|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.
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.
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.
This blog post was originally typed on the Simple Solutions blog but I thought it was important enough to share with you on here.
You 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.
|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.
|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.
|This post was actually inspired by one of those quizzes you find on Facebook. The quiz was called "How Much Do You Hate Yourself?" (The answer the quiz came up with was far removed from reality. It was too positive.)|
I know I can be many things to many people (depending on what mood I am in at the time). I can be the most annoyingly loud human you have ever met or you might end up wondering where to find a magic tin-opener so you can get me to open up and actually speak to you.
One thing you may be surprised to learn is that I am not the most confident person on Planet Earth. I also find it extremely difficult to accept compliments which are based on something about me as a person. My shoes or clothes are things I will accept compliments on - things like "bravery" or my writing are the dodgy ground,
Before this escapade started I always felt like I had to compete with everyone else - even when there were mitigating circumstances which meant I couldn't do what they did or get what they had in terms of friendship, treatment, etc.
I always looked for the "But" behind a "well done" - as in "Well Done - but you could have/should have..." This may sound strange but nobody judges me to a higher standard than I judge myself. I want to be exactly like everybody else - do what they can do, be judged by the same standards, etc. Not for me the "we have to make allowances because of her sight - she can't do what we can" - if "she" is determined to do something "she" will get it done in whatever way possible. Stubbornness is one Dutch trait I am very proud to admit to.
The biggest change is the fact I actually feel more comfortable as me. I can actually allow myself to play by my own rules. That might sound strange to you but I am much happier knowing that I can be who I am and not have to worry about whether or not I match up to the expectations of others (most of the time I don't match up anyway).
A byproduct of that is no longer feeling like I have to conform to everybody else's standards. I can guarantee that someone somewhere will find something odd about me. It has got to the stage where I smile on the inside whenever someone tells me I am not following the guidelines set out in their textbooks (especially when it comes to either my sight or my ability to keep wandering around without getting out of puff).
The really nice thing is that I don't feel I have to do anything I don't have the energy for. I must admit that took some getting used to. I gave up going to a couple of things because I couldn't take the stress any more. I spend more time with my own thoughts now - and I am quite content with that.
The only thing I would really like to change is being able to go back to being able to go out for one day after another after another. This has been drastically reduced (especially if my week involves a medical or hospital appointment - Hospitals are very tiring).
Well - I suppose I am still here and that is the main thing. Trust me - there were times when I seriously thought I wouldn't last this long. (Not being able to breathe without being attached to an oxygen supply concentrates the mind somewhat, so does a Cancer diagnosis with no Expiry Date - but you are told you will definitely expire from it. Then being told that your heart has been replaced by an enlarged collander. What really finished me off was being informed exactly how low my heart rate goes at night when I am asleep - If I thought about that I could become extremely scared to go to sleep.)
I will keep taking each day as it comes - that is the only thing I can do. I hope to keep taking you along with me.
|There are three shops which are dangerous for me to walk into - basically because I never manage to walk out of them empty-handed.|
The shops are as follows;-
Waterstones - This Bookworm's favourite shop. Lots of interesting books (other shops which sell books are available). They even provide chairs to sit on as you read - all they need to do is provide drinks and snacks.
Primark - Anyone who knows me will tell you how much I love this shop because of the weird and wonderful bargains you can get in it. It is perfect for me because my idea of torture is going clothes shopping. Seeing as I don't actually mind what I look like (as anyone who has seen me in real life will tell you) I can get bargains that most people wouldn't touch with a bargepole. It is my favourite place for getting very cheap shoes. As someone whose primary mode of transport is a pair of size 6 (or 7 - depending on the style of shoe) feet I don't see the point in paying a lot of money for shoes or boots. Let's face it - I can walk through a pair of shoes costing £60.00 as quickly as I can walk through a pair of boots costing £3.00. The minute Primark start selling those trainers with the lightup rim around the soles in adult size 6 I will be very happy.
However, the most dangerous shop for me to go into is Red5 - an updated version of "The Gadget Shop". This is the ultimate heaven for me. It is a haven of electronic gadgets - as well as some other strange things which don't need a power supply. I currently appear to be addicted to those "Fidget" toys - spinners and things with buttons to press, things to slide, etc. Although I did come out of there with something very useful for getting my revenge on traffic.
Don't worry - this isn't something which can get me into trouble. it is a light which is currently on my bag. The light has a motion-sensor in it so it flashes on and off as the bag moves. This is most useful at night.
I must admit that the strangest thing I ever bought was not a gadget. It was a pair of earrings I bought several years ago from a Dutch shop called "HEMA" - they could have been used as Christmas tree decorations or cookie cutters (they were large hollow star shapes).
