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When Beauty Isn't Obvious (Or - Why I Really Wish We Could Photograph People's Personalities)
5/17/2018 6:34:35 PM
This might shock you but I really want to do a photography exhibition with a difference.  The title would be "My Gorgeous Friends".  The walls would have photos of those of my friends who I honestly think are the best looking.  You might be surprised to find that most of the people in the photos would not be considered to be "classically" good-looking in the physical sense.  Although - when it comes to physical appearance I can think of at least five of my friends who could double up as catwalk models.  Especially if I can talk one of them into wearing a suit again (the first time I saw them in a suit I wondered how a GQ model was qualified to officiate at a wedding service in a church).

Most of the Motley bunch of people in the photos in my exhibition would be the ones who could best be described as looking "lived in" with their lives showing in their faces.  A couple of people are coming to mind as I type this.  For example - the ex-teacher who has always treated me kindly and encouraged my love of writing, the friend with the "interesting" accent who said to me last time I saw them "sit down - you are wheezing" (I hadn't wanted to say anything about feeling puffy at that point), the seriously gorgeous and extremely talented friend who makes me feel I am as good at writing as they are (even though I am nowhere near as good at telling stories through writing as they are (and their use of both music and their voice to give life to their words could make me seriously jealous of them if they weren't such a caring and kind Human), the human who has helped me more than they will ever know (even when I was annoying them to the point of them never wanting to speak to me again) who has turned into two very good friends of mine - they will definitely know who they are from that description, and the two ladies who are filed in my brain under one name because of the "Double Vision" incident when I first met them.  There are a lot more descriptions I could share with you.

Every single person whose photograph would appear in my exhibition has got one thing in common.  They have all shown me kindness and generosity (sometimes when I didn't deserve it).

You see - I don't judge people on how they look on the outside.  Instead I think the truly gorgeous people are the ones with gorgeous personalities who take time to make me feel like I am important to them when we share oxygen or communicate via text or social media.

I remembered a line by Martin Luther King (which I am going to deliberately misquote slightly) "I have a dream about a day when people will not be judged by their physical appearance but by the contents of their character".
I Think I Have Somehow Managed To Join The Ranks Of The "Experts" (Or - The Day A Brainiac Made Me Feel Clever)
5/17/2018 5:56:30 PM
I suppose you could say I had had it coming for a long time but I kept thinking people were seriously mistaken every time they tried to tell me I am good at writing.  Actually, that was their biggest mistake - telling me I am good at something is not advisable unless you want me to wonder what your motives are.  Showing me you think I am good at something, on the  otherhand, will get me to believe you without question. There have been too many occasions in my life where someone has said something nice either to me or about me but their actions have said the complete opposite.

The Brainiac who I can credit with getting me to finally believe I am good at writing and blogging did have a couple of sidekicks who have also (on different occasions) proved that they think I am good at writing - mainly by singing my praises to other people in my earshot and giving what I consider to be solid reasons.  The fact that the sidekicks in question are two people I greatly respect in their own fields is beside the point.

There is one other piece of information about the aforementioned Brainiac which might explain why they were the one who finally convinced me that I might be good at this writing lark.  The Brainiac recently got a "Title upgrade" whichw happens to go very nicely with a PhD in a subject which I am passionate about - "Community Media".

The location where I was convinced was a place which I wouldn't usually set foot in during daylight hours (due to me not having any A Levels).  I was at a kind of "Open Day" which had been badged as a "Community Media Cafe" at De Montfort University, in Leicester.  This was partly a showcase about and a celebration of the "Community Media" course run by the University.

So - how did a Brainiac with a PhD convince me that I am an Expert in writing and Blogging???  (Aren't I the one who is frightened of the Highly Qualified???)

Simple - treat me as an equal and allow me to talk about blogging as part of a podcast involving at least one otherbperson who I respect as a very good writer themselves.

I almost felt sorry for one of the Brainiac's sidekicks when they made me wish I was brainy enough to go on the course myself.  When a University lecturer tells you that they actually want to mark one of your blog posts it really makes you feel fuzzy inside.

Don't get me wrong - I still think there are people who I know who are a lot better at writing than I am.  I am certainly not going to start blowing my own trumpet and informing the world that they should listen to me because I am the newest Expert on blogging and writing.  If you thought that was going to happen you obviously don't know me and the fact that I prefer hiding in a corner whilst everyone else makes a great big fuss.a
Why Living Is Sometimes More Useful Than Talking (Or - When Experiences Really Help You See Life Through The Eyes Of Others)
5/17/2018 5:20:23 PM
Recently I have had some strange things happening to me.  I have been finding out that sometimes we can share experiences of things without sharing the actual experiences themselves.

Two things really brought that into focus for me.

The first was reading a book by a very good friend of mine on the subject of his experiences of depression and Obsessive Compulsive Disorder (OCD) and finding startling similarities with the challenges I face due to my sight.  "A Year In Melancholia" by Julian Harrison, is a diary of a year living with his Mental Health issues.  It is honestly the best book I have read on the subject of Mental Health.  It is also easy to read because it is as though you are going through it with him and he explains things without treating the reader like an idiot.  He doesn't get technical either.  I would, however, advise you to have a box of tissues handy when you read it - parts of the book were just heartbreaking (especially when Julian learns his son has developed OCD and wonders what would have happened if he had had the sort of help his son is getting when he was his age).

I suppose you are now thinking that Depression and OCD are Mental Health issues whilst being Registered Partially Sighted would indicate you have a physical disability???  You are correct.  But the side-effects can be exactly the same - both depression and serious sight problems can (and do) make you want to crawl into a corner and escape from people sometimes.  (Especially when your sight problems have made you feel like a performing seal for some reason.)

The other thing which brought home the idea that we can share experiences without actually sharing the experiences themselves was an event called - funnily enough - "Shared Experiences".  This was one of my favourite "safe space" kind of events.  The subject was "Sexual Assault and Abuse".  I don't speak about it but I was actually the victim of a sexual assault  in my last job (it was by a window cleaner).  There were two very brave (and I am not using that term lightly) ladies there who were both from Asian backgrounds.  They certainly educated me on the way that sexual assault and sexual violence are treated by their different communities - and I found it truly horrifying.

The main "takeaway" I got from that evening is - even though my experience of sexual assault was extremely mild compared to those two (and the other people who spoke) - the feelings they were describing (as in the shame, the feeling it was their fault, etc) are not unlike the feelings I had when I was bullied at school.  You may or may not know I came extremely close to killing myself during my first year of secondary school due to being severely bullied.

So, next time someone tells you about something that has happened to them which you may find difficult to relate to, see if you have felt those same feelings even if they were from a different event in your life.
Just Call "Dynarod" And Be Done With It (Or - A Health Update)
5/17/2018 4:40:33 PM
There are times when I really wish I wasn't me.  These usually occur when I come up with brilliant ideas for blog posts that I can entertain (or bore) you with on here - usually because I can just about guarantee that me thinking I have got great ideas for blog posts will mean I start to experience what you might call minor complications to my blogging abilities.  As in - something happens to ensure that I am held captive (and most probably given some half-explained bad news as a result of my captivity which starts my head spinning for at least a week after the event).

I suppose one good thing has come out of my most recent hospitalisation.  At least now I know that at least some of the Departments who are looking after me are working together.

I suppose I should start at the beginning (and explain what I mean about calling Dynarod in).

A few weeks ago I should have had four appointments in the space of two days (in fact, two of the appointments were supposed to be withing 40 minutes of each other - in two totally different places).

The two appointments I did manage to get two were the ones which combined to get me admitted back into hospital after the second one.

The first appointment I managed to attend was for a CT Scan which had been ordered by my Oncologist.  The second appointment was with the Pleural Effusion crowd to check my left lung hadn't had a refill of fluid.  Well, apparently the left lung had not had a refill of fluid but my right lung must have been feeling left out because it turned out that my right lung needed to be drained of fluid.  That meant another stay in Ward 29 of Glenfield hospital.  (It also meant the drain was put in a veryawkvery place - between the ribs just where the muscles are which allow you to bend the top half of your torso are).

I was also introduced to the most effective painkiller I have ever had (and - if you know me - you will know I hate taking painkillers).  Oramorph (otherwise known as liquid morphine) is brilliant.

Unfortunately I was also introduced to the most painful procedure I have ever had - putting talc in to seal the lining of my lung in an attempt to prevent further leaks.  So far, the talc appears to have worked.

However, the news I got in my Discharge letter wasn't exactly the best news I have ever had (nor was it put in an easily understandable kind of language) - which made me definitely not want to see my Oncologist for quite a while.  The letter informed me that the tests on the fluid they had drained showed something which may be a progression of the cancer or it could be something else equally bad.

