Three choices in life; Give up, Give in or Give all you've got!!

tunathe_cat

Hi We are plodding along .. I just read this and found it interesting hope it does not offend. Andrea x

Lost & Found: What Brain Injury Survivors Want You to Know

I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.

My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.

I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!

If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.

Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.

Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.

Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.

Please have patience with my memory. Know that not remembering does not mean that I don’t care.

Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.

If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.

If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)

You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.

If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)

If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.

We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.

Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Everything single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without Hope.

please-let-me-be-lucky

Andrea, that is just perfect! DH could have written that (well, he couldn't but you know what I mean!). No offence taken at all, it's a useful tool to raise awareness thank you Xx

Pooh, I love Alnwick Castle, especially for the Harry Potter days, but usually only go if there is a Group0n deal as it's so expensive! I think they do a 'pay once visit all year' deal, but paying full price even once is dear. Hope you enjoyed your day there.

Lilt, thank you for your positivity and reminding me to look on the bright side. DH has had multiple waves today and is more vague than normal, but no full seizure so fingers crossed.

Lovely neighbour knocked and offered me his clubcard as he had 18p per litre diesel savings on there and he doesn't drive. Only downside was they expired today so I had to spend an unbudgetted amount as I wouldn't normally fill up until the end of the week. Still made a good saving though, even if it did spoil my NSD! On that note though, I've had 6 NSDs in May which isn't bad considering it's been half term too.

Been clearing out kitchen cupboards and filled a black bag for the tip. It's amazing how many tupperware boxes lose their lids and vice versa!! Got rid of all the baby cups etc and was ruthless with other stuff - if it hasn't been used in the last 12 months it went! Have put the better stuff in the charity shop pile.

Also, few hours early, but I did the debt calculation for the 1st of the month. I now owe £1955 so sub £2k :j

Fizzy11

I really hope OH is ok & the vagueness comes to nothing. The watching & dreading is so exhausting.

You positivity is an inspiration.

Eager_Elephant

Tuna, that is brilliant - although I think I know my husband's condition it's hard to put into words to other people. I will keep this and share it with others.

PLMBL, how lovely of your neighbour to offer you his money off petrol.

Great news on the sub 2k - you are brilliant paying off this debt despite your limited income. I could definitely take a leaf out of your book

liltdiddylilt

Tuna what a lovely post!!!

Lucky - bless your neighbour, think of it as a day you won't need to spend in June and I am glad DH hasn't gone to full seizure...

CONGRATULATIONS!!! :j:j:j:j:j on being sub 2k!!!! Home stretch!! xxxx

please-let-me-be-lucky

Thank you Fizzy, EE and Lilty. Don't know what I'd do without you all on here!

DH still having waves . He had his night time tablets an hour ago (he doesn't normally have them until 10pm), in the hope it would calm the mini seizures, but he has still had a couple since then.

liltdiddylilt

Early bedtime Lucky... His brain (and yours) need a rest methinks..

Will be thinking of you and sending all my best thoughts your way for a peaceful night. Tuesday is a mere 26 and a bit hours away. xxx

please-let-me-be-lucky

Thanks Lilt. No seizure through the night . He was very jerky though and, after the discussion with SA the other day, I made a point of sitting up and watching him. Like SA noticed with Mr SA, it is mainly his hands that are jerking, very similar to what happens during a partial seizure, and more often it's his left hand which is the side most affected when he has a full seizure. It's all definitely connected.

He's still fast asleep (DS2 has had me up an hour already ), so will see what he is like when he wakes.

DS2 is back to school today, DS1 goes back tomorrow as he has a teacher training day today. The 7 week countdown to summer begins!

beanielou

Keep plodding xx
Fab news on sub 2k :j :j

Sun_Addict

Great news on being sub £2k What an interesting piece from tuna and so thought provoking. Mr SA suffers with his left side too as the bleed was on the right side. And how refreshing to hear a mum say she's looking forward to the school holidays