1.  The F Word – (Fatigue)

It’s 12pm on Wednesday 18th March, I’ve just finished a Skype meeting with both Tina Boden in Scarborough and Claire Bullimore in London discussing how me and Claire might work together in the future, I’m pretty excited! Anyway a meeting on Skype! Check out how modern I am!

Well several years after Tina first suggested it; a short time saying it was for divs, quite a long time wondering why anybody would be interested in what I have to say and the rest being disorganised and brain-injured, I’ve finally gotten around to writing this blog!

I’m suffering with pretty high levels of fatigue at the minute so I’m going to finish this then chill because I am in a debt of fatigue which has lasted around a week so far and I want to get on top of it.  Ironically that’s what Claire and I are going to be working together on – talking about fatigue!

Rest! that’s what you have to do with fatigue, you have to give in to it as fighting it is pointless, attempting to fight it is the same as trying to get a car with no petrol in to run better by revving the engine harder. Thinking uses vast amount of calories, in fact a quarter of your cardiac output (blood pumped by your heart) goes to the brain. Before anyone burns their gym membership, quits juice plus, throws away their running shoes and replaces them with a book on philosophy, the bad news is that you can’t think yourself thin! I’m on empty and need to recharge, you recharge your brain by doing nothing! Fatigue is not you becoming a bit tired, it is your body and brain depleting itself of energy. The fatigue I suffer from doesn’t even have a name! Its called just that: fatigue! I pimp it up a little bit by calling it ‘neurological fatigue’, that word neurological gives the impression that I know what im talking about! Calling it that tends to demand a bit more respect than using its real name of ‘fatigue’, a condition that could be sorted by simply manning up!

Stimulation is what makes us fatigued and stimulation is anything that uses energy or burns calories. For example a busy bar has lots of stimulation; loud music, bright lights, fit boys/girls that attract your attention, all of which use up energy. Take the loud music, that has an effect on you especially if you like the song and start to dance! That uses energy. You have to shout above the music so people can hear and concentrate to hear other people – all that uses energy and remember what I said about thinking.? So just being in a bar environment burns a lot of calories compared to say a library! I find fatigue to be much like a smartphone where your overall energy level is your battery life and stimulation is the phone’s features that you use. For example if you have your brightness turned to max, you’re playing Candy Crush (or whatever you crazy kids are into right now!?) with music playing you’re going to run your battery down pretty quick just like the bar! You can make your phone battery last a lot longer if you have a charger handy and you keep plugging it in for 5 minutes every hour. That is just like if you have a regular power-nap, you’ll never get back to 100% battery but its enough to keep your fatigue at bay! Don’t let your phone’s battery life get to 0% though as plugging it it will not start to charge it straight away, you have to wait like ten minutes before it starts to recharge. I’ve found the same with my fatigue, if I let myself get too tired then a 10 minute power-nap is no good, I need to go to bed for hours before I’m refreshed. This is not scientifically proven but what I have found from my own experience. If you live with a brain injury and have found the same then please let me know.

So this is my first attempt at a blog! I want to write more and cover different topics, if you liked this or if you didn’t like it then please let me know why by commenting on my Facebook page, leave me some feedback! Anything you would like me to cover in my next blog, please let me know! I want this to be a good thing, a hub for discussion on traumatic brain injury, somewhere you can get answers to the questions you thought were too weird to ask! If you don’t want to post them on the page then private message me and if I can’t answer it I will find someone who can. I look forward to hearing from you!

Brooke x

25 thoughts on “1.  The F Word – (Fatigue)”

  • Blog him,nice work great Idea, we can be blog buddies once I get mine up and running when I’m riding the bike.

    Notice you put boys first in “fit boys/girls”

  • keep them coming Brooke I can’t really relate to what ur saying as Iv just got a thick brain not a broken one lol! You make an interesting read! I’m im sure u will help many people!

  • I would love you to come to my university and talk about your experience brook! Let me speak to my tutor and get back to you. Keep doing what your doing.

  • I’ve read your blog. Finally someone who understands how tired I can also get. Although test helps me. Sometimes I can go to sleep tired and wake up tired. When I try to “man up” and battle on, I can get very dizzy. The other night the world was spinning so much I realised that bed ways was best ways. I stood up and promptly fell over. So I decided it best to crawl to be. I even fell over on all fours! So I just lay there for about half an hour before attempting, successful, to go to bed again. The brain in wonderous and a wonder.

