Here I still am. Can't switch off. Reading other people's posts I'm wondering if my behaviour might be called manic but I don't think so. When I'm totally over fatigued I tend to go and find something else to do (which I know is wrong and only going to make matters worse), but it's the only thing that stops me feeling so bad. Still tearful half the time one year on, and despite all the stuff going on around me I'm not depressed at all so I don't want to go down the 'take some of these they'll make you feel better' route. Perhaps I've just realised that this is it? Just sometimes seems that it's all one big mess,,but I think that sums it up for lots of people. Trying to focus on the positives as always, and not to act like such a wimp after all I've been through to get this far. I'd like to thank all you kind people who have been so supportive all these months. Knowing that someone else understands has been brilliant in stopping feelings of isolation. Family soon get back to normal around you and forget your not very well, especially once you start coping with some things yourself. It seems to be a common problem. Hope you're all getting along as best you can and keep going strong. The dawn chorus has just started outside my window so life isnt so bad afterall. The most cheerful sound at 5:30 am. wonder what they're all chatting about.
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Elenor3
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Thank you - I'm sure that's exactly right. Certainly have had the lying on the floor howling every ten minutes stage and thank goodness that's passed. It seems you're right - I'm entering the 'I think I might have a mind of my own and I'm not doing as I'm told anymore' phase. The main problem is realising what's happening.....it's just exhausting - every day is climbing Everest. The thoght of breaks and rest is so appealing but impossible. Mustn't get to sorry for myself - so many people are in far worse situations. I yhibk I had a bad case of middle of the night itis. Up and at it now . x
Hi Eleanor,
Do you think the clue is when you say you are 'over fatigued'. Maybe you are trying to do to much too soon?
If you aren't able to sleep at night, can you have a few cat naps during the day? I know everyone says that isn't a good idea as you won't sleep at night by doing this, but if you aren't sleeping at night anyway.......
Be kinder to yourself, take small steps instead of big ones. Try to do a bit less. Your brain needs time to properly recover and then you can take stock of how you are for the future. Don't beat yourself up over it. Families find it hard to understand when you look 'normal' and don't have an illness anyone can see. Have you downloaded the material from Headway about bi to show your family to help them understand that you still have issues and need a bit of extra help and tlc.
Thanks yes so true - trying to be all things to all people when I'm not even up to being me to myself. Just having a blip x
Hi Eleanor how tour feeling is natural its just that the doctors don't mention that we will have to cope with grief. It overwhelms you, everything you knew and built up, everything you could do with ease is now a challenge or not possible. It can feel like you've been set in concrete and you can't move, while your watching everyone else getting on with life. I've felt so much isolation, and an incredible feeling of loneliness. So through my doctor I was referred to a trauma therapist, and along with relaxation techniques it helps me. It could be something you would benefit from as well, and you always have us too x
I've had a neuro apt this week and that's exactly what he said. Grieving for what should have been - and what used to be. Admittedly I've been feeling shocked at how bad I've been this week when I thoght thgs had been improving and I expect that's just it. It's just disheartening going backwards. Isolation is the exact word I should have used. Thank you for your reply....seems I'm not alone x
Your not on your own Elenor, we have all had to grieve for someone we have lost. But where do you start when your grieving for yourself and what you've lost. I made enquiries with different grief counsellors to see if they could help. But each of them said we've had others enquire but its not something we deal with. So I felt stuck, I felt like their was a huge blockage inside me that I just wanted to get rid of. Your on a roller coaster with emotions the frustration and anger and then the tears. I have cried my eyes out, and felt isolated and invisible. Its the worst feeling in the world, and your family and friends can never really understand what your going through. With me I've had so many people disappear, my oldest friends response when I said people have disappeared was that I had to understand how difficult it was for others to handle my condition. Its so easy for people to just see you as a medical condition. I actually think that people thought I was going to moan if they spoke to me or saw me. But all I wanted was to have a laugh and a chat.
