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Episode 12

Depression after a brain injury

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Feeling sad after a serious injury is normal, but it could also be a sign of depression. We have touched on this topic briefly in previous episodes, but we think it's important to discuss this in more detail as it is such a big topic.

It's fair to say that many people will experience depression following a brain injury. In this episode, we will be talking about some of those symptoms and providing some help and advice. 

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Ashwini 00:00:22 - 00:02:26

Hello and welcome back to our podcast. Today we're going to be talking about depression. This is something that we've talked about in previous episodes, but it's important that it really gets its own episode as it is such a big topic. I think it's fair to say that a number of people will experience depression following a brain injury and we're going to be talking about some of the symptoms and also help and advice. 

It is important to realise that feeling sad after a significant event like an injury, a serious injury is normal, but it could also be a sign of depression. It could be that you're feeling a loss of interest in activities, it could even just be normal activities of daily living; getting up, getting washed, getting dressed. You might find that there are changes to your eating patterns or your sleeping patterns that you just don't feel like eating or drinking. You may be experiencing very low self-esteem or very negative thoughts about your situation or about the future. You may experience a loss of interest in things that you do with your friends, socialising, etc., and that can of course lead to isolation. It could be that all of these things are as a result of the injury that you've had, or as a result of depression. 

It's a very fine line because the two can be so closely linked, and in fact we've got some statistics from Headway, which is a national charity that supports people with brain injuries who found that on average, 50% of people with a traumatic brain injury experienced depression in their first year of recovery, which is a huge amount. 

Brooke, I'd like to bring you in at this point because we have talked about depression before in some of the other things that we've discussed. And I'm thinking in particular when you were first out of hospital, when you were in discussions with your doctors and talking about this this three year recovery.

Brooke 00:02:26 - 00:04:55

Yeah, I clung on to that – I’d read it somewhere. I think what happened first of all is I was in hospital and people were coming to see me and I thought my life was quite good. I thought it was a bit like being a Z-list celebrity to be quite honest! I was sort of riding this wave of happiness that people used to come and see me and I just kind of thought that's what my life was going to be like.

But it wasn't till I got out of hospital and started actually taking an interest and started reading - I mean, I had this thing, I was told that I had this thing called a brain injury which I've never even heard of before. Bear in mind that when it happened to me, there was literally nothing in the media and I started reading about it, and I think generally a path that people go on it that as your awareness increases, you start to become more aware of your situation and you start to understand what's going on, what's happened to you and the implications it's going to have for the rest of your life. And then with that comes a wave of depression. With that sort of research, something that's bandied about is the brain will heal for two years and then the only thing you can do is to use techniques to overcome problems that you’re still left.

I've never been an organised person, and this made me even less so, so this was really, really scary for me - I thought I'm never going to get better because I'm never going to become organised and I've got a brain injury now and you need your brain to become organised and it's injured, so it's never going to happen for me. 

I kept seeing that your brain heals for three years. I mean, obviously, it didn't happen, but I remember clinging onto this three year period and right up until like the 11th of May 2010 it would have been, which will have been three years after, and when I woke up there on the 12th of May, I wasn't better. 

Ashwini 00:04:23 - 00:04:25

You didn't just magically go away.

Brooke 00:04:25 - 00:04:55

It sounds ludicrous now, it sounds stupid, but that is honestly what I was thinking.

Depression, it's a funny thing because I was told that I wasn't ever majorly depressed, but I would disagree with that. But I suppose I was told that I was never depressed on the grounds, I still like, you know, got up, had a wash, made the most myself and stuff every day. But I'd that it affects everybody differently, doesn't it? That was something that I've always done.

Ashwini 00:04:55 - 00:05:23

I think it's fair to say that depression manifests itself in so many different ways, so the fact that you were able to take care of some of your basic needs, that doesn't necessarily mean that you weren't then putting a brave face on thing. Some people might appear completely normal, for want of a better term, but actually, you know, scratch beneath the surface and they're really struggling.

