what you do defines you...

#blogpost01 #day 21

The word “week” is a very interesting word…

This #week - • drawing birthday cards

• creating ceramic style clay articles • chatting madly to a pc fellow called #dave to buy a new #pc #aphasiasucks #comprehension

• massive rage with the local doctors letter [ok if you can read comprehensively] telling me I will be checked for a #mini stroke? #fucksakes

• BUT a wonderful girl in the reception helped me feel a million times better. Booked an appointment with a #daktari that actually reads what actually happens to others. Hoorah

Love that receptionist at Claremont Medical Practice

• another brilliant chat - this time with first direct to be able to ACTUALLY use it again… amazing • thank the lord for the FH

• And: creating a 2nd head for my #smallhuman family - another art #prototype

• waiting for the snow, hail, hideous cold to bugger off in order to collect my first prototype + Tony’s #leopard clay animal

• waiting to see the surgeon to re-mend my broken face

So the word: “week”?

It feels like a word that said “weak” as I constantly struggle to remain focused before losing the plot with the anger of my brain. Not understanding whilst many find that I MUST be understanding.

And NO darlings, having had so many checks including the after effects of menopause, happily, it is actually created by my chuckalious broken brain…

“It is not who you are underneath, but what you do that defines you."

~ Batman

I will survive...

Running through my memories - I love that. Note. Sarcasm.  

Ovarian cancer
Bells palsy
Coccygectomy
Brain injury

Again, a particularly stressful few years before my brain injury [see Ovarian cancer?? pass the wine...now!] - thinking about not to take life for granted - so I am using the words of others - but getting the idea across...

Here is an excerpt from Steve Jobs’s 2005 commencement speech that mentions his philosophy of living each day as if it were his last.
A hard thing to get ones head around.

Try. I survived. 

Twice. 

Because every moment in life is valuable - so don't let it be taken away - hold on to life - with rage.
Cognitive reserve...

-------------------------------------------------------------------

"Life is full of surprises. You’ll never know for certain what your future will look like. You’ll never know where you end up or what you’ll accomplish in the next few years. You’ll never know who you will befriend, what you will experience, how you will feel…

If you only had 24 hours to live, you wouldn’t ever think about laying on your bed all day eating Doritos, watching mindless content on YouTube or scrolling through Instagram all day.

You’d realize how much time you’d spent on things you never cared about which made you feel good in the present, but would never amount to anything in the future.

We’d love a little more time to finally be able to say the honest truth; things you would never have thought of sharing about yourself without the thought of your impending death.

You won’t take your time for granted and would only pay attention to the things that are most important to you. You have no time to waste, because your life can end any minute."

~ Steve Jobs
1955 - 2011


Ovarian Cancer Action

I re-started. From zero.

#blogpost01 #day18/19

Second day of the year. Happy New Year all. From me and the Moving Tribe art.

Now it is the Thursday and I still haven't put this up. Still worrying. So I am simply putting it up on my blog.

Read. Don't read. Your little invite. From me and my #broken brain.

Right - back to my blog again. The more days I don’t try to do the blog the more days I will stop doing it. At all. Again. Fight + flight.

Just after Christmas my brain was in the ‘oh dear Sandhy; you are SO slow, SO stupid, stand behind the rest as you are so VERY unpleasant when you manage to speak dear… you MUST be fine! 8 years…gosh’ etc. etc. etc.

Rage. Distress. Sadness. Learning still.

The brain is here. The mind is down in the Arctic Wastelands. Cursing. It’s so astounding that even now, after 8 years, my brain still moves forward. Leaving the mind behind…invisible.

The new [almost] piece of information that has appeared into my head - remember Victor Frankenstein's creation? If I did not have all the back notes of my Other Life, I would literally think that the image with the story is simply…me.

I am: “assembled from old body parts and strange chemicals, animated by a mysterious spark” - “I then [he enters] entered life as a total zero [eight feet tall] and enormously strong but with the mind of a new-born.” The monster is Victor Frankenstein's creation. I re-started. From zero.

Christmas was really lovely. In some ways. My vision of it this year broke down. But - we managed. Bit by bit; little by little.

