Blog http://inkyworld.co.uk//page11.php When Someone Lives Up To Their Name With Very Interesting Results (Or - The Day I Ended Up Wondering If A Badge Still Exists) 9/28/2018 7:47:29 PM
If I am totally honest about myself I love people with a bit of a twist to them.  If you can stick in my brain for over 30 years because of something you said or did around the time we first met (and it occasionally makes me wonder what you are doing now and hope you are still enjoying your existence) you can't go far wrong.  The icing on the cake would be if we met up again after over 20 years and (whilst you might have physically changed almost beyond recognition) you are still the same kind, friendly person I remember from all those years ago.

That is exactly what happened to me this morning.  I met up with an old school friend who still managed to live up to the Dutch definition of his name in the best possible way.  The interesting thing about that is - he is actually from Sweden.

If I tell you that I have always admired Anders Mankert for being a bit "anders" (as in the Dutch word for "different") you might start to get a bit worried about either me or him.  There is no need to though.  As I am about to explain.

My overriding memory of Anders is from when both of us were sitting in our Tutor group (probably in the first term of the first year of Secondary school) and him getting told off.  Well, it wasn't the fact he got told off that stuck in my brain - more the reason for the telling off and how he responded to it with impeccable logic way beyond his years.

Anders was wearing a badge saying "I am a Swede".  Our form tutor had a total sense of humour bypass as a result of this and told him off for wearing an immature badge.  Anders went up in my estimation with his response.  All he could say was "I was born in Sweden.  That makes me a Swede".  Game, set, and match to Mr Mankert.

Today I had the sheer pleasure of being able to spend time with Anders as we walked around the site of his latest venture - a golf course in Leicester.  The way he explained his vision of what he wants to achieve just reminded me of the boy with the badge and the quick response.

I think the best way to describe his vision for the golf course is as follows - take one rulebook (stating dress code, rules of etiquette for being on a golf course, membership fees, reasons for being anywhere in the vicinity of the aforementioned golf course, etc), rip it up, and start from scratch - building a golf course you yourself would be happy to play at.  (If you can make someone like me feel welcome and catered for using technology, you are definitely onto a winner as far as I am concerned.)

What I am going to say next may sound a little strange but the way Anders managed to infect me with his enthusiasm for the project wasn't his obvious passion for golf, or him talking about how he came up with the idea, or the time and resources he has put into it.  It was Anders Mankert being the Anders Mankert I remembered from school - a kind of person who cares about people.  (Put it this way - I can reel off a very long list of names of children who bullied me in Secondary school.  His name is nowhere to be seen on that list.  He may not have directly stuck up for me but I always felt safe when he was around.)

I wish him every success in his venture (and I look forward to being able to review the place when it opens in a few weeks).

I never thought I would actually end up feeling extremely privileged to count someone I went to school with as a friend as well as feeling proud and honoured to be given a sneak preview of something so fantastic.



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http://inkyworld.co.uk/page11.php?post=448
The Last "First Line" (Or - My Favourite Writing Exercise) 9/18/2018 7:53:40 PM
The first line was "She squelched as she stepped through the doorway into her underground hovel".

You could say I came up with a topical story in a way.

Here it is in full.

"She squelched as she stepped through the doorway into her underground hovel.

Well, to be honest, it didn't exactly start life either being underground or what could honestly be described as a hovel.  However, that is what a typhoon-inflicted landslides can turn perfectly tidy, habitable residences into.

She supposed that, compared to her neighbours, she was lucky - at least her house was still - in a way - standing.  The fact that she really needed a JCB to get to her front door was beside the point.  Of course - being in a remote part of the Philippines - JCBs were a bit thin on the ground.  So she had had to rely on the generosity of strangers with shovels to dig a path to her front door.

Why had nobody warned her about the likelihood of a super typhoon hitting the area she had chosen to move to in order to escape her life back home?

Of course, no one else knew the real reason she had decided to uproot herself (after selling all her earthly possessions) and move to one of the remotest places on Earth.  The reason she gave anybody who asked why she wanted to do it was because she wanted to help the needy and teach English.  You know?  The usual "Do Gooder" ideas which sound a lot better than leaving the country before you are quite possibly arrested and jailed for killing your husband because a divorce had the drawback of leaving him alive to cause you further torment.

As she fell into the hidden hole in the floor in the middle of the room and plummeted to her own death - her last thought was - I wish I had come here earlier.  It certainly would have saved me killing him."

I really surprised myself by writing that.]]>
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]]> http://inkyworld.co.uk/page11.php?post=447 Sometimes Bad Behaviour Is A Reaction (Or Why I Think Schools Are Becoming More Dangerous) 9/6/2018 10:10:18 PM
I was reading an article which really upset me recently - so much so that I didn't know whether to cry or get extremely angry.  In the end I just ended up feeling very sad that the same mistakes appear to be being made as when I was at school (back in the Dark Ages).

I have told you that I was bullied at school and the effect it has had on me (in fact - the only two things I didn't mention are the fact that my time at school put me off the idea of ever having children - as well as the fact that, unless I know either the child themself or their parents personally, children scare me).

There is a flip side to the bullying which - strangely - never seems to enter the minds of the people who are dealing with the results of it.  The victim will do practically anything to escape the situation - up to and including trying to get themself excluded from school.  I should know - I have done it myself.  It even got to the stage where I told my Year Head to his face in the first term of my first year at Secondary school that I wanted to be transferred to the Secondary school in the village I lived in.

Things like Detentions and being put in what was known at the school I attended as "Solitary" (where you spent the entire day on your own - with the occasional supervision from a teacher - and got detention at break and lunchtime) were supposed to be a punishment but, to be totally honest, they were things I lived for in that first year.  Why???  Because they were the only times I felt 100 percent safe in that school.  (If I had thought I could get away with it I would honestly have preferred to have spent all three years in that school working in "Solitary" with the only breaks provided by lessons with the only teacher in that entire school who I could stand being on the same planet as.  No prizes for guessing which teacher that might be or which subject they taught.)

The whole "crime and punishment" debate, as far as misbehaving in schools is concerned, scares me to death.  Not only do the current levels of punishment seem Draconian to me but I have yet to find out about the preceding actions as far as trying to find the causes of the misbehaviour in the first place are concerned.  We are always told that there are preceding sanctions and ways of correcting the behaviour of a student before it gets to the Detention stage but what about if there is a serious cause - like bullying???

Of course, people react to being bullied in different ways.  Some people who are bullied somehow manage to seem able to cope with it and act like nothing is wrong until they are in the privacy of their own bedroom, others may Self-Harm or even attempt suicide, whilst yet others (myself included) end up feeling as though they have committed a crime by the mere fact they exist (especially if - as in my case - they honestly feel they are being bullied by most of the teachers as well as the other students) that they might as well "play up" in class as it won't make much difference to the outcome anyway (and any so-called "punishment" seems like a holiday compared to being stuck in a classroom where you feel like you are being bullied on all sides).

