Fatigue coping strategies

[headwayuk]

Hi everyone,

We are updating our information on fatigue and would love to hear your tips on managing fatigue after brain injury.

Please share your advice below!

Once this publication has been updated I will share it on this post.

Many thanks,

Gemma

[Ideogram]

I've just been invited to a 'fatigue management' session at my local minor head injury unit. After six months off work, they've managed to schedule it on what should be my 'rest' day between work days... At 9am. So - don't do that...!

[haverfordwest in reply to Ideogram]

Classic case of people who "know" not knowing.

[Ideogram]

More generally, I think there's something in finding ways to fill your time that stave off isolation and boredom without fatiguing you. It's not just about pacing, but how you spend the time when you're supposed to be 'resting' (particularly if you can't work).

I find myself glued to my phone because I want connection with other people, but forget that that is actually pretty intensive screen use. When my eyes and brain will allow it, I try to read as it's a bit less intensive on my brain (large print is good), and takes me out of myself (escapist, happy books, not ones that have a miserable atmosphere and worsen my anxiety - it took me a long while to realise I felt rubbish and on edge because I was trying to relax by reading the Goldfinch!).

Cultivate other forms of deliberate relaxation - things that reduce your stress, but don't worsen your fatigue. For me, just lying still, telling myself I need to rest, doesn't work - my brain is just left whirring away with too many thoughts. (And when I know I've got umpteen chores to do, sometimes having a plan to do a tiny one actually helps me then switch off. There's no point lying there unable to sleep anyway because you need to clean bathroom!).

For me, good forms of deliberate relaxation have been:

- long, hot baths. It doesn't matter if I spend a lot of the evening in there. Something about the warmth seems to really soothe headaches (though have to be careful with POTS).

- massage and having someone comb your hair - there's something very calming about it, I think because it's a sort of indirect head massage when often my head feels really tense. And it feels like you've done an act of self care!

- getting outside, but without the need to push myself to be active. This is really, really difficult if you can't drive and don't have a garden - I've been super reliant on other people driving me - but getting to a pretty place in the Peak District and sitting by a brook, with my feet in the cold water, looking at the flora and fauna around me (and being away from my screen), really helps me.

- when I've got the energy, cooking. It doesn't use my eyes intensively and allows me to use a bit of creativity and feel like I'm doing something useful - and eating well feels like one positive thing I can do. I appreciate this isn't the case for everyone though. You may need to get a stool so you can sit down while doing it, and food shopping is very much NOT good for fatigue (long walks with heavy loads when you can't drive, sensory overwhelm in the supermarket, difficulty scanning shelves etc).

Otherwise in terms of pacing, I'd add two things:

Accept that your energy may well ebb and flow from one day to the next, so what is easy or too much may vary. We get told not to overdo it on our good days, but not that 'what is too much' won't be constant. For me, menstrual cycle plays a MASSIVE part in this, and tracking my symptoms and activities from one day to the next doesn't work on a weekly basis - but it has allowed me, over a longer period of time, to recognise what might be a really bad, or good, time of the month to plan intensive activity like travel etc.

Secondly, you will need to tell a lot of other things, and people, to back right off, in order to conserve your energy. It wasn't until I went to the local rehab unit that I realised how much stress was a drain on my energy - in their words, it 'blasts through' already depleted resources. A lot of this can be interpersonal. As a habitual people pleaser I find this difficult, but sometimes I just need other people to be less flaky or vague or generally just place less of an emotional or mental load on me. Sometimes that means backing away from situations that are just too taxing on your brain.

Only you know what feels too much, and how your body is reacting (if I avoid taking painkillers all the time, my brain tells me pretty quickly!), and you will need to be bullish with friends and family about defending what you need. It took a while for mine to understand that little things like the TV on too loud in the background, or not having control of my own sleeping hours, were really big contributors - but now they are actively telling me to go to bed!

Hope that helps.

