Fatigue is a symptom many people experience after a traumatic brain injury. In this episode, we discuss the impact of fatigue and the importance of rest.
Information and other content provided in this Podcast should not be taken as providing medical advice or recommendations. Please always consult your doctor or treating team for medical advice.
Ashwini 00:00:25 - 00:00:51
In this episode, we're going to be looking at fatigue and the importance of rest.
Brooke, looking at how you were after the accident whilst you were in hospital and then even after your discharge home, I think it's fair to say that rest was a crucial part of your post brain injury recovery.
Brooke 00:00:51 - 00:01:29
Yeah, I suppose when you're resting, you're recovering. I had this thing that I was trying to rest as little as possible and get over this need to rest in the day, and I would try and make myself stay awake as long as possible.
That's actually the worst thing you can do because it's not letting your body concentrate on recovering. I guess that's why going back to why a lot of people are induced into a coma, and that's the reason for that because your body can just do nothing but concentrate on healing your brain.
Ashwini 00:01:29 – 00:02:18
Yes, and certainly when you're in the hospital, you're given the opportunity to rest - we talked about it in episode two and that fake environment - you have that structure, you have plenty of opportunities to rest because your day is being managed for you.
But I guess it's more important when someone is discharged home, for example, and they don't have that same structure to make sure that rest is a prominent feature in their routine and their recovery because regular rest is important to help your brain to heal. And as you just said, you were trying to do too much. A lot of it is about understanding that your body needs to rest; your brain needs to rest and accepting that.
Brooke 00:02:18 – 00:02:49
Yeah, you're just exhausting yourself. You need to be balanced, though - you can't rest too much, and you don't want to get into the habit of just doing nothing and then you can't do too much either.
The problem is, for that, you need to organise your time, and after a brain injury, the very part of your body that organises time, usually the frontal lobe of your brain, has been damaged, so it's a bit of a nightmare trying to get that right.
Ashwini 00:02:49 - 00:02:59
Yes, organisation and planning can be difficult. How did you manage that? Did you look at support from family and so on?
Brooke 00:02:59 - 00:05:32
Not very well!
Coming up to the time I was going to get discharged out of the hospital, I thought I would be totally fine when I got home. I thought I was going to be totally fine when I came out of the hospital, but that wasn't the case. I went home, and I wanted just to rest all the time, and then you would rest for a bit, but then you want to get up, and you want to do something. But it was never a regular thing; there was no regularity to it. It was very sporadic, my getting up and laying down, and I would just go through the day, doing a bit of activity, then the rest, then a bit of activity, then rest. And then I wasn't sufficiently tired going to bed; sometimes I'd fall asleep at like 6 p.m. and sleep till 7. And then obviously, I couldn't sleep when I went to bed at night.
I've suffered pretty badly, and do you know what I still do with insomnia. I still don't sleep well, and I think a lot of people have this. I remember there was a period when I was staying at my sister's house and I was kind of scared of bedtime because it would mean another night of just lying staring at the ceiling and getting up the next day and just being exhausted and then resting too much in the day, and the whole thing happening again.
What you need to do is, you need just to get regularity in your life, even if it's every hour, have like 5 minutes an hour rest, but then stick to that and have some sort of a plan. I remember I started with a mid-morning rest, afternoon rest and a midafternoon rest and then bedtime at night. Eventually, you get rid of the mid-morning rest, you get rid of the midafternoon rest, so it was just a rest in the middle of the day.
I used to go at noon but having spoken to other people who have had a brain injury, they have a better system. I think the best time to go is about 3 o'clock for an hour or so. That's not too early, so you've not got too long a stretch between the rest and bedtime, and it's not too late either.
Ashwini 00:05:31 - 00:05:39
I guess it's probably different for different people, but I think the key message here is to plan in rest?
Brooke 00:05:39 - 00:05:43
Yes, regularity and stick to it as well.
Ashwini 00:05:43 - 00:06:03
And also not doing too much. You mentioned that, for example, in the early days you would do something then rest and do something else, then rest, do something else and I guess, without even trying too much, you can become very fatigued just for the first activity alone, which could really set off that fatigue.
Brooke 00:06:03 - 00:06:05
Yes, and that ruins the rest of your day.