We had Mumsy down. I struggle to constantly chat + understand conversations. I worry about things that many do not worry about at all. That is more than my remit. So I am so grateful for the FH. Helping me to look 'normal'

We got together with friends and gave gifts. We had the best Christmas lunch when we gathered together with the Moving Tribe down at the Headway room.

The weather is horrendous. That word - depression. But hey.

In the meantime I have started using Laura Croft again! My favourite favourite FAVOURITE game on the pc. And I was doing SO well! Logical. But [as per] it has simply started to keep not working. Just stopping. Full stop. Grr.

to bumble on...

Chaotic moments:

First Direct - 1993 to now

Initial understanding by the bank regarding brain injury after effect’s. Good method of trying to find a way. Calmed my extreme rage / heart banging / brain injury / banging noise on the phone / waiting

But. The FH managed. But this time it was so bad.

The rage. When I cannot follow. Beyond help for a long time.

But we did it. Once again. A new Secure Key. Done. Phew.

Extreme head hurting with the New Spectacles

Extremely thick prescription glasses. Why? Because they didn’t ask, and didn’t check how a brain injury creates extreme pain in my broken head - they made my new glasses so heavy.

Back the Specsavers again this week.

I get so tired of everything going wrong. Over and over and over.

Collecting water 24/7 from under the kitchen sink!

Over a month waiting for a plumber to take the time to stop me & the FH from crawling underneath our sink. Twice a day. I found a bigger 'under-the-sink' bucket. Hoorah. F#@k sakes.

Arthritis is just SUCH fun 🤩

Plumbers are almost like god. Except they get paid.

Adding 5 pounds in 2 weeks #slimmingworldrace

It has taken me 2 years to get rid of 2 stone. From 10 stone 7 ounces to get back to 8 stone 7 pounds.

In 3 weeks of eating all the scrumptious food that I love [NO - never, EVER McD 🙀] - roast potatoes + crisps + chocolate 🍫😹 and basically sitting on my butt. Idle mind. Bad.

So a good day to re-begin that astounding diet that to me is the best way to eat. For possibly 25 years. I think I should ask for a badge. Hooray for Slimming World! Bring back my 1999 clobber which lives in my wardrobe - riot in the kitchen 🍎

Wondering wildly about Saturday - there is a little info on LinkedIn to say ‘have a coffee and do some colouring’. At the XCentre. With Headway Devon.

So if you can’t read if you can’t understand are you supposed to just KNOW know that you are invited? That the coffee morning is there for you? The Incredible Human who battles with brain injury EVERY SINGLE DAY

I think I best stop.

Titanium plates

A question for people who *wish to understand about titanium plates* that we people have it smashed into our skulls whilst not understanding anything about the after effects🤔

Is my titanium mesh:

A: Alpha alloys

B: Beta alloys

or

C: Alpha+beta alloys

Trying to understand [by trying to read ho ho] the information about a piece of metal in my skull 💀 is extreme. Aphasia is still moving forward, but I still cannot understand well, as I cannot comprehend unless I have help. Help can be like sunshine in winter. Very little.

Having a chat with a doctor is not useful. Simply because I am unusual. 1 in 59 who survives with the effects of my brain bleed / subarachnoid haemorrhage / aneurism [and after 8 years, most people think I am now “fine” - I just love that 😳]. The type of stroke that I had after the craniotomy was minuscule compared to the bleed.

So. The pain in my head during extreme cold appears to be quite extreme. Therefore I am trying to work out the best thing to do. Wearing a woolly hat maybe the only answer but to recall putting that one my head each time? 🧠

Send me a postcard if you have any input about extremities after a Craniotomy in the titanium plate. When the weather is freezing 🥶 

See info that I cannot understand 100%

Day 2 - see how I go...

#blogpost01
#day02

Putting anything on Instagram has become the "You Will Follow The Leader " plan. 

Written posts are constantly re-copied...or creating reels [reels invite you to create fun videos!] Ah - immersive videos. Educate your audience! Ho-hum. 👾

Creating a NEW #socialmedia account? Hmm - unless you have the time to remain relevant + fixated [24/7] - or, if your mindset cannot find or comprehend those #copyandpaste words? Nor find realism to pass out to the masses?

