I have aphasia

I have just put in all the things I put onto JustGiving for the last week. Obviously I am asking for a bit of ‘charrity’  heh heh

Two many things all at once, so hopefully you can see what I am on about! Tell people what actually happened to me … almost...

I have aphasia. Interesting. A few shrieks after having ovarian cancer - but amazingly that was easier to deal with. This has taken me nearly 4 years just to deal with the fact that I can’t read, can’t remember things - sometimes I can’t focus at all…but I can’t read YET [if I poke my eyes almost into a book it helps a bit] etc.

So it has taken a long time to get here – but I AM here. And I now want something please - I want to raise some funds for all the people from all walks of life who have developed aphasia. I am amazed about how many people there are that have aphasia. About 367,000 people in the UK. A LOT!

Aphasia is a communication 'disability' caused by damage to the language centres of the brain. It can affect understanding of language, speech, reading and writing. I had experienced a massive ‘subarachnoid brain haemorrhage’. Then a stroke 4 days later. That’s where I said ‘interesting’.

To be fair, it isn’t very interesting – but it stops me having a ‘normal’ conversation, sometimes a lot, sometimes a little. Some days I can’t read at all – other days I read a few pages. Yelling with delight! Some people have a harder time than I do – and we REALLY want to help one another. Mainly to have a bit of a chuckle!

Aphasia does not affect one's intelligence – it just stops you from communicating ‘normally’.

To me, this little challenge [my first one - so far!] is raising funds to help in the fight against not being able to speak - or have someone to sit near you just to make you feel better. This challenge is an opportunity for me to raise awareness and significant funds to help the fight against being alone or being afraid.

Aphasia can affect anyone at all ... so your money will be well spent.

Thanks for taking the time to visit my JustGiving page and to read all this.
Onward and upward!

News!

Bit of news. Feb 14th [Valentine’s day] I had an MRA – I got the results! The jolly old aneurysm that nearly killed me [it was clipped 8 hours after FH found me] and also the other ‘incidental’ [eh?] aneurysms – well, the letter says ‘have excellent appearances of your previous treatment’. Rah.

Arranged for next year’s scan and that is that. Great!

I was rather stressed. Not a lot of 'proper' speaking. Now I want a tattoo like Angelina.

BUT I feel much better! And I would love to get a bit more pennies here

Thanks!

#sandhy-robinson-jones JustGiving

Busy busy…

Off to the breast check this morning - and that is something I ALWAYS know I'm going. Very difficult to park - much better in the summer.

Today it's freezing. But a good thing to do once a year, that says: 'great, everything is fine'.

Plus I am dropping off my beautiful wigs down to Force.

Plus it’s International Women's Day! Bwaa! Let’s shout a bit here girls!

As usual [I know - I'm a nagger], I would be chuffed if you donated a little money (or a LOT) – a lot of women AND men have aphasia – thanks for helping me!
x

Here is my #sandhy-robinson-jones JustGiving

Interesting – as usual

Today was VERY interesting; I have started remembering things.

Places I've been to - I remember what we did there; going in the antique shops, having coffee and this time I am so much calmer [that’ll be the old brain].

We had very English coffee with HUGE sandwiches in Ashburton.

It is becoming more ‘real’, even when I can’t speak entire sentences, I can give it a good old go. After 4 years I am getting more tolerant. I’ve stopped feeling like screaming.

Life, as I know very well, goes on. And my brain MUST be getting better? I hope so.

The 5th day…

The 5th day started brilliantly! Did a design thing! Had help from Mike with the ‘Big Lottery Fund’ stuff – new .esp had to be changed back into an old version. Thanks for that dude!

And some painting in the shed on our new chairs. Good things. Except Bear ran across the entire lot. Hmm

And I have had lots of people sending donations since last night. I am so CHUFFED!

Also, people are taking the Living with Aphasia info and passing it around. Just as good as money sometimes

Good day ❤️

P.S.: The Quay? Mostly raining…

4th day peeps!

I am having one of those days I’m afraid - swearing in my head, as everything is going wrong. So this is very quick.

Remember, the 1st of May is our FIRST anniversary! A rather fun walk for everyone to go on and bringing friends for a party type of thing afterward.

We are having Sing Aphasia [that’s us, singing!], Exeter Foundation visiting with a big cheque, lots of super cake & pasties! Yum.

In the meantime, I am asking for donations all the way round the Quay!

And today, here on my jolly JustGiving page  :)

https://www.justgiving.com/fundraising/sandhy-robinson-jones

Sunday!

The snow is disappearing. We are off into the countryside. It's perfect, as one doesn't need to talk much.

The best is that I can now ask & everyone knows exactly what I'm on about. 4 years seems quick - but it's not.

Look up 'subarachnoid haemorrhage' today. Scary. VERY scary…

Rainy!

3rd day - aphasia is waiting to be conquered!

Todays 'speaking' bit; can you imagine every day NOT talking properly? Not explaining things? Or speaking but no one ‘gets’ it?

They sort of change your mind for you as they don’t understand, so they make a plan. It is so kind – sometimes. Today I discovered that the bedroom window is cracked – I couldn’t explain it properly [note: I get cross], so the FH had to come upstairs & look at it. So a small thing becomes a BIG thing. Grr.

If you can, a couple of pennies would help!

Ta!

Morning peeps!

The snow is still here - freezing! So we're all at home right? Nice!