A week after I came out of hospital I saw my Oncologist who actually kind of put my mind at rest whilst scaring me at the same time.  Yes - the tests did show the cancer has spread to the lining of my lungs but no I am not going to have Chemo yet.  There are more drugs to try before that.  So I am now on Letrozole instead of Tamoxifen.  It took a week for the Letrozole to kick in properly.  Just enough time for the next dose of fun to start.

I don't know if you remember but there was some fuss about whether or not I had Asthma before I had my left lung drained???  Ladies and gentlemen - I have had confirmation that I have in fact joined the ranks of the Asthmatics!!!  I didn't like the test they put me through to get the result.  Well, that is not strictly true - I didn't mind the actual hospital-administered test itself - it was the test involved in stopping my inhalers for 24 hours prior to the test, taking my tablets 45 minutes earlier than normal (to give one time to work through my system before I left home), and get myself to Glenfield hospital by bus on my own without conking out.

Anyway, that is you lot up to date so far.

I know I keep saying this but I honestly appreciate your support.
You Don't Have To Be A Campaigner, Etc, To Make A Difference (Or - When The Disabled Have The Most Ability To Change The World)
3/30/2018 9:12:15 PM
You know something?  It feels weird whenever someone tries to make me out to a campaigner, an activist, or a teacher on the subject of sight problems.  I wouldn't class myself as any of those things for various reasons.  I am sorry but – to me they all have various negative connotations.  So how would I define myself???  Someone with sight problems who tries to educate people via writing about the challenges I face.
 
I know this blog probably wouldn't win any awards – I am quite surprised when people tell – not only me – other people how good they think my blog is in my earshot.  These people are all people I admire in one way or another for the work they do in their own area of expertise.
 
Recently I appear to have started to branch out a bit – without making any conscious effort to.  I have taken part in discussions on Twitter with an ever-revolving group of Police Officers (the discussion group is called “WeCops”) where I appear to have woken some of them up to the issues someone like me faces – as well as how they can alter things to make life easier for people like me.  Put it this way – I was quite astonished (and a bit annoyed) to see a video clip of a new Police car with its blue flashing lights going.  There was no sign of the annoying Alternating Flashing Headlights when the blue lights were flashing.  Why did this video annoy me a bit???  The car was not one owned by Leicestershire Police (I think it was Greater Manchester Police).
 
The most exciting thing I have done though involves a publishing company run by two friends of mine (as well as something else I am planning to do slightly separate from that but along the same lines).  Cynefin Road (the publishing company in question) publishes a free e-zine which I have contributed articles on various subjects to.  This time I did something a bit different – I submitted a suggestion for a topic.  I was pleasantly surprised when they took my idea up as even I admit it is a tricky subject to deal with if you don't want it to get hijacked by the well-meaning “sympathy” brigade.  The subject was (Dis)Ability.
 
I submitted a poem (which I will share with you in a bit).  The poem almost wrote itself in a way.  The first lines came into my head without me thinking about them.
 
Although it is primarily about my experiences of my sight I have shown it to a couple of my friends - who have other disabilities - and they said that they recognised the feelings in it.
 
I am very pleased that – not only are Cynefin Road going to publish it but it is also going to appear in the next edition of “Choice” Magazine which is published by the great people at LCiL.  To top it all off – if I am healthy enough (and the only two things which would stop me are another trip into hospital and/or my expiring full stop) I will be reading it at the “Choice UnLimited” Roadshow at the Tigers Ground, Welford Road, Leicester, on 10 April 2018.
 
For those of you who either cannot wait or cannot make it to the roadshow – don't worry – it is available below for you to read.
 
I am the forgotten, the ignored.
Please allow me to introduce myself,
I am your friendly local afterthought.
Never complaining as much as I probably should,
Only because I know you are so easily bored.
Trying to make my way through the neighbourhood,
The Manor of which you seem to have styled yourself as Lord.
 
Someone once said to me,
"It's your sight - it's your problem".
They don't understand so how can I blame them.
I can only hope to educate and make them see,
How they sometimes make life extremely difficult.
So much so that I had to grow up long before I became an adult.
 
My natural world is blurred and fluffy.
Put simply - without my glasses I cannot see clearly.
Even with them on I sometimes have to pay very dearly.
Grocery shopping can be a nightmare,
And when walking in the road I have to take great care.
 
However, and I mean this most sincerely,
Be very careful how you treat me.
I may not say very much,
But you will soon know,
Exactly how far I am prepared to let you go.
I see more than I say.
I go by actions - not words.
Please Sir, Madam, MP, or Lord of the Realm,
Are you going to help me,
Or just follow the herd???
I wish you wouldn't try to leave,
People like me in our personal version,
Of your nicely created Hell.
 
Trust me - given half a chance,
I could turn your life into a great expanse.
One filled with opportunities,
To help yourself as well as people like me.
 
There is a saying.
"No man is an island"!
We need to find a way of creating,
A world where everyone is treated equal.
Anything else is just like a house built of sand.
 
Reading this might have been tough.
But I bet you have never had it so rough,
As the forgotten, the ignored -
Never mind your friendly afterthought.
 
I might have a pair of glasses on my nose,
But them being some kind of miracle worker???
I think they must be on a "Go Slow".
I wish I could properly explain.
But I think you,
Would end up so confused,
That you would probably never speak to me again.
 
Yes - glasses help me see.
Including the discriminating con,
In those offers of "Buy one pair, get another pair free".
It is just not on.
Those offers are not open to me.
 
My glasses do help me see.
The gorgeous and the ugly people,
Who sit and stand around me.
The ones who help me automatically,
As well as the ones who watch  me struggle.
 
I have problems with angles,
As well as bright lights and the dark.
I keep waiting for a human Angel,
To realise being me is not such a nice walk in the park.
 
So, next time we meet,
Instead of commenting and complaining,
Because I am inconveniencing you.
Offer to help me,
Or ask what I need.
Just do not try feigning,
Your interest in me.
 
I am a sensitive soul,
Who can speak for herself.
All you need to do is truly listen.
Hear me when I end up needing your help.
 
Don't take over,
Let me advise.
You are the disabled one,
When it comes to dealing with my sight.
I haven't usually got the energy,
For the required mental fight.
 
I am no longer intending to be,
The forgotten, the ignored.
Or even the friendly local afterthought.
I am going to be me.
What that entails - you will just have to wait and see
Relaxation Is Not The Same For Everyone (Or - My Favourite Way Of Relaxing May Scare You)
3/30/2018 9:06:29 PM
Its funny how one person can be scared of an idea that another person can find to be the most relaxing concept in the world.  For example, any attempt at getting me anywhere within three feet of the back seat (pillion) of a moving motorcycle will result in me leaving the area rather more rapidly than usual – on foot.  However, I will happily watch TV programmes featuring people riding motorcycles (one of my favourite TV programmes is “The Hairy Bikers” after all).
 
If you ask people which sense they would least like to lose they will probably say their sight.  After all, sight and hearing are the two senses we use the most in our daily lives, aren't they???
 
So I bet I can confuse you totally – just by telling you one of the ways in which I relieve stress.  I take my glasses off.
 
I can hear you now - “But Inky you need your glasses to be able to see, don't you?”.  And your brain might be trying to work out how someone who cannot see clearly without their glasses much further than three centimetres from the end of their nose finds not wearing glasses relaxing.  Especially if you have got 20/20 vision.
 
What you have to remember is this – my natural world is blurry and fluffy.  Solid boundaries and edges do not exist in my natural world.  When I put my glasses on I am confronted by two sets of boundaries and solid edges – the ones on the objects I am looking at and the ones placed on my by Society – as in I feel I have to be as much like everybody else around me as I can.  The funny thing for me is that when I haven't got my glasses on I actually look like most of my friends but I am actually the least like them (well they can wander around without glasses on and not crash into anything or fall over – I can't).
 
My other forms of relaxation are mostly run-of-the-mill ones – reading, writing, and being near water, listening to music, etc.
 
There are two others which are kind of connected.
 
If you want to see me so laid back I am almost horizontal take me to Rotterdam (any part of The Netherlands will do but Rotterdam works the best).  That is my personal “safe space” both in my head and physically.  You can almost have the same effect if you give me something to read which is written in Dutch.
 
The other one is – find a Dutch person or a Glaswegian – complete with the accent - for me to speak to.  (Luckily I have got a friend who is Glaswegian and we speak every day on the phone.)  Why a Glaswegian???  If you slow them down enough you will find the speech pattern is the same as the Dutch one.
 
What do you do to help you relax?
 
