"We all get like that"

[Matt2584]

In one on Bonfire's comments I mentioned about posting a certain image that refers to brain injuries and is a great example of to those people who don't understand BI, well I think it is great :).

Hope you like it also.

[StrawberryCream]

This is especially my neighbour as she is the worst for crass and unhelpful responses! She will ask me how I am and then every problem I speak of ...... she has it too. For her it is part of being elderly! I now avoid her as much as possible cos it winds me up big time and feels like she is minimising my bi!

[Matt2584 in reply to StrawberryCream]

Hi Caroline,

Your neighbour sounds similar to my Dad. Every symptom or something not just that happens with me but with my family and other people too, he has had it as well.

I hate it and my mum hates it too, AND I HAVE TO LIVE WITH THIS MAN.

Not long ago, my Headway had a tea party to celebrate their 30th anniversary, you may have noticed my previous post. The tea party was very good by the way and I got to see some old friends. After the tea party some of us friends met up in a pub just opposite of the place where the tea party was held.

My Dad was speaking to one of my friends, who used to go to Headway, and my friend was talking about some of the mishaps he has or had because of his BI and my dad said "We all get likr that".

I couldn't quite believe he was saying that to a friend of mine though.

Then I said about one of my experiences where I was making coffee for myself and my parents and after I pour the boiled water, the next thing is to put the milk in, I was telling myself. But before I put the kettle back on the stand, I opened the fridge door attempting to put the kettle in the fridge :).

That is when my Dad turned toward me and said "I've done that before". The chances are he has probably done nothing of the sort.

He has been like this for years now and me, my mum and older brother think that he has dementia. My Dad even thought of his dad, my grandad, as having dementia and he even told me that my grandads sister and father had dementia too and he thinks it must run in the family.

You say your neighbour says it is part of being elderly...TOO HER. Maybe your neighbour has dementia? Wouldn't surprise me.

However, I think there is more too dementia than just being elderly or even genetics. I think chemicals have a big reason to do with it.

Take care,

MJ

[angelite in reply to StrawberryCream]

Strawbs, I think I'm working for your neighbour's twin sister ! As you say, it is often because of old age/need for sympathy or attention. I've learned the art of making all the right noises in response, whilst letting it all just wash over me ! One of her favourite sayings is ' I can hardly stand on my legs ' as I stagger in on my spastic legs, do a great impression of Axl Rose spinally while trying to take my shoes off and and plonk my stick by the door ! I find the irony amusing rather than annoying !

I don't think these type of people are deliberately minimising our conditions - I feel they are genuinely so absorbed in themselves that they do not fully see or relate to other's problems ! She kept sending messages via my partner during my illness 'When is she coming back?' or ' If Angela doesn't come back to work soon, I will have to get someone else in' ( fine by me ! ) as if pressure could make me pull myself together and make my body work. Then we had 'Can't she just come in and sit with me, she doesn't have to do any work' when I could only walk with assistance and was struggling with BP drops, motor fits,light and sound sensitivity, exhaustion -all the fun of the brain inflammation fair. Not really up for companionship and conversation ! Was at it again when I was in hospital being treated for sepsis ' When's Angela coming back ?'rather than 'How is she ?' I give up ! ! !

She once said that I was young so would get over it, whereas she was old so wouldn't get better from her arthritis,vision probs etc - so great is the understanding ! So, there you go Strawbs, we should be all better from our damage due to our age ! : ))

Hope you are doing okay ( as okay as we can be ! ). Lovely weather but batters my balance etc with the heat - keep wetting my vest to try and keep my core temp down. If you read about a random woman in the papers, who is caught on CCTV trespassing in posh people's gardens to stand under their lawn sprinklers, you'll know who it is ! : ))

Take care from your not quite all better friend, Angela : ) x

[StrawberryCream in reply to angelite]

Thanks Angela it's reassuring to know I'm not alone with this! She talks to me as if I'm the same generation as her whereas I am her children's age, 25-30ish years younger, and I don't think she would be saying those things to them! The other day she made a big point of emphasising 'You look well, in fact you look VERY VERY well' I wanted to retaliate by asking 'does a brain injury make you look unwell then???' but I thought what's the point and just said 'oh do I' and went on my way. I think she thinks I should be completely recovered now and am making things up! It's awful isn't it Angela what we go through with other people's crass and hurtful comments.

I'm liking the improved weather but come out in the evenings as can't tolerate the hot sun! Just had a full on week as my son on school holiday so will be doing lots of napping to recharge my batteries as much as worn out batteries will charge!

Best wishes

Caroline x

[sospan]

I nearly hit my GP a few years ago for coming out with a crass comment like the one in the picture.