Yes - I agree that students who misbehave in class should be punished if there are no mitigating factors which might explain the reasons behind the misbehaviour.  However, I feel we still need to be very careful about the type of punishment doled out.  Luckily even I escaped corporal punishment (the cane, etc).  But some of the punishments I read about in the article would probably be considered to fall under the category of torture if they were applied to an adult.

I am not saying that school days should be seen as a time of hearts and flowers where nothing bad ever happens (after all - it is meant to prepare you for life in the adult world) but to go through the majority of your schooldays wishing you had never been born in the first place (and feeling extremely jealous of a girl who died of a heart defect similar to yours - the only difference is yours got mended when you were a baby but hers didn't) is not exactly the kind of scenario I would wish upon  anybody else.

We need to have a grown up debate about bullying in schools, punishment in schools, as well as Special Educational Needs in Mainstream Education (as in - is it really appropriate to mix the two without certain caveats?).

In my personal opinion (based on my experience - as well as what I have been told by a friend of mine who has a child with Special Educational Needs and is in Mainstream Education) I think that - unless schools and the Government are prepared to understand that students with Special Educational Needs actually need more attention and careful handling - as well as role models they can actually relate to (in my case I would have loved to have a teacher whose sight was obviously at a similar level as mine) they might as well go back to the days where students like me were autiautomatically enrolled in Special Schools.  In fact, when my Mum told me that my parents had the choice of sending me to a Special School I nearly told her that I wish they had done that instead of forcing me to go through the hell of Mainstream Education.

When I say "we" need a grown up debate I mean one which includes those of us who have seen the blackest of black sides of Education as well as those of us who have apparently sailed through school without a care in the world and got top grades in all their exams.  Only when we are all included will we get a proper idea of the kind of Education system which would benefit every single child both now and in the future.


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]]> http://inkyworld.co.uk/page11.php?post=446 You Shouldn't Have To Hide Who You Are And What You Believe (Or - It's What's On The Inside That Counts) 8/27/2018 7:25:18 PM
All three people had one thing in common - they are all Muslim.  They are all very kind people as well.

I am not going to tell you their names (because I don't want one of them to get into trouble) nor am I going to quote them directly (for the same reason).

As we were talking the subject got round to various aspects of Islam and other people's opinions and ignorance of it.  One of the three was a bit upset because they had apparently been informed that they should not be their normal outgoing, bubbly, self, due to their attire.  Now - even though I am not a Muslim - even I know that Muslims are allowed to have a laugh and a joke regardless of what they happen to be wearing.  Well, with one possible exception.  Muslim ladies who dress head to foot in black complete with black niqab don't exactly give the impression they have a sense of humour anyway.

As I pointed out - I could have understood my friend being told off for being their bubbly self if they were dressed all in black complete with black niqab as Muslim ladies who dress like that attempt to merge with the scenery as much as possible (if it was an invisibility cloak I am sure they would be much happier).  Let's just say that the first time I saw my scarf (hijab) wearing friend I liked them immediately because they were wearing a bright pink hijab.  Extremely easy on my eyes. A tip - if you insist on wearing a hijab the more brightly coloured the better.  Remember I said that my friend was wearing a blue scarf (hijab) on Friday???  I immediately pointed out that I could have understood the comment if they had been dressed head to foot in black complete with niqab but not when my friend was dressed as she was.  All three friends agreed.  One of them even said your beliefs are not worn on the outside.  It is what is on the inside that counts.

On Sunday morning I heard a sermon which was roughly along the same lines (at least that is how it came over to me.  This was almost repeated by two very close friends of mine but not in as many words - in fact - one of my friends repeated it in how she acted around me.  She is one of those people who I only have to be in their presence and I feel my batteries recharging (her hugs and smiles are like express recharges).

You may have seen the term "Performing Seal" either on this blog or on the Simple Solutions blog???

This is the term I use to describe when I feel like I am "on show" and I have to act a certain way (this usually means I feel like I have to be like everyone else - even when I know it is virtually impossible).

Yes - I have got a sight problem (or visual impairment).  I have been "socially trained" to hide it much as possible when I can.  And - if you want proof - I could name at least two very close friends of mine who told me they hadn't realised exactly how bad my sight is until they read my blog.

However, sometimes I just want to be able to be me.  Even if it actually involves me taking my glasses off when I am sitting down with my friends.  (Don't worry - I wouldn't dream of walking around in public without my glasses!!!  I know my limits!!!). I think I have stated before that my glasses actually place boundaries on me which don't exist if I haven't got them on.

Allow me to attempt to explain what I mean.

When I am wearing my glasses I feel like I have to act like everyone else because I am obviously different to most people I know (a large proportion of my friends either do not wear glasses at all or only wear them part time).  Whereas, if I don't wear my glasses I look like most of my friends.  The fact that I can only see clearly approximately 3 centimetres from the end of my nose - therefore rendering me both functionally useless and a danger to myself and others if I attempt to wander around in places I don't know - is beside the point.  I can read (if I hold whatever I am reading close to my face), I can successfully drink a cup of tea and much a sandwich, etc.  Just don't ask me to walk around very far.  I have tricks to help me do what I need to in the event of me either losing or breaking my glasses.  (Why do you think I wear glasses with metal frames which are either blue, silvery-grey or - as in the ones I am currently wearing - brown???  They are easy for me to pick out from most colours of background).

It is to stressful to hide who we are all the time.
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]]> http://inkyworld.co.uk/page11.php?post=445 My Experiences Of Being Bullied (Or - Why I Don't Think The Laws On Abuse Will Ever Be Tough Enough) 8/27/2018 5:39:13 PM
Have you ever asked yourself why I am so kind and caring???  No - it isn't because I am trying to get on your good side and gain your trust before I commit some terrible crime against you.  In fact - the exact opposite is genuinely the case.  I am extremely protective of my friends.  Anyone upsets any of my friends they also end up with an upset Ineke.  An upset Ineke is not very friendly - especially when dealing with someone who has upset her friends.

Don't worry - I am not physically violent (although I think I could give some of my friends who are into Martial Arts a run for their money if I put my mind to it) nor am I verbally abusive.  The Lifeform who has upset my friend will be made aware of their error as they are spoken to in a calm manner.  Failure to heed the warning will result in them being ignored completely.

So - why did I say I am dangerous???  Well, if I treated people who I don't like or agree with in the same way I have been treated by people at school and in my last job I would be looking at a potential prison sentence.

I am not going to tell you exactly what form the physical bullying I was subjected to at school took (let's just say - if it had happened anywhere else I think the bullies in question would have been looking at a charge of Attempted Murder in one instance).  What I want to talk about is the effects bullying still has on me today.

Well, you already know about one of them.  If I consider you a friend you are cared for and about (including worried about).

