Even people with brain injury don’t understand them - Headway

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Even people with brain injury don’t understand them

keeley24
keeley24

I think we have all come across people who don’t have BI who can’t understand what it’s like. I had a not so nice talk with a woman who attends the same BI group as I do.

I had spoken to man who runs the group about rides as I like them and he said he did and would love to do a trip to somewhere like Alton towers, but is aware not everyone would be able/want to go there and obviously after BI some may not be able to go on fast rides. So he told me if I wanted to go I should ask people at the group obviously thinking who could/couldn’t go such as 1 woman in wheel chair and few with mobility problems wouldn’t manage so don’t ask them. But others such as myself and others would be able to.

So I asked someone this week who would like a trip to somewhere like Alton towers and this woman heard and obviously didn’t like the idea and said if I would go on rides and do all the walking I do I can’t have much of a BI I’ve no idea how anyone can’t have much of a BI you either have one or you don’t and everyone recovers at different speeds and is effected differently. This woman seems to think everyone is or should be effected in same way. She gets tired easily and avoids much physical things such as long walks. Plenty from the group does manage to do a lot of walking and running but this woman seems to think anyone who can manage more than her doesn’t have much of a BI. Luckily I just laughed it off and didn’t get bothered by it. I think her comments show more about herself than anyone else just showed how little she knows about BI

I actually wish I had thought to point out it just shows how little she understands about BI and seen what she had to say.

18 Replies
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I've spoken to lots of TBIs and soon realised I didn't understand many symptoms, which others experience. Like anybody else we can only truly understand if we've had exactly the same experience since birth.

Of course there could be a number of reasons why this person appears to be intolerant.

Her post TBI experience has been much worse most other people.

She's the type of person who by default their operation/coma was much worse than others.

She's in a bad place and needs someone to empathise and offer support.

However beware you don't want to make friends with a grumpy winger.

She is one of the people who has been more effected by her BI but there are plenty of others at the group who have had it worse than her. There is one woman who has been in a wheel chair since her BI and she is one of nicest people you could meet never moans about anything always pleased when others achieve anything. She does miss out on a few things purely cos she can’t walk so there is only so much anyone can do for her she has to rely on her husband for everything. There is one woman in her 20s that struggles walking but pushes herself to do all she can and encourages others to do well. Everyone is at different stages in recovery which plays part in how much they can manage.

This woman who said I don’t have much of a BI does have seizures and probably does need friends which she has through going to the group in fact we are both friends with some of same people. I’m not friends with her but do talk and get on for sake of not causing problems. I am the first person to admit I have had it very light going through BI at side of most people but I can’t help that and I am grateful. But there are people who are doing more or better than me and good for them everyone is different. I’m not one to think others shouldn’t be able to do something just cos I can’t.

eileenleach
eileenleach in reply to keeley24

Epilepsy could well be the reason she’s tired n the medication she takes for epilepsy but she should read up enough to know different parts of the brain effect u differently too, depends where her b I was, n there is a story about a steam train driver who was a lovely man n a metal bar flew off the train n hit him in head n after he recovered he was a totally diff guy n literally the opposite of what he was like,

I have epilepsy,and take a number of different medications , I am tired nearly ALL day,I sleep a couple of hrs during the day and my normal 8-9 hrs during the night.Thats how the epilepsy medication works by making you more relaxed and tired,so your not tensed up.I asked my Neurologist could he take me off some medication,as I`m so,so tired,he replied `Do you want to be seizure free and a bit tired,or not tired and having seizures`

Hi Keele.

Everyone is different and this includes people with bi.

Myself I get fatigued easily but also have a back and leg injury. I am in constant pain but can walk a short distance and even have helped run a walking group.

On the other hand I know somone with a bi who raises money by running marathons. He has other problems due to his bi but not fatigue.

It can be hard for some with a bi to not realise we all are not affected the same.

Pax

Even if your used to folks with a brain injury takes a while to click, unless there is a physical sign, personally mine are fairly well hidden, I get tired quite easily cognitively though generally not physically, my wife is very good and reading how tired I am but others probably wouldn’t know!

Due to the fact I’m fit a strong, I have had must be fine from others with a BI over the years, I seem to tire out cognitively that others I’d say judging by fact that others at say the Headway conference could stay up quite late, etc. Where as I paid for it, and deliberately didn’t go to that many talks to try to reduce cognitive overload.

Yea I’ve noticed most people who have BI don’t have noticeable effects. Only one man who goes to the group has noticeable forgetfulness with names he just can’t remember any for more than a few minutes. A few people have physical problems.

I know short term memory is common sign of BI but in most cases that doesn’t seem noticeable for me it’s things I’m not bothered over remembering I forget which makes it look like selective memory when it’s not. The man who runs group says his memory is bad but it doesn’t seem that bad. With him cos he’s always busy it’s easy to forget he does still struggle with somethings and if you want his attention you need to make Ute he knows you are talking to him and he’s listening. Once woman who used to work with him wanted him to send her a photo and got him to look at her before asking him to send it as he can only concentrate on one thing at once, yet when driving he is fine talking and driving in fact I don’t think he’s ever quiet when driving.

Other thing to rember is for some people, they get stuck in the Grieving Cycle and everything is about the injury and essentially there injuries, so will attempt to play disability bingo/top trumps my wife has called it having noted folks like that, when coming with me to some events one or two are “professionally disabled” don’t get me wrong most people enjoy attention etc, I’ve gone to events and had lovely young woman wanting to talk/ find out more about Brain Injury I’d be lying if this wasn’t pleasing, but with insight, while I may enjoy it, it’s not all I am, which it seems to be for some folks. Ie they are generally very unhappy, even if they can equally be quite unpleasant.