Oh yes! Do be sure not to say words that are now #verboten: [not permitted or allowed : forbidden or prohibited by (or as if by) **AUTHORITY**] ✍🏻
Anybody met that astounding Human who has the Power (or right) to Give Orders to all of Us? I don't think so... 🤨💬

Sometimes, #aphasia can help [I know - a startling thought, to say the least] as copying online is easy. If you can read other peoples words in an instant.

Between my brain 🧠+ my mind 🤯? I still can't 'copy' unless it is spreading something that I feel is true.
And to comprehend well? That is 24/7 without social media.
Spelling? Extremely interesting if it is incorrect.

My social media attack is now dreadful. Because I can't lie. Ever. 

So. You may say:
• #thatsamazing • #thatsinspirational • #youlookamazing • #selflove 🙄

#loveandadorable #beautiful #happy #lookinggood #follow

So - I have discovered something astounding. FB is more interesting.

Perhaps taking 8 years to get to the point of reading more than 2 lines before standing back to reappraise and assess?
Or perhaps my brain is simply still moving forward. 🧠☺️

One day, I may be able to read a book again. 📚👩🏼‍🏫
A book that takes away all the sadness 😭 - reading fiction! Reading allows your imagination to become engaged. Connecting emotionally to characters. Reflecting ones own feelings, problems [!] and desires - as you read.

So. One day. Determined. 👩🏻‍🦳👩🏼‍💻👸🏼

Trying to think - logically

I keep doing pages for this blog. And I never get to the end. So you never see them. I have no self esteem. I feel discarded. Ugly. Not able to read what I have written - nor write quickly; trying for hours. It sucks. Mostly.

But sometimes you get a massive jolt. It is a roughly shaken push. A crash within your mind. Somewhere in your brain. Because sometimes you realise that surviving cancer, then surviving the massive brain injury and a few more little fun sidebars, still leaves many things that can affect you. Waking up is quite scary some days.

Specifically if you want to help others, and it is very hard.

I think that soon I will have to stop reading and watching the News. Not because it’s too hard to understand. Not because it is hard to read. #aphasia

No. But because seeing what is going on in India is horrendous. Many are desperate to find some form of help...and there is almost none.

Living in our country is interesting. People *complain* about almost everything. 

No one seems to really understand how grateful we should be.

Whining about creating new houses and not noticing our incredible hospitals - our doctors - our nurses - our police - our British government...space. Lack of funds - almost everywhere. People battling on to keep there families, friends - working colleagues. All trying to go forward with the COVID-19. Which, apparently, will ‘disappear’ eventually. Perhaps cancer will do that too? Eventually? Sorry to be sarcastic, but really? 

Many news reports are spoken by liars. Which makes me so angry at the news! And the journalists. Tut tut. 

So. Almost everything is there to look after us all. And NO it’s not perfect. How could it EVER be perfect. It has people.

At this point [and no, I am not religious] it breaks my heart to see the amount of people dying. In other country’s. In our own.

As it is difficult to give proper help in another country, when we need to do that here too.

So perhaps we should all consider what we really have. And stop whining!

And send what some people would call prayers. Others creating intercession for others by simply keeping them in one’s mind.

“Be careful” is not just physically - being careful for and of #everyone in any way is harder. Crying does not help.

But still. It is heartbreaking. I hold them in my heart. And I am so happy to be alive.

 

a bad week

This week has been one of those weeks. 

When your head is almost on fire with rage and upset and distress.

When your heart breaks because everything seems to go wrong.

Bad week. 

Life post my Brain Injury

Fury

/ˈfjʊəri/

noun

noun: fury; plural noun: furies; noun: Fury; plural noun: Furies

1. 1. 

   wild or violent anger.

   "tears of fury and frustration"

   • extreme strength or violence in an action or a natural phenomenon.
     
2. "the fury of a gathering storm"

   
   
3. 3. 

   GREEK MYTHOLOGY

   a spirit of punishment, often represented as one of three goddesses who pronounced curses on the guilty and inflicted famines and pestilences. The Furies were identified at an early date with the Eumenides.
   

   Phrases

   like fury — with great energy or effort.

