite a fine balance and often it brings up very interesting ethical questions as well. Thinking about people who are really keen to get back to work, but perhaps can't go back to work straight away because of their injuries, because ultimately if we sent them back to work it, we could be setting them up to fail, and that could then plunge them into greater depression. Rather than trying to instead put together strategies, grade it, work with the employee so that we can make that return to work as meaningful as possible. But you know there does need to be that acceptance that help is required to get there.

Brooke - 00:12:34 - 00:13:26 

The thing is with employers as well. For instance, I worked at a bar immediately before my injury and I wanted to get back to it. I didn't like sitting at home and wanted to get back to doing something and I just went in to help out in the stockroom moving boxes of beer and stuff about. But my boss just thought I used to get a little bit tired and he just thought after a few weeks I’d be back, once I got my stamina back up and that was nearly 13 years ago now. People need to, especially with people returning to work, they do need to be more knowledgeable about it because employers might just think they get a little bit tired, and therefore need maybe more rests. It's not really about that. There is so much more traumatic brain injury than that.

Ashwini - 00:13:26 - 00:13:41 

Yeah, absolutely. Some people are lucky to have sympathetic employers who are willing to accommodate and find alternative roles, or change the role for that individual, but we also know that that's not always possible for so many reasons.

Brooke - 00:13:41 - 00:13:44

No, I know a lot of people won’t, yeah.

Ashwini - 00:13:44 - 00:14:18 

I suppose another thing to bear in mind is the importance of celebrating improvements, celebrating steps in recovery. It doesn't have to always be about the big wins, even something that you could do today that you couldn't do a few days ago could be really key. Did you go through any of that in your recovery, did you keep a log of what you were doing, or did anyone else point that out to you?

Brooke - 00:14:18 - 00:14:54 

I suppose I've been quite hard on myself. My psychologist always told me that I refused to give myself praised. But as opposed to celebrating, just acknowledgement and acceptance. The thing is when you're recovering some of the progress will be so slow because you see yourself everyday, so you don't notice the difference between one day to the next. It's not until you see somebody you haven't seen for let's say six months or a year even, that they will notice how much better you are than you were before.

Ashwini - 00:14:54 - 00:15:07

Yeah, you're right, you don't see it yourself, but someone else might notice that you've managed to get through a whole conversation, for example, or you've managed to sit down and watch a film.

Brooke - 00:15:07 - 00:15:13 

Yeah, you don't notice that you can't get through for conversation because you’re yourself, so you don't notice.

Ashwini - 00:15:13 - 00:15:36  

And thinking back to this idea of a fake environment in hospital, I'm sure when you were in hospital and you were making those steps of recovery that you'd get a lot of praise from the nursing staff and the clinicians around you, but once you were discharged home then presumably that went.

Brooke - 00:15:36 - 00:16:05

When you get home and you’re discharge from hospital, something we've been looking forward to for so long, one thing that you used to get when you were in hospital was encouragement. You'd be encouraged on every step of your recovery. But when you get home that stops, and when you leave hospital, that's when your recovery really starts to be honest and because you're no longer in that fake environment, you have to kind of fend for yourself.

Ashwini - 00:16:05 - 00:16:08

And that’s probably when you need that encouragement the most.

Brooke - 00:16:08 - 00:16:11

It says, yeah, yeah, and there's nobody there to give you it.

Ashwini - 00:16:11 - 00:16:29

I suppose it’s perhaps a helpful tip that we could give to anyone supporting someone with brain injuries to make sure that those milestones are celebrated, that encouragement is given at every turn, it’s not just about the big things.

Brooke - 00:16:29 - 00:16:36

When you're out there in the wild on your own, you can easily forget that you're making progress.

Ashwini - 00:16:36 - 00:17:25

Yeah, and it's important as well to try and maintain a focus on the positives, which I know is easier said than done, but it really can help to go forwards. I remember a while ago, good few years ago, having a discussion with a case manager and it was always interesting to me because from a litigation point of view we always look at what somebody can't do to formulate the case. But as a case manager, she was telling me that actually I'm more interested in what someone can do and because my job is to maximise that as much as possible and really help them to celebrate those wins, and I think it's important that we do take time to focus on the positives.

Brooke - 00:17:25 - 00:17:32

And I've told you about people being very prone to depression. If you focus in on what they can't do all the time, that's going to tip them over the edge.

Ashwini - 00:17:32 - 00:18:05

Yeah, absolutely. So I suppose in terms of help and advice, we can give to our listeners who might be coming to terms with their own brain injuries, or family and friends who are supporting someone through brain injury. Acceptance is huge. That's probably the first step.  But it's ok also, if you don't fully accept it and you yourself have said you're not sure if you've really come to terms with it, that's OK.

Brooke - 00:18:05 - 00:18:09

You have to accept there's something wrong with you, and you know that it's not going to be an overnight fix.

Ashwini - 00:18:09 - 00:18:49

There's no magic pill despite what the internet try and sell you! I guess accept that somethings wrong or that there is a need for help and support and to find ways of coping and accepting that help and support. But don't rush through things either -  your brain has just suffered a huge insult and it needs it’s time to recover. It's OK to take things slowly. It's OK to go at a slower pace if that helps you too.

Brooke - 00:18:49 - 00:19:03

And that is going to help you as well if you take things slowly. I talked about that drip-feeding thing. You can only handle so much information at any one time. So if you give yourself a small amount to deal with, then you can deal with them a lot better than a big amount.

Ashwini - 00:19:03 - 00:19:33  

And finally, as we said before, it's important for family and friends to encourage someone who's coming to terms with brain injury, who's recovering from a brain injury and help them notice the improvements that they're making so that they can accept those changes and remind them about the importance of being patient, that it's OK that it's not all magically fixed straight away, that it's not an overnight recovery.

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