We all need to take time out for ourselves.  If we don't we could end up with major problems regarding our Mental Health.
A "Mind Apple" A Day Keeps The Dr Away (Or - Why We Should All Take Care Of Our Mental Health)
3/30/2018 8:59:18 PM

On Wednesday evening I went to a rather interesting group which was run by my favourite Mental Health “Explainer” - Julian Harrison.  I say “Explainer” because he genuinely explains Mental Health in such a way that I feel I can ask questions and he will give answers in a language I can understand.

 
Julian's latest venture is a group called “Mind Apples” and it was a group which I felt very comfortable in.
 
The premise of “Mind Apples” comes from the old saying “An apple a day keeps the Doctor away”.  Yes – I know – you are probably thinking that you have to physically eat apples.  Apart from that – doesn't that saying only apply to physical health and not Mental Health???
 
Congratulations – you have hit the nail on the head.  We get bombarded with all kinds of tips and tricks to help us keep ourselves in tiptop physical condition but the Mental side of things seems to have been ignored for most people.  Until – of course - they develop really poor Mental Health and then everyone starts panicking.
 
“Mind Apples” wasn't a kind of “Alcoholics Anonymous” for those with poor Mental Health but it was a useful way of finding out how people deal with stress and what they do to calm themselves down when they feel stressed.
 
I am going to write about my ways of dealing with stress in another blog post.  What I will say is that my favourite method of relieving stress is counter-intuitive to most people.  I simply take my glasses off.  (For a fuller explanation and my other techniques see the blog post I am going to type on the subject.)
 
Not enough is said about how to prevent poor Mental Health.  We need people like Julian and Judith Critchley from “Loving Mental Health” to share their experiences and make talking about Mental Health (good or poor) seem normal.
 
I don't want to do Julian a disservice but I really think he makes more sense when he talks about Mental Health than most people because he has poor Mental Health himself.  He is also very open about it and how it affects him,  (In fact, if his book on a year with his Mental Health comes out on Kindle I will buy it and read it.  The book is called “A Year In Melancholia”.)
 

It is quite strange because I think Julian is a very inspirational person because he is the exact opposite of what you would expect someone with poor Mental Health to be like.  What I mean is – I remember being slightly scared of him when I first met him.  The best way I can describe him is – he looks like a very grumpy teddy bear but he is one of the kindest, most gentle, men I have ever had the privilege of calling a friend.

Control May Not Be Everything But Please Don't Try To Take It Away From Me (Or - I Want To Hit The Emergency Stop Button Instead Of Hitting You)
3/20/2018 10:00:34 PM
This may surprise you but I am usually reasonably easy going.  I don't lose my temper very easily but watch out when I do lose it - things can get very interesting (and not necessarily in a good way) for the person who has upset me.  Don't worry - I don't get physically violent with anybody, instead I get verbally violent (they get argued with to the point of them wanting me to disappear permanently).

The best ways to get me to lose it are to make me feel patronised and/or to make me feel as though you are trying to take control of me for whatever reason.

(I saw something on Facebook a while back which might give you a clue as to how best to deal with me in the event of you desiring to talk me into - or out of - something.  "I am Dutch - let's save time and you just agree I am right".  Well, I am half Dutch but the same still applies.)

I suppose my big thing about not surrendering control to anybody comes from never feeling I had control over my life when I was younger.  Authority figures usually seemed to make important decisions for me without actually involving me in the discussion.  I can still remember a couple of instances with a certain teacher (who will remain nameless) where I ended up feeling as though I might as well end it all for all the stress I ended up feeling nearly every single time I dealt with them at school.  I still haven't forgotten about the non-appearing computer (which would have been very helpful), or the time when they successfully (yet unknowingly) managed to convince me that my life was not worth living at that point in time by the simple action of telling me that I couldn't leave the school I was at - even though I knew for a fact that a boy two years above me had been transferred to the school I wanted to go to.  (Maybe the second incident was partly my fault because I wasn't confident enough to explain why I wanted to swap schools - bullying and an inability to cope with the way some of the teacher's colleagues were treating me were the main reasons.  Although I was pleased with myself for knocking the wind out of their sails.  They went from shouting at me to almost a stunned silence when I told them I wanted to leave.)

(I still felt nervous around them the few times I saw them after I left school.  There again - that might have had something to do with the fact I was on their "turf".)

As a result - you can advise me, you can gently "nudge" me towards the decision you would like me to make (in order for that to work you really have to make me think it is my decision - sometimes easier said than done).  However, the minute you tell me to do something or not to do it, my first reaction is going to be to go on the defensive and argue with you.  I will make it very easy for you to work out how best to argue with me when you have told me what you think I should do - just walk away in silence.  Don't bother trying to explain your side of the situation, don't bother giving me a list of reasons you think I might regret not following your "advice", just don't bother speaking to me until I decide to speak to you.  You never know - I may eventually come round to your way of thinking in my own time.  However, you will find out extremely quickly if I think you have tried to tell me what to do - even if that wasn't your exact intention.

Honestly?  Your best plan is to give me options.  I can work with options - especially if I can talk them through with you without you playing the Great I AM.  (This includes you apparently deciding how I am going to feel if I follow my intended course of action without allowing me to explain why I think you are wrong.  You may find out that I agree with you but for the exact opposite reason to the one you come up with.)

It was quite funny on Sunday when I was talking to one of my friends.  They reminded me of an offer they had made some time ago.  I didn't know how to tell them that I didn't feel pressured into taking up their offer - in fact - I felt like they were just being their usual kind and friendly self.  (I intend to take them up on the offer as it happens.)

Oh - the reason for me typing this blog post???  You can blame Dr Punch-up (sorry - Dr Panchal) of Glenfield Hospital for hitting just about every raw nerve I have got on the subject of being patronised and ordered around (not forgetting only allowing me to give half an answer to one of his questions - I nearly cheered when he looked at me after I had finished my answer and said "can I speak?".  That really cheered me up.).

Somewhere Out There Someone Really Tweets Sense (Or - Why I Think Sometimes The Quickfire "Slogans" Are The Best Ones)
3/20/2018 9:02:37 PM
I am lucky enough to have met nearly everybody who I admire in one way or another in person.  I say "nearly" everybody because there are a few people on my wishlist who I am highly unlikely to meet (either due to geographic location or due to the fact they are so famous I would be near the back of a very long queue of people).  Ironically - one person on that list happens to be someone who I am related to (I last saw this person over 20 years ago) and is the only human who could possibly cure me of my severe allergy to Medical Professionals - they are a Doctor.

Seeing as I am highly unlikely to meet Jon Bon Jovi, Richie Sambora, Ford Kiernan, Greg Hemphill, Billy Connolly, Koen and Kris Wouters, or, Bill Bryson, I will have to be happy with those admirable people who I have met.

There is one person who I have "met" on Twitter - and it turned out that I missed meeting them in person by 24 hours last year - who I really wish I could meet in person (there are actually a few like him but I will explain why he is at the top of the list in a minute).

Some time back I blogged about a book called "Blue" by John Sutherland.  The book was about Policing with a large dose of Mental Health (his) thrown in.  I would highly recommend you read it - even if you are not remotely interested in the Police, it is well-written on the subject of his Mental Health.

Mr Sutherland was a Police Commander for the Metropolitan Police before he was forced to take Medical Retirement due to his Mental Health issues.  Well, actually, that is technically correct.  However, even though he retired he seems to be one of those "Blackpool Rock" professionals.  As in - even though the professional retires the job they were doing prior to retirement appears to be so ingrained into their psyche that if you were to metaphorically slice them up into little pieces you would see their profession written on every slice.  (I know a few people like that.)

I actually nicked the first part of the title of this blog post from him (with his permission).  If I had my way it would be the title of his second book as well.

Everybody has some kind of "hook" which gets me interested in them.  (Trust me - that is more true than you think.)  The best "hooks" are (obviously) connected with words.

I found Mr Sutherland on Twitter after someone had retweeted one of his "Somewhere out there a Police Officer..." tweets.  I cannot remember the rest of the tweet but I am sure it was something regarding some aspect of his job.

What caught me about the "Somewhere out there..." tweets was the fact that they were simple, to the point, but not in anyway "preachy" or "I am better than you because of my job".  In fact, from reading both Mr Sutherland's book and his blog posts, I get the idea that he is the most gentle man I could wish to meet.

I know I have tweeted this to him before but - "Somewhere out there a Member of the Public really admires you for the way you have connected with people and shared your experiences".