   "she fought like fury in his arms"

Adjusting to 'Life post my Brain Injury'. Even now, 6 years later...but at this stage, I am [at last] understanding what life is actually about. 6 years has made a lot of difference in the world. And in people. And in me.

Most of the time, I am trundling along, hoping for the best. Moving forward. Hoping that new people that I meet will become friends. Or neighbours. On just people you can speak too when you are working in you garden and they walk past.

But quite a lot of people are not like that any more.

They are about as interesting as having half your head removed. 

As your brain has been totally battered, then perhaps when you start to recover, as you look for help, in small ways, it doesn't really happen.

Because, surprising [for me] a lot of people are extremely unpleasant.

They are not like animals. They do not understand the pack.

Animals hunt their prey by working together with other members of its species. But humans?

They lie.
They deceive.
They scandal behind your back.
They discard you - like rotten fish.

And - such fun darling! They talk about you as if you will never understand what they have said. Because we struggle to grasp things immediately. We have to ask. We need a bit of patience. But that doesn't happen all the time.

Because you are a ''Stupid'' person in their eyes [but they never say that out loud…] - that is what happens when you have a brain injury. Life changes so much.

Small piece of advice, all you who have a massive brain injury; always hope for the best. But never rely on people unless you know absolutely that you can trust them.

In your life after traumatic brain injury, you have to ask for help.

And some times, others are just too busy. A tad distressful. But hey - onward and upward. Right?

 Traumatic Brain Injury. What? And yes - I am rather a bore about this. 😊

Anyone who would like to know what really happened to all those people you know [or don't know] that had a brain 'injury'.

Perhaps you noticed it on the news - in a film...at the bus stop...you look at people who look all weird. All broken. Friends tell you about 'people they know' that had such an 'awful' time. But they are ok now!

Of course they are. Most of the time the facts are 'invisible'. Sometimes the word 'invisible' changes into 'ignoring'.

A lot of these people struggle. Perhaps they can't speak. Or count. Or grasp a fast conversation mentally; or understand in a moment. Or read. Aphasia is very sutle really, unless you ask. A lot of us can't understand numbers. That really so sucks. Buying things is very chuckalicious. Not.

Or no-one bothers to see if they need a little help because asking for something - even a bus ticket - can be very very HARD!!

You who have never had a massive, traumatic brain injury - have a read sweetie pie. Because you CAN read. Try to get your head around the fact that it could actually happen to you...it's a little bit like having cancer. But harder.

And I can assure you - I speak with complete honesty about that. I have been through both.

I will always have the jolly aphasia.
That I can manage. Now.

I have actually stopped becoming horrendously violent. It has taken nearly 6 years for me to actually understand that shooting people is not allowed…heh heh

The interesting change of everything that happened while I was dying of a massive brain injury...it has been hard. But - onward and upward. Forever.

Saying to any of us who have this forever non stop #brain injury, ''but you look GREAT'' - it is not very useful. [note: polite remark by the Sarcastic Moi, right?]. Right.

We need people to understand that our lives have changed.

We are frightened. We are afraid. 😶
Useless.
We feed so awful. We need help - but it is hard to ask. Especially when people are too busy.

We want to find and see our old friends; our family; neighbours; people that we worked with - that they might suddenly come out with: ''hey - we read an article - now we have a small idea of what really happened! Just tell us what is really happening for you now. Can't we give you a hand?''

But that does not often happen - everyone thinks that either they can't cope with dealing with it, or they pretend that we really MUST seem fine…🤦‍♀️

If you would like to read and interesting article, please have a look here: 
Traumatic Brain Injury

Let me know what you think. Could be interesting for me that's for sure.

P.S.: The MRI scan was great this year, as all the aneurisms I have in my head have stopped moving / growing etc. Big yay!! Loving my surgeon…

MRI

Extreme #wind on our hill, scary trees at the end of our garden, ‑1 °c temperature [eee!! Ey?] and yet ANOTHER trip to the Royal Devon & Exeter NHS Foundation Trust this morning. Early. 

Brain scan [MRI]; every year. And no matter what anyone thinks, feels, says - this is the scariest for me all year until I’ve arrive on the other side this morning without having [perhaps literally] a small breakdown beside the horrible MRI creation. Thank god for the amazing people that look after me for this.