If you have time, have a look at my story. If you can, please help me to raise my aphasia page? It's making me so excited to actually even do this update - yay! Let's see how it goes today!

xx

https://www.justgiving.com/fundraising/sandhy-robinson-jones

Friday – hmm

I was listening to an interesting conversation today. It was about having irritating people not noticing what the people around them are struggling with. And they aren’t ‘helping’. You know – like people with cancer, or brain subarachnoid haemorrhage … you know – these sort of frightful afternoon drama attacks. Imagine.

And by the way – apparently [according to our random internet types] one-third of patients with brain subarachnoid haemorrhage will survive with good recovery; one-third will survive with a disability; and one-third will die. Bugger – must be a nightmare when you’re trundling along and you suddenly die of ‘the one-third’.

Anyway – where was I? Oh yes - I used lots of people with all that kind of stuff and had no problem at all with having the cancer part. Although I didn’t have a tattoo [might go and have that now!] – if I wanted a masseuse I’d get my friend Julie to do it! Or Force.

I have many more problems now, as people don't get the fact that my 'problem' - i.e.: I can sometime speak, and sometimes I can’t explain – and all the problems that I have cannot be explained in a chat. Try that at the doctor…

And these people will simply ‘fill in’ for us. No one ever tried to remove my cancer and sort THAT out for me. But they can say what I am trying to say as I am an aphasia. Tut tut! Not a very good idea. Usually it’s a totally disaster, as I will be trying to find a different work / thing / plot etc. And usually I was getting very angry – now I can get my head round it. Which means I wont have a heart attach. Yay.

Having had cancer and now I have the brain haemorrhage and the stroke, the people I have struggled with have been the doctors amazingly enough. It’s almost ‘off you go – you’ll be fine’. Well, I wasn’t fine at all. But eventually I trundled off to the hospital and spoke to my cancer peeps. They helped me get it straight with my daktari. Very good plan.

It is worse when you are a brain haemorrhage / aphasia / was a cancer type person - life is so full of people who can't 'cope' with dealing with that.

Personally I wouldn't discrimination with people who can't help others – I’d simply walk away.

It was a speedy Wednesday [not!]

Well, it’s actually Thursday. How is it that everything has to be done at a fast, rushing rate? I never seem to get a ‘chilled out brain’. Ever. Nope. And I think I had the same thing before my brain got rather slow with the old brain haemorrhage! People on the earth need to slow down … but we can’t can we?

On Wednesday I was doing things for the Living with Aphasia with Barbara. She organises what we should do, then we just go off and do whatever random stuff that needs doing.

We now have a Living with Aphasia sponsorship afternoon thing come up. We will be trundling round the Quay and then we will be celebrating our One Year Anniversary of our charity. Cool! A few scrummy rugby chaps to help us open the day. All on the 1st of May.

In the meantime I need a new JustGiving so I can actually get a bit of fundraising without having a nervous breakdown…it’s coming, but it’s taking a wee while.

In the meantime I need to get lots of house stuff into the attics. We have some chaps who are coming to paint all the upstairs rooms – the ceiling, the walls, the wood work … aargh!

Stress…check out the wall paint. Lovely and blue! It should look great. Fingers crossed! At the moment it’s all stripped and seriously looks horrid.

Off to add a few more bits into the attic now! But, that's the third day that I’ve been writing. Amazing …

Already on the second page!

A second page in two days? A miracle. Really! To actually put anything sensible on paper [or stuff that looks like paper] is quite hard when you have a few interesting things going on in your ‘head’.

I am going to try to create a sort of ‘this is what happened’. That is going to be for me mostly – you can read along if you want. Hopefully my head will feel SO much better after I try to understand everything. One of the things is the Facebook pages – so many remarks spoken by the people who I knew whilst I was in hospital [or madly trying to escape…] and the FH told everyone what was going on then. He is so supportive of me. I am still not quite ME. But I will get there. The FH has an interesting life with a nutty wife! :)

Half the time I can’t work out what happened [I’ve been told MANY times] – that whole thing about ‘you were in a coma’ – shriek! What ever was I thinking of that day?  I had my Women V Cancer – Ride the Night thing coming up … it was our first one. I sort of missed it! Bugger.

And this year I should really try to do the London to Paris women v cancer – I got my £3,394.79 money sorted out to go to Vietnam but unfortunately I could not do it. But I could do it this year? Hmm. Maybe. Lot of pain jibber around at the moment. Onward and upward as usual.

Maybe as my brain trundles along, things will carry on getting better … in the meantime, I have a MRI scan next week. Such fun! They check that my head is ok. Good show! And today I am off to the Living with Aphasia this afternoon. Nice and chilled and the cake will be scrummy!

Brandon Kidwell

Getting to the end of 4 years…

This is a sort of new blog – now I can write a lot more, and I actually read more too. Amazing. But it can be very irritating as some of my spelling and words get rather confusing. But hey – you don’t have to read this you know …

Incredible to think that the brain aneurysm and stroke [grr] happened almost 4 years ago. Bah. But to be fair, I am starting to feel a bit less stressed and more ‘human’. Fingers crossed.

I shall be having a teeny party in May this year…19th of May in 2014 was when I ‘fell over and didn’t get up for a few days’ heh heh

What I am going to do is do this – maybe a daily blog? I need to try to remember things. Hard!

So – we’ll see! Hope you don't die of boredom! 

In the meantime I am doing a lot of stuff in the house!