Brooke 00:05:23 - 00:06:25

Yeah, and I mean the fact I didn't really know what it was, I didn't really understand what was wrong with me. You try to examine what's wrong with you and you come up with things like ‘my memory is not working’ and ‘I'm tired all the time’, and you know people just kind of, not ridicule it, but people come up with suggestions like, you know, ‘You’ve got sleep better’ and ‘You've just got to man up, you’ve got to get over yourself’. I was made to feel like I didn't have any real problems - like I didn't work full time, I didn't have a family, a mortgage - you know, I was lucky that I'd survived this head injury that you should be thankful. I mean, of course I was thankful but I think it's the fact that I didn't have any of those things that made me feel left, that I was on my own. I felt like I was like, you know, like you don't have any real fault problems so get out of the way of people who do have problems.

Ashwini 00:06:25 - 00:06:39

Yeah, and that's obviously not a helpful strategy, because if they're your problems, they’re your problems - they’re real to you, and there's no sort of benchmark of what constitutes a genuine problem.

Brooke 00:06:39 - 00:06:54

I was always comparing myself to other people as well. Like, you don't see yourself as being better off than a lot of people. You don't ever look at it in a positive sense, you only see people who are better off than you – you only ever look up, you never look down, do you?

Ashwini 00:06:54 - 00:07:26

Yeah, and we have talked about comparing yourself and the importance of not comparing yourself a lot, haven't we? But you know, I think you raise an interesting point about when it comes to depression - one of the useful tips that we would suggest is to try not to focus on those negatives and to try and focus on the positives instead and not comparing yourself is one of those because you'll only ever see yourself in in a worse light.

Brooke 00:07:26 - 00:07:55

Yeah, I remember just thinking that after the three year thing, this is what I'm stuck with. It's never, ever, ever going to get better and I don't want to say that, I don't want to joke about this, and I didn't ever have suicidal thoughts, but I just remember thinking like, what if I was not here? You’re just kind of a burden, you're not contributing anything to this world, all you're doing is taking and that in itself just quite a depressing thing.

Ashwini 00:07:55 - 00:08:34

Yeah, and I can see how you'd feel that. I wonder whether there might even be, maybe just some reflection, certainly from clinical staff in terms of how the messaging is put across in relation to recovery periods. Because yes, you know 2-3 years is sort of the accepted science that that's when your brain will make the most recovery. After that, it largely plateaus and it's not to say that no further recovery is possible. Recovery is still possible on an ongoing basis. But the gain is perhaps less drastic, isn't it?

Brooke 00:08:34 - 00:08:53

What's good, what's always worked for me is like challenging yourself and making yourself do things and new experiences. It was recommended that I stayed in Scarborough, just stayed around there and didn't really push himself. And I came to Manchester on my own, which was just very, very difficult.

Ashwini 00:08:53 - 00:09:37

I think yeah, the fact that you did push yourself, you could have accepted that advice to just stay put and just let things just, you know, continue as always. But the fact that you felt able to push yourself out of your comfort zone, but to try and experience new things that could be positive in itself, was I dare say, and I don't want to speak for you, but you know, it was probably a very positive step for you in terms of coming to terms with your injury. 

Just picking up on what you were saying before, Brooke, about you know, as you gain more insight, that too can then lead to an increase in depression. I think you've got a perfect analogy for this, haven't you?

Brooke 00:09:37 - 00:09:51

I always said it's like a sort of like a Big Dipper on a fairground ride - you've got to go down before you come down. Before you can get better and work on your problems you've got to realise what your problems are.

Ashwini 00:09:51 - 00:10:11

That's absolutely true, but even you know, even if you do work on it with professional help, for example, I think it's also fair to say that there will be ups and downs anyway, you know, you could be feeling great one day and the next day can be very different.

Brooke 00:10:11 - 00:10:35

Something that's bothered me is like some days you do feel great and then you kind of think that you're better, you think you’re totally fine and you use all your energy in that one day and then the next day when you wake up, you are absolutely exhausted - the fatigue hits you massively and whenever I've been really tired, my thoughts seemed to be the same, you just think depressing thoughts.

Ashwini 00:10:35 - 00:10:47

And in those days when you’re very tired and your thoughts are more negative - How do you manage that? What do you do?

