I continue to have real problems with understanding that when my brain feel like it wants to meltdown because I've made it work what it needs is water and rest n o t fatty and/or sugary foods.
This is the corny brainwave part........I bought a pack of gold stars and intend to give myself one each day I manage to stay balanced.
Here's hoping that it works!
We're all different! Mine needs food, sugar if must keep going (eg when out or if forgotten to eat and need it FAST) and rest/sleep/silence and DARK.
I drink lots of water ALL the time,my fave drink, love it. And when hot fizzy water is DELICIOUS! And sometimes my body says need something fruity and mix of orange/other juice and fizzy water = YUM.
If not stressed and in quiet nice place and no worries = meltdowns very rare. They're from overload theefore NO overload = NO meltdowns, usually.
But then the random stuff like last night = awake 3.30am, dozed til 4.30, couldn't sleep, took another tab = didn't work = up 5.30 or was it 6? why? Was VERY stressed and fretting car and number plates, housing, FEAR, letters and all the stuff.
As I have been for WAY too LONG now. Not me, HATE it. Attacks. A real killer. Eye opener. Shocking how BAD I feel. Could never have imagined - nor would WANT to.
I never chose ANY of it.
Hi muddled,
Sorry to hear today was a bad day. I had one of these on Thursday and it sucked 
I usually sleep well with the tablets I am on, but went to bed with horrible scenarios playing in my head, which would not switch off and went round and round and getting worse and worse. I now realise how silly they were, but at the time I would have done anything to make them stop. It has got better and I felt good today. I hope tomorrow will be better for you too, keeping everything crossed for you 
Kim
Thanks Kim. But even WORSE today, feel like am having complete mental breakdown. Just read all latest posts on here but straight after can't remember what read so did again, still can't so do again?
My vision when like I am now = AWFUL, far worse and even more cack-handed and shaky. Been trying to tell docs about all this for YEARS, out of hope now. errm, TRY AGAIN people say and like the gullible dimwit I am I do. But get fobbed off and back to social workers who do ZILCH = over and over again.
I HATE myself. HATE them for NOT helping. HATE how stupidI am. HATE where I live but can't change it. Try CBT = change how I look at things? I try to be positive but after YEARS (almost a decade now) and things WORSE = HOW to stay positive/hopeful? Try but I can't. My fault? I don't think so but am constantly told it IS.
BAD burning in forehead and had several bad flutters in right ear today, get them so rarely now, did. And the weird numbness in forehead now's turned to BURNING = over last few weeks (or months?).
People keep saying take little steps but I take one forwards ten slide back 2. SO hard to describe this utter desolation, loneliness and hopelessness. SO shocking to me. SO much further away from who I was. Never get back now, lost. ?
So like the dumbo I am = yet ANOTHER appointment with GP moro. SO sick of docs, seen SO many. Hope for moro? Dunno. I shouldn't HAVE to keep trying, KEEP try explain, nobody should. Completely EXHAUSTED with this terrible merry-go-round.
Each offers me 3 'choices' none of which are what I NEED. SO stupid. I'm told to find solutions but I can't: brain SO bad now and out of stamina. Made myself eat lunch: feel sick, vision awful, BAD pain, guts feel bad.
Don't want to travel: want to find safe OK place to live and SETTLE, try recover. But not allowed. Feel VERY VERY ill.
Tried antidepresants = didn't work and made me SO ill. Tablets don't work. Diet = I try to eat well and am PROUD of how well I do. But would SO like a kitchen where can do it more easily and can make OVEN things, boil pasta, SICK of micro/salads/fruit/cereal/yog.
Couldn't even write properly this morning and can't talk properly. I vary SO much. This stress/overload makes me FAR worse but nobody believes me or helps how I NEED/WANT.
People say 'break free' but can't do that and at mo NEED peace, rest, QUIET and time to snuggle in. Spring here and better weather (phew) but black in my soul (in ME) and after years of hope = none left, NO light at end of tunnel.
