Just wondering .
How do you feel about rest?
Are you getting enough rest?
Do you feel guilty for having to rest?
Have you found a way to balance rest and activity that works?
Looking forward to the conversation.
Hope you are all having the best evening possible.
Feel Guilty, Rubbish, No Hoper when it's a Glorious sunny day and your fighting/dragging your soul & corpse home. whilst naturally faking to the world it's Business as Normal! Phone off, curtains closed...
Rest & activities is purely random, when the ghost within let's you out, you go! God Help you if it's raining 
Rest after work takes Priority Always. Have to explain to The Few in my Life it's not something I control / or pop a pill ability.
I actually occasionally think of a "sleep-Holiday" ... Mmmm you may be thinking. But the Last time I slept like a baby was in the sunshine / heat of morroco. Yet light sensitive!
Anyhow All you TBI Headway-ers will be up soon / Night Owls nodoubt
I think that's partly what started me thinking..
. We get so few bright sunny days and when we neeeeed to rest we miss out on them and the benefits of a decent dose of vitamin d.
Having to explain to your nearest and dearest!!!!!! You would think that they would have got the message by now.
Sleep well tonight and sweet dreams.
It'll be another wakeful night for me Shirl ; I've a trapped nerve in my neck/shoulder so frightened to get too comfortable and make painful moves !
But after a second sleepless night, if this thing eases I shall sleep without limitations and no guilt whatsoever if/when the time comes ! 😫
Hope you're doing ok m'love........ xx
I hope it comes soon for you Cat.
You seem to be having a tough time.
Sending you a hug Ooo
I'm afraid I'm my own worst enemy. I've always been a really busy person.....by choice....I enjoyed it. But post bi everything is a massive struggle - even stopping doing too many things. A while on now and I get the message.....doing too much ends in tears (lots of them). Guilty. Yes I feel guilty if I sitting down and other people are going things becusse I look fit a a fiddle. I could do physical exercise as long as I liked, no problem, but collapse in a heap after thinking too much....what a state to be in. I never sleep well.....ever. Here I am tonight .....having worried myself into a frenzy about this and that, I remembered to try mindfulness. Gave that up as a bad job after t en minutes. Listened to a long and unexviting radio programme on purpose, but it didn't have the desired effect. Prayed, recited poetry and the words of songs, tried remembering boring things, and finally gave up and for the first time in a very long time (I've been being good -.no electronic devices ar bedtime), I reached for the tablet and popped in to find you here hi to all you sleepless people out there. I really don't think I can get to sleep becusse I can hear (I have hyperacusis) wait for it.....my mattress making minuscule pops each time I breath in and out. I give up. It made me laugh in the end......I don't know why I haven't noticed it before....I started testing it to make sure that's what it was by holding my breath and breathing differently. It's definitely te mattress. Hope you're all having as peaceful a night at possible. Hope you all have quiet mattresses and Wishing you all much rest tomorrow x
Hi Elenor
Yes understanding that difference between exercise and the brain drain that feels like it's done a marathon in just a few minutes.
It doesn't make life easy. But it does get easier when you learn to listen to the signs and rest before you hit the fatigue wall.
Hyperacusis don't you just love it! My favourite one that made me panic for a while is the secondary noise when you turn a light switch on or off.
Hi all.
Yep it's a battle. Can't sleep at night then try not to fall asleep the following day so that you can sleep that night.
Although sat in the sun having a nap is wonderful.... I think. At moment sat in the rain is nit so great.
It is a balancing act managing fatigue and pain so you can plan to do a task. Then planning for after the task to recover. These are the things only close loved ones see and the genre public fail to understand when making appointments.
Had a hospital receptionist try and be helpful by booking all my appointments on the same day. Oh what fun apart from falling asleep on the toilet and triggering a very panicked wife.
Needless to say I missed my afternoon appointments and have never done this again.
I try now and sleep when I can and let my body tell me when I am tired.
Pax
Good to hear that you are listening to your brain/body telling you when you need rest.
Hope the sun shines soon for you.
Rest? I am young enough to still need to work full-time and I'm the mother of two youngsters (13 and 9) who simply don't understand that sometimes I feel exhausted after the simplest of things. Staple that to a lorry-driver husband who works long hours and I really don't feel I have a choice but to keep going with long days myself. I do try to relax and rest when I can. But for now this is now it is.
I can't imagine having kids of any age and coping.
I hope that you are at least getting really good sleep at night.
I feel rest is critical to create any quality of life at all. I could probably use more rest. No guilt never comes into the picture for me, it is more FRUSTRATION than anything. Balance that works - no, not yet anyway.
Totally agree Sca rest is vital.
I am glad you don't feel guilty but what is your frustration?
Always getting fatigued so fast and of course the big one - not being able to do what I used to able to and accepting the now instead.
Oh dear you lot are going to hate me. Sleep is the only very real pleasure I have gained since being ill Prior to encephalitis I was a very bad sleeper-always wandering about at 3 inthe morning stressing that I would be unfit for work in afew hours time. Since my illness I hit the pillow and wake up when the birds are havingtheir secondmorning chorus. Sorry folks - just thought i would give you an alternative viewpoint. if it is any consolation I no longer remember any of my dreams and that is a realshame because I could literally write a bloody good novel with what I used to dream -but sadly no more -I recall nothing.
Hi.
I don't think anyone will hate you for being able to sleep soundly. Maybe a little green eyed though.
About not remembering dreams I don't know if this helps but when I started taking high dose Omega oils and had been taking them for a few months I started remembering some.
I'm the same since anerysm rupture last year I hit the pillow & I sleep 10/12 hours straight through & don't here anything. Freaks me out a bit as I sleep through anything lol, don't sleep in the day though but need plenty rest before & after I do anything. I realise that im not the same person i was before my BI (I don't even feel like me) & learning to manage fatigue is just one many challenges the 'new' me faces. Goodnight all, time to hit the pillow, this is late night for me & 10 or 12 hours won't matter. I will suffer for it in dayo or 2
I work and so I have to fit around that, I do struggle with tiredness and do sleep or at least stop, and frankly end up not doing things since i'm so exhausted that there is little point.
If I have a big event coming I quite often make sure I have a day or two after booked off since I will be good for nothing for days after!
I have reduced my hours at work, but it is unsociable hours so I am pondering if I should look at other jobs?
The other thing is I have learnt to say no, or at least that can wait I no longer have limitless energy and if I do do much It creates a ripple effect for days.
Does what you want or how you feel really come into the equation? If your brain/body is going to crash out there's not a thing you can do to stop it. Postpone it using strategies maybe, but then it's just worse when it hits.
PCS Update
How do you handle a 'good' day?
what do you do when all you want is a cuddle from someone who understands what you are going through at a time when you are 'in bits' 
Let's put on an exhibition!?
SAH - Waiting for that "day"
