Blah, blah, blah.

[Matt2584]

Hi folks,

Well, yesterday was a pretty interesting day for me.

A couple of days in the week I like to get out of the house by myself, wander off somewhere and do my own thing. Maybe go into a café and have a bite to eat and a coffee (or even go to a few cafés) or do a little shopping.

It gets me out of the house and meeting people and doing things at my own pace which I love doing cos I have been pretty much cooked up with my parents for too long.

Anyhow, yesterday I went over to Portsmouth which requires getting on a ferry and got the bus into Southsea. I went into a shop and got a few things then went into a café for a drink.

Got another bus and then walked off to another café for a bite to eat. After, I left then walked back to the bus stop and got on the bus. About 1 or 2 stops later I realised I never had my carrier bag with my shopping!

I got off the bus, crossed the road, got the bus again and went back to the café, they had my bag and everything was in it still. I went back to the bus stop got the bus and went home again.

Once I got to the ferry terminal, the ferry was in and I was wondering if I will be able to walk down the path in time to get on the ferry. The guy let me on, I was the last passenger. There wasn’t a lot of time to get my ticket out but he let me on anyway, let me sit down and he sorted out my ticket after, which was nice of him.

I find when I am out and about on my own that people can be extra friendly/kind with me, especially staff.

Once I got home, I told my parents about my story and the first thing my dad said was “You’ll have to get into a habit of checking you’ve got everything before you leave a café”.

Something you don’t really wanna hear, right?

I said right after that it is very different for me.

Brain injury is complex, it fluctuates. Sometimes I could be on the ball, other days I might not be. He doesn’t seem to take any of this into account.

And what he said makes it sound like programming a robot to do or say certain things. Well, I’m not a robot and my brain is damaged.

Anyway, I got him back today.

I wandered off elsewhere today but before I left the house the door was locked. So when I grabbed the handle of the front door, it wouldn’t budge and so I had to turn around, get the key, unlock the door, then leave, adding to the time. So when I started walking down the road the bus drove by, I was late for my bus and if my dad had unlocked the door in the morning (like he should) then I most probably would have caught that bus.

So I was a bit annoyed about that. But when I got back home I said to him...

“You’ll have to get into a habit of unlocking the door in the mornings so I won’t be late for the bus”.

I don’t think he was really pleased that I said that and then he said “So it was my fault was it” and I said “yep”.

[Marnie22]

Enjoyed your post a lot! The end gave me a good laugh!

I understand exactly what you mean. It's so easy for people to think a brain injured person just needs to try a bit harder or concentrate more. Also it is nearly impossible for me to get a new habit established. I was once speaking to someone I know and I remarked that I lose things all the time ( about three/four times a day.) It's because my short term memory is pants, plus I do things without realising that I have done them and stuff ends up in odd places. They just said, 'Well you'll have to keep things tidier ' I showed immense restraint and smiled, when I wanted to shout at her, 'If it was that easy don't you think I would have been doing that?!' Good job I am not a violent person.

Thank goodness for this site. It is so good to know we are not alone in our trials and tribulations.😁🌸

[Matt2584 in reply to Marnie22]

I’m glad that you enjoyed the post and could relate to it to :).

At least I haven’t had any replies that sympathise with my dad or say I was overreacting things or something similar.

I have had some sort of reply like that from someone before and I couldn’t really believe what they were saying. I was thinking “Somebody who has a brain injury was saying I was overreacting!”.... thanks for nothing.

Anyhow, I haven’t had any reply like that... YET :).

[Marnie22 in reply to Matt2584]

I wouldn't worry. Having a sense of humour is a vital part of coping with a brain injury. 🙃

[Matt2584 in reply to Marnie22]

Too true

They say “Laughter is the best medicine” and that can actually be true as well.

A few years ago I went on a cognitive course with my Headway and the lady running the course was saying that a man who had a brain injury was able to treat his injury by watching films that made him laugh.

When we laugh our brains release a chemical that can treat our brains... apparently.