Brooke 00:10:47 - 00:11:29

Not very well!! I think the thing is, because I forget what I've done day to day. When I get up and I'm exhausted, you feel useless and you've got no energy and you just start to blame yourself. But because I don't remember the day before, I mean, even if I've had a particularly physically exerting day the day before, I won't necessarily remember that on the next morning when I wake up. I wake up and I'll be exhausted and then have the negative thought patterns. One thing I’ve wanted to do is leave a note for myself, saying I am going to be tired the next day, and then, you know, at least I’ll be a bit more prepared for it.

Ashwini 00:11:29 - 00:11:49

Umm, that's I think that's a really good tip actually. And I suppose it's also don't beat yourself up about it. You know, it's OK to have days where you don't feel like you can achieve very much or where you are tired and don't be afraid to get things wrong and cut yourself some slack.

Brooke 00:11:49 - 00:12:01

Yeah, my psychologist has always said that to me, that I'm too harsh on myself. But I don't know, I've got a theory that if I wasn't harsh on myself then I wouldn't have made any progress at all, so…

Ashwini 00:12:01 - 00:12:02

That’s interesting, yeah.

Brooke 00:12:02 - 00:12:11

But yeah, being harsh on yourself is not good. I'm my own worst critic and I think most people probably are.

Ashwini 00:12:11 - 00:12:20

An in terms of any sort of feelings of depression, etc., have you yourself sought any professional help, if you don't mind me asking?

Brooke 00:12:20 - 00:13:13

I've had a neuropsychologist, Russell Sheldrick, who's been brilliant. My mum said he was always on the ward watching and because I worked in a bar at the time and I was a student, so loads of people came to visit me and my mum thought he was getting like annoyed with that. But he said on the contrary, that like stimulation is good, it's good to see people and stuff. I think the worst thing you can be is alone, because if it's just you and your negative thoughts, then you don't stand much of a chance. But I think it's a lot for people to look for friends and you just genuinely don't think you’re going to be - I mean, I always used to think I was a burden, I still do, but like going on nights out and stuff, I used to make an appearance for half an hour and then I’d go home because I was too tired and I just thought that I was just annoying people but that's probably not the case.

Ashwini 00:13:13 - 00:13:26

No, and it's important to build your networks, you know, strengthen your networks and build new ones. And whether that's going out for half an hour, or you know, just spending time one on one, whatever works for you.

Brooke 00:13:26 - 00:13:30

Keep yourself relevant, don’t you.

Ashwini 00:13:30 - 00:13:44

Yes, absolutely. It's, you know, spending time with friends, family, people who are going through something similar, you know, so that you're not always alone or just stuck in that sort of pattern of negativity.

Brooke 00:13:44 - 00:14:06

I don't really mean keep yourself relevant, I mean, keep yourself, because you don't want to be forgotten about because if you keep avoiding people then people will think that you don't want to be there, and then people will stop asking you and then the result of that is you just could be left in the house all alone

Ashwini 00:14:06 - 00:14:08

And that is easier said than done, I guess because…

Brooke 00:14:08 - 00:14:16

Absolutely, yeah. You've really got to make an effort; I've really had to make an effort to make myself go out but you have to do that because otherwise…

Ashwini 00:14:16 - 00:14:40

And that can have more benefits than you perhaps realise as well. You know, at the time you might be thinking, I'm just, you know, a bit tired or I can't be bothered. But, you know, it is part and parcel of keeping those networks and people might also see and ask, you know, are you OK - people pick up on so much, don't they?

Brooke 00:14:40 - 00:14:50 

You can become quite easily overwhelmed, like I've not really wanted to be in that situation where a lot of people are talking to me because it becomes exhausting.

Ashwini 00:14:50 - 00:15:00

So, you've worked with Russell for a long time, and I think it's fair to say that however he works is in a very subtle way.

Brooke 00:15:00 - 00:15:20

Yeah, quite possibly. The one thing I noticed, the office was on the 1st floor of the old part of Salford Royal Hospital, and I always remembered that whenever I was going up them stairs was quite a depressing time, but whenever I was coming down it was always a much happier time, so he was obviously doing something.