Today, speaking, common sense and bravery? Perhaps after the extreme noise in my head, the nervousness of using my same poor #head to make sure I don’t do anything the wrong way. I seem to do lots of things wrong, so my bravery is small today. Hey - onward and upward 

To be honest? That is where I say fuck. A lot - in and out of my head. Not just being jolly. It appears at it’s noisiest and most violent because your head does NOT want to go in there...

So. 9.30 this morning. 45 minutes of complete hideousness. The noise, for me, is possibly almost as incredible as being unable to “behave” as this is GREAT! See? For fucks sake...

I hope it’s still 45 minutes. They help me by telling me the minutes are passing - and how many I still have left. And DO NOT move. 

And those of you who have had this, keep your fingers crossed for me. #scary 

03 - 09 02 2021

This is sort of going backward and forward, as I did a really speedy blog this morning, as I was in that 'shriek' mode. Hospital appointments do my head in [always], but this year has been quite bothersome, to say the least! So - hang in there, hopefully I shall find a way to do this in a proper order. Aphasia is extremely irritating. 

So - I AM still attacking my blog! But February is a very difficult month every year. This week I had my bloods taken for my CA 125 check. Even that it is quite frightening.

Last time I had many sticking attacks on both arms…on the fourth one I did get slightly peeved. But the proper phlebotomist arrived and she took my blood samples and it all went well. So last year I had a massive blue bruise all along both arms. Shocking for most, but for all this time, I have sort of got used to it. I always know that it is useful - so the pain doesn't last long! She says…

AND! Bargain - on my right hand side, the feeling is far, far less than on my left hand side. Woop woop! Thanks for one small good thing from having a little stroke.

This year I was so worried [for an entire week] but for some reason I had the most incredible nurse that did my blood. I felt absolutely nothing!

So that was rather an exciting day - off to the local Exmouth hospital, where our doctors work, plus part of the hospital is a Minor Injury Unit. It's completely different to the doctors surgery that I had in Exeter. This is bigger. So I worried about going. Mainly because I have the CA 125 blood test, and [as usual] my blood refuses to be removed.

This time I had the most incredible woman - she did my bloods, I didn't even FEEL it! I told her to note that my blood refuses to be removed. She did it so well that [and I am sounding a bit bonkers here] I didn't actually feel it - at all?? Great.

But - the best thing. For me anyway - she had obviously checked my notes. And apparently she did work in an intensive care unit [ICU]. So she was so incredibly understanding of how I am. It was the very first time that someone really understood what happens when you have a massive brain injury.

Interestingly, [from this super nurse] it can be so much more worse for the friends / relatives when it happens. Because when you have that kind of chaos going on in your head, you aren't there. At all.

Anyway - in the meantime, one of my fingers has a horrendous nail that has been  a sort of abscess underneath the finger nail for about two years [yes - gross. REALLY gross!]. So I asked her about that as well. I was feeling brave!

And she sorted that for me too! Yay! I have CHOPPED off my nail and send it off to the hospital for testing. It takes three months [and it is pretty gross] as they make a biopsy to find out what is living in my finger nail! Yuck. Times ten.

Last Friday was a little bit worse, as I had to go up to the RD&E hospital for my breast mammogram. 10 years I have been doing that, since ovarian cancer blah blah. So popping up there is usually simple, even when your #brain has broken.

Trying to be sensible and do my normal blog isn’t really very clever with my mind and my brain going into distress. Hence this one being in the wrong place in the cue.

And the word distress… well even that isn’t quite what I mean. Distress has got nothing to do with how I feel - it’s more like I think I’m just making a big drama. And other people almost refuse to understand.

That nurse did make me cry. She was so understanding because she has worked in the place where you are when you have a coma i.e. you have a brain injury or, like me, a total nightmare in my head. When I got outside I was crying but it was a good type of crying.

She did she did not lie and she understood.
Which is very unusual.

Now I have been for my breast check [waiting for the letter in the post - 7 to 10 days] and for my CA 125. Which is a serious check because last year the CA 125 had gone up. Happily last year I had three checks and it had gone back down again.