I Have Seen The Future And It Is An "Infinity Cube" (Or - The Best Alternative To A Book Of Stamps)
3/20/2018 8:28:05 PM
For those of you who are wondering what a book of stamps has to do with an "Infinity Cube" all I will say is - it is not in your interests to leave me alone with a book of stamps if I am bored,  The squares where the stamps are stuck will probably end up with their rims folded so you may encounter slightly more difficulty than usual when it comes to detaching the aforementioned stamps in preparation for attaching them to your desired envelope, etc.  The resulting "origami" will also probably greatly resemble an "Infinity Cube" when it is stretched out.  You have been warned!!!

Regular readers will probably know that I am a big fan of gadgets.  The more pointless the better.  Although, I couldn't quite see the point of the "Fidget Spinner" craze - I prefer my pointless gadgets to have at least some use rather than just spinning them.

I was looking on Amazon when I saw something which looked very interesting (so I bought three different varieties of it).  It was a cube which advertised itself as an "Infinity Cube".  Luckily it had photos to show what you could do with it.  Just think along the lines of the sliding glasses case which some people (including me) have - the one which you can slide open and shut with different colourschemes on each side???

The photo which really grabbed my attention was something like this one

Obviously that was not the original photo on Amazon - I took it on my bedside table.

That particular "Infinity Cube" looks like this when it comes out of the box


A four square by four square cube (photo taken on my bedside cabinet)

Yes - I know - I am extremely easily amused.  Just leave me folding and unfolding an "Infinity Cube" and you will keep me quiet for hours on end.  I suppose it could be because I have never seen the point in origami or anything which involves patience and dexterity (never mind halfway decent sight for peering at small things) - but I love just being able to open and fold things without feeling as though I have to "create" something as an end product.

If you are interested in "Infinity Cubes" they are available at all sorts of prices - from cheap plastic to unbreakable aluminium.  The one in the photos above was one of the cheapest ones - I also bought an aluminium one (which is just blank cubes inside and out) and one which is a bit of a strange take on a Rubik's cube made out of plastic.
Scary Wasn't The Word (Or - An Apology And Health Update)
3/20/2018 7:55:41 PM
I only went for an appointment with a Cardiologist - I didn't expect to come back out of hospital permanently three weeks later!!!

Right now your friendly Blogger is feeling very guilty for not posting anything on here for the past month and a bit.  It was my original intention to post a blog after my appointment with my Cardiologist - except I had not got my laptop with me at that time and it turned out that being attached to a wall by your nose isn't exactly conducive for blogging anyway (particularly when you are having severe trouble breathing on your own).

Please accept my apologies for the sarcasm but - it has honestly been one of those situations where if I am not sarcastic about it I will probably offer myself up as target practice for one or two Firearms Officers I know from Twitter to put me out of my misery.

The ironic thing was I actually learned that my heart's function/capacity has increased somewhat - it is now 45% in the left side and 25% in the right side.  (Considering that 50% is considered to be "normal" optimum capacity for each side my left side isn't too bad.)

Anyway. I realised I had a bit of a slight problem when I was trying to get to my appointment.  Correction - I realised I had a bit of a problem when I was trying to get to the bus stop in the video I posted in the blog post about me and sunshine.  I felt "puffy"- almost to the same point I was before I was admitted last year.

I had planned it so I could go to the Oncology Department at Leicester Royal Infirmary to pick up some Bloodtest forms (which I needed for the next week) then catch a bus to Glenfield Hospital to go to my appointment.  Well - I kind of managed to do that.  Just not at my normal speed.  In fact, I felt so bad that I ended up doing something which I hate it when other people do it - I caught a bus between two bus stops within 30 metres of each other (I usually think people are lazy when they do that).

Anyway - I got to Glenfield approximately an hour before my appointment time (this is very unsual for me).  When it came to getting my blood pressure measured I got very scared (but I didn't say anything to anyone) - from what I remember my blood pressure at that point was 134.  Not only is this very high for me - it is high for most people at rest.

Then I saw Dr Chin (Cardiologist) - who gave me the good news about my heart.  Unfortunately I told him about some symptoms I had been having at night (waking up unable to breathe full stop one night and waking up - going to the loo, going back to bed, then feeling like I was not long for this world whilst gasping for breath).  Dr Chin didn't like the sound of that very much so he sent me for a chest xray - on foot.  When I arrived back in his office I had difficulty breathing - so he subjected me to a Blood Sats check - that came up at 88% (anything under 90% gets you free bed and board in a hospital), then he got me to do a "Peak Flow" test (before he did the "Peak Flow" test he did say that he was trying not to admit me - that didn't work).  So I ended up being admitted into Glenfield Hospital.  I didn't mind that bit - what I did mind, however, was being told it could either be a blood clot on the lung (potential immediate death) or asthma (potential not-so-immediate death).  My English Grandma had had asthma and she seemed to cope with it.  (Remember the Asthma thing - we will come back to it later.)

To cut a very long story short - it turned out that the original cause of my breathlessness was actually fluid in the lung (potentially caused by the cancer - the words "Lymph fluid" were mentioned).  This was drained.  You won't be surprised to learn how relieved I was that it was only 600 millilitres and not the "500 litres" which I originally misheard the amount as.

Then I was discharged.  This turned out to be a major mistake.  Luckily Glenfield had done themselves (and me) a major favour by booking me a Dr's appointment for the day after I was discharged.  (I should have had my implant implanted and my Vitamin D injection injected on the day I was discharged but Glenfield didn't have them in stock so they talked to the surgery and booked the appointment.)

I got home feeling absolutely fine.  Then I went to bed and started to have trouble breathing again.  I put this down to the usual thing of "come out of hospital - go downhill and then start recovering properly" - except it didn't quite turn out like that.

I didn't sleep very well the night I was discharged.  In fact - I had the worst night's sleep I have ever had.  I eventually got what I call "proper" snooze between 6am and 9.45am the next morning.  My appointment for my injection and implant was at 11.50am - and I had to go to the Chemist's and attempt to collect both the injection and the implant on my way to the surgery (the surgery is across the road from the Chemist's).  There were two major red flags which alerted me to the fact that I might not exactly have been functioning at 100% at that point.  These were (1) I ended up clinging to lampposts so I could catch my breath whilst walking up the hill (usually I can walk it in a matter of minutes without stopping) and I had to prop myself up against the counter whilst I was waiting to be served.  (2) When I found out that the injection hadn't turned up I didn't have either the energy or the breath to argue with the staff in the Chemist's (if you have read my Facebook statuses you will know that I usually argue and have a go at them if my prescriptions are not available when I expect them to be).

Then I made my way to the Surgery.  The nurse who implanted the implant took one look at me and decided I was not really in a fit state for anything.  She told me I sounded "wheezy" and I obviously had trouble breathing.  She spoke to the Dr who gave me two doses of Sabutamol and promptly attached me to an oxygen tank - before calling an ambulance.  (After the Sabutamol I actually felt as though I could have walked back home.  Thank goodness I didn't.)

The "fun" part came when I was installed in the ambulance.  Apparantly, Glenfield didn't have any spaces for trollies when I was due to go straight there.  So, the next question was - how am I going to be transported to A & E at Leicester Royal Infirmary???  I could go as a "blue lights" case or I could go as what I classify as a "van" case.  Apparantly, had I not been stable when attached to the wall of the ambulance by my nose (on oxygen in other words) I would have been a "blue lights" case.  Phew.

What really upset me was the fact that one of the Drs in A & E told me that I might be going home instead of to Glenfield.  Why was I so upset by this???  At that point I was on 8 litres per minute of oxygen and I actually was at the point where even I admitted that a hospital was the best place for me.  Let's just say that I hate hospitals with a passion you can only dream of - and getting me to admit I should actually be admitted into one really means that things are extremely serious (to the point of "potentially life-threatening").

Eventually, I got a chest xray (they thought that the fluid might have come back into the lung they had drained).  I had discounted the return of the fluid for one very simple reason - the timespan between the draining and the recurrence of the symptoms was too great (when the fluid came back into my chest last year after the initial drainage I had severe difficulty breathing after 12 hours instead of over 24 hours).

I was working on the (eventually proved 95% certain) assumption that it was in fact asthma which had caused my readmission.  More to the point - I was actually working on the assumption (which was also proven correct) that the readmission could have been prevented by fitting me up with at least one inhaler before I was originally discharged.  The inhalers were actually mentioned on my original discharge letter - I just hadn't seen any, let alone touched any.  (There again - the discharge letter admitted that it had "been typed from notes instead of seeing the patient".)

Just to confuse both me and the situation completely there was a question mark as to whether or not it was actually asthma or something called "Cardiac Asthma" - which is when seemingly asthma symptoms show up as a result of Heart Failure.

Eventually, I was given the diagnosis that it was indeed a 95% chance of being asthma (am now waiting for further tests) as well as two inhalers (hooray).

