Clumsy!

A new and particularly irritating part of my condition is being more and more clumsy.

Is that normal for dementia? I have no idea because there is NOTHING out there in the way of support for sufferers.

A heap of resources exist for carers, yeah I get it, they are the ones who really suffer in the end, but meanwhile, WHAT ABOUT THE SUFFERERS???

Why the hell can’t I find anything useful about this condition and what to expect from it?

When I say clumsy, I am not talking about just the odd mishap. I break things unintentionally, knock things over,  crack my toes, knees and shins on objects. It is becoming more and more annoying.

My typing is deteriorating more and more and my short term memory seriously sucks now!

I am still getting out, still producing videos, photographing and filming. That seems so much easier than doing things that involve typing.

The website update that I have been working of for 3 years PLUS, is in its final stages but even though I am almost at the end, I am finding the last bit SO HARD to finish.

My emotional side has been shut down and considering that I have always been very emotional, this was a difficult thing to do. It was quite deliberate and calculated but I see it as the only way I can deal with difficulties in my personal life.

It is funny how the people who say they love you can often be the ones that cause the greatest amount of grief.

I don’t want to go into details, I don’t think there is much point anyway. What is done is done and cannot be undone.

I am becoming more selfish. I spent a VERY LONG TIME trying to hold everything together and in the end I had just been wasting my time. I ‘get’ that all of us are in part responsible for the difficulties last year but my real feeling is that people will, in the end, do what is best for themselves and are happy to knife anyone in the back if it suits their agenda.

That is now my new ‘take on life’. I used to spend almost every waking moment trying to do the best thing for others so now I am trying to do what is best for ME!

I know my time is running out and I am not going to spend it dancing to other people’s tunes.

My intention is to take the path of least resistance but at the same time, do what I want to do. Let’s see how well that little plan plays out in the end….

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The real story behind my fight to stay online

Well I am still here but life certainly isn’t getting any easier.

I have spoken before about the websites I run and part of that was my YouTube channel, where I film things that add to the main website.

https://www.youtube.com/user/mgglasby

Until recently this had been slowly gaining ground and was starting to make up for some of the losses on my main website where Adsense has been plummeting like an airliner with all engines shut down.

Last month (Jan 2018) I, along with thousands of other small YouTube creators, got a lovely little message saying that we were about to be kicked out of the ‘partner program’ because we don’t have 4000 watch minutes per year and less than 1000 subscribers.

I have been fighting to bring those figures up, but a month is simply not enough time to get them up enough, so another source of funding that I was relying on seems like it is about to dry up.

I have been slogging away for about 8 years and have always had the hope that one day, the work I have been doing will be ‘discovered’ and things would turn around.

I write online books as another way to try and fund what I have been doing but nothing seems to ever take off.

There are no grants available for individuals, commercial businesses aren’t interested. Government, apart from DPaW, has completely ignored me and with my brain issues taking more of a toll on me every week, I am just about to give up and walk away from all of it.

My main website has been doing better and better. More hits, record numbers of click-troughs to adverts, but income from Google Adsense has plummeted from close to $300 a month to around $50.

Over the time I have been using Adsense (plus all other funding methods I have tried) I have received a little over $10k. Sounds good right? When you look at what it has cost me to keep everything going, the story isn’t anywhere near as rosy.

Expenses, including vehicle repairs to our expedition vehicle, upgrading cameras and equipment, paying for web-hosting and organising expeditions have all cost in excess of $19k. That is $9k that has come directly out of my own pocket just to keep everything online.

Every cent we have been able to get via our PDF book sales, advertising and donations from kind supporters has made a difference. Now that our funding is drying up, there is just no incentive for me to try and keep going.

I struggle every day with the problems my dementia is creating. All it takes is for someone to talk to me while I am working on something, for me to completely lose track of where I am. Sometimes I can get back to working fairly quickly, but other times I am just lost.

I wanted to leave something behind that was really meaningful, I want to contribute for as long as I am able to, but having the rug pulled out from under me by greedy big business is just heartbreaking.

To be honest, I would be lost without having my website to work on and I will probably end up going down-hill faster, if I do walk away from it but to see Google posting thousands of adverts on my website for virtually nothing and to see YouTube take my other tiny income away but continue to place adverts on my content so that they can continue to make money, just disgusts me.

I haven’t given up yet and I am still fighting to get the required figures on YouTube but if I don’t get there, I just don’t know where that will leave me.

 

Malaise

While some around me continue to stay in denial about my condition,  I  slip further and further into it.

Everything now is an effort.

Even getting up the motivation to come on and post this is just so difficult.

I do my best to put on a brave face and just get on with life but really, I just want it to end now. I have had enough of trying, enough of fighting this and enough of failing at just about everything I do.

I am TIRED….

DON’T ADD TO OUR STRESS!

The absolute WORST thing for my brain now is stress. I just cannot take too much of it and if I get too much I simply freak out.

If I am already stressed then adding to it will end with unpleasant results.

This is a message to anyone caring for those with similar conditions to mine. If you see the person you are caring for is already very stressed out, then don’t do anything to add to the load they are already under.

 

Losing Interest

I am struggling to maintain any sort of interest in life and the things around me. Is this normal for people with my condition or is it just me?

My father stopped reading after being a prolific reader, he seemed to lose interest in things too.

The trouble is, I don’t know if this is a symptom of dementia, or if it is just a malaise brought on by the recent awful events in my life.

I feel like I just want to sit in a corner and wait to die…..

 

Changes in behaviour

As this thing progresses I feel less and less like me.

I have never really been a saint when it comes to swearing, if I was mad enough I would certainly lapse into using the ‘F’ word and a few other choice expletives but these days it doesn’t take much to set off a bout of bad language.

I have always thought that the odd swear word does no harm if it is used in the ‘correct ‘ manner. It emphasises a negative feeling and can be effective when used in moderation.

Unfortunately I now tend to swear a great deal and even though I wish I did not respond this way to what is usually a stressful event, I don’t seem able to control it anymore.

It seems to be an indication of a loss of control in general which is a worry if it starts to expand into other areas of my life.

Unnoticed

I was one of the many unnoticed
I passed through, barely making a sound
I lived life and I loved in my own way
and I fought to hold on to my ground

I tried hard, to be good, to be decent
but I didn’t live up to my dream
I fell short, many times, and I tell you
sometimes life made me want to just scream

I wasn’t that special in most ways
and I didn’t stand out in the crowd
and boy I can tell you that some days
I felt just like crying out loud

They told me that if I worked harder
I would reap the rewards in the end
but they lied and I wound up with nothing
but a trickle of money to spend

I watched as the fat cats got richer
How they conned the whole world with their lies
and the dull and the ignorant let them
as they pulled to wool over their eyes

And the world just descended to madness
and hate became higher than love
and war was waged purely for profit
as the bombs they rained down from above

We ignored what the world tried to tell us
about how we were wrecking it all
But our greed and our pride overtook us
and we never suspected we’d fall

When a few tried to raise up their voices
to warn us of dark days ahead
The greedy white men in their limmos
quickly knocked all dissent on the head

In the past there were plenty of lessons
that we could have easily learned
But we sold out our planet for money
and we burned and we burned and we burned

And I went away still unnoticed
to the stillness and dark of my grave
leaving only regret for a planet
that we could have easily saved

(Well at least I haven’t completely lost the knack of writing these things).