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%

Struggling already

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#day06

Oh yes. Already I am trying to NOT do this blog. If I had a secretary I’d simply waffle down the phone and watch my words appear in the local newspaper 📰 each day. But hey - at least I’m honest when I do my little teeny social media attack. Mass communication. Broadcasting the info that passes through my Incredible Brain. Pros and Cons. 

Getting carried away in five different ideas. Ten times a day…

To try to stop, so I’ve started! Yesterday went into race mode. Today is our Crimbo lunch, all the Moving Tribe art will be there if they are well and it’s wonderful to get together to celebrate. We are alive. 

I love that word suddenly too: race mode… who on earth says that, ever? Anyway. Running which gives me fatigue. 

Fatigue makes my brain angry. It has taken me a VERY long time to understand the difference between fatigue and exhaustion and tired.

My brain forces the mind to over compensate. I wonder if somewhere, someone has that type of brain that actually tells you things. Instead of just wandering of, deciding things with asking first.

Rage. Hmm. 

Trying to look forward; presents were the hardest . I want to be a millionaire. Whose assets are worth everything and nothing. Money can be handy, but actually finding the thing you wish for is harder. But! I battered that mind and finally won. If my friends don’t like their pressies? We’ll flog ‘em for money for art ✏️🖌

Last night I built a large salad, a bowl of baby potato’s with mint - astounding how my brain remembers how to do a “proper” salad. And we are doing our lunch in winter. 😂🥗 

One of my mates is doing ALL the cooking! Roast spuds, turkey - you name it, that’s what coming. We are taking Christmas spirit to all- not what you buy. What you bring in your heart.

Today one of my beautiful friends will have a celebratory drink from us all. He is not in the room, but he is in our hearts. At the moment I am struggling with people who are leaving, piece by piece. Family. Friends. 

So holding on. With rage.

P.s: I found the ‘Justify’ bit for the paragraphs - oh so chuffed….✍🏻📖

 

Tenacity…

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#day04 

#blogger is in tired mode today 🤣

 😳

#keepingtrack 

Third day!

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#day03

It is raining. Non stop. And windy. Totally tedious weather. So, here I am, in the kitchen basically wandering about. And wondering. A lot.

For what I was, what I now am, where I am going. Too many things battering about in my head. Worrying about silly things - spelling / confusion with words / rereading 🙄 etc. 

Blogging. Hilarious, considering how long it has taken me to be able to do this. Again. And [genius!] no one needs to read this. No one. Unless they want to. Last time, with cancer, I was more logical - I.e.: if you don’t wish to know, leave. 

And I knew I was going to get better. And move on. With my #newlifestyle? It is going to be with me always. Forever. #ffs

In the meantime, trying to find a way of putting ALL my #stuff in a more logical format. A sort of formal way of thinking would be really useful. 🧠🦸🏼‍♀️

For anyone who has the after effects of a brain injury, and has aphasia as ONE of the after effects, and you have no one to listen to your questions [when you ask it 55 times and still can’t comprehend it? They sort of run away] - 

Headway - the brain injury association are in the HealthUnlocked forum. 

Impressive. 👍🏻🫵🏻🙏🏼

After 8 years it is still there for me - an email that appeared every couple dof months but I could not read them for a long time. Because I went on there coping with ovarian cancer, I am still part of some of the forums. But not with Headway. 

That was in 2008. I met many other women who were looking for chats and help. And I still talk to those wonderful people whom I met through HealthUnlocked 

We all had blogs, no matter our age, our background or anything other than the fact that we wanted to help one another to survive. 

Coping with cancer when you can chat on a forum is very useful. And it’s easy to be informed by double checking any research that is passed around.

Trying to chat / check / ask for help and understand after a brain injury? Very, very hard. And that is exactly what I mean when I say I am re-learning. How to comprehend. How to understand. How to assess and reappraise. How to remain calm instead of allowing my brain to crush my mind.

And sending the message to all; a brain injury NEVER goes away. 

Aphasia never goes away. 

Determination is the best, as even now, after 8 years, I am still moving forward. Finding humans that try to understand how extremely difficult it is to change you entire life - and how it takes so long.

And how many simply walk away.

This chuckalious #blog of mine - it is speaking for all who cannot speak. And allow others to try to learn.

#1in59 #brainbleed #SaH #artist #invisibledisabledartist #riottospeak #aphasia #arttherapy #artlife

Day 2 - see how I go...

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#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. 👩🏻‍🦳👩🏼‍💻👸🏼

Blogging IF I can - trying again #8years

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#day01

• #hoovering rugs and furniture moving about

#osteoporosis #osteoarthritis #chemoaftereffects
• #washingmachine 
• #brekkie break - useful tablets excellent toast 
• #scrabbleart • #facebook • #instagram #bullshitquotes #toomuchtime

• finding the National Trust member card

#1hour

#braininjurysurviver #creative #art #arttherapy #speakforall
#watchthisspace #chaos #christmaslunch #braveheart #movingforward #iam #braininjuryrecovery #aphasiasucks #rage #cleaningthehouse #keepingtrack

remembering to clean my teeth

trying not to hit my head - Visual Field defects / disorienting

At last - I can do #laracroft 

Having #aphasia - being utterly boring...

