Will it get better ……. : Hi all Don’t normal post... - Headway

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Will it get better …….

shazhal profile image
8 Replies

Hi all

Don’t normal post anything so maybe a little background will help with any replies and encouragement

I had a brain tumour removed in 2015 and then had a bleed on the brain after a head injury in 2019 . Recovery was slow this first time but the second time was quicker

I tried to go back to work full time and just got way too exhausted so reduced my days to three.

I am now having to reduce my days down to two and am feeling like I’m going to end up not working at all due to feeling mentally tired.

I so hard to get people to understand how my brain and tiredness works as I look good from the outside so I have stopped trying and pretend I’m ok but can anyone give me some encouragement that one day the tiredness will possibly end or will I have to always be careful with my energy.

Due to moving and Covid, the second time round I did not have any help after the head injury with recovery and have managed to find ways to manage .

But the tiredness is effectively making me more and more unable to do things I use to do

Like staying in touch with friends and going out …

Many thanks for any response

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shazhal profile image
shazhal
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8 Replies
Pairofboots profile image
Pairofboots

Hi shaz, there isn't really a definitive answer to this. Some people improve, others seem to get a bit stuck.

Either way, fatigue is something that needs to be managed. No one can really say exactly what is right for you. Identify what it is that causes fatigue, take breaks when necessary. Only you will know if or what relieves your fatigue, getting up and getting some fresh air, making a drink, having some quiet time, micro naps, twenty minutes on, twenty off, if morning is better, or afternoon, screen cover, or different frequency screen.

Occupational Health maybe able to help. If you are in a Union, speak to them for support. Also it might be worth talking to Headway, their contact details are pinned to this page.

It is nye impossible to explain the fatigue we can experience following a brain injury, so seeking specialist support may help you, and may help with your employer.

Keep us posted 🍀

shazhal profile image
shazhal in reply toPairofboots

Thank you for your response and encouragement My work have been good as I only had the job 8 weeks before the bleed on the brain …..

I think I will call them tomorrow and maybe get some advice

Thank you and take care

cat3 profile image
cat3

Hi Shazhal. I remember shrugging off the warnings from my consultant that life would be very different for me once I returned to a normal everyday routine. He was right of course.

You've had a double whammy m'love. There'll be lasting issues from the surgery in 2015, and the bleed will have caused further disruption for your brain. Neuro professionals can't predict the long term outcome for any individual ; some of us return to previous lifestyles, but most are forced to make big changes.

Speak with the Headway team on freephone 0808 800 2244 for expert advice and printouts on the effects of brain injury.

Is it time to take a step back ? If mind & body struggle badly then maybe it's time to reassess your quality of life and to consider drastic changes ? Stay in touch....

All best wishes, Cat x

shazhal profile image
shazhal in reply tocat3

Thank you for your response and kindness I just like my job working in a school and don’t want to just give up , not quite ready to retire at 50 and do think I’m doing well in other areas but do need to make some changes

Because it’s been a while since the bleed , I think people around forget and expect me to do all that I did before ….. then my brain so of stops working and then the funny side of this comes into play …. Wandering around the house not sure what I’m suppose to be doing , leaving the fridge open and forgetting things …..

I always enjoy your response and encouragement to others

Thank you again

cat3 profile image
cat3 in reply toshazhal

Maybe download & print out hard copies of Headway's leaflets on the after-effects of serious brain injury. Providing those proven medical facts for your employer might further substantiate your challenges and create extra empathy ?

Oh, and mislaying stuff or standing like a duck in a thunderstorm wondering why you are where you are is 100% par for the brain injury course ! 🙄 x

shazhal profile image
shazhal in reply tocat3

Great idea thank you Cat3 🤩

Leaf100 profile image
Leaf100

Hi Shazhal,Other than the spot on words that have already come your way - which I entirely agree with - I will mention language can help.

For example, everyone gets tired and so feel they know what that is, and so may be less sympathetic. So, using something like cognitive fatigue, or jus plain fatigue, may be helpful, and perhaps explaining it is more like a bad case of jet lag.

Unfortunately we have to manage the perceptions of others, whichis tough when we are struggling with our own.

Moving also can make things harder as your brain has less long term memory over where everything is, so the auto pilot doesn't work as well. Time and repitition hopefully will help this. It is also fatiguing your brain. Anything our brain gets extra work from causes more fatigue. One of the surprising ones for me was how much energy talking onthe phone zaps.

Simplifying things as much as possible is your friend. And when you can do less, do less - for example don't listen to the radio while driving or doing something else. Rest often - there is a pomodoro system falked about, where you do someyhing for 25 minutes, rest 5, and every 3rd one you rest 30 minutes. You may find 5 minutes on some tasks is enough that you need a rest.

People all have different recovery rates. There are also many copying strategies that help a person out.

What you describe is something most of us can relate to.

The other thing that happens is we have good days and then think, wow! I can do this and this and this...and then we crash for a few days. So, if you can remember when those days come, don't spend all your energy - stopping before you get wiped out often means the crash after isn't as bad. And, when you have a job you obviously need to try to keep reserves for that.

It doean't hurt to tell your friends you are having issues with extreme fatigue, so they don't think you are just disinterested or ghosting them. You can make a joke about bring a submarine - you can only come up for air now and then.

Remember you are healing - we don't expect to continue to run marathons on a broken leg, but we seem to expect a broken brain to do just that. It needs time to heal. (Broken legs have a known healing trajectory - with brains it isn't as straight forward, and takes longwr sometimes.)

Keep us posted.

Leaf

shazhal profile image
shazhal in reply toLeaf100

Reading your response, it all makes perfect sense I really get bursts of energy and then do loads and then like you said crash for a few days so yes I am learning as I go……

Really appreciate your response and words of encouragement from someone who has experience of a head injury and recovery

I do feel lucky to be doing so well compared to many who can no longer work and need so much more help than me

May your evening be relaxed

Thank you again

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