Fingers crossed. And I hope to be a little more constructive with putting this page together here.

Busy week…

This week is a type of week that I think is a ''Learning Curve'' - about a lot of things. Love it. 🔫

Last week: VERY SCARY!! VERY upsetting.
This week: not SO scary today 🦸🏻‍♀️💪🏻

Last week: I had to make my own map; and deal with my own 'curve' [that word is a lovely polite word right?]
This week: I know exactly where the #Oncology department lives...right next the ''Had Lots of Chemo'' department.

Where I am going today I know the right level, the correct section and again, my head in its mask. 🙀😁

After coming in for so many years I do not think twice. They take really good care of me. No matter what. Even going in is not as scary as last Friday. Yay! And the #doctors, #nurses, #everyone - are #kind.

Fingers crossed for good news later💃❤

#aphasia #nhsheroes
#cancercheck #CA125
#threeoffour #hospital
#RD_EWonfordMedicalOncology
#onwardsandupwards
#cancersurvivor
#braininjurysurvivor

''there are so many people like you…''

So - now I am still trying to create my 'blog'. I think. What IS a blog anyway? Maybe what I should actually say is that I want to try to understand what happened to me on the day that I started to die.

At the moment, I have an #aRt project on a Thursday, copying alphabet animals by our wonderful art chap, Stuart. They were originally done by a woman, Casey Gerard. It’s been very interesting for me.

One thing - I have always had an amazing mind set about life. It's MY life - and it cannot be deleted by anyone or anything other than me. Hence - I refuse to die unless I say so. I have such a sense of humour right?

Recently, someone said to me that ''there are so many people like you with this brain 'injury' Sandhy!'. Hmm. Chuckalicious. Injury?

To be fair, if this does not happen to you - you can never really understand what happened to me, as A: we are all different, B: some things are far worse that one can ever understand. Unless they or you have it. And - hopefully - they or you will not.

It is something you cannot study for. You cannot 'imagine' how we feel. So don't be a smart arse and think you know. You don't. You have an idea.

The best - people who try to find out. Find out from you, what actually happened. If you know. I do not know a lot. Yet. But there are a lot of pages [360 pages to be exact] with all the sensible stuff on it. Things written by nurses. Doctors. Surgeons.

We paid £50.00 for a copy a few years back. But I could not read it. Or understand it. I now have a far better comprehension. And I know how to ask.

I would not wish what happened to me upon anyone. No matter what. When I had cancer, the way of dealing with it and communicating across it - talking to others who had the exact same thing…it was something that I could cope with well.

Having a massive operation. Having chemotherapy - meeting people who helped immensely. They tell you almost exactly what is going to happen. If I was worried, concerned - I had a number to call. If  I was lonely - I had friends to call, and they called me. I changed my life - and moved on. I was so pleased - and so happy. We dealt with it - my wonderful FH and me. Family. Some friends.

But to understand what happened to my brain? Well, I have to understand what happened and then I have to try to get YOU to understand. That is not particularly because of me - I am the same as I have always been in some ways [not all the same as I was before - I never used to lose it…] but I have all ways loved to help others.

Living in different countries with completely different types of people - different things that happen because the places give you different path ways. And the incredible people that you meet - they stay with you for always.

But when people tell me that there are ''so MANY people like you Sandhy''? That type of remark would have made me quite violent a few years back. And that is not a little 'be worried' remark. I became quite violent in the hospital. Through no ones fault - my head needed fixing - my brain and my mind. I needed to come back. But it takes so long.

Incredibly, I was Sectioned. Because I was determined to leave, I was kept in the hospital under the Mental Health Act. And I would not take the 'very powerful medication'.

I have always detested taking medication. And in looking back - I am very, very glad I refused. Incredibly, I cannot remember refusing - I could not speak much. I wasn't really 'there' yet. And not being able to speak - it is possibly the worse thing to happen to you in many ways.

Try to spend ONE day without speaking. AT ALL. See how you go. It is incredibly frustrating.

So I image I swore at everyone, and refused. I suppose not being able to say 'no' - makes you so afraid. You cannot make a refusal, if you cannot say 'no'. Ever.