If you would like to really understand another persons extreme change in the mental, physical and lack of confidence [ha - rather understated...zero confidence], see my own ‘report’ on me - about having aphasia. It was so much easier to tell people all about ovarian cancer. Because I could think comprehensively  - I employed humanism. I loved everyone.

In my mind, people should embrace other human achievements in education, classical arts, literature, science...all the things that I loved. And still love. For others - not simply for yourself.

I could read. Once. I would understand in a millisecond...chatter about anything. Book, design, countries I went off to work in and lived in - people whom I knew, understood and loved. Or at least emphasised. Giving others importance. Making other peoples ideas more clearly defined. Argue. Discuss. I loved it. And the people I met love me back.

Firstly - LOOK IT UP! It is not something that we ‘get over’. We get a bit better. If we are lucky. Myself? Hmm.

So, I have that, plus [tada] a big fat interesting chaos inside my marvellous head. There is the Mind. And, the is the Brain. 

My cunning plot is to make sure that when I try to use a word, and I don’t “understand” or “remember” the word [but I KNOW I know that bloody word....] I make sure that I get that word out of my mind, into the “I Refuse” #brain. 

Then; repeat. All day. 

Today I suddenly had the word: eTHa. And I knew it. But I couldn’t definite it. Or spell it. 🤬

It is a very interesting word. A common activator of Thiocarbamide - containing drugs acting on different Mycobacterial targets. Things you learn at high school. And when you have interesting drugs that you take for “mental Anything attacks”.

It used to be a chemical compound. Ethanol. Volatile. Definitely volatility in my that it ‘goes away’. Anyway - another day with many things happening...another word slapped onto the aphasia, and happily put back in my mind.

#onwardandupward

Happy anniversary Sandhy!

I died on the 19th of May, 2014: I suffered from a subarachnoid haemorrhage in my brain - called the subarachnoid space. The space was filled up with blood.

It was everywhere inside my head. My neck. A lot of blood. For over 15 hours. Dying. Quietly. 7 years ago now.

I had a horrific, unimaginable headache that pushed me into a coma. I never even knew. With those type of headaches, no one remembers them. They are beyond saving sometimes.

But I helped my own survival - I left the building. Waiting for help.

My brain has 6 aneurysms. One [the worse one] of the subarachnoid haemorrhage area was clipped. The other has been bandaged. The others are still sitting in my wonderful head. Fingers crossed. Thank goodness they check it every year.

I have a titanium plate in my head. I hit that head a lot. My mind does not look or see. It waits for the brain to tell it. So - a lot of painful bangs on my poor head. At least I don't cry every time now. I can used the mind a little more. Better than hoping someone will stand in front of me all the time - I would probably be rather violent. I always try my best. Always.

But sometimes? No one understands. And at last, I understand that. I understand that people think I am stupid. Slow. Unattractive - such awful lack of self now…

Anyway. The subarachnoid haemorrhage and the Brain went on causing quick death - so I also had a minimal stroke 4 days later.

Today, on the 19th May 2021, I am still here.

My FH went to work.

Today I spent the day alone.

Because I remember this now. Piece by terrifying piece. It has taken a long time - and it's hard.

But - I am still here. And my FH is too.

So! Happy anniversary to my FH - and: happy anniversary Sandhy! You have survived three times now - once through ovarian cancer. Secondly, having a 4 hour operation after 15 hours lying on the ground in a coma. Waiting. And third was the bloody stroke. Not being able to run. More help in my head…but it did wake me up!

Surviving. 

''The face surrounded by lots of hair. The face without Bells Palsy – the face before all this BS cancer stuff happened – and to think I was complaining then!!

The old face I had was actually rather a nice one actually. Ah vanity vanity...''

           

       

patience gains the day...

This week my #brilliantbrain found a fabulous 'new' word...'retrospect'! 

Getting ''new words'' is a rather interesting thing for aphasia people, as we all know, all these words were in our brains initially, all our life. Until I had a brain 'injury' [that word really is irritating]

But with this? Ha. Half the time, we can't remember our own names. And NO...this doesn't happen to us all 'as we get older'. When people say that? Not too clever.

Something that I have not been capable of doing for 7 years. Capture the words that I have sort of lost. It just doesn’t stop moving forward with the things that are inside my head - but hidden away. Softly, softly, catchee monkey....

Last night I watched 'the Officer and a Gentleman' - a wonderful old film with Richard Gere and Debra Winger. And so many memories popped into my head from that time in 1982! 

And I am SO happy that even NOW my #mind and my #brain STILL recollect things that I thought I had lost.

Lord Baden-Powell also said: "don’t flurry; patience gains the day." Sometimes it is hard to proceed 'cautiously' in order to achieve you own objectives. I am horribly impatient. I certainly 'flurry' - a lot...I have always thought that life is so short! So many things to see and do. So many wonderful people to meet. 

And yet. After ones life changes - there are so many people who are rather uninteresting - they distress others in their own thoughtlessness.

And like doing all the things you did before the horrendous brain operation. Sometimes I feel I have become lost. 

But I am very impatient. Sometimes angry. Despairing. Sad. Violent.

Other days? I am the happiest person in the world. 

#gettingbetter #braininjury #survivor #aphasia 

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.