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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.

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