When I was explaining my symptoms yet again, I said I struggle with maths now, the GP's response "Yes, but a lot of people can't do maths !"

[Matt2584 in reply to sospan]

What a thoughtless GP you have. It's as if your GP and other people think that you have have a brain injury, that's all. Your still human and you still go through the same things as eveyone else does.

But in actual fact, no, it is nothing like that.

I'm not trying to say that now our brains are injured it means we are a completely different race or anything cos we are still human, we do have the same/similar lives to what we had. It's just we have to live our lives slightly differently to most others who haven't got a BI.

It kind of reminds me when my nan used to give out dessert and she would top it with squirty cream, she used to put lashings on and she would then say "It melts away, there's not much in it anyway". Little does she know.

It melts away for a reason, so you can add more to the dessert and consume more chemicals and get fatter.

I don't exactly know why it reminded me of the cream now :).

Take care,

MJ

[sospan in reply to Matt2584]

It really is remarkable the lack of knowledge and understanding that medical people have of what a head injury can be like.

One of the things that has always annoyed me is the level of support patients with other illnesses get - my wife has type 2 diabetes, she has a dedicated nurse, can get discounted gym membership, have regular "expert" sessions where they give coping with diabetes talks and advice....... head injury nothing.

At least you have a involved Headway where you are which must be such a help

[Matt2584 in reply to sospan]

It seems really that most doctors seem to know evetything about the body but know nothing about curing or treating illnesses, diseases and so on.

It's like they diagnose a problem, then twll you to take certain medicine and that's it. I know there is a bit more to it than that but this is how it seems at times.

With my injury that started in 96. I should have been pointed in the direction of Headway right from the get-go. I wasn't though. It was a little over ten years later when I found out about Headway!

I also joined another disabled group in 2008 and that is where I learnt about a yellow card that I could pick up from my social services and the card registered me as disabled.

With this card I could get a free bus pass and I can also use it to get my carer in for free at the cinema.

These people come up with these discounts and so on for the disabled but don't want people to know about it because they don't advertise it.

I am guessing you don't have a Headway branch you visit often?

Sorry to hear that if that is the case.

My Headway is very helpful and I would say I have seen more people than I getting help from my Headway. I would think it is because I have parents where at least one parent is around all the time and also I am an easy going person so I don't recquire so much help.

But last year though, my Headway did help me in a big way by getting me to travel to their main offices by myself :).

Take care,

MJ

[sospan in reply to Matt2584]

There are two Headway branches near me, one in Swansea has more of day centre feel where people come and play board games etc. the other one has a monthly evening meeting where they do things like make easter bonnets. Not my cup of tea but some people like / need things like this.

[Matt2584 in reply to sospan]

The first Headway centre you speak of sounds like mine. I live in a town called Gosport and the Headway main offices are in the Mountbatten centre, a leisure facility, and that is in Portsmouth city, next to Gosport.

I now travel from Gosport to Portsmouth on my own and the session there begins at 10 and the group play board games up until 11 and then we walk down to a sports hall and play boccia, don't know if you know that game? It's similar to the game boulles and a lot of banter is involved :).

At 12, some people leave and some people stay on for another half an hour or so and then leave.

I also use one of their outreaches which is in Gosport and not far from where I live. The outreach is where people drop by when they want and meet up with their friends and have a chat and eat and drink. We also have a quiz, usually.

As I am a service user mentor (volunteer) I make the drinks for the group and I have been told that I am very good at what I do to :).

I have actually been nominated as the volunteer of the year of Gosport and the ceremony is on Thursday :).

Take care,

MJ

[Mads1975]

This applies to my wife who when I say I'm tired, or I need to take a nap, are told that she gets tired too but doesn't complain!

[Matt2584 in reply to Mads1975]

It's not a very helpful thing to say is it really.

My dad is one of these people who say these unhelpful and unwanted phrases and the other day I was talking to him about when I was out and about and I was in a crowded environment, it might have been at one of my Headway meetings, not sure.

Anyway, my hearing is not as good as it was and I can struggle to hear people sometimes, I think I have a bit of tinnitus which does run in the family but for brain injury survivors, these things are heightened.

So anyway, I was saying to my dad how I found it hard to hear what was being said and he said the usual "Oh I get that as well" and I just bluntly said to him "Yeah, well I get it much worse" and that seemed to shut him up haha.

I swear sometimes he must think that my BI has only given me balance problems and affected nerves/slight paralysis and that is it. How wrong he is.

[Mads1975]

Indeed. About as much use as a one-legged man at an arse-kicking party.