My brother has bad fatigue. He can literally crash and be out of it for days.
We’ve stripped life right back and it’s improved quite a bit.
But now I feel I’m living with tension all the time! I’m always trying to guess how long he should be doing an activity before his ‘battery goes flat’.
So today a friend called. It was fine at first but after half an hour of continuous chatting I started to feel stressed and wondered if I could ask him to leave!
I feel I’m continually in a place of tension!
Any advice?
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Half an hour is good, was it much less before. I remember my patterns from moments to minutes, to tens of minutes and so on, between each it took from 2 weeks to 10 days to 7 days then to between 3-5 days. This went on for 3-4 years. I noticed after a while that I never got worse than I was before if I did not overdo things. It was like a step by step function then crash, time out, then function and crash, but with gradual improvements each time. If you record the function and crash times together with type of stimuli that caused the crash you will find a pattern. Hope that helps.
Yes but these were deep crashes, it still takes a bit of time to pick back up. what I mean by a deep crash is that I could only lay down in a bizzare but nice peaceful inner space for 18 to 24 hours at a time, eat, drink and toilet for 5-10 mins and shut down again. The pick up out of this took weeks (in the beginning months) to get to the state I was in before the crash (which was fatigued and lacking cognition and sensory awareness). However each time going through this cycle there was improvement afterwards. It's like a long and slow trajectory of recovery. Towards the end of the crashes, 4 years post injury, I'd be good and functional for days with only a small crash for 1 day. You will reach a tipping point over time where the crashes get shorter and equal to the good days, then the good days get longer than the crashes. I did get private treatment for visual issues which was a real game changer for me by reducing visual sensory overload drastically. It reduced my fatigue by about 50% or so after the first treatment and a further 30% with the second. I redeveloped my cognitive functions and spatial awareness through neuroplasticity exercises. There is virtually nothing really wrong with me now, I consider myself normal but my neuropsychologist thinks there are a few issues. I'm just getting on with life.
Wow that's so helpful to hear. My brother has such a similar situation in that initially he crashed almost continually. Then we reduced his activities and it became 4 days to 1, now it's 2 to 1. Similarly to you when he crashes he's like a dream like state continually (however unlike you he finds this incredibly unpleasant) and also like you his good days are still fatigued.
We have kept a diary but don't know what the trigger is.
When you were going through the time of deep crashes, were you careful what you did/limit your activities at all?
I hope you don't mind all the questions but it's so good to come across someone so similar!
It's so good to hear of your recovery.
He has visual issues. What did your private therapy involve?
The dream like state can be managed by just accepting that this is what happens during the crash, lose the fear of it and the anxiety will fall dramatically. The way to approach it is to say 'this always happens but you always come out the other side, it does not harm you, it's the fear that makes it bad.' With hindsight I think this is part of the brain healing process. The brain is trying to adjust to the factors that cause the crash.
I found the best way at reducing these was to avoid everything that had a negative effect. I lived in the dark for just over a year after realizing that if I went into the light it caused stress and fatigue. Talking and trying to find words was also a draining factor. I found processed food, spices, acidic fruit and drinks also triggered gastric issues that caused stress. For me though the biggest factor was the visual problems and this is what I looked at solving first by seeing a behavioural optometrist (they don't provide this on the NHS). johnpglover.co.uk/
Optometry works for some but not others, I took the gamble and it paid off.
Then I set about correcting the other issues by using neuroplastic exercises I found on youtube, they worked.
The way to approach recovery is to take it seriously, basically you need to cut out everything else in life and just focus on improvement, do some research, become informed (remember the NHS methods were found to be not fit for purpose with the ABI Bill). Don't be afraid to look elsewhere. If you can get your brother to start being proactive in solving his issues it would be a good thing. It is rehab in itself and creates motivation. Yes, he will get knocked down and crash psychologically and neurologically but eventually he will become positive and motivated to find a way out. Being positive and motivated and managing crash sequences are more than 50% of the journey. When crashes come embrace them and let go within the dream state, it is part of the recovery process.
Half hour slots of anything, including vosits/chatting /seemingly innocuous things like TV were all I could manage in the first year. Be strict with visitors and perhaps have a printed out calendar with time slots allocated with everyone (including visitors) to see and adhere to.
