Fatigue

[MK-1]

Hello everyone, I had a brain haemorrhage Nov 2016.

I suffer from fatigue, it does get me down, do others suffer and how do they cope.

[Mads1975]

Yes, unfortunately it comes as part of the brain injury package of side effects. I suffered my abi in 2008 and I still feel the need to take an hours nap during the day.

My wife finds it difficult to understand when I haven’t done anything strenuous but accepts that is something I need to do in order to get through the day

[Leaf100]

Hi MK,

Yes, the fatigue thing is really common. It can be hard for non bi people to understand, because 'everyone feels tired'. Sometimes they can relate if you describe it as feeling really badly jet lagged - more people have experienced that one.

Keep a log of things that tire you out, and reduce them, even if you can do them. For example, for years I could not listen to the radio while driving the car. I can now, but I don't. Because, it tires me out too fast.

Other things that help me are:

- wearing ear plugs or something like that to reduce the sound where ever I am

- spending a lot of the day in quiet - ie no radio, tv, music or whatever on - just the ambient sounds of where I am

- resting - again, resting means sit still do nothing in a quiet and dark place - not listening to music or playing a computer game or whatever

- taking a few rest breaks of 10 to 15 minutes at a time through the day helps some, for others they have a different rhythm and you will have to experiment

- eating properly

- getting fresh air every day

- observe what makes you have a relaxation or content response, and make sure you do it

- pace yourself - when trying something only do a few minutes at a time - maybe more months - before you do something longer

- pace yourself - do not try to do 4 appointments in the same day , try to spread them out and have a rest day in between, if you can

- pace yourself - make sure you have days where you don't need to do much before a strenuous day - except if you have a medical or some appointment where they need to see your symptoms to get it - in that case, go in a state where they can see them

- hang out with people that are not stressful to be around, guard your peace

- try to stay on top of bills and laundry and maintanence things

- try to get organized so you know where things are - having less stuff may help

- note things that make you more fatigued - for instance, are you more fatigued when it is hot out? stormy? and plan for it

Above all, try not to get down on yourself. It is really impossible not to compare to how it was before - you do have a memory of that . It is possible to get to the state where you don't suffer over the comparison too much - though it may come and go.

Remember to be kind to yourself, and kind to your body, and kind to your brain. You are dealing with an injury.

Hope some of this is helpful.

best wishes to you,

Leaf

[BrownEdgeBoy]

My TBI was in 2016, I’m experiencing similar struggles at the moment too. I’m waking up shattered many mornings of late which places me in a difficult start point with the work day ahead and 2 children under 5 who keep me busy. My fatigue has at times been strong/overwhelming, but also faded at times over the years, and I’ve found that much of what Leaf100 has said to be true and very helpful advice. If you have the right things in place ie being healthy, present and organised, these help greatly. Sometimes though I find I am just at the mercy of it, so then I’ve learnt (still learning even 😆) to be as mindful as possible, don’t be too hard on myself and do the best I can with what I’m capable of. I too get frustrated by this as there’s so much I want from my life, but over the years I’m finding more and more that these things are still well within my reach, but I’ve just got to take a little longer route than I would of used to. I’m doing at lot of breathe-work this year (Wim hof based, or focused/meditative breathing) and I’ve found this to be super helpful in those moments of low energy: take 5 minutes to sit and relax and breath deeply and get some good oxygen into the brain. There’s a really good section on the Calm app if your interested that I’ve found really helpful for that kind of thing!

Wishing you all well

DG

[Leaf100 in reply to BrownEdgeBoy]

Hi DG,

the breathing exercises you mention sound really good. Does Wim Hoff explain it on youtube or something somewhere? I am looking for some place free that would describe it. I don't have the Calm app.

TIA

Leaf

[BrownEdgeBoy in reply to Leaf100]

I found these videos, which will give you a good idea of what to expect, and and idea of what I do daily. I can’t say enough how much it’s helped myself: I’ve suffered with depression ever since my TBI, and breath work and cold exposure are 2 things that have helped to turn my life around, and believe me when I say I’ve pretty much tried everything!

m.youtube.com/watch?v=tybOi...(Not working as expected?)

m.youtube.com/watch?v=LgVRc...(Not working as expected?)

m.youtube.com/watch?v=5DqTu...(Not working as expected?)

