Dear Self

Beautiful poem. Beautiful thoghts.

GRACEFIFTEENTEN

Dear Self,

I am sorry for the times I tried to be somebody else

I’m sorry for the days I didn’t put you first

When I saw your exception as a sickness

And how I doubted your majestic strength

Dear Self,

I’m sorry for shedding those tears

I’m sorry for denying your presence every now and then

Making up unwarranted excuses for your uniqueness

Mainly because you don’t fit in, you are different

Dear Self,

I’m sorry for disregarding your priceless worth

I’m sorry for making you take so much

I shunned you when their attention I’d won

Shushed you until from a whisper, you became voiceless like the ‘k’ in knob

Looking back now, does it even make sense?

Looking back now, everything was pointless

I acknowledge my mistakes from the onset

I beseech you therefore, for your divine forgiveness

Making a solemn promise of a changed mindset

To…

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Last night I fell off a cliff

Last night I fell off a cliff.

Not waving, not drowning,

Just falling, helpless,

Through a space of nothingness.

Last night I fell off a cliff.

I think I felt it coming,

A growing vacuum,

Sucking the life out of me.

Last night I fell off a cliff.

I sat on the bed side,

Held my head, and

Breathed in silent despair.

Last night I fell off a cliff.

And in that falling I was

Nowhere. I was

Neither here nor there nor anywhere

Last night I fell off a cliff.

I didn’t dream. Just wandered

In and out of life, the past,

The mistakes, the opportunities,

The loveless childhood of fear.

This morning I lay silent and gathered myself.

I’m on the path again, looking out over

The sea and the fields and the glistening grassy slopes,

And I am alive still.

This is how it is. Not often, but unavoidably on a repeating loop.

Our brains are damaged. We have lost our stamina and our resilience. We are irrepressible and irreversible. We laugh and we cry. Torn into pieces which we try to sew back together.

For how long?

Dementia? No, you can still talk…

More examples of clinicians’ stereotyped judgements!

More people living with diagnosed dementia floored, hurt, lost.

What’s this all about?

Yesterday I heard another awful example of a clinical expert in neurology telling someone with a dementia diagnosis that they should have a carer/supporter with them, that they were speaking surprisingly well, that they were – yes – SMILING. So really, they didn’t look like they had dementia!

Memory service clinicians don’t do this. Mostly, they get it. I mean, otherwise, why would they ever diagnose anyone still standing and speaking.

Oh, and smiling.

Which has dementia?

Psychiatrists and Neurologists may not get it. They tend to see extreme, severely ill people. I remember I was once told by a neurologist, when I had chronic fatigue syndrome… ‘look at those people in the waiting room. Do you really expect me to do anything for you?’

So if you are walking, talking, dressing…you are fine. Dementia? Nope. Course not.

There’s a certain consultant who has frequently made these judgements in public. Often about people he has never met and assessed. He has other theories, but his attitude boils down to…if you can talk, you haven’t got dementia.

There may well be many causes of symptoms which mimic what we understand to be dementia, causes which are not yet understood or researched. But the fact is, if you have the symptoms you have something wrong, and in the absence of other medical causes it is highly likely to be brain disease.

We say…time and time again…disease starts somewhere, and ends somewhere. In between, with our brain disease, there often are decades of decline. Early diagnosis of symptoms means we are getting diagnosed while…wait for it…we can still talk and walk and smile.

Dementia is not just the end stages. It is the whole journey. And for goodness sake, most of us have to wait years to be taken seriously enough to get assessed.

Depression…the usual starting point. Easy to say and write. Prescribe pills. Go away.

Does depression cause imbalance, falling over? Does depression cause loss of words, hypersensitive hearing, loss if inhibition?

Probably yes, here and there, occasionally. But add all the symptoms up, listen to the patient’s story, do scans and tests…don’t assume anything just because it’s the easy course.

And for God’s sake don’t, years later, change the diagnosis from dementia to some other condition unless you have absolutely compelling evidence.

Can you imagine how it feels to have learned to live with dementia, the label, the self doubt, the anxiety, for years, and then to be told, oh no, it’s not! But we’re not sure what it is.

A friend was told exactly that last year. Go back to work. There’s nothing wrong.

And yet he still had the same distressing, disabling symptoms of five years earlier.

Lost his benefits. Had to shout very loudly to get re-assessed. In fact, the memory service here stuck by their original diagnosis. It was a bigwig hospital in London that changed its mind.

We, the poor old punters, have to take what comes our way and live with it.

Clinicians who don’t listen and think imaginatively just go home and forget.

The stories I hear fill me with sadness and anger. Sometimes despair.

Not only do we get almost no support to live with our terminal illness, we sometimes get destroyed by thoughtless egotistic clinicians.

Stop screwing with my brain

Jiggling and flashing screws with my brain

Do you read newspapers online?

Shropshire Star, Daily Mail, Express, Mirror, and many more.

(I don’t know much about Telegraph and Times as they are paywalled.)

They all depend on online advertising for revenue, and they increasingly cram ads onto their pages.

You open the site and it takes twenty seconds to settle, as the ads fight for space, up down, across, jiggling, flashing…

While you just want to read the – now – small bit of news text. It moves. It disappears. Boxes open in the middle of it.

Which is news, which is ad?

It is totally mind boggling, disorientating, annoying and angrifying.

And actually it stops some of us ever returning to them. Why would I choose to annoy myself trying to decipher news and weed it out from ads and privacy notices and subscription offers?

It screws with your brain.

It’s bad enough that every time you visit a website you have to consent to cookies, or check your settings, or something else.

These annoying and often unnecessary interferences are driving us away. They’re losing our business.

On television there is increasing use of quick cut, flashy editing that is so fast I cannot process it before the next appears, and so on. Combine this with the music noise and, well, I am screwed.

I hold my hand in front of my eyes. I mute the TV. And then I switch over or off.

Radio 5 live is the same. Constantly blasting jangly, quick cut ads and trailers for their own station! Insanity.

Now, ok, I am 69. Dismiss me if you wish. Just becoming an old fogey fart who likes to complain. Can’t keep up.

Yes, Yes and Yes.

But (as ever, there is a but) it is not really age. It is disease. Brain disease. I literally (and I distrust that overused word) I literally cannot process these swift, sudden, unexpected changes in sight and sound…

Now I am happy reading and subscribing to The Guardian. If I were someone else I might pay to read the Torygraph.

The Guardian presents itself in a relatively simple, conventional way which is fairly easy to navigate. The Torygraph appears to cram a lot of story headers onto each page, in small, serif print which us a bit hard to read, but it does not jiggle and flash like red tops and locals.

So, what is my point?

It is that these media outlets which are taking over the delivery of ‘news’ online are NOT dementia friendly. Quite apart from the actual content, they are making the lives of hundreds of thousands more difficult. They are barring us from reading news and background and features…because we cannot process their stupid, annoying, eye catching, eye defeating, jiggly, flashy images.

And if their advertisers realised this they might think twice about wasting their money. We, and many others with healthy brains, will not be able to decipher, remember and respond to their ads, and will just give up.

Please, please stop this senseless descent into a Hell of flashes, jiggles and confusion.