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The Misunderstanding of Chronic Fatigue

Posted 22 May 2019 by Carol Hopwood

Carol Hopwood - Head of our Serious and Catastrophic Team and secretary of Headway Sefton chats to her friends Jan and Cathy Johnson about the significant impact that fatigue has had upon their lives since Jan’s traumatic brain injury.  Each gives their own perspective and gives insight into the importance of properly managing fatigue following a brain injury.

 

Jan’s Story

I was out cycling and a pheasant flew into my wheel. I fell off my bike and I suffered a really bad brain injury and was in the hospital for a long time.  That was several years ago. I suffer from fatigue. It makes me feel tired and grumpy.  It is depressing and it makes me feel empty. It annoys me when people think I am just very tired.  That is not very helpful.  Tired for you is not the same as tired for us, brain-injured people. Basically, it’s a very hollow feeling.  It gives me a very painful head.  It feels like my head is buzzing or sometimes if feel like I flashing lights.  It’s like a migraine on steroids. It is hard for me to manage it on my own. Because my injury is not visible, I feel that there is so much pressure on me to act “normal”.  This means I overextend and don’t always take any time out. It is very hard when you have worked all your life to say "I am going off for a sleep".  I see people look at me and I know that in their head they are saying "really!" They don’t understand. If I don’t manage my fatigue, I can literally end up having a breakdown or a seizure.

The things that tire me out the most are people talking too much, noise and crowds.

 

Jan’s wife Cathy gives her perspective and some excellent advice.

 

My husband's fatigue is easy for me to spot and usually occurs about 2 hours after any mental or physical activity - his right eye goes dead looking and his mouth turns down even more so than normal!  He struggles to find simple words and becomes grumpy (even more so than normal!) irritable and extremely negative

I have to make all of the moves to manage his fatigue because he very rarely just takes himself off for a nap. We have converted some space in the building our business is based in so that if he goes in to see the staff they are able to encourage him to have a sleep.  If he is not encouraged to sleep, he brings his fatigue home

I’ve learned to manage his fatigue by making him cosy and creating a comfortable sleeping place on the sofa, giving him an eye mask, putting on classic FM and making sure he is wrapped up in a blanket.  This is harder when we go away but we try to make small adjustments when we travel for example always having a pillow in the car so that he can rest.

If his fatigue isn’t managed properly then the effects are cumulative and result in a crappy weekend together.  I am often left on my own because if he has overdone it he has to go to bed early because he is so tired.  We do argue a lot and disagree about his fatigue as he has rose tinted specs on how he feels he manages it himself - I can always tell when we are heading for a rubbish weekend.  This one coming will be for sure as he has too much to do this week and has overdone his schedule.  He doesn’t function well and forgets a lot more and basically is very grumpy and negative if his fatigue is neglected.

My advice for others would be to read everything you can about fatigue following brain injury and learn to accept that fatigue is a symptom that needs urgent attention.  Speak to others in the same boat and try to recognise the denial. If fatigue isn’t managed from the word go then none of the other symptoms will improve.  People appear to feel some sort of shame at having to nap at odd times but as soon as the acceptance comes in then they need to establish routines and strategies.  Find a suitable napping place wherever you are.  Establish this and agree between you that this will be the place to nap during the day.  No phones or screens allowed.  A mask to block out daylight.  Maybe a white noise machine with woodlands or waterfall sounds to distract and bring sleep on.  Earplugs too are invaluable - the malleable silicone ones that you can shape into your own ear space.  Once fatigue is managed well then all of the other symptoms can be more easily managed.  Sleep is the foundation to healing.  Once people recognise the great results from heeding this advice it should be easier.  You’ll notice that after a while though the BI person forgets how fatigue made them feel and just like when we feel better after a couple of days taking an anti-biotic they will forget they ever had fatigue and fall off the wagon.  Just needs vigilance from the carer and a decent dose of nagging.

 

Cathy is the Chairperson of Headway Sefton.

Find out more about help and support that are available at https://www.headway.org.uk/ 

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