Do you experience fatigue after brain injury? We n... - Headway

Headway

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Do you experience fatigue after brain injury? We need your help!

headwayuk
headwayukAdministrator

We have launched a new survey to help us find out about the long-term fatigue that is sometimes caused by brain injury.

The results will be announced in May as part of our 'Brain Drain: Wake up to fatigue!' campaign, and your answers will help us to raise awareness of this hidden and often misunderstood effect of brain injury.

Click the link to take part in our short survey, and please share to help us reach more people who are affected by fatigue: surveymonkey.co.uk/r/fatigu...

You can find out more about the campaign and get information on managing fatigue on the Headway website: headway.org.uk/get-involved...

Thank you as always for your support.

13 Replies
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Hiya, as I have mentioned many, many times on he site, what works for me & many others I have mentioned it to, if not all (that I'm not entirely sure about), but a 20minute nap every afternoon & also one when u start feeling fuzzy / exhausted, is essential for me.

One thing I do regularly forget though, however important it is, is to drink a glass of water before I have my nap, cos getting up is usually the last thing U want to do.

Drinking water makes U get up to go t the toilet & you wake up properly, your head clear & back to normal basically.

It is important however, if U do fall to sleep again is to reset the alarm for a further 20 mins cos after 20mins U go into a deeper stage of sleep apparently & therefore U have a proper 2hr nap which is similar, but then you're wasting 2hrs of your life, rather than 20 minutes ;o)

Hidden
Hidden in reply to StaceM8

Going to try the water thing! Win win! Pre-hydrate and wake naturally! Thank you!

StaceM8
StaceM8 in reply to Hidden

But even more important is the 20 minute nap, the water bit was just to make sure U get out of bed when your alarm goes off, cos that is the difficult bit. The 20minutes refreshes u no end ;o)

Hidden
Hidden in reply to StaceM8

Yes, I caught that! :)

Yes, fatigue is so difficult to deal with. No refreshed sleep. The misunderstanding that the fatigue is the same as tiredness causes such frustration and provokes comments like ' get an early night' or 'yeah, I'm tired too' or ' are you eating properly'

I could scream. Sometimes, it is actually sore to be in bed or the sofa. I have had a night's sleep ( wow!) and woken up so sore and stiff and no less fatigued, that my hopelessness sets in. If I spend time out with family or friends, I am so unwell for the next couple of days.

Times like Christmas, Birthdays, Easter, Mother's Day... Getting gifts or trying to be part of things when up against so much is heartbreaking.

Also, I live alone. I don't drive. I have literally gone without food and heat because I couldn't sort anything.

I look normal except for that exhausted, lack of rest and in pain look at times. Again, on a bad day, comments come... ' you look as if you are coming down with something's or ' well, you are getting older you know'

The impact of the fatigue is overwhelming.

I didn't want to 'like' that, so I'll just say that the misconception that 'fatigue' is the same as being tired grates on my every last shredded nerve.

When I still had a job, I asked my team to imagine the 7th night of broken sleep with a new baby, and an eight-pint hangover at the same time, to explain that 'fatigue' wasn't the same as the post-lunch slump.

This is sadly our reality. It would be really helpful if there was a better way of naming it or explaining it. I don't know what that is or how. I think it is trying to explain and describe symptoms over and over again that causes really low times. That's what I love about my headway group, no explanations required. Bliss. We have actually laughed our heads off at some of our antics.

Not sure about babies, the sh8t I got was "I didn't sleep when my child was a baby, days without sleep and I soldiered on"

My response "yep done that and it's not the same".

Hidden
Hidden

People just look at you with contempt when you mention it.

Twice recently I've had friends tell me that "until you've had kids you don't know what tired is" - I just smile, tell them they're doing really well to cope with the sleepless nights with their new baby, or the exhaustion of choosing a school etc.... and walk away before I cry.

My 'normal' used to be 12-14 hour intense working days filled with managing people and deadlines - sometimes this made me tired. So I would sleep, then feel better.

People just don't understand that you wake up as tired as you went to bed.

I have been trying to find a 3 day/wk job so tried explaining this again to recruiters - they just write you off.

Establishing work patterns to manage fatigue is as much of a deal breaker at work as mental health issues.

The media might be getting more accepting, but recruiting managers, and even HR departments, certainly haven't changed.

Fatigue - best not to mention it.

Just smile, walk away, and pray you don't collapse on the way home!

Done :-) i dont always suffer from fatigue but when i do its normally because work has been busy, when i got out of hospital a 15 min conversation would wipe me out all afternoon and evening, then it got better and i got more tolerance now im back to being less tolerant, if work is busy or the office is noisy that has a impact or if i had a day release to go to college a few years back or a train course for 7 hours of intense learning that can wipe me out and im currently off work due to fatigue i would come home and collapse and sleep for 20+ hours sometimes when things arent busy i can still pull a 20+ hour sleep, 30 mins naps dont work for me (or water) as i normally end up more agitated i need at least 2 hours minimum, sometimes a long drive or train journey can shatter me or if im in a big group of people (do you want more examples :p, despite all my successes my brain injury still effects me but ive gotten so good at managing it over the years that its very hard for the average person to notice, but put me in a room with a professional and they can read me screaming, i once had a entire ad worried about me that non trained professionals else could understand, becaise as the only person in work who full understands me once said i talk via the medium of body language and i think this is not to do with my brain injury (it just enhanced the skill) but i started learning how to use body language when i had to deal with my alcoholic mother from age 10) i also feel more tired/agitates both in the run up to my period and when im on my period (which i still hold accountable for causing my brain injury as i started in the coma)

Clearly the specific fatigue that we are all talking about is more than tiredness or exhaustion from some heavy duties and that is absorbed by a good night's sleep. It is involuntary isolation because that is exactly what it does. How many bored relatives and friends, how many disinterested work colleagues and patronising doctors and consultants, how many things left not done or followed through do we have to deal with day in and day out?!! I am sure that is the cause for so much loneliness and

despondency. How to change peoples' understanding and perception. Maybe rather than leaflets or factsheets, this topic needs to be visual... Someone saying it and showing what it looks like, a health advert like the ones for strokes etc.... Don't know for sure, but education would maybe improve quality of lives?

Fatigue really is one of the unseen and hidden effects for many people with a brain injury.

It appears that not so much as a cure but more on how to manage fatigue.

As mentioned, rest, sleep, tasks that may cause more fatigue all need to be educated and managed.

I believe that some fatigue symptoms can be confused with depression.

Plenty
Plenty in reply to Plenty

Well done to headway for raising more awareness.

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