Now I am just waiting for the tests to prove whether or not it is asthma - as well as the next appointment with my Oncologist.

I did take it easy for the first few days after I came out of hospital - then I got bored of being at home and decided to go into town for a while today.  I survived the experience better than I thought I would - no breathing troubles, no exhaustion, etc.  Don't worry - I am not planning on doing any marathon trips for the next couple of weeks.

If you are one of my friends I would like to take this opportunity to send you a BIG THANK YOU HUG for your support and friendship during this escapade.  Yes - I know I may sound like a broken record but it really means a lot to know I have got people standing next to me.


The Thought Processes Of An Ineke (Or - There Might Be A Method In My Madness)
2/14/2018 10:31:13 PM
This is probably going to sound like the start of a very bad joke (which I suppose it actually is in a way) but - what do you get when you cross someone who is half-Dutch with a sight problem and an independence streak a mile wide???  The short answer isn't actually all that short at 5ft 10" tall but it is commonly known by a label which only has five letters.  Yes - its me.

If you have met me you may think I am a bit of an oddball whose brain doesn't exactly function in the same way as everybody else's.  And you would be correct - just not in the way you might mean.

The original "strapline" to this blog was "A Sideways View Of Life" - referring to the fact I don't "see" things in the same way as everyone else (both literally and metaphorically).

So - how on Earth does my brain work???  This is a question I find myself asking daily.  It just seems to come up with some seriously strange thoughts and ideas at times.  It also seems to have a very strange way of processing information (as anyone who has ever had the misfortune of attempting to explain something to me will not hesitate to tell you).

Not for me the Computer logic of "if so-and-so then xyz".  It is more likely to be a case of "if so-and-so then oranges, a staircase, and bananas".

You could say I am a Master at Independent Thinking.  Funnily enough I prefer trying to solve things on my own in my own way.

I suppose it is only natural when your natural state involves life literally being a blur that you have to figure out yourself using a process of trial and error but without any help from anyone else (especially if you are on your own when your glasses fall off your bedside cabinet).

There is another "excuse" I can give you which might not make very much sense until I explain it.  The excuse is my Mum - well, not her specifically, more something she used to do when I was growing up.  She was Dutch - with Dutch as her first language (obviously).  I think English was actually her third language (with Swiss German sandwiched in the middle).

One of my favourite things she used to do was start a sentence off in either Dutch or English and finish it in the other language - without translating anything she said to me in Dutch.  This left me having to work out what on Earth she was saying half of the time and put both bits of the sentence together before coming up with a reply (no wonder I found French lessons torturously difficult with their use of textbooks and audio tapes).  The other favourite thing she did was automatically use the Dutch version of a proverb (even when she could speak English like a native).

This must have meant that my brain was conditioned to realise that the conclusion will not necessarily be obvious - you have to wait for all the information before you can be sure what is going to happen.  Also - context is key.  For example - my Mum would use the Dutch word "Haring" in two separate events.  Her location would be a key to what she was actually talking about.  If she was standing holding a frying pan or plate when that word passed her lips I could be 99% positive that she was referring to the fish English-speakers know as "herring".  If she was standing on a campsite looking at a tent which needed to be put up when she mentioned "Haring" I could be 99% positive that she was talking about a "tent peg".  (Luckily for me I came to realise that there were certain words she would not use the English version of when she was talking to me.  Let's just say she had enough Dutch words for the word "Mess" that she never actually needed the English one - unless she was talking to a non-Dutchspeaker.  She reserved "Mes" - with a single "s" - for when she wanted me to hand her a knife.)

So, next time you think I am not making much sense or I am coming out with some very strange ideas - stick around - you might be surprised at the results.  I might not have what appears to you to be the most logical way of doing things but - just sometimes - there might be a method in my apparent madness.

A Twist On Love (Or - Scribbles On A Sentence)
2/14/2018 9:24:16 PM
I didn't realise Valentine's Day was coming up when I wrote this at Scribbles.  We were given the first sentence to write about - so I followed instructions.  The other Scribbles Musketeers told me that they thought it was good.  Even I think it is a departure from my usual "Scribblings".

The funny thing is I hate Valentine's Day with a passion you can only dream of - for one simple reason.  Do we really need one single day in the year where we are practically forced to buy our partners, etc, gifts and spoil them???  What is wrong with showing your love to someone at other times of the year???  Why can't we show our love by doing something kind for them - make the chocolates yourself instead of buying them for example???

Most of my favourite songs about "Love" are on the flip side to it - "Not In Love" by 10CC, "Sorrow" by Kristyna Myles, "Betrayal" by Kristyna Myles, "You Give Love A Bad Name" by Bon Jovi, "The Morning After" by City To City", etc.

This was the entire greeting between them after such a long absence.

She had been surprised - to put it mildly - when he had materialised in front of her seemingly from nowhere.

His voice still had the same powerful effect on her that it had always had - making her wonder whether to kill him or (if she dared) kiss him.

The quietly spoken - somewhat absentminded "Hi" as he walked past her brought back too many memories for her to count.  Or even want to remember.

He was with a lady who seemed to look straight through her - almost as though she was a piece of glass.

They walked past her without a backward glance - leaving her ruing missed opportunities yet feeling grateful that he had shared at least a miniscule portion of his life with her.

Even the memories of their bitterest arguments had sweetened with the passage of time.

She had always known he was out of her league.  Let's face it - on paper they shouldn't even have been friends they had so little in common.

As she saw the couple disappear into the distance she silently thanked him for his friendship, patience, and attempts to warn her about himself.

The final thought she had was how lucky she had been to win the major argument which had very nearly killed their friendship before it really began.

Yes - I know it isn't your usual Valentine's Day soppy love story but please remember "Love" has many sides.

The Magical Healing Properties Of TLC, Conversation, And Chocolate (Or - A Health Update)
2/14/2018 8:57:59 PM
Ah- that's better!  I actually feel healthy enough to type blog posts.  Trust me - there have been times when I haven't really felt healthy enough to do anything at all.  A couple of times I have seriously considered calling an ambulance (and you know how I feel about hospitals).

It is funny how quickly someone can go from "I would rather die than bother a Dr" to actually desiring to get themself to a hospital at the first sign of something being seriously wrong.  It is also quite ironic when you realise that the aforementioned individual has been told they are not going to be cured from the condition which is behind the reason they wanted to call an ambulance in the first place.  Let's just say that a suspected chest infection/cold (which usually wiped me out even before I got the Heart Failure diagnosis) and Heart Failure are not exactly a match made in Heaven - the match is more likely to send me to Heaven.

Anyway - where was I???

Oh yes - I was going to give you my "State Of The Health Of The Ineke" Address.

There have been some annoyances, some really funny things (there again - that might just be my rather twisted sense of humour), and some educational things, which have entered my orbit recently.  And the "educational" things really were educational - just maybe not in the way they were intended to be.

First I feel it might be useful to explain my personal philosophy regarding my health and how I try to look after myself.

People tell me I am an inspiration in the way I am coping with this escapade.  I have said many times before that I only know how to fight and keep going when things get tough - giving up is an alien concept to me.  I suppose it is one thing I have to thank my Oma for - she was one of the most determined people I have ever met (I only found out by accident that she had actually had cancer three separate times before she died) - she (and my Mum) was also one of the most caring people I have ever met.  The three of us share one characteristic - if we like you we will do anything in our power to help you.  On the flip side - however - getting on the wrong side of us is "not recommended for Medicinal purposes" (as my Glaswegian friend would say.

The funny thing is that I now consider myself to have access to four types of "medicine" - the first being the stuff everyone recognises as medicine (as in tablets, injections, etc).  The second is my friends (even though some of them are potentially deleterious to my health - but more about that later).  The third is humour - if you can't see the funny side of something serious you are just going to get stressed out.  The fourth is chocolate.

The whole thing kicked off a couple of weeks ago.  I started feeling a bit odd.  I knew I had a cold but I had had them before and I knew what to do about it (let nature take its course).  However, when I expected to start to feel better I ended up feeling a lot worse - to the point where I thought my next residence would either be somewhere where I can be attached to a wall by my nose, or a nice comfy wooden box 6 foot underground.

To say that was scary is something of an understatement - one minute you are unconcious and the next you are awake wondering if you are ever going to breathe again.  I somehow managed to calm myself down enough to be able to breathe and go back to sleep.

I was advised by a friend of mine, who is an ex-Heart Failure Nurse, to contact my own Heart Failure Nurse and see what she said.  I am glad I followed that advice.