[cat3]

It's so disheartening hearing how none BI-ers don't have 'That Problem' of losing/mislaying/forgetting things because they organise themselves properly. I'm not sure the message will ever sink in of just how much brain fog we need to wade through------simply to get out of the house ! 😧

The Robert Burns poem comes to mind ….'The best laid schemes go often askew' when I've baked a fruitcake only to find I forgot the fruit or walked the 1/2 mile to my daughters to take a special gift and, yes, forgotten the gift.

It's usually when we're just trying to be spontaneous and don't want to spoil the mood with constant vigilance------- but when we DO concentrate hard on the task in hand there's usually something else lurking that we forgot ! 🙄x

[Marnie22 in reply to cat3]

Yes, it's not for want of effort that things go wrong. In fact we spend SO much effort just trying to do everyday stuff, it's not even funny. It's tough to have to try to concentrate so hard on EVERYTHING. I am finding it so helpful to read others' experiences and to find out I am not alone in these things. 🙂

[Matt2584 in reply to Marnie22]

This is what I say about the benefit system. We get benefits because we deserve them. Yes ok, we might not physically go out and perform a job (slavery) but just having a brain injury is pretty much a full time job in itself because we have to work double time to do some of the most easiest things that many others can do.

For me, my balance is probably the worst and hardest part of me to control/maintain. But saying that I CONTROL MY BALANCE is working.

Many other people don’t even have to think about controlling their balance. They are very lucky.

So when the likes of the DWP say you are fit to work you should be able to say,

“Well actually I already am working... double the amount you do in fact... and now you want me to take on another job!

You must be stark-raving bonkers.

You can poke that where the sun don’t shine, thank you very much”.

[cat3 in reply to Matt2584]

My balance is also my biggest issue. My pal still doesn't get why I'm so exhausted after walking to the shops and back (approx. 1.5km) and it's hard to convince him of the amount of concentration required to keep my balance and avoid veering off into other pedestrians or hedges ! x

[Matt2584 in reply to cat3]

It’s times like that when you want to face them, put your hands on their shoulders, look into their eyes and say “You would understand if you had a brain injury”.

[cat3 in reply to Matt2584]

That just brings forth a shrug & change of subject …….

We're on our own kid ! (That's why Headway's a lifesaver for so many).😏 xx

[Matt2584 in reply to cat3]

When my dad says silly things like that it makes me think “Thin ice dad.... very thin ice”.

The passage you copied from the poem reminded me of something.

There is a lady at my Headway who makes a right nice bit of banoffee pie and usually brings some in once a year, twice if lucky :).

Anyhow, one year when she brought some in, I had a piece, thought it was very nice and the next time I saw her she told me she had forgot to put the bananas in it.

She brought the pie in but when she got home the bananas were still on the table.

So what I had was offee pie :).

It was still very nice though.

I thought I could taste banana but that may have been my brain expecting to taste the banana and so didn’t really take into account what I was tasting.

At another disabled group I used to go to years ago the guy there put salt in my coffee instead of sugar.

I like to let my drink cool down first before I drink it and I only found out when the rest of the group were saying that the coffee tasted horrible :).

[Marnie22 in reply to Matt2584]

Brilliant post. I adore the whole concept of 'offee pie!' I think that should become a dish in its own right!' 🍌🍌🍌🍌🍌

[cat3 in reply to Matt2584]

Many years ago I tried to make a good impression when I met my boyfriend's mum for the first time. She was busy in the garden so I offered to make cups of tea for everyone...……. and they all took sugar.

They all had very salty tea. Fortunately everyone saw the funny side. But my abiding memory is of a group of complete strangers sitting on the lawn frowning & spluttering ….and me thinking 'I've blown it'. 🙄 (it actually just broke the ice 😃) x

[Pinkstarburst]

I enjoyed reading your post, it did make me laugh, Sometimes I go to explain to someone that makes a Comment and Stop and just think it’s not worth it and smile, you get to the point when u actually realise people just don’t get it

Good for you for getting out and about on your own,

I love days like that too xx