Another (not so nice) effect is the time it takes me to trust someone.  I am not joking when I say it has been known to take literally years for me to trust people

A slightly odd effect is - the more threatening you look when I first meet you the more chance you have of me talking to you uninvited.  However, the more friendly you look (unless we are in the same room as an existing friend of mine) the less chance you have of me speaking to you uninvited.  (Of course, if I know you from Social Media before we meet in real life your ears may be talked off anyway.)

Bullying can happen directly and intentionally (as my experience at school testify) as well as indirectly and unintentionally (as some of my experiences at my last job testify).

Allow me to attempt to explain what I mean by "indirectly and unintentionally".  On several occasions in my last job I was actually what could euphemistically be called "Collateral Damage" - as in - I wasn't the intended target of the bullying but I was still hit by the resulting "shrapnel" when the actual target couldn't get hold of my boss.  In a couple of instances I was actually in the same position as the intended target but I couldn't say anything to them because that would have meant me losing my job.

(By the way - the "unintentional indirect bullying" doled out to me by my last boss was concurrent with the direct intentional bullying.)

Two extremely vivid examples of the "unintentional indirect bullying" were as follows (and they put me off the idea of ever working in an office again);

The less serious of the two was being informed that "if you work for a liar and a thief that makes you one as well".  What the person who said that to me didn't know was he and I were both waiting to be paid (similar timescale vastly different sums of money).

The second (and much more serious) one was when a very serious allegation was made about my then employer which had the incident occured in this country - would have resulted in me going to the nearest Police station to report my employer.

Bullying comes in many forms and has long lasting consequences for the survivors.  These consequences can range from death (either as a result of being killed by someone else or suicide), to hating yourself, to not trusting anyone, to (and - yes - I have done this) making someone you met years after you left the situation where you were bullied pay for something one of the bullies did to you as a result of the "new" person triggering the same feelings without realising what they did.

Well-meaning people give all sorts of advise on what to do when you are being bullied.  Some of it works - some of it is actually downright dangerous.  (Unfortunately for me - telling a teacher wasn't exactly an option for me.  Partly because I felt that some of my teachers were also bullying me in one way or another - also partly because the one teacher who I can categorically state was never involved in the bullying was not only the form tutor of one of the "attempted murder" bullies but he was also friends (and - as far as I know - still is) with the teacher who I considered to be my second biggest tormentor on the staff of that school - after the Maths Teacher from Hell.

I did end up with a rather strange (and a certain Clinical Psychologist friend of mine might also call it "unhealthy") coping mechanism to deal with the bullying.  I ended up pretending it wasn't happening to me.  That took me quite some time to master (both at school and in my last job).  However, the ironic thing is - that is exactly what is helping me cope with the chemo.  Of course I know it is happening to me - having a cannula almost drilled into a vein in your hand every week isn't exactly painless after all.  But convincing myself that I am actually at a concert involving some of my favourite singers and musicians whilst the chemo is going in actually helps me to enjoy the experience.  All I need is my mobile phone and my earphones.  (The only thing which would be better is if my favourite female singer was in the Chemo Suite with me giving me a personal concert!!! Oh well - I can daydream, can't I???)

Ironically, the one piece of advice which nobody gave me but actually works for me is - get creative.  In my case, Creative Writing has helped me a lot.  I can daydream about different scenarios.  One from my schooldays involves a Science Lab full of Bunsen Burners on full blast and a window-opening pole used as a skewer (I will leave it to your imagination as to what I would use the skewer to cook.  A clue - a couple of them have already been mentioned.).  Please note - I did not live out that particular daydream.

Bullying and other forms of abuse and terrorism are serious crimes with longlasting consequences for the victims.  We need to look at making the laws on such crimes much tougher.  I am not usually in favour of Capital Punishment but if you make someone's life so miserable they no longer think it is in their interest to continue living - you should be subjected to the exact same treatment.  And if you kill someone as a direct result of bullying them you should be given the same treatment.

I know that is in direct contradiction to my Christian beliefs but - when your life has been made as miserable as mine has (to the point where I seriously considered suicide on at least two occasions) the idea of "turn the other cheek" just sounds like an invitation for the bullies to finish the job off for you once and for all.

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]]> http://inkyworld.co.uk/page11.php?post=444 Everyone Has Their Own Definition Of An "Inspirational Person" (Or - The Day I Found Myself Agreeing With A Truly Inspirational Person) 8/16/2018 8:35:21 PM
That leaves "Inspirational".

Well, I must admit I don't hate it as much as I do the other two words.  It is more that I don't feel I deserve it at all.  I know too many people who I would say are far more inspirational than I am.  I have introduced some of them to you via this blog and there are others who I would love to introduce you to but I do not have their permission to share their story with you.

I was with one such person today.  This lady has shared some of her story with me - and she calls me inspirational???  I am honestly amazed by her caring nature and her emotional strength which has got her to the place she is at now.  One of these days I am going to ask her if I can share some of her story with you because - all I am going to say is this lady is a true survivor.

The funniest thing is she told me that she actively looks for anything I post on Facebook and is relieved to find I have posted something.  The reason I said that was funny is because I do exactly the same when it comes to looking for her replies.  If I see a reply from her it is one which I know is filled with caring and love.

I will give you an example of something which she surprised me by agreeing with me about.

If you have read this blog before you will know that I am not a fan of those Muslim ladies who dress head to foot in black complete with niqab - purely because I have difficulty seeing them in most lighting conditions.

Then Boris Johnson made his extremely ill-advised comments about Muslim ladies, burkas, letterboxes, and domestic abuse/terrorism.  The resulting furore left me feeling angry because I already have a major problem with the "Top Trumps" game between the Religious Discrimination Act and the Equalities Act (and the preceding "Disability Discrimination Act).

Allow me to explain - I cannot see a Muslim lady dressed head to foot in black complete with niqab.  I have no problems with the lady wishing to cover herself from head to toe if she so desires for whatever reason - she is free to practice her religious beliefs in whatever way she chooses (up to and including wearing a burka if she so desires).  My problem is not with the clothing itself (better minds than mine can argue about whether or not it is oppresive to women to dress that way).  My problem is with the fact that most Muslim ladies I have seen wandering around Leicester in the niqab are dressed head to foot in black.  Let's just say that - not only does wearing all black prevent men from seeing the shape of your body - it also ensures that someone with my sight doesn't process you as a human being at all until I am almost standing on your toes.

Apparently, according to the furore caused by Mr Johnson's ill-advised article, my sight problem puts me in the classification of "Islamophobe".  Hmm - if I was an Islamophobe I would not have friends who are Muslim would I???

The lady I was with today was one of three Muslims (one of whom I had not previously known is a Muslim) who actually reassured me that my sight problem didn't make me an Islamophobe - just someone with a sight problem who doesn't find it easy to see people who are dressed head to foot in black.