Hi Keeley24. Don't bite your the group can't please everyone. If it most people they should go. One day there be a trip that you won't go. I so agree with sealiphone. The group that I go is run for somebody not everybody. They can't be professional or see the people a tick box. Time to stick up for yourself. Xx

Yes they judge you so much. X

Over the years I have found there seems to be a core set of post BI experiences that many if not most of us share ...and even we do not experience them personally we are generally aware of them and can empathise...and then there is a side menu of experiences varying from the fairly common to the "so rare I have yet to find another soul who experiences this" kind.

But pre BI personality can play a large part in how people handle what BI does (or does not) bring to their particular table and how they react can often show itself in social interactions. It could easily be her BI experiences talking rather than any malicious or spiteful intent on her part.

I really dislike it when someone makes decisions for me about what I can and cannot handle without actually asking me how I feel about it. A theme park would be my idea of hell...all that noise and lights and fast moving things would cause a sensory overload and subsequent meltdown and I don't walk far or stand for prolonged periods...so while I wouldn't go, I would still like to be included and asked how I felt about the idea of the trip. ...and so I will admit that when I read your post I was a little shocked when I read this

"So he told me if I wanted to go I should ask people at the group obviously thinking who could/couldn’t go such as 1 woman in wheel chair and few with mobility problems wouldn’t manage so don’t ask them."

Admittedly theme parks are not fully accessible and its not always practical in a group setting, but people with mobility issues and in wheelchairs do go...

Hope you get to go on your trip and that you have loads of fun. Those who don't care to go can stay behind ;)

keeley24
keeley24 in reply to iforget

Interesting reply thanks for sharing your thoughts on it. I understand you feeling you are the main person to decide if something is suitable for you and I agree everyone knows more what’s best for themselves than anyone else. I could be deciding who to ask based on my own feelings. I would hate to miss out on something that I would like due to mobility problems or any other reason so would rather not know as I know it’s not fair for people to miss out just cos others can’t join in.

Also have to think of the staff as they will be responsible for everyone and want to enjoy it so having a few people with mobility problems could mean they spend the day on edge incase anything went wrong. Then again it’s upto them to organise trips so they would probably either not do the trip or plan it so more staff went.

Another idea I’m thinking would suit more people is going somewhere with rides and other stuff like animals. That way more people would go and could have 2 groups one going on rides one looking at animals. Only this would mean everyone missing something like animals would suit everyone but those going on rides would likely miss seeing some animals at least but not much can be done about that.

Cumfevan
Cumfevan in reply to keeley24

"Also have to think of the staff as they will be responsible for everyone and want to enjoy it so having a few people with mobility problems could mean they spend the day on edge incase anything went wrong..."

Just cause a few someones have mobility problems is neither a reason to count them out before asking the group about the trip nor in & of itself to b on edge jic anything were to go wrong on an outing - you could have a person who can "ambulate" fine but has other hidden disability/ medical conditions apart from BI that might be cause for staff to b on edge. & potentially not enjoying the group outing if those other disability act up - i.e. Anaphylactic food allergies / brittle severe asthma etc

Hope this helps x

Totally agree with you on this 1, if I don't tell people I have a brain injury people don't know. I've done Race for Life, Starlight Walk, held down jobs, been back to college studied to become a florist, passed with a distinction. I've had TBI for 15 years after being hit by a car while walking home. TBI affects everyone differently, we have to remember the brain is a big muscle and damage to any muscle can happen in a variety of ways so not every brain injury stops you doing things. If anything exercising the muscle is 1 of the best ways to help it. People are scared of anything that challenges them so I wouldn't take any notice of what is said, as long as your Ok with it then go for it.

Yea was talking with woman who used to work there a while back and she said some people get stuck in early recovery like never pushing themselves to do more or get used to doing more. I think this woman who said I can’t have much of a BI is in this group stuck in early recovery. It’s like cos she gets tired easy she avoids doing things so she will never be able to do more without getting tired. Also she lets things stress her out which can cause her to have seizures which obviously stresses her more so it’s like a downwards spiral. Was once talking to man who used to go to group about why he stopped going. There had been some disagreements with him and staff which he wasn’t happy with and wasn’t willing to discus with the staff and I wanted to know what had gone on but this woman insisted we should stop talking about it cos it was stressing her out. So in end me and the man went away from her to have a chat.

eileenleach
eileenleach in reply to keeley24

Was this guys disagreements due to his head injury,

eileenleach
eileenleach in reply to keeley24

I’ll explain that better, my son has front lobal head injury and is never wrong even when he is wrong, he will argue all day long n get angry n start banging doors n throwing things n Iv learnt to just walk away rather that even try put him right because u still won’t convince him n I get abuse n it stresses me out n he’s clearly stressed out too but I contacted headway 3 years after his crash n explained all the things I was seeing in my son since his crash n there reply was so helpful because it confirmed these things were effects of a front lobal head injury n he should’ve had brain training n diff tests after he recovered to find the real damage n to retrain his brain, but he was home 12 days after crash n that was it x

I hate they way people say to me your looking wel.people dont understand that with bi its a hidden disability lifes not the same sometimes u feel like giving up nothing ever will be the same and i will never get my life back from before my injury.lifes harder now

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