[Ideogram in reply to Ideogram]

One more thing if I may - I can't remember if the booklet actually explains (especially to other people) what 'fatigue' is-? I think a lot of people mistakenly assume it means tiredness and sleepiness, which could be perked up by a coffee (though in my case, not being allowed coffee due to migraines has been a massive issue!). They also don't realise that it means a *long-term* condition of massively diminished physical and mental energy.

Fatigue for me is actually an onslaught of physical symptoms, primarily headaches (for which I often can't take painkillers, because I'd be doing so every day), and cognitive failure (eg I start forgetting things or spacing out). Once brought on, those symptoms don't go away with a cup of tea or a nice sit down for five minutes, they're probably there for the rest of the day, and maybe the next, and they may mean almost any activity is impossible without severe pain.

[Butterfly28]

I think Ideogram raises a really important issue with communication and needing to tell people to back off in order to conserve energy. Having to repeatedly do this is in itself exhausting. I’m not sure that it’s really addressed in any of the “booklets” I’ve seen and it’s extraordinarily difficult to get through to some people that that is what is required and in many cases friendships are lost. It’s part of having a hidden health issue. You’re not being rude - it’s just what is required. Having to repeatedly do this is in itself exhausting. You wouldn’t expect someone with a broken leg to jump to attention every 5 minutes. This doesn’t just apply to friends and family - it’s pretty much everyone you have to deal with including health practitioners. A few are much better than others.

Maybe there should be a separate document also about how family and friends can provide support - and also how they can hinder- dos and don’ts - as the issue is part of fatigue management but it’s also much wider than that.

[James1984]

Hi Gemma,

I had my BI about 25 years ago when I was a child and have recovered a lot since then, but find my symptoms still persist somewhat to this day.

I find my BI fatigue brings out my symptoms a lot more in hot weather and strenuous situations. These days I take a rest/sleep, whether I need it or not, in the middle of the day for about an hour. It helps me recover a lot so that my motor control is better, minimises hyper-reflexia in my leg and arm, I'm yawning a lot less, I can maintain facial control for speech and expression a lot better, and I'm less moody. I've found it improves my relationships and communication with people, so I try to appear my best when I'm out during the day. People tend to be ok when they've seen me at my best and I look very normal, but stunned when I'm fatigued and all my symptoms of my injury come out, and they can't understand what's going on.

James.

[Justafall]

two years post injury I’ve accepted that I have to have a full blown sleep at around 2pm because I’m actually feeling exhausted. My body is tired and my brain can’t take any more activity. I go to bed and fall asleep immediately, having set an alarm for 1hr. Linked to that I’ve also realised that if I want to do something specific then I should schedule it for the morning.

I needed 18 months to stop fighting the need for sleep but some things you just have to accept - like poor memory and slow recall. It’s all part of the new you.

[WonderingWanda]

the most important for me is good sleep to start with. Waking with a nearly full battery means a more “normal” day. Without sleep it’s an entire day of conserving energy.

So no stress or food or alcohol and melatonin (short release and long release for me) are the start to managing fatigue.

I use a smart watch (Garmin or similar as long as it has body battery function) as this helps me know where the energy is spent most.

Major tasks and exercises must be morning activities. Afternoon naps are a godsend.

Limit tasks and group activities so it’s one or the other and not both.

Rest between each activity and reset for the next.

Cooking is great as it’s creative and functional keeping me healthy and avoiding any processed food.

Watching sport (so I can nap during it!)

Listening to audiobooks and pod casts as they are less draining than reading

Meeting up with people is good energy but only in small groups and for short periods. Conversation is draining

Regular exercise has helped as my sleep is better and I maintain energy levels better when I have done regular light cycling or running.

I’m sure there are more but that’s me for now.

Nap time.

[Ideogram in reply to WonderingWanda]

This is really true - I've just gone back to work part time and the inherent stress (mostly subconscious) seems to mean my sleep, and digestion and therefore sleep, are chopped off up into little pieces once again. Actually STARTING the day on good sleep is key, but this is much easier said than done, and when you don't have absolute control of your day it's no longer possible to just play the 'Nope' card on a day when you haven't managed that.

