Passing Time with a TBI

[IanAG]

How do you pass the time in the early days post tbi? I find many things too stimulating and tire very easily....reading, even watching gentle tv programmes. But I can’t spend all day just lying on the couch doing nothing but allowing my thoughts to run free and turn to depression again. I’m at a loss. Ian.

[Kirk5w7]

You know Ian ,

That was and still is the problem for me. So i fill it with puzzles and jigsaw, jigsaws were a life saver helped my brain in its rewiring, i couldnt make head nor tail of them at first and still struggle with a new one but give it a week of little and often and your brain will make sense of them. I do 1000 piece wasgij now( no picture) and the sense of achievement on completion is brilliant.

Look for a hobby you can pick up and put down, how about marquetry?

Think out of the box xxx

Good luck

Janet x

[IanAG in reply to Kirk5w7]

Do you watch much tv Janet?

[Kirk5w7 in reply to IanAG]

Sorry Isn i was on a virgin train to london aand i wasnt paying for wifi and my phones personal hot spot didnt work.

When im in my tv is on all the time, i only switch it off when im reading or listening to audio book

Janet x

[IanAG in reply to Kirk5w7]

Thanks Janet...hope you had a good trip. Unfortunately I’m getting quite bad nerve pain behind my eyes so it makes doing anything visual difficult. I still seem to spend a lot of time resting with my eyes closed. I guess all of our symptoms are different.

Ian

[Kirk5w7 in reply to IanAG]

Have you seen a neurological gist about that one ain? When i left rehab they said all they could offer me was amytryptilene which ive since tried, to no avail.

However that was over 5 years ago, i saw the rehab neurologist just before xmas and he has prescribed me pregabalin for my pressure headaches/ migraines. This is brilliant not a headache in sight and I see better too. He said if this didnt work there were other medications he could try.

I used to sit with my eyes closed alot too, it cuts out the visual stimulus to your brain, you cant shut out the audio stimulus without headphones, and ive tried them too!, it used to help rest my brain between bouts of action!

Janet xx

[sealiphone]

For the first 3 - 4 months nothing spent it in a daze, often I'd not moved whilst my wife was at work, forgot to eat etc. sometimes I'd just stay in bed

Then my wife decided that wasn't good, so she insisted I leave the house when she went to work and I had to go to the leisure center and swim, tough love I think it's called.

Can't say it changed anything in terms of being in a permanent daze but it helped because I had a meal at the center and it felt good to actually do something.

The other thing I was forced to do was go for walks, although I'd often have no idea where I'd been.

[RogerCMerriman]

very early days I watched gentle tv, ie BBC 4 sort of stuff, which I often fell asleep too! I did get frustrated and the temptation is too push too hard, I bullied my wife that i was fine to go christmas shopping with her, in Kingston, this worked as well as you might imagine!

things that did work was gentle exercise, wandering I used to take the train with the bike and roll home etc.

[Plenty]

Exercise. Its alway recommended for health and fitness for so many reasons. There is some good information on the NHS website.

If possible some can start with a daily walk. Done regularly can help body and mind. Stay positive everyone.

[Kirk5w7 in reply to Plenty]

Hi Plunty, i like swimming, you cant fall over in the pool and im ok on a treadmill, you can hold on.

Otherwise my walking speed is a bit slow some days.

Janet x

[cat3]

Ian, if you can walk (even in this foul weather) it'll lift your spirits and create a feeling of wellbeing. My brain can't summon up the correct terminology today, but I know that the chemicals created from exercise, and the negative Ions we absorb when walking outdoors, have an immediate therapeutic effect and are beneficial to healing.

Like you, I can lounge about for too long, which is depressing and disappointing, but, despite poor mobility, once I get my sorry backside up and out of the house for 20-30 minutes I actually feel my mood change and WANT to do more.

I do a crossword every night, partly to keep my brain exercised & improve my word-recall, but also to create a 'quiet time' away from screens before bed. (I admit to watching too much Netfix on my laptop).

But I feel strongly about getting out of the house each day. This morning I really didn't want to budge but had a GP appointment. Afterwards I felt so much more energised.

Good luck in finding your own particular form of motivation Ian. Cat x

[paxo05]

It may sound simple but a gentle hobby. Like has been mentioned can you walk if so can you get to a local park. Even if you can't walk far just being in the fresh air can lift your mood.

Don't over stretch yourself but keep it simple. No deep books but light articles. Keep your mind ticking without taxing your mind.

Having said this if I knew the answer I would right a book and retire to the sun.