Ashwini 00:06:05 – 00:06:17
So I suppose it's probably important to think about what your day is going to involve, and if you're doing something in the morning, then don't plan anything else in for the afternoon.
Brooke 00:06:17 - 00:07:37
Yeah, a good rule to stick to is anything cognitive, generally, you're brighter and sharper, your brain is better in the morning, so anything that involves thinking and, so say in the early days you have a lot of appointments; maybe a psychologist appointment and if it's possible to get that in the morning, do anything like that in the morning. Then anything physical, I used to do in the afternoon.
There's planning your week as well. So you have two exercise days a week; ideally, it would be three exercises (and I'm not talking running a marathon, I'm talking if you for a little walk or something and go out, getting some fresh air), do that on Monday, Wednesday and Friday, so you've got the Tuesday and Thursdays as recovery days, and for instance, don't do it on a Monday, Tuesday and Wednesday because you will just be exhausted. Same with cognitive things, if you can do in the mornings, but try to space them evenly throughout the week.
Ashwini 00:07:37 - 00:08:24
Yes, absolutely, it comes to planning, and I think what you've said there is a very good suggestion in terms of how to plan it in.
Again, different people might find they really struggle to get up in the mornings because of their fatigue and so it's looking at how fatigue affects you and planning around that so that you're not taking on too much - you're not doing too much cognitively and physically in one day and giving your brain the best possible chance.
You talked about when you were trying to do too much. Am I right in thinking that you used to try and say yes to anything that anyone invited you to?
Brooke 00:08:24 - 00:09:19
I had this thing – what's it called – FOMO - fear of missing out, and I had massive FOMO, and I still do to a certain extent. Anything that I could go to. In your head, you want it to be seen that you have a good social life because, obviously, that's something that takes a massive knock after a head injury.
So any opportunity to go out, I did. It was never any good because I was just exhausted, so I'd just be sat in the corner, not really interacting with anyone. Or I'd strike up a really boring conversation with someone because I didn't want to be there, and I wanted them to go away so I go home and lie down. But I've since learned it's much better to be a better version of yourself for a short period of time than it is an exhausted version of yourself for a longer period of time.
Aswhini 00:09:19 - 00:09:28
Yeah, I think that's very profound advice.
Your injury happened a long time ago, but rest is still a feature for you, isn't it, even now?
Brooke 00:09:28 - 00:10:19
It is yes and I suppose that's proof that brain injury never really goes away; it's something that's with you for life.
Something that I read when I was in hospital was, do you remember Richard Hammond's book? He claims to be totally fine now, which I don't know if I believe or not. But we had similar kinds of injuries in that we were both a three on the Glasgow Coma Scale because he crashed in the jet car, but I suppose if you watch the footage back, the ambulance was straight there. So going back to that golden hour and the treatment you get in the hour following your injury, his golden hour was seconds before he got treatment.
Ashwini 00:10:19 - 00:10:20
The gold standard of the golden hour!
Brooke 00:10:20 - 00:10:29
Yes, exactly. So you got the perfect system! But I don't know if he's totally cured or not; he says he is.
Ashwini 00:10:29 - 00:10:41
But I guess we don't know what goes on behind the scenes. He has his TV persona, but we don't know what he's like when he's at home, whether he's sleeping all the time; we just don't know, do we?
Brooke 00:10:41 - 00:11:19
Yeah, I mean fatigue was very much the bane of my life for a lot of years, but for anybody who's going through it, the early days now, obviously, is really bad at first, because you've got remember, that that's when your brain is healing as well and that's why you do get a spurt in recovery at first. But it's continued to affect me for the last 15 years, and it still does now, but it's immensely better than what it was, but it's still there.
Ashwini 00:11:19 - 00:11:29
I think it's important not to fight it either, not to fight the fatigue
You had an incident, didn't you, where you, was it Red Bull?
Brooke 00:11:29 - 00:12:34
So I had this thing; when I had my injury in 2007, there was very little known about brain injury. Now there's much more and it's had much more attention and much more media coverage, but essentially we didn't really know; it was like a learning curve for us. I just thought I was tired and I used to work in a bar and we used to have Red Bull. So I just thought that was the answer to my fatigue problems.
I can't remember what my record was, but I used to have a lot of cans of Red Bull, thinking that it would cure this fatigue. But all it did for me was it stopped me from sleeping.