Good luck and hope these help!

[BrownEdgeBoy in reply to BrownEdgeBoy]

And just for an idea: The first Wim hof video would be something I do every morning before the days begins, or before any cold exposure practices. The other 2 are examples of exercises I do during the day when the time calls for extra energy or a little calm reset, which I’ve build into my ever growing daily go-to’s! 🙂🙏

[Leaf100 in reply to BrownEdgeBoy]

Thanks, I will try these out. I am not really familiar with cold exposure techniques, except that I saw them on a show that talked about how they helped with mood.

Leaf

[BrownEdgeBoy in reply to Leaf100]

Brill, if you find them helpful/enjoyable, there’s lots more breathing techniques to discover too!

The cold exposure has helped me greatly with my moods, I’ve been practising for almost a year now, my best advice would be to find a breathwork/cold exposure coach like I did who can guide you correctly and safely as you begin the practice, as it does come with risks for anyone, not to mention us guys!

[Painting-girl in reply to BrownEdgeBoy]

Hi DG, know what you mean. The waking up with the half empty battery thing is a pain

I do short 3 or 5 minute mindfulness breathing exercises to give me ' brain breaks' too. I use the Headspace app (basic ones are free) and the audio tapes from the mindfulness based stress reduction (MBSR) course I did - that the neuropsychologist suggested early on. One of the quirks of my MTBI is that I find it somewhere between impossible to exhausting to do any meditation exercises that rely on visualisation (like the walking on a warm beach stuff for example) any more - but the stuff based on just focusing on breathing is great.

The stress reduction course people say it takes just three minutes timeout to cancel our fight or flight impulse. Hence the three minute focus elsewhere. I remember my neuropsychiatrist talking about something like 'an over reaction or increased sensitivity to stress' - so it would make sense to do those short breathing breaks to take the pressure off. I was doing them once an hour at first, and will still do that if I have more tasks than I can really cope with in a day ( when working through one of ny endless lists!)

I think I draw the line at cold exposure!! Word of caution - my specialist concussion physio specifically warned me off swimming originally, because he said it would raise my heart rate too far too quickly and delay my recovery - I was very 'exercise limited' like many people with MTBI and had a supervised program of exercise that was entirely based on working at a heart rate that did not trigger post concussion symptoms, and very gradually increasing this over a period of months up to my calculated max heart rate - it's supposed to reset your autonomic nervous system, which gets out of sync after concussion ( see John Leddy's work and concussion research at Buffalo university in the States).

So my worry with cold exposure is that it puts your body under stress, and so I assume it would push up your heart rate, so it could be very detrimental indeed to people early in their recovery, or indeed later.

J

[Leaf100 in reply to Painting-girl]

Heart Rate Variability is definitely a thing that people with brain injuries have to watch out for. If you get your breathing and heart rate in synch, your body will relax - you have brain cells in your heart as well as your head. So, your heart sending coherent signals to your brain means they don't have to come from the frontal cortex down and get messed up because of the injury. I saw a video from the HeartMath people on it, and also someone at my local brain injury society is currently doing research on it.

I can't find it just now, it is on one of my other posts. I will look for it later and add it if I can find it. It was from Heartmath UK.

[Painting-girl in reply to Leaf100]

That's really interesting - thanks Leaf. So laying down and focusing in breathing as in the mindfulness techniques could be beneficial on more than one front?

[Leaf100 in reply to Painting-girl]

I am not convinced they are exactly the same thing. Though you may end up in a similar place. ? Heartmath is heart centered, so though you can use timed breathing to help you in the beginning, the goal is to focus on your heart while you breathe rather than on your breath. When you get it, and are in a coherent state, the body and brain calm down at the hearts's direction, it is not about mindfulness (that is thought focussed). Heatmath is heart focussed. Basically think about how you felt when holdng a puppy or smelling a flower, and imagine your breath coming from your heart. Even being in the state now and then really helps a lot, and of course over time you can learn to put yourself there when needed. So it becomes more about how it feels than what the brain box is doing - because the heart is the boss, not the brain.

