Sam is 2 years post TBI and still going in the right direction. Being an impetuous 24 year old he gets very frustrated with feeling low and struggles to accept that he’ll still continue to improve. One minute he’ll say this is as good as it’s going to get and the next he’s full of bounce and telling me about things that have happened etc. He’s always said he doesn’t want/need any help to help with recovery. One of his biggest issues however is fatigue and lack of sleep - not always linked as even a good nights sleep doesn’t help the fatigue much. We know this is normal but does anyone have any hints in dealing with fatigue during the working day? He works long hours but when the fatigue hits I’m sure everyone understands how it feels to hit the barrier when the brain says ‘that’s enough!’
Fatigue and stuff: Sam is 2 years post TBI and still... - Headway
Fatigue and stuff
Hi, what kind of work does he do, is it a varied job with different environmental factors or a static job where he is doing the same thing?
Unfortunately it’s probably the worst sort of job for that - he’s an IT technician who works at a desk dealing with IT issues all day. Has to use his brain and concentrate all day long
Has he tried a filter over the computer screen, it may help
No he hasn't - that's well worth looking into - thank you x
Hi Hetty. May be a really stupid question. But might glasses help if he doesn't wear them already? Noone can doubt fatigue in BI patients as its really common. But a few years ago I went for an eye test and was told I was incredibly long-sighted. I couldn't believe it as I never felt like I couldn't see, got headaches etc. But my fatigue had got so bad I needed to go and have a sleep in my car during lunch. Now I wear glasses for PC work its a lot better. I also find chewing gum and going for short walks to get some air helpful.
Hi Hetty,
It sounds as though Sam isn’t giving his recovery the time and space it needs. The thought of sitting, staring at a computer screen for 8 hours is not particularly good for anyone, let alone someone with a brain injury.
You are right that a decent nights sleep doesn’t necessarily “cure” fatigue, as tiredness and fatigue are two totally different things.
Does the company that your son works for have an occupational health department? Or even an HR department ? If they do, it might be worth him checking in with them and explaining about his fatigue. Or even his manager! Not all employers are aware about the more “hidden” effects of brain injury and how they impact on us.
It would actually be in the companies interest to support Sam with this as it would likely improve his quality of work. Fatigue can lead to mistakes & affect concentration etc.
He needs regular breaks, away from his
screen. Even 10 minutes in order for him to stand up, move around & have a drink will be beneficial. I have do do this in my university lectures, otherwise 3 and a half hour lectures make me feel terrible (and I am 6 years post brain injury).
I hope this makes some sense, ironically I’m feeling quite fatigued myself due to an acute illness but thought I’d try and help!
Wishing you both well
Emma
Thank you Emma. His company are very small. They were very supportive initially but as you said, unless they're directly involved they wouldn't necessary understand the long term implications. They are probably assuming that as it's 2 years down the line he doesn't have any issues when in fact the opposite is true and 2 years is very soon following TBI.
You are welcome Hetty!
It might be worth Sam checking in with his manager, just to explain how he continues to recover from his brain injury and how it’s not always easy to see the after effects such as fatigue.
Headway have some useful info sheets that could be helpful to you (and Sam):
headway.org.uk/about-brain-...
headway.org.uk/media/4130/r...
Yes, I thought two years seemed like forever but looking back it was still very “early”. Despite what the medics say, improvement continues way beyond two years (if you give your brain the chance to do so).
For example, at two years I was only just getting my ability to speak back. I was still very cognitively affected and couldn’t go anywhere alone (as if wonder off). I am currently almost 6 years post brain injury and I’d confidently say that the previous two years have been pretty amazing recovery wise!
All the best!
Emma
That's really lovely to hear - both for you and as inspiration and hope for Sam to cling on to xx
Thank you so much Hetty!
Wishing Sam the very best with his ongoing recovery!
xx
I was around the same age the time of my first SAH I had major issues with fatigue I made due work where aware of how fatigued I get I have a physical job that mentally demanding ang long hours I ALWAYS had to schedule a sleep in when I got home from work and regular short rest periods in work in agreementwith them
Dear Hetty56. I am 25 yrs post brain injury. I still struggle with fatigue, still get f
Dear Hetty56_ sorry I pressed wrong button before ending message-
.. Still get frustrated. All brain injuries have their similarities and differences........ The fatigue and drive to continue 'normally' often fight against each other sapping the energy that we might need to manage fatigue in the first place. A few years after brain injury hopefully we start to know what we can and can't do regularly, when and how we can extend ourselves and when we cant. For me I am still intelligent and still 'me' but I need to monitor my 'performance ' a lot to get the best out of myself. That involves all aspects of my life. A balanced life, routine, pacing oneself, regular but not excessive exercise, Mediterranean diet etc, turning tv off 1.5 yrs before bed all help improve my 'performance ' day to day. For me I might not do anything wrong but all of a sudden I might struggle if e.g. A chemical inbalance in my damaged brain throws me off kilter. A fun satisfying life but one lived with restraint (to give us the rest we need) can help us mitigate difficult periods that bit better and therefore achieve more in the long run.
It sounds as if it’s a question of slow and steady and being aware of limitations? It’s so unbelievably unfair that circumstances outside our control can affect us for the rest of our lives. I like what you say - it’s acceptance of what is and adopting strategies on a daily basis.