There was a time when I used to like the band ACDC; I got into them when we were travelling. They were playing in Manchester, and I actually went to an ACDC concert. It was 2009, a couple of years after my injury and I had several cans of Red Bull after that, and I don't think I slept the whole night - but it was good, though!
Ashwini 00:12:34 - 00:12:35
Well, yes, don't try this at home!
Brooke 00:12:35 - 00:12:39
You only remember the best bit, don't you, but yes, it definitely wasn't advisable!
Ashwini 00:12:39 - 00:13:05
No, definitely not.
Fatigue can also affect your judgment; can't it if your brain is tired.
And we're not talking about physical tiredness; we're talking about brain tiredness, then it can affect the way you think or the way you reason certain things. I think there was something relatively recently, wasn't there Brooke, with Royal Mail?
Brooke 00:13:05 - 00:18:40
Just to prove that it still goes on.
There is a difference between physical fatigue and mental fatigue, and the fatigue you talk about in brain injuries is mental fatigue; you're just exhausted.
I've recently run a marathon for charity, and it's something that hit me then - it was about 10 minutes after I crossed the finish line, so obviously, I was absolutely exhausted, and my defences were down. I think I'm good at spotting scams on my phone, you know, you get them all the time - phone calls supposedly from Amazon - £500 is coming out of your account, press this button.
This was one from Royal Mail; it was a text message asking me to pay a surcharge, like a tax - it was £2.10 - and it happened just as I crossed the finish line and looked at my phone. I've ordered things in the past from America, and you've had to like pay little in extra tax, so I didn't really have time to sit and think about it; I just assumed it was one of them and thought, 'I'll save myself some stress later, and I'll pay it now', and I did it and I put my bank details in and what have you.
Then the next night, I actually got told to isolate - I don't know if I'd seen somebody at the race or whatever. So it was my first day of isolation and somebody rang me and they said they were from the Halifax antifraud team and usually I would just make an excuse and say I'm too tired, but I thought better deal with this because it's Halifax antifraud team.
There was a guy and who had obviously worked in customer service before and he was just saying all the right things. What he said to me was are you getting messages on your phone from Halifax. And they were coming through in real-time; these messages were coming through as he was talking to me. I don't know if this was planned or whether this was just pure luck, but he said to me had I noticed some strange payments going out of your account and I've got an internet shopping problem me, especially in the pandemic, my Amazon bill was ridiculous! So I said, I don't know, lots comes out of my bank account and he says, well, have you had something in the last couple of hours for £180 and I was like, no, I definitely haven't.
So I said, what's that? So he said, right, you've got to go to these text messages on your phone. Are you getting these text messages from Halifax and they're coming through and I was getting them and he said you need to look at these and give me the numbers. So I just did that; I was exhausted and I was trying to get it done, so I just gave him the numbers from four of these text messages that came through. So he said, yeah, come into the local branch Thursday morning we'll sort it out for you after your isolation is over.
Then I was watching TV that night and I thought about it and thought I better have a check of that. And I looked at these text messages and it actually says, 'Do not share this number. Somebody is trying to steal your money', and my stomach just dropped. I just thought, oh my god, what an idiot, but I just didn't even look at that - I just looked straight for the number because obviously, I was on the phone with someone from Halifax, he knew about these messages, so it didn't even enter my head to lie to him.
And basically, what they'd done was they'd taken £600 from my account; I only had £631 to last me the rest of the month! They'd made a payment to this cyber currency – stuff like that just scares me!
So, it had gone to a website and I remember saying to the lad, he said you'll have to contact this website and I was thinking, can't you do it? He says, well, no and there was no phone number, so he gave me an email address, so I wrote to this email address and to be fair, they got back to me within about an hour and they said the funds have already been transferred to another place and they can't get it back.
So devastated, I rang back Halifax, and he explained to me that he didn't know, I said can I get any of this back, and he was like, well, I don't know because you authorised the payment, and that was it! I was like, 'I did not authorise a payment. I authorised a payment of £2.10. I did not authorise a payment of £610!' But luckily, well done to Halifax; they gave me the money back, which I was very very grateful for.
But I'm sure, as you can imagine, it was a very stressful time, especially when I was isolating, and I was on my own through all of this as well.