The horrible thing was - I knew I had a couple of Medical Appointments as well as events I didn't want to miss that week.  One of the Medical Appointments was actually the source of what I think caused the (currently suspected) chest infection - Stress with a capital "S".  Not the appointment itself - more like trying to get people organised to enable me to get one lot of tablets which the Oncologist had prescribed at my last appointment.  (I am now working on the assumption that I can get my Surgery to ring the Oncologist directly if the letter explicitly stating I need one lot of tablets hasn't turned up by next Monday.)

The events I wanted to go to all included various friends (I only had to miss one of them because I just didn't feel at all well).

If there is one way of taking my mind off my poorlyness it is to surround myself with humans who enjoy writing and talking about writing.  Scribbles allows me to do that - and I found something else (which is - unfortunately - ending next week).  Take one pack of students who are studying Media at university, and one absolute wizard of a tutor called John Coster, and add the Three "Social Media Cafe" Musketeers (of which I am one) - water liberally with coffee - and you have a recipe for a nice few hours.  (It also helps if you are almost stunned into speechlessness by the aforementioned John Coster telling one of the students in your earshot that you are "one of the best bloggers I know" - that made me go from literally feeling like the "Walking Dead" to feeling like a useful corpse who could actually impart wisdom to someone.)

Hey - I am not a teacher (nor do I wish to ever become one) but if I can help people learn about blogging I am very happy.  Even better if someone is interested enough in me to read my blog as a result of talking to me (and compliment me - but that isn't a mandatory requirement) to see what I have been trying to tell them about.

I have also rediscovered my love of something - Hot Chocolate (second thoughts any chocolate will do - even a box of chocolates.  My favourite are Quality Street, or - if you want to be my friend for life - supply me with several bars of Verkade milk chocolate, or a large box of "Hagelslag" in milk chocolate).  There is nothing better than being curled up in my chair (incidentally where I am typing now), wrapped in my large throw, drinking a mug of Hot Chocolate to make me feel as though all is right with the world.

I nearly forgot - I told you I was going to explain why I said that some of my friends are actually deleterious to my health.  There are a few friends who - if I think there is a good chance of me ending up in their presence for whatever reason and having fun as a result - could invite me to the opening of an envelope and I would turn up.  (One such friend was the springboard to the start of this escapade when I couldn't get to an event she was at and I wasn't too bothered.  If I had been healthy at that point I would have done everything in my power to turn up to it and been very disappointed if I couldn't make it.)  I think most of them would know who they are (with a couple of exceptions).

This is all very well if I am actually in a fit state for public consumption.  It is when my loyalty to my friends clashes with the fact that I don't feel at all well that the problems start.  I end up feeling both extremely angry with myself and guilty for letting my friends down if I am too poorly to attend (apart from the time I referred to above).  I know my friends would probably understand but I suppose it is another aspect of the "be as much like everybody else as possible" side of my character which refuses to make a fuss unless absolutely necessary.  (I am smiling as I type this because I know that there are some of you reading this who will probably have a friendly go at me about it next time you see me.  You know who you are - mainly because you have already done so.)

Well, now you know I am alive I will finish by sending you a BIG HUG each and saying "thank you for your support".

A Taster Walk (Or - Me Committing The "Crime" Of Walking Around In Bright Sunshine When Suffering From Photophobia)
1/21/2018 6:42:08 PM
There are times when I get these really insane ideas and wonder if they might actually work - and if people would really be interested in the results.

The idea you are about to witness the results of was me wondering if I could show you what challenges I face when I am out and about - a kind of attempt to "lend you my eyes" if you will.  I decided to take my Canon digital "Point and Shoot" camera on my walk from my driveway to the bus stop where I catch the bus into town and video what I see (as well as giving you a description of how things affect me).

Please Note - Although it sounds like the camera operator is about to keel over and die at any moment I had a cold at the time of filming (I also forgot to put my mobile on silent - apologies for the message alerts you hear).


I decided to show you precisely why I hate walking around in "wall-to-wall sunshine".

Click on the link to start the video. Then read my words.

youtu.be/AqGl7r-Tosc

Getting down my driveway is the easy bit.  Then (as Kevin Bridges would say) I begin to encounter some difficulties.

The first difficulty is - funnily enough - the sunshine.  More to the point - it is the angle of the sunshine in relation to where I am standing.  If I wanted to cross the road I would be OK looking to my right - nice normal lighting conditions.  I can see all known traffic and other potential obstacles on my righthand side.  My lefthand side is a completely different story.  You want to run me over???  Just get yourself a bicycle and ride towards me from my lefthand side on this road in bright sunshine and I will not see you until you are almost running me over (this actually happened one morning - the cyclist wasn't too happy with me.  They muttered something about me not looking before I crossed the road.  The trouble was - I did look both ways before I crossed the road.  Not my fault the cyclist wasn't the size of a useful object - as in a car.)

So - we have turned left.  If you have been concentrating whilst reading the above paragraph you will know that cyclists (and other small "Alien" beings - walking humans, dogs, etc) become invisible until I get very close to them.  There is something else which changes though.  Landmarks go for a walk - or lose all recogniseable distinguishing features (windows, doors, colour scheme of exterior paintwork, etc).

The next "obstacle" we see is the alleyway between two blocks of flats.  (Actually - this can confuse me even if it isn't sunny.)  You might be able to aim directly for the "hole" as soon as you can see the end of the carpark.  To me - that looks like a black fence blocking the way out of the carpark (good job I have known this route almost my entire life).  I always get a shock when humans literally appear out of the woodwork walking towards me.

At the other end of the alleyway is a brick wall.  Sometimes there is a car parked opposite the end of the alleyway (as well as one just where I turn right out of the alleyway).  Anything parked anywhere near the end of the alleyway is initially computed as blocking it off until I can actually see the road or the pavement so I can visually "measure" the distance between me and the obstacle.  (See what I mean about landmarks losing all known distinguishing features???  Trust me - there is a road and then a brickwall.)

After I turn right out of the alleyway we come to my "favourite" obstacle - a car partially draped across a pavement.  Now - there is a difference between my perception of the distance between the side of the car and the wall and the camera's perception of the distance.  The camera suggests there is enough space for me to get through.  My eyes - on the other hand - don't.  The colour of the car facing us is actually hindering me - it looks bigger to me than it really is.  To the point where - on first seeing the car it appears to be some kind of Transit-type van.  The red car actually looks as though it is parked closer behind the other car.

Luckily I know this is a cul-de-sac so I am reasonably happy walking in the road to navigate my way around the car.  I am not so happy when I see lorries making deliveries to the CO-OP blocking the pavement nearer the junction with the main road.  In fact, I can get extremely scared when that happens.  (One day I nearly walked right into the back of a car which was parked almost on the corner as I came around the corner on my way home from the CO-OP.  I am sure there is a legal distance you have to park away from junctions???)

The rest of the video just shows the pavement and the road.  However, it does show two things which you may not take any notice of (correction - if you have 20/20 vision - you probably won't take any notice of this).  There is one thing which can totally disorient me and one thing which can cause me difficulties which may come under the "Slips,Trips, and Falls" part of a Risk Assessment.  And - you may be surprised to learn that they are not all that different when it comes to how my brain computes them.

The disorienting thing in the video (although it is not to a "dangerous" extent like it would be if there weren't any buildings in the vicinity) is shadows on the ground.  Trust me - the sun hits a lampost at the wrong angle and the resulting shadow can appear like a solid barrier blocking my way (or it can look like someone has helpfully dug a trench in the tarmac and retarmacked the hole).


The "Risk Assessment problem" in the video is one I end up encountering just about everywhere I go.  Kerbing.  Correction - Grey lines on ground which may or may not be kerbing indicating a drop between two levels.  (Trust me - you do not want my opinion on any ornamental paving you may choose as part of any landscaping you may do.  Let's just say I think my life would be a lot easier if grey kerbstones were reserved for the edges of pavements.  There are times when I seriously think people should be imprisoned for misuse of grey kerbstones.)

Well, we have come to the end of this "trip".  I hope you found it interesting.  I may try another video at some point showing something else which poses me with a challenge.

Before I finish I wanted to share this photo which shows what the view looks like when I turn left out of my driveway and walk a few metres when it isn't "wall-to-wall" sunshine.  I prefer this view - I can actually see the traffic properly.



Why Cancer Isn't The Most Difficult Fight I Have Ever Had (Or - Bullying Leaves Scars Which Never Heal)
1/15/2018 4:42:18 PM

I posted this on Facebook after seeing a status about bullying which had been put up by one of my friends.  You could say it was my reply to them.

There are times when I wish I could lend people various bits of me so they could experience life as I do.

These are mostly things like my eyes and my physical scars.