My fault? How I feel isn't real or allowed? I know it isn't 'helpful' but it's how I FEEL and the evidence of yet MORE injuries where I live... ahh but docs/all say not true, I got NO proof for anything.
Labelled a LIAR for nearly a decade. Why is it for ME to prove I'm telling the truth? I can't. Why isn't it for DOCS/social workers to prove I'm a LIAR? But they can and do and me against all them = I CAN'T.
Even lost my fight/arguing. SO tired and broken.
Everything feels FAKE and surreal but already TOLD mental health that and DUNPED from them for my 'behaviour' = not MY fault.
NOT a danger to myself but where I live IS a danger to me and NO/inappropriate healthcare is too. NO help/support = killing me. Afraid will have heart attack, BAD 2 sudden pains other day but told all in my head.
Had ECGs, nobody tells me what they show (if anything abnormal?) and anyway that too varies, all of me does.
Can't face any more docs coz they refuse to answer my Qs and I can't MAKE them. They don't examine me properly but nobody believes that. They don't write what I say, they change my words. Need ONE good doc or advocate to QUESTION for me, PROPERLY. But can't get ANYONE, and fail eaxh time I try to do it coz brain/me too stupid now, broken. HATE how I am but can't change me, tried SO hard.
Hi Random, Glad you chose gold stars and not silver ones! LoL. I think its a good idea. Any written reminders give focus to thought, intention and provide evidence of the outputs/outcomes of planned activities. I still write and record stuff today which helps to understand healing. (It is a skill of a good project manager too to keep a daily diary of notable events). The more I read back how bad I was, the better perspective I got as to how far I've come with healing which gives me confidence. Much of it was over emotional babble writing letters to myself about childhood issues which seemed like yesterday - how memory tricks you! By recording food, I found a pattern of foods which would exacerbate digestion and thus brain function. I found fruit - natural sugar - was the reward I wanted after overdoing it. Also had raw cacao powder for the magnesium and anti-oxidant properties, would put it with dates and water. Lovely natural sugar rush and full of iron and nutrients.
Last year after speaking to a chap who had been in a coma for a month and was now running his own successful business, he shared that he had a dog. When he had overdone it, had a headache, he would walk the dog, then go to bed. I jumped up and down and said, I do that too (without the dog). When I have a severe headache, I get the warm coat and hat on, and go for a 15 min walk. The fresh air and movement often cleared intense pain leaving the dull ache, light enough to go off to sleep with.
Had days where I would reach for fish and chips or chocolate then go straight to bed on a full stomach. Have to say by choice, I wouldn't do it now. When you are partially aware, in pain and fuzzy, it matters not. Just get through the day.
Glad you sound like you are able to make some choices and for that, you must be happy that you have set a new goal of obtaining and maintaining balance each day! Well done! I too made this pact. It meant disappointing myself and others to keep each day more or less boring! Once I was officially aware I was bored and not numb, zonked or dull, I chose to do gardening, 5-10 mins at a time and built it up. Thing is, if you are enjoying something as simple as weeding, you don't notice the time. You ache after, but the sense of achievement is enormous and motivating. Plus the sound of birds, wind in the trees, crackling of dried leaves, being with plants is so nurturing.
Best.
Thanks recoveringh.
I am one of those people who has to have a target.....no matter how small.
I sort of gave up on my diary it was soooo very boring get up & washed, rest, dress, rest, breakfast, rest etc etc.
The timetable the OT helped me set up is now on it's 9th incarnation and lives on my freezer. Most recently adjusted to allow forum time.
Recently my need to feel useful/do something constructive has been gnawing at me.
I began learning Braille when I thought I would go blind ( misunderstanding between me and specialist who's first language isn't English). When that was resolved and I told the group I was invited to stay and help newer people. Result!!!
Now using the yearly diary to highlight ups and downs.
PS it had to be gold stars.....only the best for what will be (for me) a major achievement. Lol
Hi randomphantoms,
Thank you for starting this thread. It is such a relief to realise that I am not the only one who struggles daily with the 'I'm feeling useless' because I can no longer do what I want to do.