[BrownEdgeBoy in reply to Painting-girl]

Your practices sound very helpful and similar to those I implement myself 🙂

I’m sorry to hear that the visualisation meditations have become difficult for you, I can’t possibly comment on your circumstances but for myself through slowly building them into my practices over the years, I am able to focus and enjoy these again, if that give any inspiration at all 🤞

I too found/find it tough to balance all the ‘tasks’ of the day at times and my use of ‘breathing/calm breaks’ has helped greatly in my weekly structures too.

I certainly understand your concerns to the cold exposure, and what your specialist informed you about heart rate is obviously very true. If I can share my journey: I begin the practise almost a year ago (4+ years post injury) and sought the guidance from a qualified breathwork and cold exposure expert, along with daily Wim Hoff breathing and increased cold shower practice. The key is to practice the breath work (deep breathing and breath retention) in order to allow your body to remain calm under the stress of the cold water impact. The best way to begin this is to get good at the breathing (2 minute retentions for example) before approaching any serious cold water sessions, so begin with short cold showers and building up tolerance slowly over monthly periods is key, and by matching the breathing and cold like this over a period, my heart rate didn’t increased greatly. Over time, practice and following correct guidance, and learning to listen to my body, I’ve learned to maintain my heart rate as I step into open water to the point of zero shock response and then what leads on to a truly calming and powerfully experience. By committing correct and safety to these practises, I cant say enough how much personally they’ve helped to turn my life around, mentally and physically the benefits have come to me. Obviously all our circumstances differ so my best advice is to seek professional guidance like I did, and also keep an open mind to what’s out there to help us all individually, regardless of one professionals opinion to another, I truly believe and operate by going with what feels right and safe for ourselves and trust on my own intuition where I can.

[Painting-girl in reply to BrownEdgeBoy]

Thanks for explaining what you did in more detail - my concern is that someone new to this site, might risk their recovery on reading your post

My physio is a concussion specialist I was referred to by my neurologist, who routinely works with elite sports men and women. His clear advice is that raising your heart rate above your post concussion tolerance, except very slowly and in very carefully controlled circumstances is to be avoided after TBI. (He has several degrees and is a college lecturer at UCL puresportsmed.com/team/theo... )

I think that a personal philosophy that works for Wim Hof - an 'extreme athlete' and Gwyneth Paltrow, isn't particularly ideal for most BI sufferers. This article mentions that it induces a stress response, and I certainly have an over sensitive stress response following my TBI.

irishnews.com/lifestyle/202...

Good to know you can practice visualisation again, and that you have developed a way to manage your life with regular breaks, four years in.

[Catperson18]

I have had a TBI this year. I am still getting used to how the condition affects me. I am trying not to let it rule my life. I am trying to organise get togethers with friends and day trips out, but I make sure that I have a day after to relax and recover. And try not to push myself too much when my body tells me not to. I was afraid to sleep too much in the day to start with but have realised that my body is just telling me to re charge. The main thing is trying not to compare myself to how I was prior to the accident

[Painting-girl in reply to Catperson18]

Yes, it's very difficult to adapt isn't it? My physio also suggested one or two days resting up before an event as well as the day after. It did work - and got me through a couple of family weddings more or less in one bit!

[Hidden]

Very good advice from theses posts. My daughter had a TBI 3 years ago and has ongoing fatigue. I feel it’s important for her to rest as much as she needs to and not take on too much. It is ok to say no to people. Wishing you all the best 👍

[Kavib]

I had mine March 2015 and it’s now my meeting normal , I take a short nap each day to help or just sit in a separate room to zone out if any noise for a good 30 mins to 1 hour. I think after 4 years of recovery I realised this is the new normal. We do a podcast called life with no filter which explains things like fatigue. If you can please check it out. It’s on my profile / messages . Take care kavita basi