So - a rather large apology for my beautiful hospital people. Honestly? I was not there. But I am now!

But - this is looking forward. This is after the beginning. Tut tut - as per, I am wandering about in my brain, getting ahead of myself.

I had no way to speak up properly and say; ''NO - you have no idea. You are not in my head. You do not ask. You think [this is also a good one…] that I look fine! And amazing!'' - sorry. But that's quite distressing. For weeks.

The one thing I have learned - getting better takes a LONG time. All our lives we rush and run. We hurry.

I have actually learned to look at what I have achieved - and in the last 6 years I've done pretty well. I think.

days ARE interesting

Days are always quite interesting. No matter what you feel like. It always gets better if you hang on. 

I am still sort of trying to start this from the ‘I am dying’ sort of day, but I am still struggling there. So, you’ll just have to hang on for the very exciting bit [which I can’t remember…grr]

And I am possibly cursing without even noticing. But that is simply my own way to try to cope. Although I think I’ve always sworn. 

Shocking. Oh shriek. 

I do chuckle when people wander around pretending that everything is perfect when they speak and what they say.

Fall over laughing, oh yes I do…

Excellent #aRt last week. And sorting the #design for our last room in the wonderful house. 

The aRt was absolutely exhausting. And strangely enough, I don’t get what they say is: “fatigue” after brain injury. I don’t get fatigue. I get something else. Have to explain that another day. I think [for me] that it is more like needing to make more effort and to think in a concentrating way. No ‘looking at the sky’ for 6 seconds and then carry on - if I do that, I wonder where the hell I am for 5 minutes.

Anyway. We were supposed to draw 26 letters [of the alphabet] - we had 3 minutes to work on each one, which we were copying from pictures on the screen from our ‘zoom’ aRt project.

Very hard for me to take it in within three minutes - sometimes I have to listen more than once. My husband listened to it all. It is hard for me to concentrate on something. I need the time to digest what I am trying to understand. If I don’t stop and let my mind work, my brain causes some unpleasant behaviour, which I could not stop in the first 2 years after the brain injury. But, well - now I am not as bad as I was a few years back. Because now I can concentrate. I could NOT concentrate. At all.

Now I hold onto ‘behaving politely’ - instead of telling people to f*ck off, as I need TIME and patience.

Sometimes I try to ‘get it’ - sometimes I get serious pissed off and run away to dig up the garden or cook something with chicken and piri-piri!

And as the FH said, if I had been picked up immediately, I would have also been a lot more likely to have been back to normal quite quickly. Or even remotely! I will never be ‘normal’ again.

I am seriously thinking of working with the e e cummings effect on my blog. Less thinking…

This week, the aRt project, part 2 of 4. I love going - but I still get stressed, as it is… [no, not embarrassing] - it’s a bit undermining. I have a very, very low esteem. It is very hard to understand in my own head that what I am doing is not rubbish. And it doesn’t matter who says how fab something I did is - it is simply mine. Unusual for me to think my work is brilliant.

But I am now back onto the way of what I’ve always done. aRt. And I shall get there.

without laughter today

''The most wasted of all days is the one without laughter''
e e cummings

Today I have been trying to do the ‘beginning’ of this blog - sort of saying ‘ok, I fell on the bed and started to die’’ or ‘I spent a morning vomiting in my toilet…then I fell on the bed and started to die’’ - PLUS…

I HAVE NO IDEA OF WHAT ACTUALLY HAPPENED. Other than what I have been told. And that sort of sucks, as I am told, then I cannot remember. Then I can. At least now, I can write things down!

As it became the very beginning of my ‘New Life’ it seems reasonably sensible to find out what actually happened from everyone who was there [wherever I ended up!].

So a tad peeved, but I will now be 're-asking'. I thought I could just run along chattering away...no. Not really.

So - in the meantime, that is me at Powderham Castle, telling the world that I and many others have aphasia. Happily, I can speak - it may be a load of tripe, but hey!

I can speak.

Tomorrow - it is my birthday! Please think about sending a little donation for my cycle this year? Raising funds for cancer down at our amazing Force cancer charity.

See here:
​Cycle 55 miles to help beat ALL cancer​

Thanks!