My brother is recovering from a big brain injury. He’s recently home from hospital after an 18 month stay.
Anyhow mostly he’s incredibly fatigued. However some days he can be so awake. Perhaps he’ll keep this up for 2 days in a row. But then on day 3 he’s so exhausted he can barely stay awake and this goes on.
I find it hard to understand why he seems to be so awake and turn a corner and then not!
Hi,
FATIGUE
He's going to have to learn about "pacing" now that he's out of hospital, to manage his fatigue. This is about identifying his triggers and managing his energy levels to minimise the boom and busy cycle. It's much harder than it sounds!
Link below to some Headway info on fatigue that might be useful:
headway.org.uk/about-brain-...
SPOON THEORY (FATIGUE)
There is something called "spoon theory" that might help him:
"If one spoon equates to a unit of energy, how many spoons does it take for you to complete your daily tasks? For example, if you work in a positive and supportive environment, work may only take two spoons. Whereas, work in a more stressful environment may take up to five spoons. If you are a morning person, your morning routine may only take one spoon of energy. Now, imagine you only have twelve spoons a day to complete all the tasks of the day. What happens when your day requires fifteen spoons instead of twelve? Then you must borrow three spoons from the next day, meaning you will start the next day with only nine spoons. After a couple of days, you will be out of spoons and exhausted!"
SLEEP DISORDERS
"A review of sleep disorder studies and surveys suggest that sleep disorders are three times more common in TBI patients than in the general population and that nearly 60% of people with TBI experience long-term difficulties with sleep."
See the link below for more info...
msktc.org/tbi/factsheets/sl...
SLEEP HYGIENE
There are things that he can do to improve his sleep patterns, they don't always work as well for people with TBI but might help a little. They call this "sleep hygiene" but it has nothing to do with cleanliness!
Here is a link to some sleep hygiene ideas:
headway.org.uk/about-brain-...
Hope this helps to get you started.
Ax
Thank you so very much for taking the time to reply so thoroughly. I really appreciate that you have given me so much help. The spoon theory seems very thought provoking .In all honesty at the moment with my brother, it’s not so much running out of energy as the day goes on. But rather some days waking up ok and others waking up with zero energy from the word go!??
Possibly a side effect of medication? I am weaning off one because of a sedating effect. I identified this myself, my GP does not seem to have interest that I have been sleeping for months. It took too long to get an answer of how to wean off as my GP had to refer back to Neurology. I am still weaning off but already I feel a positive difference in being more alert.
The change from hospital to home requires more brain power, he will be processing loads more information with his poorly brain. He only has a limited amount of brain battery power, it will soon be used up with environment, noise, conversation, taking care of himself and making decisions. You add in visitors, tv, and any anxiety and he will depleted more. Rest is really important, it’s the only way he will recharge. It takes months and years to make any recovery with a brain injury, you don’t get over it. Everyone makes some recovery differently, so you can’t compare. You need to make sure he has a rest every day and minimise his sensory impacts, so his brain isn’t have to process so much information at once. Follow the spoon theory, which works. Look into sensory overload and take time to do every task now. Best wishes
This is just me but I see it that each day I start with set amount of energy. Daily tasks like getting up, washed and fed take up so much then add in extras and evening routines. Previously felt like morning routines were automatic but now have to think what I am doing all the time, using some of that energy.
If I do too much one day it can have knock on next few days, especially if it has upped headaches and fatigue. Living more in taking each day at a time as am in it.
Information from Headway has been so valuable to me as had no idea what affects would come up. Info online but very helpful on the phone too. Best wishes to u both.
I think of my energy supply as a bit like a rechargeable battery starts off full at the beginning of the day and then gradually wears out depending on my activity and carbohydrate/ caffeine intake needing a full recharge again overnight😀
The fatigue was something I was bot prepared for. I'm 8 months into my recovery from a severe brain injury and I have learnt to pace myself. I try not to do too much in one go and my carers and therapists are keeping an eye on my energy levels
Hi Rayoflight, the non sleeping thing isn't that unusual on here - you'll see conversations happening late at night.
It was like I lost my off-switch after my MTBI - suddenly I could stay awake all night, and did. I've read and heard stuff about the parasympathetic nervous system ( the rest and digest part) not kicking in properly after brain injury - so suspect it's something that can happen after injury. I just about seem to be able to manage sleep hygiene at the moment, nearly four years down the line, which is helping a lot currently, but it's still an effort.
Interestingly for me, I think when my fatigue is bad, my inability to get to sleep actually gets much worse - which is really counter intuitive. So as you describe, I can be keeling over with bad fatigue, and not be able to sleep at night. But if I take regular nap,/ rest breaks and manage my fatigue during the day, I'm more likely to get an ordinary night's sleep.
It must be pretty hard for your brother having left the routine of the hospital. I still find other people's houses very loud and bright on the whole - sensory overload can happen quite easily in ordinary environments, and fatigue crashes in.
Totally agree with Spoon Theory. Think of us starting the day with less spoons than other people too.
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