My friend also said that it is not important what someone wears to practice their religious beliefs - what is important is how they behave.  My friend dresses what I would call modestly but doesn't wear a hijab or any other form of "Muslim" clothing.  We have a mutual friend who - the first time I saw her - got complimented on her bright pink hijab.  And when I say "bright pink" I mean it was a good job my glasses are reactolites (transition lenses) otherwise I might have had a headache as a result of seeing it.  I prefer bright colours to darker ones.

If someone is prepared to take the time to explain the language they use (especially if it is a foreign language) and some of the more confusing aspects of their religion without making me feblike I am being judged for my ignorance, they are the truly inspiring people.

The term "Inspirational" can sometimes be in danger of losing its meaning due to overuse but there are times when it is the only word in the dictionary which can be used to describe someone.  Just please don't use it to describe me as that is a waste of a powerful word.
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]]> http://inkyworld.co.uk/page11.php?post=443 When Wheels Legally Beat Feet (Or - A Disabled Person Is A Disabled Person Even When They Can Walk) 8/16/2018 8:28:41 PM
You might have read the above paragraph and wondered what my problem is with that???  After all, someone in a wheelchair is obviously more disabled than someone who can walk.

Not necessarily.  I have friends who use wheelchairs but can walk short distances.  I would also suggest that someone with a visual impairment is actually more disabled than the person in the wheelchair - even if they might not appear that way most of the time.  (I am typing as someone with a visual impairment myself.).  Me walking down the aisle of a moving bus attempting to find a seat can be a very dangerous proposition indeed.  In fact, I have - on one occasion - injured my back as a result of falling backwards when a bus slammed its brakes on hard as I was walking to the back of the bus.  My scream as I hit the floor was almost enough to wake the dead.  It certainly shook the driver up.

The strange thing is - while a wheelchair now has legal priority over a pushchair or pram when it comes to parking spaces on buses - I, as a "Walking Disabled"person cannot force anybody to eject themself from a seat which is designated for the use of Disabled and Elderly people (or those who are less able to stand) - even when there are signs near the seats to that effect.

One of my wheelchair using friends - Michael Gilhooley - surprised me by agreeing with me when I put a comment on Facebook stating that I think the "Walking Disabled" should have the same legal rights when it comes to buses as the "Wheeled Disabled".

As it stands now - the only way I am guaranteed to get a seat on a crowded bus is to hope it is too hot for me to walk around without my Walking Tank.  If I appear on a bus attached to that I can guarantee I will get a seat no problem.

It should not matter whether or not I appear to be "obviously" disabled. The fact that I have a Disabled Bus Pass should be enough for me to get a seat in the designated seats.  After all, a few months ago another passenger thought I had no right to sit in the Disabled seats until I showed them my bus pass - which they accepted - so why doesn't the same bus pass give me the legal right to sit in the designated seats???

We really need a proper debate as to what exactly "Disabled" means legally.]]>
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]]> http://inkyworld.co.uk/page11.php?post=442 Signposts Are Not Much Use If They Don't Point The Way You Are Supposed To Go (Or - How To Stop Me From Liking Your Town Or Hospital) 8/16/2018 7:53:44 PM
I know my sight is pretty useless at times but I can usually see and read a handily placed sign directing pedestrians to different places.  I cannot, however, read invisible signposts.

The same goes for signs in hospitals which are supposed to show you the way to different departments or rooms.  It took me two weeks to remember that the Chemotherapy Suite at L eicester Royal Infirmary is a left turn out of the lift and go straight on.  The only indication of where it is is a small (to me) sign on the door itself.

I am one of those people who can easily start to panic if I know I am supposed to be somewhere but I haven't got a clue how to get there.  This is why I prefer to have clear signposts or signs which are not like some Belgian roads which my Dad has driven on - as in - start off looking like something it might be useful to follow then disappear into thin air (or - in the case of the roads - a dirt track) without warning.

If you know the place you are visiting, or you are familiar with the layout of a particular building, signposts will probably be something you regard as more of a distraction than anything.  However, for a stranger (or someone like me) signposts - or rather the lack of them - could mean the difference between them making a return visit (and recommending it to their friends and family) and never wishing to visit the place unaccompanied ever again.  (And - as someone who prefers to travel independently - I am not likely to put my friends out if I can get to a place and back again on my own.)

Some shops are the same.  Very little in the way of usefully placed signs showing where things are.  I lost count of the amount of times I circled a floor of John Lewis, near the Highcross Shopping Centre in Leicester, looking for the bedding Department.

If people could spare a thought for those of us who can get confused if we are forced to make a lot of turns in different directions to get somewhere (and remember the same turns so we can get back to where we started) - we might find ourselves being able to guide ourselves just by looking at usefully placed signs which we can actually read.
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]]> http://inkyworld.co.uk/page11.php?post=441 The Best Teachers Are The Ones Who Can Inspire Their Students Even Outside The Classroom (Or - The Strange Link Between My Most Influential Book And My Most Inspirational Song) 8/16/2018 7:15:01 PM
There are two slightly odd connections between those two items.  In fact, the second one kind of pre-dates the first one - even though it was written at least 20 years after the first one.

Now I have got you scratching your head in total confusion I will attempt to explain it in a way that you might be able to understand.

How can a song which was written approximately 20 years after a book was published pre-date the book???  When the song lyrics read like your life story it does.  You need to listen to the song to find out what I mean.  I haven't asked her if it is about me (I don't really want to find out).

The other link between the two is the fact that both authors either are or have been teachers (as in fully qualified, stand in front of a classroom and teach, teachers).  I should know about Mr Bowkett being a teacher - after all, he was my English teacher in my first year at secondary school.

Knowing there is an age difference of approximately 31 years between Mr Bowkett and Kristyna (I am approximately 11 years older than Kristyna), I have found some interesting similarities between them.  They have both educated me (and continue to educate me) and they both inspire me to do my best writing.

If you think education only takes place in a classroom you couldn't be more wrong if you tried.  And if you think education is about stuffing the heads of students with so much information that they are likely to explode you couldn't be more wrong.

To me - the biggest part of teaching and education in general is about inspiring your students and showing them that following their dreams will take hard work, blood, sweat, and tears, and - in some instances, only the very lucky ones will hit the big time but as long as you enjoy what you do it won't matter if you become world famous.

You could say I have had a "behind the scenes" look at both of their writing careers.

I still remember sitting in Mr Bowkett's classroom having been told to write in silence whilst hearing "bang, bang, bang, bang bang, bang, bang, bang bang bang bang, ding" on repeat as he typed what I now presume to be part of a book out on a manual typewriter.

My initiation into the world of singer/songwriters was a lot less deafening but no less educational.  I have been lucky enough to be taken to gigs and see an amazing talent perform - as well as seeing some of the other work that goes on behind the scenes.