Ashwini 00:15:20 - 00:15:25

We don't know what, but he doing something to make you feel better about the situation.

Brooke 00:15:25 - 00:15:41

Having somebody to talk to. I mean, at first when I first moved to Scarborough, I used to come from Scarborough to see him because it was that good for me and also that was the start independence for me. I used to get the train over.

Ashwini 00:15:41 - 00:16:22

I guess, you know, those are big things in themselves when you sit and break it down. You know, we talked about some of the signs or symptoms of depression that sort of you know, loss of interest in activities, but the fact that you were pushing yourself to get on a train from Scarborough, make your way over to Salford Royal to see somebody for a professional appointment. You know, that’s quite a big thing, and it's important to realise that and accept that was a huge achievement. It may seem like a very routine thing to do, and it may have seemed like that at the time, but it's a huge achievement in itself.

Brooke 00:16:22 - 00:16:36

I was always comparing myself to my friends who were like working down in London and stuff and I just always saw what I was doing as so petty - you've got to get out of that mindset because one thing to remember is that your friends don’t have brain injury, do they?

Ashwini 00:16:36 - 00:16:42

Did you, when you were spending time with your friends or your family, did you talk to them about how you were feeling?

Brooke 00:16:42 - 00:17:03

Probably not as much as I should have done. One, because I didn't really realise what was going wrong with me and, two, I just felt that my problems were just so menial, you know, compared to their problems and then I felt it wasn't worthy of discussion. But you do have to get over that.

Ashwini 00:17:03 - 00:17:15

Yeah, and I suppose, now that you've got a lot more insights than you perhaps had back then, what piece of advice would you give 2007 Brooke?

Brooke 00:17:15 - 00:18:01

Just to sit with yourself and just write your problems down and then. Because then you don't have to come up with anything on the spot, you know, you can sit, and you've got all the time in the world to write your problems down and take that list of problems and discuss it with someone. Because if I ever went to discuss something with somebody, then being put on the spot, I wouldn't remember anything. I always thought it was good to write things down, particularly going to see Russell as well, because if I was going to see him, I felt like old being put on the spot and I couldn't remember anything, and I would spend the whole journey home thinking of what I should have said, and if you don't mention these things and you don't get help from them.

Ashwini 00:18:01 - 00:18:06

Yeah, well, the danger is that you just forget so you just say oh everything's fine, and it’s not.

Brooke 00:18:06 - 00:18:27

Yeah yeah, and I think the thing was with Russell, I used to like boast and tell him things that I was doing that was good and then you know I probably wasn't using him to his full potential. I only really wanted to say positive things and maybe he just saw that as a good thing that I wanted to say positive things.

Ashwini 00:18:27 - 00:18:50

Umm yeah yeah, I mean, I can see that since, you know, in terms of a road towards recovery, maintaining that positive outlook but at the same time it is important to air what's on your mind, to talk about how you're feeling and not comparing yourself to other people - your problems are your problems.

Brooke 00:18:50 - 00:19:16

Yeah, and they’re your problems, aren’t they. I mean, the thing is as well, you don't ever know what's going on inside somebody's head. I just used to think that other people would think that I don't have any problems because I don't have to work and I don't have like a mortgage to pay and stuff like that, but I think also that the fact that I didn't have any of that was a problem to myself because I just felt isolated.

Ashwini 00:19:16 - 00:19:24

And perhaps something thing of your routine were different, so you probably had more time to dwell on your problems.

Brooke 00:19:24 - 00:19:32

Yeah, you know you do have problems, it's just different. Having a brain injury you just become different to everybody else.

Ashwini 00:19:32 - 00:19:51

I guess as well, you know, thinking back to when you were first in hospital and that fake environment, everything was about you - it was all about your physical recovery, all eyes were on you, your friends, your family and so on. But overtime, that focus shifts and that can be quite difficult to come to terms with.