As Moo196 says do keep a schedule and be strict with visitors and activities. Like you I’m helping my sister recover from a head injury and can relate to the stress you feel. Try to make sure people are aware of how things have to be and why - they might think that as your brother looks normal he is back to his old self. The schedule might help identify triggers and which parts of the day are better for him.
Are you getting any help from an occupational therapist? They can be helpful here and do talk to Headway - they can offer guidance, information and reassurance.
It will gradually get better but you do have to be strict to avoid the boom and bust.
People with bi are usually pretty unaware of the cause etc especially at first and won't notice anything until it is too late. You will start to see the difference - the slower speech, eyes glazing, etc. You may notice before he does.
Rather than trying to find a trigger, perhaps recognize that some activities you think aren't much may be enough.
For example, reading takes a lot of processing, so does watching tv, talking on the phone. Reading and watching tv for example are not resting - they are activities.
For me a lot of activities had to be stopped after a minute or two - not a half hour by any means.
There is this idea of the pomodoro they use in business for efficency -- work 25 minutes, rest 5 - and then every 4th work period rest for 30 minutes. If that is what regular people need, that would be way too much to expect from a person with a bi. (It is a good idea, I use it, just modified to be more realistic for me, and it depends on the activity.)
Resting means no stimulation. Actually laying down in a dimly lit room with eyes closed. (Not reading, playing on phone, or whatever.)
Weighted blankets help some people a lot.
Wearing sun glasses can help, even if it doesn't seem that bright. Get ones that have a top and sides, so light doesn't leak in - like the type made to fit over regular glasses. Also the lenses should be grey rather than amber - grey cuts contrast and the amber gets rid of glare only - though they can help a lot at night when car lights can be a nightmare.
You can also get things to help reduce the level of sound - there are inexpensive ear plugs somewhere like Boots maybe, where there is a little hole in them so you can still hear - they are meant for air travel - they reduce the engine sound but still let you hear. There are some fancier ones meant for musicians - the ones I have have a slider you can move to give you a choice as to how many decibels you reduce the noise.
Sleep is his friend. Sleep is when healing happens. For me I threw out the whole idea of trying to make sure I slept at night and not in the day - if I could sleep, I did.
Having an afternoon nap for 2 or 3 hours is a good thing.
Be aware that changes in the barometric pressure tend to make it harder for people to cope in general - there are all sorts of body processes that auto regulate for that - and for bi people the brain power gets taken up with those and so there is less available. A lot of people have a hard time getting it together, or may feel irritable when the weather changes, for that reason.
If you know he is going to take a 3 hour nap, you may be able to do something for yourself. If he can be left on his own, you can go out and meet a friend or do something and not need to monitor how he is doing. You need a balance.
Sure, he may feel left out but if you have the friend over for 15 minutes at times to say hi and do the odd thing he can manage, that will help. You can talk to him about it.
Just for example, I couldn't even look at a white page with black typing on it without being on the floor with my head in a bucket. So, I used the computer on a tv screen where I could use the contrast and saturation buttons on it to make it less bright and to take the colour out. I found I could read the columns of text more easily and could zoom them the size I wanted.
I also found in VLC player there are sliders to also do this.
There are also lots of premade themes in Firefox, and likely other browers, to set colours and contrast automatically.
I started off watching movies on youtube from the 1940s- because the musicians were mostly off at the war, it was mostly dialog and not much music, and that helped me a lot.
Your brother may find watching moving colourful objects really tiring and not know it.
I played little kids computer games to help rehab my brain, and when I got to where I thought I could handle it I tried Plants vs Zombies and I got so dizzy I couldn't even stand up and I got really dizzy and nauseous.
Everybody's injury and what they can do is different though. And, it depends a lot on how fresh it is. For me anyone under 3 years is still definitely in the fresh category - healing happens the fastest in the first 3 years.
People think "I can do x" because they could before, and then they try it, and can't understand why they can't. Or that they get fatigued.
Anyway I gave a lot of examples, but my main point is if he is crashing often and long he is doing too much. It's really as simple as that.
I hear you groan, how can I cut back more?
Well, it may be a matter of him cutting back, not you.
I have seen an energy list where it gives points on how much a certain task takes. I think Headway will have something similar. It pays to get that. For instance I didn't know talking on the phone was such a heavy drain - it does count as multitasking and is quite a high energy consumer. Anyway, getting the list and having a look at what he is doing may give him a better handle on his energy budget so he doesn't crash as often and as long.