There is - however - another connection between the two teacher/author combinations.  You are reading it.  If there is one thing I have learned from the pair of them it is this - the bed eay to write is to write from the heart.  Write about what you are passionate about.  Don't try to change the world through your writing - instead try to inspire others to help you change the world by changing their own bit of it.

"Spellbinder" was published just before I started in Mr Bowkett's English class.  For a bookworm who was having serious problems at school both that book and the author were literally lifesavers.  That book showed me that daydreaming (when usefully harnessed and directed) could actually be an asset instead of a negative (it only took me over 30 years to get a job where I can write for a living myself - except most people would call it blogging.  Me???  I call it getting paid to play with words and educate people about the challenges I face due to my sight at the same time.  (I blog for a company called Simple Solutions.)

The other way "Spellbinder" influenced this blog is the way in which it is written.  I have read more of Steve Bowkett's books - and they all have one thing in common.  I can hear his voice as I read them.  I have got one of his books on teaching English upstairs and (I did tell him this when I saw him a few days ago) I could hear him utter what I consider to be his catchphrase of "We'll write a short note about that" at the end of every chapter.

I know that both Steve and Kristyna are fans of my writing but - honestly - if my writing is even a quarter as good as either of theirs I will be a very happy writer/blogger indeed.
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]]> http://inkyworld.co.uk/page11.php?post=440 The Ingredients For A Perfect Friendship (Or - How To Know How Close I Think You Are) 8/16/2018 6:09:39 PM
The worst question I was ever asked in a job interview (and it completely put me off the idea of working for the company who was interviewing me) was "what sort of friend would your friends say you are?" (or words to that effect).

Seeing as I value loyalty, respect, and trust, very highly indeed when it comes to my friends - all I could say is "you would have to ask them".  And - no - I didn't hand the interviewer my mobile so they could ring one of them!!!

There are certain qualities you will definitely need (as well as the three mentioned above) if you want to be friends with me which may be a little different to what most people look for in a friend.

Anybody who has spent any longer than five minutes in my company (either in real life or on Social Media) will definitely agree with this one - you need a sense of humour which can handle quirkiness.  To say I am not the most conventional person on Planet Earth is something of an understatement.  I can just about guarantee that I will either say or do something which you will find strange.

Another quality which I look for in my friends is something else which may make people (usually English people) feel seriously uncomfortable is - straight-talking to the point of bluntness.  I have an extremely low threshold for people who "dress things up" or go around the houses, or try to put things in such a way as not to offend people.  "Let your 'yes' be yes and your "no" be no is something I live by.  I have been hurt too many times by people who have not said exactly what they meant.  I don't deal very well with having to work out the intentions of other people.

But - I hear you ask - what do I get in return???

According to some of my friends you get the services of a non-judgemental Sounding Board.  Unless you say or do something to upset me, my friends, or family, you can say what you want to me and it won't go any further (unless, of course you are planning on breaking the law).

You will get help - if you are prepared to attempt to help yourself at the same time.

A free comedy service can also be arranged.  Especially if I think you need cheering up.  This is usually performed with me as the subject as well as the comedian.  I don't mind taking the Mickey out of myself (but I wouldn't advise anybody else to take the Mickey out of me if they have just met me).

You also get loyalty, honesty, respect, and caring fitted as standard.

So, what are the signs that I consider you to be a close friend???

You get the real me to start with.  The more comfortable I feel with you the more quirky I can get.  You might even find me saying exactly what I think when I think it (without feeling like I have to filter my words to protect you).  And - if I feel really comfortable around you I might gently tease you about some aspect of yourself which I find interesting. For example, have you got an interesting accent???  One of my very longstanding friends has found themself being called "Pocket-Size" (and - trust me - I wouldn't dare say it if I hadn't known them for over 30 years).

You also get trust, loyalty, respect, and honesty.  And when I say "honesty" I definitely mean that.  You will soon learn that I mean exactly what I say.

Another thing you will get is my support in whatever you do (as long as it is legal and not likely to harm anyone in anyway).  My close friends have accidentally ended up with free advertising on this very blog.  I love showcasing my friends and their talents.  Singers, writers, photographers, etc.  If you are a close friend of mine and you have a talent and/or a project I support the aims of you are guaranteed a bit of free publicity.

I hope this gives you a bit of a taster of what it can be like to be classed as my friend.  If you want to know more about the kind of friend I am you could always find out if you know any of my friends personally and ask them.


 
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]]> http://inkyworld.co.uk/page11.php?post=439 Surely A Disability Is A Disability Whether It Is Physical Or Poor Mental Health??? (Or - Why The Blue Badge Debate Has Missed Something Important) 7/30/2018 2:41:50 PM
There is only one minor problem with this as far as I can see (and I am using the word "see" for a very specific reason which I will explain in a minute).  It is very rare for physical disabilities and poor Mental Health not to be connected in some way.  After all, you cannot divorce the physical ability of someone from their brain and their Mental Health because they are both part of the same person.  There are even some physical illnesses which can actually manifest themselves as a sign of poor Mental Health (I am talking about not wanting to mix with people if you are having difficulty breathing, etc).

On the flip side to that - there are certain Mental Health conditions which definitely have physical symptoms attached to them.  Anxiety for one - an anxiety attack or a panic attack are both labelled as Mental Health issues but they both have very real physical symptoms.

There is another side to this which I find fascinating.  Remember I told you I was using the word "see" for a specific reason???

My friend, Julian Harrison, has got depression and OCD (Obsessive Compulsive Disorder).  He also wears glasses.

I have had Depression in the past.  I also wear glasses.

(I bet you are now wondering where the Hell I am going with this - and whether or not I should have run this past another friend of mine who happens to be a retired Clinical Psychologist???  Don't worry - Julian has already proved the theory I am going to share with you.)

The connection I want you to focus on is the fact that Julian and I both wear glasses.  Why???  Well, we have both been known to do something which most people find strange.  And (as illustrated by an episode of "Would I Lie To You?" when this was discussed - the reason most people would give for doing it is actually related to sight and not Mental Health.

What is this thing that Julian and I have both been known to do???  And what are our reasons for doing it???

Simple, if we are going to a strange place (in my case this is particularly when I have to go somewhere strange in the dark on my own) we will both do a dry run before we have to do the journey for real.

Julian will do it because of his OCD and I will do it because of my sight (I have useless night vision).  Failure to do this can actually make me panic so much about leaving the event or venue after whatever I am attending has finished that I will not enjoy the event.  (You try wandering around in the dark with multicoloured spots in front of your eyes, as well as being blinded by the headlights of passing traffic, and see how happy you feel.  It is much worse when you are trying to work out which bus you need to stop so you can get home.)

We have to be very careful about trying to treat Mental Health difficulties as totally separate from physical disabilities.  Especially when you realise that things like Depression can be a "side-effect" of certain physical disabilities (especially when the disability in question can result in someone being bullied about it - or worse - when the disability renders someone housebound with the associated risk of loneliness).