Brooke 00:19:51 - 00:20:22

Yeah, I always like him not to come off, it's probably, Big Brothers’ probably not even relevant now, but I remember when people used to go into the Big Brother house and then these seemingly normal people were like massive sort of celebrities and then. But then you know, the fame was very short lived and it must have been difficult for them, and that's what I thought that I was like this Z-list celebrity – everybody wanted to come and see me and then all of a sudden you're not and then people just get on with their normal life.

Ashwini 00:20:22 - 00:20:28

Yeah, you're still there and you still got problems, but they're just not sort of in the forefront of everyone's minds.

Brooke 00:20:28 - 00:21:49

They're not obvious. I mean, things are getting better now. People are starting to recognise invisible disabilities. Because it's not visible, I guess, you know, you don't talk about it. I felt to tell people about it I would be constantly reminding them of my problems, which would make me sound like a dull, depressing person, which is not what I wanted to be. So for a lot of my problems, I’ve just ignore them. I mean, I've obviously, I've felt just embarrassed, but it's stupid, you shouldn't feel weak, you shouldn't feel embarrassed about your problems. Things are starting to get recognised – what’s those things in Sainsburys, it’s them lanyards isn't it? And if you've got if you've got, you know if you've got a proble or you need some sort of extra help, you can wear these lanyards and staff are trained to recognise that. But you know, these are things that are coming in now, but largely, it's still an invisible disability. And it's nothing to be ashamed of. I've always been frightened of being put on the spot for something like having to explain your problems, and I can't, I get like tongue tied - I honestly think that just writing things down, just having something in your wallet, just having a few things like that are your problems - You've got a brain injury, that's I guess  where that Headway brain injury card comes in.

Ashwini 00:21:49 - 00:23:02

Yeah, of course, but I suppose when it comes to the depression side of things, perhaps even also just having a dedicated note in your phone, something that you know it's always with you, you can whip it out if a thought comes to mind there and then. 

Just picking up on the lanyard that you mentioned and again just for our listeners, this is the sunflower lanyard that you were talking about. You can obtain them from the hidden disability store - its hiddendisabilitystore.com. I think they don't cost very much, I think they're about 90p to purchase and those are, I think, recognised in a number of major supermarkets and public transport as well that somebody has got a hidden disability. And obviously it's not just for brain injury, it's for all sorts, but check out our footnotes and there will be a link on there.

Coming back to how you push yourself as well, I know for you personally, Brooke, exercise has been a big part of your recovery, both from a physical and well being point of view. And do you think that's something that's also helped you in terms of elevating your mood.

Brooke 00:23:02 - 00:23:58

Exercise has been my savour, honestly. There are times when I forget to do it and there are times when I'm not on the ball with it. But when I’ve been for a run – do you know, I've run marathons, I’ve done all sorts, I don't even like running! What I like is the social side of it. 

I was speaking to somebody the other day who's just like, you know, an older guy, he’s come to this area and he's been through a divorce and he’s just joined a running club and it introduces you to a lot of new people and everybody is generally friendly, positive and what we tend to do is we will go for run and then we would go for go for a beer or something after and it's really good, and I mean the physical benefits of it as well, the endorphins.

Ashwini 00:23:58 - 00:24:09

Yeah, I mean absolutely, you know, the physical benefits of exercise are quite clear and you know, there's plenty of research out there. But of course, it doesn't have to be running, not everybody…

Brooke 00:24:09 - 00:24:18

No, no, absolutely not, but anything that leaves you out of breath, something that breaks the norm.

Ashwini 00:24:18 - 00:24:42

Yeah, and it can be anything like running, cycling, swimming, walking, as you say, and you know, anything that I suppose it doesn't have to be a group activity, although there is obviously a social benefit to that potentially, but anything that makes you feel good. But you know, not all our listeners will want to go out running or cycling

Brooke 00:24:42 - 00:24:52

No, no, I appreciate not everybody wants to run because you know, I totally get that myself, I don't even like running, but I just think it's the social aspect that’s done it for me!

Ashwini 00:24:52 - 00:25:12

Yeah, and you know, there are other social outlets out there as well for people - I'm a member of two choirs and you know, the social side of that is brilliant and it's one of those activities that brings you joy and gets those endorphins going in a different way.