Being on this forum makes me feel I belong somewhere, that the problems I'm experiencing others are coping with as well. So Elenor you always have someone who is there for you, and understands you.
Hello dear Elenor. 'One year on' is a very telling remark ! It's when so many people feel it's time they were seeing significant improvements.......... but are getting only that 'plateau' feeling. I know we all hope that time will come to our rescue with signs of progress but, when nothing's changed, it can be hard to admit.
We both know you're someone with more than her fair share of demands, quite apart from the brain injury, yet you're determined to keep on pushing yourself to (and beyond ?) your limits. Perhaps you need all the activity to distract you from more serious problems, and to silence your thoughts.
But we are who we are and, with your work ethic, you're unlikely to slow things down anytime soon. I just hope other aspects of your life can improve to give you some peace of mind.
Thank you Jules - yes indeed. A better nights sleep last night was good. Only a couple of things to do today is also good. Middle of the night is probably the hardest time to stop negative thinking when you're tired out. Hope you're doing ok today x
Hi Elenor a year ago which would've also been a year in for me post stroke, your post could've been written by me. I particularly had to smile in sympathy at your comment about finding something else to do when fatigue hits. I thought there was only me who did that. It's weird you know you should rest but you can't. As for everything seeming a mess, the only way i could get my life back on track was and is lots of routine and repetition especially on work days it uses less brain power. I hope you will come to find that things do improve as they have for me and i wish you all the best x
Thank you Rachel. I've reaslised from reading the replies that I'm not alone with this. I thoght it was just me. And how weird to know you shouldn't be doing sonething and still go and do it. I can't understand myself. I've read the things I've been given about the importance of resting and the effect of doing too much and still I go and do too many things. There's no sense in it and I know that so I know I should stop. It's stupid. I even feel cross with myself. Trying very hard to take it easier today and hopefully tomorrow as well. Hope you have a good week. x
Hi again Elenor I find with fatigue that it's almost too 'painful' to rest and try and sleep it off sometimes particularly when the fatigue is bad. There have been times when i've gone to bed with fatigue and still woken up with it even after several hours sleep. I tend to find doing something else not too taxing as a distraction is what works best for me. Try not to be hard on yourself you do find a way of managing things. xx
Hello Elenor3 , I empathise with you feeling tired but unable to switch your mind off. It seems ironic that the more fatigued I am, the more my mind races & won't allow me to rest. I refer to such times as me being 'tired but wired'; too drained to sit up & too mentally stimulated to relax or calm myself (I do get very anxious & jittery during such episodes). They can occur at any time, but always occur after direct sensory overload / stimulus (hospital appointments, a trip to a supermarket, time with a chatterbox etc etc).
Even ten years on struggle knowing my life isn't the same & i can't cope with situations & environments others take for granted. Grieving for loss of self & the person you were is very difficult & a very personal journey. Looking back, the Rehab teams have told me countless times I need to grieve who I was & accept she is gone, but, no one offers guidance on how to do so. As you say, many grief counsellors focus on other & more straight forward aspects of grief. Perhaps this is a topic headwayuk could ask for opinions on & consider a full feature on?
Thank you - yes a better night last night and things look different. It's a very odd place to be in as you say. Feeling uncomfortable in you're own skin is very strange. Thinking you know what's what but realising that things are not what they seem makes me feel uneasy. Waitin for the miraculous recovery to take place - very strange. Thank you for your kind message and reassurance. x
As you may have seen, we're planning a campaign this year called 'A New Me', which looks at the way people have adapted to life after brain injury and built a new life and sense of self. Of course this is hugely influenced by the ability to actually move forward, which is something that people often need a lot of support to do.
I think exploring this side of things would be very useful, and it's clear that it's something that's often overlooked.
I'll have a chat to my colleagues and we'll look to put something together - watch this space!
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The most cheerful sound at 5:30 am. wonder what they're all chatting about. 
Feeling at a dead end.
2 weeks off work
brain
Ongoing problems