The thing I find most interesting is that there is not much discussion regarding the similarities between things like Depression and being seriously short-sighted.

Allow me to explain - when people are in a severe depressive episode they cut off all contact with people.  When I hit my "performing seal" limit (as in - I just want to go back to being myself without having to hide my difficulties) the first thing I will do it tidy myself into a corner and not speak to anyone.  Basically, I will go into "Mental Energy Conservation Mode".  When I hit that stage I would strongly advise you to leave me alone unless you really wish to be faced with an inconsolable blubbering wreck who probably hates herself more than she hates anyone else.

The thing I have never understood is why the Disabled (be it physical or those with poor Mental Health) are always forced by the "able-bodied" section of society to pretend we are something we are not (and - in most cases - will never be) or we are thought of as some kind of Superhero when we somehow manage to find a way to compete with the "able-bodied" on their terms.

The whole debate about Disabilities (visible and invisible) has been hijacked by the wrong people.  The "able-bodied" will never have a clue about what it is truly like to be me, for example (unless of course something happens to deprive them of the ability to see clearly any further than three centimetres from the end of their nose without glasses - and that is before you add the other "fun" challenges to the mix).  The "able-bodied" should - of course - join us in our fight for true recognition and representation (otherwise we are just shouting into a hurricane) but us people with true experience of poor Mental Health and physical disabilities should be encouraged to tell the stories of our experiences without the able-bodied telling us we are making it up or - worse - telling us that our experiences don't matter.

I would like to finish this by telling you why I admire the BBC Security Correspondent (or Security Editor), Frank Gardner.  For those of you who don't know who I am talking about - he is the journalist who got shot and ended up in a wheelchair as a result.  The reason I admire him is because he uses his journalistic experience (and Social Media) to highlight the treatment that wheelchair users are subjected to when they are attempting to leave an aircraft (among other situations).  He doesn't preach or play the "woe is me" card.  He just sayashEErs he sees it.  Having experienced both "worlds" he can shine a torch on issues so the "able-bodied" get a taste of how difficult life can be for the disabled in a way that the "able-bodied" can understand.

If only I could do the same about sight problems.
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]]> http://inkyworld.co.uk/page11.php?post=438 Why I Think The Arguments About Representation And Recognition Of Minorities Are Focusing On The Wrong Thing (Or - Everyone Working Together Might Be More Useful) 7/28/2018 12:29:54 PM
I have several problems with the arguments regarding recognition and representation of the "Minority Communities".  The biggest one being as follows - the people who could help us the most (let's call them the "Majority Communities" are not involved in any way shape or form.

We will only get true representation and recognition when the "Majority Communities" actually understand the challenges we face on a day to day basis.  This is not helped by different "Minority Communities" appearing to be directly fighting against each other for the same thing.

Allow me to give you an example.  As someone who is Registered Partially Sighted I am covered by the Equalities Act.  However, there is one occasion where the Equalities Act doesn't quite do its job (and I am not talking about the purchase and wearing of glasses either - even though that is not covered by the Act).  In a game of "Legal Top Trumps" the Religious Discrimination Act actually works against me (and can put me in danger).  A Muslim lady dressed head to foot in black with a niqab isn't exactly the easiest person for me to see and distinguish from the background in most lighting conditions.  I have seriously mistaken some of them for traffic bollards, fast-moving loose Wheelie Bins, etc.  (In fact, I am not the worst at that - I spoke to one Muslim lady a few years ago who ran her neighbour over because she couldn't see her in the dark.  The lady who got run over was next seen wearing reflective tape on her outfit.)  But - if I point out my difficulties to a lady dressed in that way they can quite legally and rightfully say that they are free to observe their religion by dressing exactly as they wish.  I have no problems with this.  All I would like is for anyone who chooses to dress head to foot in black to wear a brightly coloured item of clothing - even if it is only a scarf.

The next question we have to deal with is the definition of "Recognition" we are aiming for.  Are we aiming for a situation where members of the "Minority Communities" are recognised as existing and useful members of Society? Or are we aiming for a situation where the individual members actually receive recognition for the fact that we have to work 20 times harder than the "Majority Communities" just to get to the same position in life???

I am not going to play the game where the different "Minority Communities" fight to see which community is the worst off when it comes to recognition and respect from the Majority.  Every single "Minority Community" faces its own challenges.  However, I fail to see why we cannot all come together and work as a group.  Last week I was involved in a debate on Teitter which started out as a debate about the representation of BAME (Black and Minority Ethnic) people in the Police.  This quickly got changed to "the representation of Minorities in the Police" thanks to me and a few others pointing out that there is not that much difference between the BAME, the LGBT, the Disabled, those with poor Mental Health, etc.  Our main problem is that none of the "Minority Communities" are adequately represented in the Police.  I don't know what it is like to be black or a Muslim or a member of the LGBT community.  However, I do know what it is like to feel discriminated against because of something I cannot change about myself.

The representation issue is a bit of a double-edged sword as far as I am concerned.  This is particularly applicable to the Mainstream Media.  This may shock you but I did at one time want to be a proper qualified journalist with a Mainstream organisation.  That was until I realised that I would be far better blogging and putting my viewpoint across on here.  At least I have got a voice on here and I can say what I want (as long as it is within legal parameters and doesn't offend anyone).

The Mainstream Media seem to have two attitudes towards the "Minority Communities".  They decide that they are worthy of almost being treated like the "Majority Community" - as in - being given a "proper" job (as a reporter, etc) but (a) not paying them the correct rate for their work and (b) not letting them anchor the major news programmes.  (I am thinking about journalist who I suspect is either blind or Partially Sighted who works for the BBC who I would love to see anchor the News at  6.)  Or they use them to fill quotas and make up the numbears.  Apparently not caring if they truly fit the part they have been given.  I have to admit that I stopped watching the panel type quiz shows "Mock The Week" and "QI" since the BBC brought the quotas on women in because I found the women more offensive than the men.

I am a firm believer in getting somewhere on merit.  The fact that I have personal experience of the difference in the rules that Disabled people are subjected to in order to reach the saw level as "able-bodied" people just makes me more angry when I hear about quotas and things like "women only shortlists", etc . Don't the people who come up with these crazy ideas realise they are making the problem worse not better.  And this is coming from someone who was never sure if they were invited to attend job interviews on my own merit or because the organisation had a quota of Disabled people to interview.

Guess what guys and girls??? I think I might have proven I am reasonably intelligent???  Yes - there are certain things I cannot and will never be able to do due to my sight.  However, I have got a lot more going for me than that.  I am creative.  I can communicate in two recognised languages.  I have a very good memory.  I am polite, friendly, respectful.  I am adaptable (and I don't just mean in the context of the question you are asked about that subject in a job interview).  I will try my hardest to get things done (OK so my methods may not exactly be the most conventional you have ever come across sometimes bUT at least they are legal).