Brooke 00:25:12 - 00:25:15

Yeah, in a different way, it’s whatever way works for you.

Ashwini 00:25:15 - 00:25:19

It’s about keeping active and busy.

Brooke 00:25:19 - 00:25:40

Yeah, keeping with friends as well, keeping with people, otherwise if you keep refusing and learning to say yes as well – if someone invites you to something say yes. If you keep refusing to go anywhere with people, people stop asking. And then you know they probably think that you're happier at home but, of course you're not happy at home.

Ashwini 00:25:40 - 00:25:46

Yeah, so yeah it's saying yes, have the exit plan that you've touched on before.

Brooke 00:25:46 - 00:25:47

Definitely have an exit plan, yeah.

Ashwini 00:25:47 - 00:25:59

And, you know, just push yourself to enjoy different things and celebrate when you do do something that's a little bit out of your comfort zone.

Brooke 00:25:59 - 00:26:01

Yeah, try something new.

Ashwini 00:26:01 - 00:27:41

So in terms of help and advice, then for our listeners we've talked about all of these things at different points in today's episode. The first thing is really acknowledging that it's normal to have feelings of sadness, to go through depression after an injury. It's perfectly OK to feel that way. Don't feel embarrassed, don't feel guilty, and don't feel weak. And it's also OK to mourn the loss of the person that you might have been before.

But in order to try and help work through depression, we've talked about building networks and maintaining existing networks, even though it might be difficult to do, and even though you might not always feel like it. But you know, touching base with people, whether it's one on one, whether it's in a group situation, whatever works.

Seeking professional help, I think is a huge key - that could be through your GP, if you have a psychologist or a psychiatrist - speaking to them.

There are also charities out there - the most obvious one is Mind. And again, there's a link to Mind in the footnotes. Talking to friends and family, being open with them about how you're feeling. 

And as we've discussed, particularly with a brain injury, utilising other strategies to help you, so making notes about how you're feeling, whether that's keeping a dedicated note on your phone or a pen and paper, whatever it is so that you have that reference straight away - you don't feel that you're being put on the spot, especially when memory is an issue.

Brooke 00:27:41 - 00:27:48

Yeah, having it written down is something then that I found massively useful, yeah.

Ashwini 00:27:48 - 00:27:54

Definitely and then you're able to express how you feel and articulate that when you’re asked about it.

Brooke 00:27:54 - 00:28:05

Something that brings it to the forefront of your mind rather than trying to remember what's wrong with you and then just like tapping out and saying ‘Oh, I’m fine’.

Ashwini 00:28:05 - 00:28:56

Yeah, absolutely, I'm fine is not what you are and and it's important to recognise that.

We've talked about, you know, the benefits of exercise or a healthy lifestyle, getting involved in activities, whether they're things that you do already that raise those endorphins that bring you joy, whether it's trying something new and pushing yourself a little bit out of your comfort zone. As part and parcel of building your networks and discovering new things, you might very well find that there are things that you enjoy doing or that you're good at that you've never tried before. Like with you and the running - even if you don't enjoy it!

Celebrate your successes, no matter how small they are, even if for you a big thing is just getting out of bed.

Brooke 00:28:56 - 00:29:10

Otherwise, they can go forgotten about and then you think that you've not achieved anything. Even if it's getting out of bed you know when you have, you might be depressed and you just stay in bed, it's positive, it’s important to be recognised.

Ashwini 00:29:10 - 00:29:22

Yeah and I did like your suggestion of keeping a note by your bed that today you're going to be tired, so then you know, even if it's a case of going, Yeah, I'm tired today, but that's OK, that can in itself be a big thing to celebrate

Brooke 00:29:22 - 00:29:28

Yeah, and then you expect it and it doesn’t take you by surprise because like when you wake up and you're exhausted, and with that exhaustion comes feelings depression. But if you can be forewarned about these things, then it’s a lot better.

Ashwini 00:29:39 - 00:29:45

You'll be much more prepared.

And focus on the positives as much as you can. Try not to dwell on the negatives and you may very well be surprised at what you can do if you focus on those positives.

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