I thought I was pretty clued up about these scams and stuff, and I thought they wouldn't be able to get me, but it just proves - it hit me when I was just tired and uncomfortable.
Ashwini 00:18:40 - 00:18:47
Yeah, these scams obviously are designed to get people who might be more vulnerable.
Brooke 00:18:47 - 00:18:59
The guy at the bank told me they'd probably send 10,000, and if only one gets through, which made me feel even worse because I'm the one person in 10,000 that falls for it!
Ashwini 00:18:59 - 00:19:14
So you said obviously don't trust these sorts of things and check - is there any other advice, if you could advise yourself at that moment, would there be anything else you might tell yourself?
Brooke 00:19:14 - 00:19:17
Don't do anything when you are tired and fatigued.
Ashwini 00:19:17 - 00:19:33
Yeah, take a moment. Take a step back.
You talked about how you still need a rest now, but I think it's fair to say, isn't it, that you probably don't need as much or as often?
Brooke 00:19:33 - 00:20:23
Not as much, and it has got better, and it does get better and for anyone who thinks it doesn't. You can do anything too much. I think the trick is to do things in moderation.
I've done big runs, and I've actually not been for a rest in the day, but I think the reason for that is the adrenaline has carried me through. But just on a general normal day, I try to go for one rest in the middle of the day. Particularly if I've done something mentally taxing or even physically taxing, and then I will need the rest after that.
If it gets to like 5 o'clock, I won't go any later, or even 4 o'clock; I wouldn't rest past 4 o'clock because that tends to affect my sleep the night.
Ashwini 00:20:23 - 00:20:30
Yes, and it's important to get good quality sleep as well in the night.
Brooke 00:20:30 - 00:20:35
So I keep telling myself - one day it'll happen!
Ashwini 00:20:35 - 00:21:21
So in terms of tips that we can share with our audience in relation to managing fatigue. We've talked about the importance of routine and sticking to it. We've also talked about making plans and thinking ahead about your day - if you're doing something that's cognitively taxing in the morning, then not to do anything else in terms of activity for the rest of the day.
Or if you're doing something physically taxing again, thinking about managing your activities, planning in rest, accepting that you need to rest. I guess that's the hardest part when you want to get up and go and do everything.
Brooke 00:21:21 - 00:21:46
Acceptance is a massive thing, and to some extent, I still haven't accepted that I need to rest now. I still think I can do things that I can't, but I think that's probably been a good and a bad thing. A good thing is that it's made me push on, and a bad thing is that it's made me think that I'm better and I'm not, and I get myself into trouble!
Ashwini 00:21:46 - 00:21:54
But finding that balance, as you said before, you don't want to over rest and then affect the quality of your sleep because you're just awake at night.
Brooke 00:21:54 - 00:22:02
Yes, I think give yourself a cut off point – I'd say 4 o'clock.
Ashwini 00:22:02 – 00:22:02
Yes, don't sleep after that.
Brooke 00:22:02 – 00:22:05
Yes, I do not sleep after 4 o'clock.
Ashwini 00:22:05 - 00:22:08
I think that's a good piece of advice – have a cut-off point.
Brooke 00:22:08 - 00:22:11
Don't have any caffeine after 12 o'clock.
Ashwini 00:22:11 - 00:22:13
Certainly not lots of cans of Red Bull!
Brooke 00:22:13 - 00:22:15
No, not Red Bull, no!
Ashwini 00:22:15 - 00:22:35
Avoid overstimulation, and it's what you said before - do things in moderation. Think about your diet and your exercise and do things in moderation - don't have too many stimulants. And it's what we said before about regular bedtime. Probably also, would you agree, a regular waking up time?
Brooke 00:22:35 - 00:22:41
Yeah, and get up. Set yourself a routine in the morning as well.
Ashwini 00:22:41 - 00:22:53
Consistency is key. Have your routine, stick to it, plan and rest. More importantly, make sure you allow yourself that time to rest and let your brain recover.
Brooke 00:22:53 - 00:23:09
Don't rest too much, don't rest too little, don't rest too late – definitely don't rest too late!
In the morning, if you think you're exhausted, still get up. Don't just lay in bed because it just makes you feel worse.
Ashwini 00:23:09 - 00:23:34
Well, thank you very much, Brooke. Again, that was a very insightful episode and lots of really helpful advice there for our listeners.