Don't judge me on what makes me different from you - judge me on what makes me the same as you.
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]]> http://inkyworld.co.uk/page11.php?post=437 I Am Just Me (Or - Why I Don't Feel I Am Any Better Than The Rest Of You) 7/28/2018 10:56:23 AM
Calling me "Brave" is the thing I hate the most.  I know people who I consider to be a lot braver than me.  What is so brave about going about your daily life whilst going through treatment for cancer???  Nobody told me I was "brave" when I was being bullied at school, or when I was teaching myself how to cope with the teaching methods, or when I was "socially trained" to act like everyone else in order to fit in (even when some of the things I had to learn were the exact opposite of what I was most comfortable doing).  That was when I felt I was being brave.

The other word - which I am slightly more comfortable with is "inspirational".  However, not for the reason you might mean.  I don't consider myself to be inspirational but I have seen a way in which I have inspired people.  You are currently reading it.

There have been some rather curious coincidences involving s a few of my posts on here.  I got my job with Simple Solutions as an indirect result of this blog.  I have also found myself being thought of as an "expert" in blogging by someone who I truly admire in the field of Community Media.  I also managed to accidentally educate a few people about the challenges I face due to Photophobia as a result of a video and blog post I put up about it (being told by second year Journalism students that that particular blog post was interesting really made me feel good).  However, the biggest and most recent coincidence actually involves my last blog post.

I very rarely discuss ideas for blog posts with anyone (unless I have a specific person in mind who I would either like to collaborate with or whose photographs I would like to use).The last blog post was a little different because the idea came to me during a Twitter conversation with one of my friends.  Then put the idea on Facebook and asked if anybody would be interested in reading it.  Another friend offered to send the link to someone they knew who might actually be able to do something about the issues I highlighted.  So I typed the blog post and posted it.  I didn't think anything else would come of it.  Until yesterday that is.  I went to the Social Media Cafe (the first time since I came out of hospital) and met the friend who offered to pass the link on.  Whilst we were there a mutual friend turned up and - when she heard about the blog post (and the associated story) she offered to pass the link on to her contacts.

Now - that is the sort of "inspirational" I like being.  It involves me using my talent to highlight something which can be used to help or educate other people.  It is even better when other people decide to join in my efforts.

You could say I am a "solo flyer" (even though I hate flying with a passion you can only dream of).  What I mean is - I am happiest doing things on my own without distractions.  But I am very pleased when someone either uses something I have done as a springboard for one of their projects or decides to do something to make the world a better place as a result of something I have written about on here.

Of course, I love showcasing the work and projects of my talented friends on here.  In fact, had it not been for a couple of very good friends of mine reading a review I had written of a gig one of them had done (on the original inkyworld) and telling me how much they liked it - and that they both think I am a good writer - you certainly would not be giving yourself potential eyestrain and a potential headache by reading this.  Inkyworld only exists thanks to people who tell me they like reading my ramblings.  So have a BIG THANK YOU HUG for your support.]]>
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]]> http://inkyworld.co.uk/page11.php?post=436 The Story So Far (Or - My Side Of The Story Regarding My Treatment During My Current Escapade) 7/20/2018 5:37:21 PM
Whilst most of my interaction with the Medical Professionals subsequent to the diagnoses has been faultless there have been times when I wanted to ask them to treat me as a human instead of a caseload.

Some of what I am going to say in this blog post is personal to me and my situation but other things are what I feel should be done differently for everyone's benefit.

The funny thing about a diagnosis of cancer is the fact that - if you are like me - it doesn't quite come in the way you expect.  I am a bit like a computer.  OK so my "logic" function may not operate in the same way as everyone else but I still try to get information in some sort of order.

I remember when I was told it was probably cancer.  I remember this because the first thing I was told would give anybody a clear indication of exactly what we were dealing with was actually the last thing to hapoha before I was discharged from Glenfield Hospital in June last year - a biopsy.

When it became clear that not only was it cancer but it had spread the Doctors took my first choice away from me.  I was trying to deal with the news in my own way (at that point I was actually working on the - sensible due to what had happened to my Mum in 2007 - that I would be dead within a month).  What I did not need at that point was to have a continuous reminder of the seriousness of my situation as a result of having Palliative Care nurses set on me without my permission.  They may well exist to make life easier for people like me but I just ended up feeling more and more stressed out when they appeared.  In the end I actually told them not to contact me again after I had been discharged.

The biopsy turned out to be a frightening situation for me.  Approach me with a needle or a bladed instrument and I had better be able to understand why you are doing this.  The Dr who did the first biopsy when I was still an inpatient might as well have been speaking in Urdu for all I understood of what she said to me!!!  The clarification came in the form of a letter I saw when I got home two days later.

The next person I saw was the Oncologist.  This lady is a bit "academic" for my tastes.  She also threw another possibility into the mix.  I didn't realise - until I saw her - that being half-Dutch (and taller than average) was a possible symptom of Madden Syndrome.  Stupid me thought it was a symptom of having a Dutch Mum and an English Dad.  Apparently this syndrome isn't life-threatening (even though I have actually got the associated heart and sight problems anyway).

What she did tell me - which no other Medical Professional deemed it worthwhile to tell me was an expected expiry date.  Now I could get some form of a plan together for how to deal with it.

During that first stint in hospital I realised when I was starting to feel more like myself.  It was the second time when someone called me "Caroline" and they were politely but firmly informed that I am "Ineke" (Caroline is my middle name).

The next thing which told me that things weren't as bad as I thought they were was when I was given the first error-filled story mixup.  My brain files information very quickly - particularly if the information relates to me in some way.  I didn't like the fact that one Dr had specifically stated one thing about some medication I was being prescribed only for another Dr to tell me a different story.  (Another thing which drove me almost literally up the nearest wall was their use of Medical abbreviations - I know I was born with a hole in my heart and I know the original hole was repaired in 1974.  I have yet to get the abbreviation for this lodged in my brain.)

Then we had the Heart Failure Nurse.  Both of these were nice and caring.

The Cardiologist I originally saw was a bit of an odd character. He was old-fashioned.  I mean that as a compliment.  No abbreviations, no "paint a bright picture where none should exist" but give it to me straight.

The next time I was admitted to Glenfield was directly from Cardiology appointment.  I was experiencing severe breathing problems.  It turned out that one of my lungs appeared to have sprung a leak in it letting fluid build up in it.  After that had been drained I was discharged only to return within 24 hours for readmission - due to a suspected asthma attack - which would probably have been avoided if they had read their own Discharge letter and fitted me up with the inhalers mentioned in it prior to letting me leave hospital.

My next admission to Glenfield Hospital showed me how well the hospitals in Leicester can work together when they choose to.  I had had a CT Scan at Leicester General Hospital the previous day (ordered by the Oncologist at Leicester Royal Infirmary).  I was admitted from my Pleural Effusion appointment at Glenfield Hospital based on that scan because my other lung had sprung a leak.