[haverfordwest]

I try to have one to one conversations, more than one person and I cannot deal with people talking at the same time. Shopping is a nightmare, lights, noise, conversation around me, and when the tannoy kicks in well my brain goes into overload, so I try to order online deliveries. Doing more than 1 task at a time is impossible, so I try to organise a rota for doing things. Sometimes I put in foam earplugs as they block distracting noises. Most important is realising when fatigue is likely and resting, sometimes just 10 minutes can be enough. 5 years in and I am still learning, but I do know that I cannot handle big groups, parties etc.

[Ideogram in reply to haverfordwest]

Agreed - for me it's little things like I'm physically positioned in a room. I go to a pub quiz when I can for a bit of socialisation but there are so many times I've been expected to join a large table of people, which will mean far too surround sound, and I've just had to move away. I find myself almost constantly irritated by how noisy other humans are.

[haverfordwest in reply to Ideogram]

I just find myself constantly irritated by humans, 😂. My tollerance levels have become non-existent. I used to be so patient, but now if someone says something ridiculous I cannot stop the words from tumbling out 😱oops! Well sometimes things must be said, and I can just blame it on my TBI , That's the first positive I've found from my TBI 😂😂

[Ideogram in reply to haverfordwest]

😂 Yes, I always get grumpy when people list behavioural changes as a primary symptom of BI - and maintain that I'm not irritable at all, as long as humans or inanimate objects aren't involved!!

[Nemo24]

I find I have to plan far more. So I get rest periods in and don't overdo it. Pretty opposite to how my life used to be. Far less last minute arrangements now sadly.

[StaceM8]

Hiya Gemma, I had my head injury 30 years ago & for the first, approximately 10 years I had the usual brain fog associated with brain injury & was told about the infamous ' power nap '.

As are most, I was very sceptical, had tried having naps before & didn't think for a second it would work. However, it has totally transformed my life. It is essential however to get up after the 20minutes though, or at minimum resetting your alarm for 20 minutes more.

After 20 minutes (well actually about 26 so studies have found to be the best (called the ultradian rhythm), but 20 definitely works for me), get up & do something. Don't just go back to sleep until u wake up naturally cos that will basically be like having a normal everyday nap and shortly afterwards the brainfog comes back.

I drink a pint of water before I have a nap so when my alarm goes off, I have no choice but to get up to goto the toilet & by the time I have finished, I'm wide awake & ready to continue my day, fully refreshed.

Hope this helps Xxx

(when I initially started, I didn't fall asleep but by just relaxing completely for the 20minutes, ignoring outside distractions it does have a similar effect.

Now I fall asleep pretty much every time, but it really is so easy to fall back t sleep, hence the water cos U literally have no choice but to get out of bed & as I said before, by the time u have finished U feel totally refreshed & ready t go again ;o)

[StaceM8]

Also I have found people sleep too much, particularly after head injury & now find my optimum amount of sleep is about 4 hours a night (& my 20minute nap).

[NASAH_2015]

For me in addition to the many key strategies that other people have highlighted here, one of the most useful things I did post brain injury was to work with a Headway Neuro OT to understand what particularly triggers fatigue for me. Keeping fatigued diaries, so noting activities done during a day, for how long and how my fatigue / headaches were that day. Importantly then looking at in the broader context of what I had been doing in the days around that day to help me understand the interplay of different activities and how they impact me. For me I found a neuro psych assessment was helpful in highlighting where my deficits lay, so hence what would be harder for me and therefore be more likely to cause fatigue.

Things I had to learn (the hard way!):

1. Fatigue isn't tiredness and can't be slept off one day to another.

2. Neuro rehab isn't like physical rehab or training, trying to power through will only end in tears (or bad tempers....)

3. We can do so many of the things we were able to do pre ABI BUT we may well need to think flexibly about how we do those things e.g. time of day, not in combination with other things or just for less time or at less intensity.

4. Learn to explain your fatigue to those around you it makes relationships/ friendships easier (this is still a work in progress for me)

For me fatigue is my acquired brian injury. When not fatigue I can feel "neuro normal" and for short periods of time I can (more or less) function as I used to but quickly that transitions into fatigue and it all goes wrong!