However, I rarely wish to lend anybody my mental and emotional scars - I wouldn't even wish to lend them to the people who gave them to me.

I have heard some of you lot tell me how inspirational you think I am for keeping going and keeping smiling through my current escapade. The funny thing is that - to me - cancer and heart failure are not the worst things I have ever had to deal with. I have got professionals medicating me and keeping an eye on me, as well as friends who make me smile, feed me, water me, apply hugs, etc. I may be on my own but I never feel lonely.

I grew up knowing I was different from everyone else - and trying my hardest to be the same as them. My pesky sight made it a lonely existence at times - a *very* lonely one indeed.

I would say that around 5 of you were around me during the loneliest times (one of you being paid for the privilege). I am not joking when I say I came closer than you will ever know to killing myself during my first term at Secondary school. To be honest I consider myself lucky that I didn't have the internet at that time otherwise I might not be here now.

Being bullied is bad enough - being bullied for something which you hate about yourself anyway is the cruelest thing anyone can do.

I am not going to jump on the bandwagon of "we need to tell the children of today to be kind to each other".

Instead - we need to *show* the children of today that they are valuable, that their differences are what makes them special, that -even if they are not academic - they can still succeed.

Bullying is worse than cancer. After all, cancer may eventually kill you but at least you have people fighting it with you. Nobody fights with you when you are being bullied - there are no specialists with degrees coming out of their ears working on cures for bullying - there is no fundraising for research into what makes children and adults (I was also the victim of bullying in my last job) bully others less fortunate than themselves.

If you would like to borrow my mental and emotional scars that came as a result of bullying be my guest. I will gladly lend them to you.

Bullying should *not* be seen as a "rite of passage" through life. It should be both seen as and treated as a serious crime (I think you will find physical and verbal assault are both classed as criminal offences - and there is such a thing as "corporate manslaughter").

You may think I am overreacting but - if you had had my experience of it and treated some people badly as a consequence of it - you might think very differently. Bullying leaves scars which last a lifetime - and some scars from it never heal.

The Connection Between Pre-Prepared Vegetables And The NHS Crisis (Or – How Focusing On The Obvious Isn’t Necessarily A Good Idea)
1/15/2018 4:33:42 PM

This blog post was originally typed on the Simple Solutions blog but I thought it was important enough to share with you on here.

Y
ou are probably looking at the first part of the title to today’s blog post and wondering how I dare to link two totally unconnected subjects???  Well, actually those subjects are more connected than you think.  Not just because inadequate consumption of fruit and vegetables can land you in hospital either.

Apparently it is only the lazy people – or those with more money than sense – who buy pre-prepared vegetables???  Not forgetting those of us who don’t care about the environmental impact of the excessive packaging on the aforementioned items???

Well, if I was feeling uncharitable towards the able-bodied, non-visually-impaired, members of society, I could argue that the people who agree with that argument might have a point.

However, then I would be guilty of the same thing as them – a massive generalisation.  You see there are some people for whom the act of preparing vegetables for consumption is either downright dangerous or physically impossible.  (I fit into the category where it can be downright dangerous.). I am talking about people with limited function in their hands, people with poor sight, and other disabilities.

I prefer to do things for myself when I can.  This includes cooking.  Therefore, if given a choice between attempting to munch raw parsnips or finding a pre-prepared serving of parsnips which I can stick in the microwave and cook, I will go for the second option.

I have read somewhere about there being an issue of “privilege” coming into play on this subject.  Sorry guys – it’s not “privilege”.  What it is is a lack of education about how Disabled people can (and do) function reasonably well on our own if you give us the required help – as well as how that help can be seen as an unnecessary “luxury” – particularly when the “able-bodied” commandeer it for their own use.

What has all the above got to do with the NHS Crisis???  (Apart from the availability of pre-prepared vegetables ensuring I stay uninjured – or rather – uncut whilst cooking???)

There is an unspoken subject in the NHS Crisis which I think urgently needs to be addressed.  And I was as culpable as anyone before I ended up in my current situation.

Did I bother my GP with inconsequential symptoms which I could have treated at home??? Nope.

Did I use the Ambulance service inappropriately for minor injuries???  Nope.

Did I clog up A&E as a result of a minor illness???  Nope.

In fact, my absolute hatred of hospitals and Medical Professionals – coupled with being told by the Mainstream Media (and the NHS themselves) only to use things like ambulances and A&E in an emergency – led me to leave seeking medical attention until it was almost too late to help me.

It is all very well to praise those of us who try our best not to put any pressure on the NHS with minor complaints, injuries, and illnesses.  However, if we leave things to cure themselves we could actually cause more expense for the NHS when the opposite occurs and our health deteriorates drastically.

As with the pre-prepared vegetables – there needs to be a discussion about the appropriate use of NHS resources which includes those of us who don’t like bothering Medical Professionals even when we are literally dying on our feet, as well as the ones who treat the NHS as their personal slaves.

The funny thing is – I actually followed the advice I had been force-fed on the correct use of the NHS and ambulances.  This meant that I didn’t dial 999 because I could walk far enough to get into a taxi.  However, when I got a booklet about what to do with symptoms of “heart failure” when they go haywire, I learned that my exact level of breathless when I took myself to A&E would have made me a prime candidate for a journey on a small bed with blue flashing lights.  The fact that I could walk was beside the point.

We need a proper discussion as to what exactly constitutes a medical emergency with parameters which are clearly understood by everyone.  We also need to encourage the “properly poorly” to seek medical attention without feeling uncomfortable about wasting NHS resources.

The thing I find really annoying is – when certain diseases or illnesses become the focus of Media attention – the lists of symptoms sometimes include things I have had my entire life without becoming poorly as a result of them.  Blurred vision, sensitivity to light, and spots in front of the eyes, are all apparently symptoms which should send me rushing to A&E??? Can someone please ask the Media to add the caveat “if you have never experienced them before” to their urging to seek medical attention???

In both the “pre-prepared vegetables” discussion and the “NHS Crisis” there is a lack of education about the hidden people which are affected by the arguments.  Until all sides are included – and heard – we are never going to get a useful outcome to either debate.

Fashion Judgement (Or - It's What's On The Inside Which Should Count For The Most)
1/15/2018 4:29:22 PM
If you have read this blog before, you know me personally (as in - in real life), or you are connected with me on any form of Social Media, you will know one thing about me more than anything – except possibly my name.

The thing you will know about me is that I hate bullying and discrimination – as well as being passionate about Disabilities.

You can find me on Twitter under @inkyworld, or on Facebook as “Ineke Poultney”, where you can be bored to sleep by further ramblings on any and every topic which passes through my mind at any given moment (the best cure for insomnia can be found on Facebook).  If that little lot doesn't bore you to sleep quickly enough may I also recommend simplesolutionsconsultancy.wordpress.com/ where you can read yet more of my ramblings.  There - your insomnia should be well and truly cured now.

Actually – it is Twitter I wanted to talk to you about in this blog post.  Well, not Twitter itself exactly – more something which I found on Twitter that pleasantly surprised me (I was shocked when I learned how young the person was who put it up).

I was looking on Twitter one day when I found that one of the Twittercops I follow had retweeted something extremely interesting.  A girl going by the Twittername of @TheMiniChaos had tweeted the most amazing takedown of the idea of the “perfect body”.  The only reason I knew she couldn't be anywhere near as elderly as I am was because the Twittercop who had retweeted it happened to be her Dad.  However, I was stunned when she told me she is 15 years old.  Her argument and logic was better than anything I could ever come up with and her use of language was very eloquent and mature.

As someone who has got body-confidence issues stemming from the scars on my body I honestly wish that @TheMiniChaos could have been around when I was growing up.  To paraphrase what she said somewhat – it doesn't matter what your body looks like, you are OK as you are.

I have blogged several times before about how we are conditioned into believing we have to be a certain way, look a certain way, etc, in order to be with the “in-crowd” - and for those of us who cannot conform for whatever reason this means life on the outside.

One of my friends had a go at me on Facebook when I posted something about wishing I could walk around in public without any form of corrective lenses whatsoever (I didn't mean I wanted 20/20 vision, in fact I meant the exact opposite).  This person said that I was wasting my writing skills and should be more positive about disability.  Hmm – I was merely trying to point out that I wanted to be able to walk around like anybody else who doesn't wear glasses sometimes.  I honestly find corrective e)yewear tiresome sometimes – what with taking glasses off and putting them on, cleaning them, waiting for them to defog when they get steamed up, etc.  Sometimes I actually find it easier to read without them on.