It'll happen anyway because despite our best efforts things happen, or we just want to do x so badly we'll pay the price.
But, the idea of the energy budget does help a lot. And, if you see a day is going to be high energy user, rest more for 2 or 3 days before. It does help.
You can also ask Headway for support ideas for yourself. Families and carer's need it too.
I'll also suggest he is kind to his brain. What do I mean? If you had a friend who wanted to go for coffee with you, but wanted to pick the place every time, and when, and decide how long you were going to be there, and what you were going to have, etc you'd get pretty fed up with them. Part of us tends to treat our brain like that - like some lazy slave that can never be good enough. But, if you realize your brain is your friend, always on your side, doing it's very best - you will be less stressed and also open to your brain saying - ok,had enough now. The attitude can help manage the situation a lot.
He'll have to keep trying things, and see what works and what doesn't. Crashing isn't much of a picnic for sure. It's also really a stinker to adjust to the new energy level and all the changes.
wow THANK YOU SO MUCH for your detailed response ! It is so much appreciated. There’s so much to digest here that I will read again and come back to it.
It’s so difficult to know what activities are causing his crashes because it seems everything does at the moment! But with time and improvement I am sure we’ll work through it.
It’s like there’s 2 brothers - the good day when he’s so with it and cognitively good and then the (more often ) bad days when he’s literally like a zombie. I find the latter so so depressing.
Anyhow I’m keep my chin up and persevering and believing the best for the future
I understand it is hard to see him like that. It's hard for him as well, and he also knows you find it tough and he wont be feeling great about it.
The good news is the version if him in a good day is still in there - a zombie day just means he is tired. He is still in there - and its good for both of you to know that.
It is very easy for bi people to feel useless and get depressed. So then they do too much and have a set back.
Better stop before I write a novel again.
There is a lot to kearn about bi and coping, a lot of things will help. It just takes time.
What Leaf says. Rest before you crash. Otherwise there's a risk of a downward spiral. Work out how long he can do something before he feels tired - it will be different for different activities. 10 minutes for reading , 20 for washing and dressing. ( It never occurred to me that I might need to take a break between washing and dressing.... ) Write it down. ( there's a website about chronic fatigue syndrome / CFS that calls this your 'fatigue envelope'). Call a halt before his threshold is reached. The idea is not to reach the point of feeling tired/ fatigued, but to take a ten minute rest (as Leaf describes) before that point. (Difficult one for all of us to get our heads round - to rest when not tired!). I only first reached that point in lockdown in fact, but it was a revelation that I could actually live in a non exhausted state. Once you've found his basic level of sustainable activity - which is probably a similar level of activity when being badly fatigued, maintain it for a week, then just increase activity by half an hour a week. If half an hour is too much, go back to square one and only increase by 20 minutes a week or even 10 minutes.. This was the advice from the private specialist physio that my second neurologist referred me too - I was on my firm's medical insurance. I was very lucky to get intense coaching and support. (An OT might be able to provide this too, as far as I can work out). What the team all stressed was that you can break the rules if you have something pleasurable to do - and in fact you must do so for your mental wellbeing - so chatting with friends is exempt - but to allow for that to happen by trying to plan in a break beforehand and a couple of days resting and doing less than usual afterwardss. I would have thought a chat with a friend was a really good thing cognitively - and healthy mentally - and I found it was less of a struggle to talk to friends I knew really well than anyone else. (Preferably without music playing in the background - still a significant brain drain!) How quiet is his environment? I found I'd just turned my flat into a quiet, dark cave compared to most people's living space!
Thanks painting. Helpful advice. I will try to stripping right back….although tbh there’s not much to strip back to as he’s pretty fatigued doing very little…..it’s so hard
He had a brain operation. Should have been in hospital a week but it didn’t go to plan. Ended up having 6 more brain ops in 8 weeks. Was on Intensive Care for 5 months. Then rehab unit for a year. All throughout covid so hardly got to see him. In my opinion his brain needs a lot of recovery, hence the massive fatigue. He’s had such a hammering. He’s all there underneath which I’m so grateful for but we hardly get to see this. I believe as the fatigue improves he’ll continue to progress . It’s a waiting game!
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