Jobs that used to take me minutes can now take over an hour and then cost me dearly with fatigue for a long time after.
'Tother day I was having a 'good day' and my wife and I started to clear the garden and she kept telling me to stop and rest but feeling good because a) I was on a 'good day' and b) because I felt I was really achieving something worth while I insisted on ploughing on with things then very much regretted it later and took me two days to recover fully.
My neuropsyc gave me a diary/time sheet at last visit to fill in to log activities and fatigue and whilst enlightening in the info I've gain, pretty disheartening in my capabilities. Also don't think se'll be too impressed with my 'pushing through' to get stuff done instead of following her advice 'stop BEFORE you're tired'. How am I know I'm tired till I get there!
I Like the idea of gold stars, especially if they are made from krugerands 
Stay well
Sporan
I know what you mean sporan. It took me what seemed like forever to realise that rest is not just important it is critical.
Here's a question for you. Would you rather it take a week (in small amounts) to do something you used to be able to do in an afternoon but still be able to function or would you rather go for it, get it done and not only lose days or more to recovery but put your poor wife through the pain of watching?
Not taking the rest you need is, to my mind, the most selfish thing we can do.
I kept telling my OT that I felt like I was being lazy. So much I needed to do but I just couldn't do it without making myself a lot worse.
Be patient with yourself please.
Hi randomphantoms
Thank you for your reply and it sums up almost word for word the dicussion I had at my last neuropsyc session.
I told her I felt useless and worthless. Just plain lazy.
She very kindly explained how with brain issues it's very common to tire so much easier and asked would I feel the same if I was in a wheel chair and I said no she then asked what the difference was and my thoughts were they've got real problems like no legs or arms and there were people out there far worse off than me.
Her reply was that it may well be the case they are less mobile but that just because it can't be seen the disabilty that I have because of the brain problems I have are no less.
Told me it was like having a dodgy battery. The old one could be fully rechared, last for days and get recharged really quickly where as now my battery will never be full, discharge more quickly and take much longer to re-charge.
The thing is up until this all started from the time I left school at 16 I've always worked long hours.
When I left school, at 16 (I'm now 60) I was an apprentice motor mechanic and worked 8:30-18:00 Mon - Fri, 8:00 to 13:00 Saturday and would go in 19:00 - 23:00 Mon-Thurs working on forecourt and when I fell ill I was working 60+ hours a week over 5 days with random start and finishes, one day 2am start next 7am start. Plus I was a proffessional driver of 44 tonne vehicles, now I'm not even allowed to ride a moped!
Having, till now, never been unemployed to go from stupid hours to zero hours and struggling to cope even with some houshold tasks is really hard and frustrating, even 3 years in!
Thankfully support from others, like yourself, on this site has been a lifeline.
Once again many thanks.
Sporan AKA Geoff
Hi sporan aka Geoff
Thanks a lot and extra thanks for understanding what I meant.
I know I vary from rambling to brutally blunt but can't help it. Thanks again.
in some ways it would be better/easier if bi came with memory loss of all the things that made us who we were pretty bi .
Failing that if we can learn to draw a line under the me I was and open up to new possibilities it makes life a lot more bearable.
I know that it can be sooooo difficult for those around us to understand how tiring things can be especially socialising with friends or family.
the analogy I was given was..... You used to have a 10 gallon petrol tank and now it is more like 2. Try to do much or go far with that.
Love to you and "the wife"
MEGA MASSIVE RESULT
Today met with OT who whole heartedly approves of my corny brainwave and as recoveringh said anything that acts as a reminder/incentive is OK.
tings priceeded and I have been discharged with the proviso that if things change(by that I mean get worse) all I have to do is ring gp and get reffered back.
my coping strategies do work for me.
Hoping that everyone has had something good happen today.
From one very happy camper. ♥♥♥. Hey look who found bits to add.
Update. Managed to give myself my first gold star last night.
Have had a visitor all over Easter who insisted on "treating" me .
Onward an upward
F***ing pip
can it be worse?
One of my Off Days
Confusion
Feel like a failure as a mum :(