It is a fine balance between fatigue and keeping active.

Pax

[steve55]

ianag youre not tired youre fatigued, there is a difference. ok lets tackle that first.

its suggested if you do something physical or needs heavy concentration like driving, then you relax until the following afternoon. this means taking part in a hobby or starting a new one or if youre like me, have several things on the go, so when you lose concentration on one activity you go onto the next.

dont forget your little cat naps in between.

welcome

steve

[fredikins]

Online solitaire passes a couple hours I find, though be careful its mildly addictive, and a reasonably challenging crossword book was my best friend early on in rehab, but as has been stated by others walking if you can do it Ian is probably the most beneficial activity for all, brain injured or 'normal', I only wish I had stronger legs, all the best mate, Fred.

[cat3 in reply to fredikins]

Blimey fred, I forgot to mention online Solitaire ! It's a great go-to when all else fails. I keep beating my own record ; now down to 1min-40secs 😄 ! xx

[fredikins in reply to cat3]

I'm more of a 'moves' man, see if you can beat 115.

[cat3 in reply to fredikins]

WOT !! ....................which site ?

I'm on World of Solitaire - Klondike turn 3.

It's taken me 5 years to get down from 2-30 ................ 😭

[fredikins in reply to cat3]

yeah just checked Cat its Klondike, I may have misremembered as I have gotten no where near that since, might have been 215.

[cat3 in reply to fredikins]

Phew........ x

[moo196]

Hi - brief reply as I have to get to work -

Cooking was a life saver - could read and follow a recipe ...

Wish someone hd suggested colouring books - you can't go "wrong" and it's relaxing

I def couldn't watch/follow TV - someone did suggest talking books on CD - local library loaned for free - can easily reset to where you left off - or start over again if you forget ( as lots of us with BI do !)

Any other catalogues / magazines of your interests ? gardening/sport/stamps/history - just something to pick up /put down.

Yoga in 20 minute chunks was also good

[IanAG]

Thanks to everyone for your replies, they have all helped me.....can’t reply individually as too draining on me.

I think I’m realising just how poorly I am even ten months after the poisoning event, and how different everyone’s brain injury affects them. Maybe I’ve been living in denial?

I have hypoxic brain damage and from what I’m learning I’m ‘lucky’ I’m not in a vegetative state. I find the slightest stimulation taxing, although I have read gentle books and listened to audio books, and been building Lego.

Unfortunately I have chronic fatigue too so exercise is out of the window.

Clinically speaking, I think I’m buggered.

Off to see GP next week to get a neurologist referral hopefully.

[NightBird in reply to IanAG]

I also have visual issues, though it's not pain in my case, just lack of comprehension of the material I see.

Talking books are a good suggestion. There is a site called Librivox where you can download free audio versions of classic literature and poetry, some of which are very good. If you want British readers, Ruth Golding is good and she has a list of others here:

golding.wordpress.com/home/...

I also recommend podcasts. BBC radio has some, but this is the internet so you'll also find all kinds of international stuff. YouTube is full of indie TV channels run by one or two people on no money, which means there are a lot of talking head and studio interview shows. So you can shut your eyes and not miss much.

[razyheath43]

Box sets and snacks its the only way to go! you will feel better over time

[IanAG]

I’m determined though to get outside once the weather warms up a bit.....I can use a wheelchair.....and just sitting there in nature always lifts my spirits.

[sealiphone]

There's a difference between physical and mental fatigue, at least for me.

As my fatigue was acute I attended a TBI course, led by the OT and Neuropsychologist, where we discussed strategies, diet and exercise were highlighted as positive things to do.

By that time I'd already moved on from swimming to attending the gym.

The physical was important for me, as I lost 5 stone during the 5 first weeks following my TBI, although as I ate 3 meals each time the food came to the ward, so 3 stone when I was discharged.

Some people believe exercise helps with depression and lethargy, I think anything you do that stops you just watching TV helps.

Exercise also helps you return to your former self by building strength and resilience, for me that was a positive goal achieved, in fact I'm in much better shape now than pre TBI.

[lcd8]

I tried some adult colouring. Or gentle balance exercises at home. Perhaps try listening to books being read on the radio. Try to divide the days into small chunks that allow you to rest little and often. Get as much rest as your body tells you it needs - it really will help your recovery.

[moo196 in reply to lcd8]

Yes, I used to write myself a timetable set in half hour chunks... To make sure I knew what I should be doing.... And to make sure I didn't over do anything.

Good idea