We are all built differently – I wish I was at least 10 inches shorter for a start (I hate being taller than average for a human of the female species in England).  I am happiest when the people I am with make me feel short when I am standing up (this means that I am mostly stuck with men over 6ft 2inches tall).  Let's just say I find the aftermath of having a permanent chest-drain taken out (as in the excruciating pain after the anaesthetic wears off) 100 times more pleasurable than the idea of going “proper” clothes shopping.  My favourite kind of clothes shopping is where I go shopping for something completely different but an item of clothing captures my interest.  Going shopping specifically to purchase items of clothing for myself is my worst nightmare.  I don't mind being towed along by someone else who is going “proper” clothes shopping – in fact – I find that quite fun.  Yes – I know – I'm strange.

I have never been too fussed about what size of clothes I can fit into.  If you have ever seen me you will know I am a fully paid up member of “Scruffs Anonymous” - I go for comfort about everything else.  Even now that I am the thinnest I have ever been since I was at school I still prefer to buy stuff with “room” in it  (most of my favourite clothes are approx 2 sizes too big for me now).  Even the jeans I am currently wearing are a victim of my “I need room” theory – I was going to get them in a UK size 12 (European size 40) when I realised they have a button and a zip (I thought they were the old fashioned “stiff” jeans – as in the ones which resemble blue cardboard when you first put them on) and not an obvious elasticated waist.  So I got a UK size 14 (European size 42).  OK so far – until I realised that they were actually stretchy in the waistband and I could actually take them off without undoing the button or zip.  Turned out the legs of the ones I am wearing were actually longer than the size 12's which I was originally going to buy (I had never seen a 30” inside leg measurement in a pair of trousers on sale in Primark before).

As long as you feel happy with how you look I don't see what right anybody else has to pass judgement on it.  It is what's on the inside that really matters.  It is better to be liked for being kind than for being picture perfect.

Medication - Ooh Medication - Medication - That's What I Need (Or - A Health Update)
1/15/2018 4:21:49 PM
Sorry about the slight rewording of the "Record Breakers" themesong.

Happy Easter! How are you???

OK, OK, I know it isn't Easter yet but it is a bit too late to say “Happy New Year”.

I know it has been a long time since I last blogged on here and I am very sorry about that.  You could say that Medicines kept getting between me and my laptop.  I have been running around after them, having last minute appointments (and being told to go to the wrong building), feeling not very happy after the first time one of them was administered (the next time I had that injection it went into my tummy instead of my arm – a lot less painful), and attending my regular appointments.

So, how am I feeling???  Really???

I think I am finally used to the many and varied tablets I have to take – as in – I am now used to having to take tablets at all.  I hate taking tablets with a passion you can only dream of.  I think that stems from one time when I was in hospital as a child and I wasn't told what a tablet was – I was just told to swallow it – it tasted awful.  From that moment on the best way to find out if I feel properly poorly is see if I seek out any painkillers, etc.  Chances are I won't.

What I am having great difficulty getting used to is my fridge turning into a Storage and Distribution Depot for my Implant and my Vitamin D Injection every month.  Yes – you read that correctly – my fridge appears to have turned into an offshoot of the Chemist's.  What happens is – two weeks before I am due to have my Implant and Vitamin D Injection I have to go to the Surgery to order the prescription for them both, then collect them both from the Chemist's and store them in my fridge before I take them to the surgery to be administered.  It wouldn't be so annoying if I could administer them myself but – oh no – a Medical Professional has to do it.  (Ah – I almost forgot – the Vitamin D Injection can only be administered if the blood-test I have the week before the implant appointment shows my calcium levels are high enough.)  Don't the surgery have enough facilities for storing medication on site???  If not – may I respectfully suggest they extend their premises???  Or go back to me getting the implant and the Vitamin D injection done in a large establishment where they keep lots of medication on site - as well as storing the professionals to administer said medication???  I think you will find these places are called “Hospitals”???

Please excuse the sarcasm.  You can be thankful that I realise my blog may be read by humans under the age of 18 or the language used in the above paragraph would be unsuitable for family viewing.

Me personally???  Apart from the occasional dose of backache if I have been standing around for too long – I feel perfectly OK (Alright – I have currently got a bit of a cold but I am not at Death's door yet).  In fact, every time I see a Medical professional I end up feeling like a Fraud.  There are lots of people who are much worse off than me – I can walk, talk, eat, drink, etc, independently.

Remember, when I came out of hospital I was convinced I would be dead within a month – and the first time I saw the Oncologist she told me my spine was in imminent danger of collapsing.  Neither of those outcomes have occurred yet  Although I am a bit worried about my next Oncology appointment and my next Cardiology appointment.  (If only because those two are the two most likely culprits for giving me yet more medication – increase the dosage of the existing tablets if you have to – just try not to give me any more boxes of tablets to add to my collection please.)

The funny thing is – the best sorts of medication I am on don't come on prescription (although I am convinced at least two of them should).  In fact – they have nothing to do with Medical Professionals in a – well – professional sense (even though some of the providers are qualified Medical Professionals in their own right – just not in the two specialisms which are most likely to subject me to tests, etc.  For which I am very thankful.).

The best sorts of medication which I am on are as follows (in no particular order);

Hugs, smiles, being fed and watered, and general TLC.
Being sung at by my favourite female singer.
Reading a good book or article.
Writing and blogging.
Social Media and texting (Facebook is great for when you want to let off steam about something or ask for help without feeling totally useless.  Twitter is good for laughs as well.  Texting is my favourite way of communicating – I prefer it to talking on the telephone.)

Anyway – I think I have bored you enough about my health – at this point if we were face-to-face I would ask you how you are.  Actually – I will.  How are you?  I hope you are OK.  I sincerely mean that.

I hope you are still feeling entertained by my blog posts?  I have got some more ideas for future posts bubbling in my brain.  I just have to work out how I want to go about writing them.  Blogging is a type of medicine for me after all.

Funny How Life Can Change In The Blink Of An Eye (Or - How I Feel I Have Changed Since The Start Of This Escapade)
12/6/2017 5:19:16 PM
This post was actually inspired by one of those quizzes you find on Facebook.  The quiz was called "How Much Do You Hate Yourself?"  (The answer the quiz came up with was far removed from reality.  It was too positive.)

I know I can be many things to many people (depending on what mood I am in at the time).  I can be the most annoyingly loud human you have ever met or you might end up wondering where to find a magic tin-opener so you can get me to open up and actually speak to you.

One thing you may be surprised to learn is that I am not the most confident person on Planet Earth.  I also find it extremely difficult to accept compliments which are based on something about me as a person.  My shoes or clothes are things I will accept compliments on - things like "bravery" or my writing are the dodgy ground,

Before this escapade started I always felt like I had to compete with everyone else - even when there were mitigating circumstances which meant I couldn't do what they did or get what they had in terms of friendship, treatment, etc.

I always looked for the "But" behind a "well done" - as in "Well Done - but you could have/should have..."  This may sound strange but nobody judges me to a higher standard than I judge myself.  I want to be exactly like everybody else - do what they can do, be judged by the same standards, etc.  Not for me the "we have to make allowances because of her sight - she can't do what we can" - if "she" is determined to do something "she" will get it done in whatever way possible.  Stubbornness is one Dutch trait I am very proud to admit to.

The biggest change is the fact I actually feel more comfortable as me.  I can actually allow myself to play by my own rules.  That might sound strange to you but I am much happier knowing that I can be who I am and not have to worry about whether or not I match up to the expectations of others (most of the time I don't match up anyway).

A byproduct of that is no longer feeling like I have to conform to everybody else's standards.  I can guarantee that someone somewhere will find something odd about me.  It has got to the stage where I smile on the inside whenever someone tells me I am not following the guidelines set out in their textbooks (especially when it comes to either my sight or my ability to keep wandering around without getting out of puff).

The really nice thing is that I don't feel I have to do anything I don't have the energy for.  I must admit that took some getting used to.  I gave up going to a couple of things because I couldn't take the stress any more.  I spend more time with my own thoughts now - and I am quite content with that.

The only thing I would really like to change is being able to go back to being able to go out for one day after another after another.  This has been drastically reduced (especially if my week involves a medical or hospital appointment - Hospitals are very tiring).

Well - I suppose I am still here and that is the main thing.  Trust me - there were times when I seriously thought I wouldn't last this long.  (Not being able to breathe without being attached to an oxygen supply concentrates the mind somewhat, so does a Cancer diagnosis with no Expiry Date - but you are told you will definitely expire from it.  Then being told that your heart has been replaced by an enlarged collander.  What really finished me off was being informed exactly how low my heart rate goes at night when I am asleep - If I thought about that I could become extremely scared to go to sleep.)

I will keep taking each day as it comes - that is the only thing I can do.  I hope to keep taking you along with me.
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