In the middle of all this I was having to deal with running around after medication (and - in one instance - having to convince my GP's surgery that the Oncologist had in fact prescribed one medication simply because it wasn't stated explicitly in black and white on the letter).  The stress caused by this isn't much good for anyone - never mind someone who has got multiple health conditions.

My most recent admission was - in some ways - the hardest for me to cope with because I ended up feeling all control of my situation had been taken away from me.  It still hurts though I have been discharged for a couple of weeks.

I was hoping that Leicester Royal Infirmary and Glenfield Hospital were going to get together and make sure I was in fact suitable for Chemo (I had been told when the escapade started I wasn't due to lack of reserves in my heart as well as capacity issues.  Apparently a dose of pneumonia and inflammation in the bottom of your lungs gets rid of any ideas you may have about coordination between Departments (never mind hospitals).  It also seems to get rid of coordination between different sections of the same Department as I found out when I went for my second chemo session.

The next "fun" bit was being informed that I was going to get a home oxygen supply.  Now, there is nothing wrong with it in itself.  The problem is - it has to be set up before the patient arrives home so it needs someone to be present when they set it up.  What happens when the patient hasn't got anyone they can call on quickly to go to their house and be trained?  More to the point, why can't they just train the patient???

I think I might actually have got a system worked out for the swapping of the Walking Tanks now.

I am aware that I am merely the patient but surely I should be allowed to feel as though I am at the centre of the decision-making process when it comes to my care???  It is not funny - feeling like a passenger in your own life as you career towards your death.

I purposely omitted to mention the fact that a disconnection between me and the oxygen supply point on the wall near my bed wasn't spotted until a few hours after the nebuliser had been disconnected during my last admission.  It was only picked up when my sats seemed alarmingly low during an early morning observations check.Luckily that was a one off occurrence.

I cannot fault the Health Care Assistants at either Glenfield Hospital or the Leicester Royal Infirmary.  Nor can I really fault the nurses at either hospital.  Some of the Doctors - however - need to remember that patients are people too with their own ideas and experience of their condition.  I feel happiest when I am allowed to discuss things and ask questions in my own time and way. 
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]]> http://inkyworld.co.uk/page11.php?post=435 What A Couple Of Months It Has Been (Or - Many Apologies And A Health Update) 7/20/2018 4:16:36 PM
I suppose I had better attempt to explain what has been going on since I last blogged on here.  I say "attempt to explain" because - to be perfectly honest - my head has yet to stop spinning enough to understand some of it myself.

In the beginning of June I had a lovely few days in Holland - a great time of rest and relaxation.

Then the wheels came off big time.

I had been put on two different types of tablet - Letrozole and another one beginning with R (the name of which I cannot remember) and thought I was going to go through the cycles of the one beginning with R without any problems.

My cadaver had other ideas.  It protested!!!  Luckily it kept its thoughts to itself until after I got back off holiday otherwise I would have been really upset.  I had really been fighting to go to Holland anyway (a small matter of a lung drain wouldn't stop me).

Anyway - as I said - when I got back from Holland my first appointment with the Oncologist wasn't quite what I had hoped it would be.  My white blood cell count was lower than the Medical Professionals were totally happy with.  So the next cycle was postponed (indefinitely as it later turned out).  I had to repeat the blood test and go back to the Oncologist the following week for another check.

When I followed these instructions I was told the white blood cell count was still low and ordered to ring the Emergency number (which I had not yet been given) if I ended up having symptoms of anything like a cold.

Well, that was on the Tuesday.  The Thursday of the same week saw me going round to my neighbour to ask them to ring an ambulance for me and being admitted into the Leicester Royal Infirmary via a "Blue Light run".  Yes - I was officially an Emergency Situation.

It turned out (after Leicester Royal Infirmary winning the argument between themselves and Glenfield Hospital) that my cancer had got worse.  On top of that - two other things had joined the fun - pneumonia and an inflammation in the bottom of my lung.  So much for their original ideas of either a blood clot or fluid in the lung.  (I knew it wasn't fluid in the lung because I felt light-headed - fluid in the lung or chest just makes me feel generally heavy.  Including my head.)

So I spent a couple of weeks in a lovely ward in the Osborne Building of Leicester Royal Infirmary.  Seriously - the ward really was lovely.  It was a six bed bay.  The staff were friendly.

Not so lovely was the news that I was going to get chemo (apparently whether I actually wanted it or not.  That was the thing which scared me the most.  Going from being told by both an Oncologist and a Cardiologist that I didn't have the reserves in my heart for chemo to being told it was now last resort time was not pleasant at all.  Especially when the Oncologist refused to consult the Cardiologist before she put me down for it.).

I had my first dose of chemo as an inpatient.  It went better than I expected.  Well, to be honest, it couldn't have got any worse than I expected - thanks to one Dr helpfully telling me I could die during chemo and, in the next breath, enquiring whether or not I wished to be resuscitated if anything did happen like that.

(One of these days I hope someone somewhere is going to teach Drs that I don't deal well with "it could be this or that" and I certainly don't deal well with being told the worst case scenario if I feel like I have been deprived of a choice first.)

I have now had three sessions of Chemo.  I haven't had any major side effects yet.  The hair is slowly coming out - and the chemo does tire me out but no sickness yet.

The most annoying thing is - I am now on home oxygen.  My sense of humour has really come into play with this subject.  As I sit in my chair typing this blog post I am attached to what I call my Snail Trail (a tube that connects me to an oxygenator - or compressor - in my hall) if I am attached to the tube all you have to do is follow it to find out where I am.  The other thing I have got is what I call my Walking Tank.  This is useful for when I am out and about.  It is smaller and lighter than a hospital oxygen cylinder (thank goodness).  It is still annoying though.  If the chemo does its job I won't be on the oxygen for a very long time.  My breathing is slowly getting better but I am taking my time with my recovery.

I will try to blog on here more frequently (as much as I can anyway).  It may give me something to do whilst I am waiting for the chemo to percolate through my system for a start.
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]]> http://inkyworld.co.uk/page11.php?post=434 When Beauty Isn't Obvious (Or - Why I Really Wish We Could Photograph People's Personalities) 5/17/2018 5:34:35 PM
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".
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]]> http://inkyworld.co.uk/page11.php?post=433 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 4:56:30 PM
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]]>
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]]> http://inkyworld.co.uk/page11.php?post=432 Why Living Is Sometimes More Useful Than Talking (Or - When Experiences Really Help You See Life Through The Eyes Of Others) 5/17/2018 4:20:23 PM
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.
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]]> http://inkyworld.co.uk/page11.php?post=431 Just Call "Dynarod" And Be Done With It (Or - A Health Update) 5/17/2018 3:40:33 PM
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.
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]]> http://inkyworld.co.uk/page11.php?post=430 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 8:12:15 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
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