    • It is terrible isn’t it Ben there is no quick solution to it. The only one I know if is to rest!… For a long time! When you have a short attention span though sticking to anything is difficult even rest! That I think is something those with no experience will ever appreciate. Their solution is so logical ‘just don’t do anything!’ ….. But I can’t! Haha

  • Fantastic Brooke!! Well written, informative, entertaining! I love the smartphone analogy and also the bit about revving the engine harder of an already empty petrol tank! Excellent! I think a lot of this can be applied to everyone, not just those with brain injury, but it’s great to have someone with such specialised experience who is able to express and explain these things so well. You’re unique! I can’t wait for you to do more public speaking – I think you’re going to help a whole lot of people but I think this blog is going to help a lot of people too. Keep up the great work!

  • I found your new blog very educational Brooke, you see… it is doing a good job already! I’m sure it will be a source of support for other people faced with the same difficulties too. Well done.

  • Nice work Brooke!….A little advice – if you are to do this on a regular basis – use a similar (not the same) text on the blog that can be easily read on the page….However – great Info Brooke….look forward to reading the next installment

  • As a brain injury sufferer myself Brook, I think your blog is absolutely spot on and completely and clearly describes the “F,” word!

  • Thanks for sharing Pamela, although not directly related I’ve previously heard the fatigue I get been likened to ME. Have you been told what to expect in the future, I understand that everyone is different but a girl whom I was at primary school with had ME she is totally fine now. I really hope the same happens for you

  • My Dad’s long term memory (made with an un injured brain) is great! His short term (after brain injury) is terrible. Do you think it can improve over time? Or ways to help him make short term into long term…

  • That was an amazing blog and exactly right. I can find it hard sometimes explaining to people how it can feel. I have to go to bed at 8 every night and end up putting my PJ’s on at 4! I usually have to sleep till 7 next morning and sleep during the day if I have a fit. This can happen if I get too tired or don’t eat enough. My limit for activity each day is usually about 4-5 hours after which I have to lie down anyway. I am prone to headache and migraine as well, which can be caused by everything from fatigue to the weather. Of cause, it’s off to bed if I get these too!
    My stamina had never been very high after the tumour. I was never picked for teams in PE as my co-ordination is bad, but it’s definitely got even worse since the cancer.I must use allot of energy just trying to hear and keep my balance.
    As I said, I am willing to help you I your research etc however I can. Keep it up! x

  • Hi Brooke
    I must say a massive thankyou for your blog. It has helped me so much to understand things. I am Ricky Ashworth mum I don’t live with Ricky so visit him at his dads house. There have been questions I have wanted to ask Ricky but I find it so difficult. However you have answered some of my thoughts . There was something you said about feeling isolated and I totally get that. I often look at Ricky and wonder what he is really thinking when people are constantly talking and questioning him . I also miss having Ricky to myself . Thankyou for writing this blog please keep it up I have found it honest and helpful xx Mandy

    • Hi Mandy thank you for getting in touch, I met Ricky at Basic where I volunteer. He had a big effect on me that day, I spent all night watching YouTube videos of Ricky and sent them to my parents and told them all sbout him. He brought back quite difficult memories for us all.
      If you would like to meet for a coffee or something one day I would be more than happy to help in anyway I can. Just let me know! Take care Mandy! X

  • You know George, almost everything you’ve said hits the nail on he head!
    My head injury was also in May!
    May 28th 2006, the call went in to the police at 11 minutes past 7 in the evening, I completely understand what you mean about memory being fragmented and you can remember stupid things from years ago but nothing new also things that you attach feelings to are easy to remember. I remember the same year that I came out of hospital I can remember my dad falling over the dog when he was putting Christmas decorations up but I can’t remember my daughter being born in 2004, my first memory of her is playing with her on my bed in hospital when she was nearly 2. You were in and out of hospital really, I’m sure I told you this but I released from hospital eleven months and one week after my accident. My brain activity was almost immeasurable when I was monitored in hospital and nobody thought I was ever going to wake up. They let me out early because my mother was a rehab nurse with 20 years experience ( she was far more experienced than the nurses on my ward and they probably had a party wen I left!) I used to go home at weekends because of my mother and going back on a Sunday evening was always a miserable experience. I remember my dad saying one time that I always went quiet on the way back to my ward. My personality has completely changed, before I was a proper lad (weekends were football and on the piss) but now I’m clean, tidy and organised, I’ve got almost 800 cd’s and every one Is arranged by artist then year so you could name any artist and I could point to it straight away, I’ve eve caught myself with a fucking duster in my hand on a number of occasions! That’s not Leigh Birch for fucks sake! I’ve got loads and loads to tell you because it feels like this is really good therapy for me, I just want to tell everyone everything. I’ve shed lots and lots of tears over the last 9 years( the first 5 especially) but I’m in a good place now with an incredible girlfriend that I want as my wife one day. I’m going now but we’ve got lots to talk about my friend

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