Hello Hetty56, I had a TBI in 1979, because of it ,I`m now epileptic, but even now over 40 years since my accident, I get very tired after I`ve had 8 hrs solid sleep, some days, I wake, put kettle on take my medication, within 15-30 minutes I go back to bed and sleep solidly for another 3-4 hrs, I`ve asked my Neurologist can he reduce my medication,but he said `Are your seizures getting better?` , I said `Yes`, so he said,why change the medication if its working. Also if he`s sitting a lot facing the computer, your not exercising your body, so you will get tired. Is he able to go for walks after his day sitting down, perhaps a bit of exercise and the fresh air may help.
Hello Leonard. I’m so sorry to hear that you still have such difficulties. I now understand that fatigue is an ongoing thing - perhaps one day they’ll find something that can help. The suggestion you made regarding exercise was something else to think about. All the advice says that exercise is good in many ways and I know from my own day at work that using your brain all day is tiring in itself. I’ll pass on your suggestion. Thank you and I hope your future is bright x
Hiya, let Sam know, I had my accident 26 years ago, when I was a similar age & still see improvements even now (minor compared to the first 5 years in particular. Read my profile, I'm quite sure it will help.
Also, as far as fatigue is concerned, as most people will know cos I mention it every time I see anyone say about fatigue, the 20 minute map is the most powerful thing I have discovered since obtaining my head injury and has been a total life saver for me.
THE TWENTY MINUTE NAP. (Sorry for those who do this already, don't mean to bore u but I've just read about someone else who get's fatigue)
Set your alarm for 20 minutes, drink a glass of water ( I'll tell U why shortly ;o).
Close your eyes & block out everything around U, ideally in a quiet room. You can even go t bed & shut the door (I prefer have a radio or the Tv on in the background, defer from outside distractions.
Sleeping is not essential, although I do fall asleep pretty much every time now.
The reason U drink the glass of water is because when the alarm goes off you will inevitably have to get up t go to toilet, cos the chances are you'd rather go back to sleep.
If U do however make sure U set your alarm for 20 minutes before U do.
.
The reason why 20 minutes is because they say after approximately 26 minutes U go into the second, deeper stage of sleep & the chances are U will feel more groggy than u did before the rest. By getting up to goto toilet, this will wake u up & by the time U have finished U should feel refreshed.
.
Please give this a try. Don't say it won't work & dismiss it altogether, like a lot of people do. Do as I say, drink a glass of water, go into a quiet room, set your alarm for 20 minutes, close your eyes & relax completely.
When the alarm goes off, goto the toilet (if U didn't need to, try it again but drink more water ,o) You should feel far more refreshed & ready t face the rest of the day.
If I hadn't found this I would have been walking around like a zombie for the last 25 years.
.
Oh & another thing I will say, I notice you haven't filled out your profile & it would be good if U could & what happened to you.
This will let others know why U had your brain injury. If everyone did this, in time you will remember details about others & your memory will start to improve.
Mine is still shocking but all these little techniques have helped me 10 fold.
Also by looking at my profile, I have given little tips that I have encountered over the last 25 years too and hopefully you will do likewise ;o)
.
Take care & wish you all the best
Stace Xxx
Hi Stace, I’ve read your profile - you’ve been through a hell of a time! I’ll pass on what you said about a 20 minute nap. Sam’s always said there’s no point as he can’t sleep in the day but you said there’s no need to sleep - that might come in time. I also can’t tell you how blown away I was by your comment that you’re still seeing improvements after all this time. They did say the quickest improvements would be in the first 2 years but they also said they’re still learning about it. Thanks for your reply - it was really heartening x
When I told Headway about the 20 minute nap, they appreciated it & told me how they're constantly learning so all experiences are greatly received.
Has Sam given the 20 minute nap a go ??? (properly)
Hi Stace
I wish I could say that yes he has and it's made a huge difference but unfortunately he has a streak of stubbornness and never seems keen to try the ideas that other people try and which they find works. This has also applied to his psychologist and all the meds - although he tried the meds for many months but didn't stick to them (side effects etc). He's not at work for 3 days this week (he's had to use his holiday before the end of March) and he seemed very relaxed and rested yesterday but I know that as soon as he gets back to work he'll be back at square one. Totally exhausted!
His line manager isn't supportive any more. I think it's a question of 'it's been 2 years now so you should be back to where you were' - I just wish they'd look more into the effect of brain injury and the length of time it can take to recover.
I'll raise your ideas with him again - it worked for you and it's such a little time to take out of each day when he gets back from work.
Heather
Hiya, it's even something he can do at work, even if it's go n sit in a toilet cubicle - as long as you're resting with your eyes closed.
Hopefully he'll find some a bit better than a toilet, but it is something I've done on a few occasions ;o)
Good luck Xxx
Dear hetty56, I must thank you for asking this, as I have found all the replies so helpful. Especially stacem8, my husband suffers terribly from fatigue. All he wants to do is stay in bed. He can go to bed at 9 or 20, and not get up until 10 or 11, unless I drag him out! And often goes bat to bed in the afternoon, for a couple of hours. I will try and get him to do this 20 minute nap, I've heard this before and I'm more determined now. I also love the comments about people improving beyond 2 years - I feel really impatient now, as he is only 1 year in. I really must draw a breath, and step back. Thanks everyone. And good luck Hetty and Sam.
Some of the things you said rang so true for us too. I read some of your other posts and I read that Sam has said some of the things your husband has said - like ‘this is as good as it’s going to get’ and ‘this is me now’. I get so frustrated hearing him sound as if he’s given up and I shed many tears. It was wonderful to read Staces post about still seeing signs of improvement. I totally understand how you feel seeing comments about this because I do too. I agree that we have to learn to be patient and concentrate on finding strategies to aid progress. Good luck to you too - please keep in contact xx
As I said Flower if I hadn't tried it I'd have been walking around like a zombie
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