Unfortunately, the shop I really used to like having a nose around in closed down a few years ago. A Dutch shop called "Hans Textiel" was a great place to buy clothes with an "interesting" twist to them. I remember buying a shirt which had green and white checks on it (if you remember the "Pacer" chewy sweets - it made me look a bit like the wrapper of one of them).
What is the point of going shopping if you can't have fun whilst you are at it??? Next time you go shopping try to find something unusual.
|On Sunday I found out that one of my friends from Scribbles had died. This meant that Scribbles was cancelled for obvious reasons. However, I know that John Farnsworth's favourite exercise was to pick a word and get the group to write on it for 5 minutes. (The trick is to write whatever comes into your brain without thinking about it.) I have decided to do this exercise in his memory.|
Friendship is a strange concept because you never actually know you are in one before you are in it. There are good sides and bad sides to friendship - some can turn very nasty indeed but most leave you feeling cared for and wanted. That just about sums up the feeling I get from the bunch at Scribbles (as well as my other friends). You can also share in an activity without worrying what the other people think. Friendship is another way of being kind to someone in need of something - maybe a hug or a kind word. They say Love makes the world go around - but it starts with Friendship.
The above might not actually make one bit of sense to you but I timed myself for 5 minutes and that is what I came up with. It is a fun thing to do if you have got some time on your hands - and it giveyour brain a workout.
|Sometimes it is fun being me. Just when you are getting used to medication and monthly implants another lot gets prescribed. Sometimes you even find yourself reading letters which question things you know to be facts.|
Well, the good news is that I have escaped the Chemo so far. The Oncologist took one look at my left breast (and felt under my armpit) and proclaimed herself happy with the improvements. Happy??? I am ecstatic!!!
I admit that I am still not really comfortable with all the medication I have to take – it would have been better if it had all been prescribed at once instead of in dribs and drabs. (At least then I wouldn't have to worry about running out of different tablets at different times.)
When I came out of hospital I was on three different tablets – one in the morning, one in the evening, and one twice a day. I could cope with that. I got a system sorted out pretty quickly.
Then I had my first appointment with the Oncologist who prescribed one more tablet to be taken in the evening (as well as a monthly implant to be implanted by a Medical Professional). The night-time medication pile got slightly bigger.
Then the Cardiologist decided to prescribe me more two more separate tablets to take in the morning.
Finally – last week the Oncologist decided to prescribe me yet another tablet to be taken twice a day, as well as another monthly injection (again to be administered by a Medical Professional).
I think I now have got seven boxes of tablets in my bedroom. Six of them live on my bedside table and one of them lives on the floor because it is too big to fit on the top of the different piles.
The really annoying thing is that one of my tablets actually changed colour shortly after I started taking it (luckily it still smells the same – I call it my “toothpaste” tablet because that is exactly what it smells and tastes like). If you have two white tablets and you know you have to cut one of them in half you had better make absolutely certain you know which tablet you need to cut.
My favourite tablets are the ones I was prescribed most recently – they are chewable. As in – I am supposed to chew them instead of just washing them down with water. They are tasty too – I think the flavour is called “Tutti Fruitti”. They are also the biggest.
If you know me personally you will know that I was scared stiff that the Oncologist would go down the Chemo route even though the Cardiologist didn't recommend it. I didn't want Chemo even before the Cardiologist kindly informed me about my heart apparently having been swapped with a large colander – funnily enough for the same reason as the Cardiologist stated.
The funny thing is that both the Oncologist and the Heart Failure Nurse keep asking me how far I can walk without getting out of breath. Seeing as I don't want to be back in hospital if I can possibly help it I am not exactly going to try that. Not having to lean on lampposts and sit on walls every few steps is good enough for me. Don't get me wrong – I can walk a very long way if I need to. I just don't see the point of going any further than I have to.
One thing I have noticed is I get tired more quickly sometimes – I hate having to pace myself. For example – I can only do one big trip a week now (as in a journey which involves multiple changes of transport or just being out for more than a few hours – eg, a day trip).
It is a good job I love reading – I have been doing a lot of that recently. I am now working my way through a book with a title like “1000 Quotations to inspire you before you die”. It is a very interesting book.
The thing which I am enjoying the most is being able to spend time with my friends – both online and in person. Being able to talk about what is going on in my usual quirky way is keeping me going. If something is going well I will talk about it – if something has happened which has annoyed me I will talk about that too. If I didn't feel like I could share my thoughts with people in any way I don't think I would be very happy. Yes – I am a private person but I will also happily share my thoughts with my friends when I need an “Escape Valve”.
Basically – if I don't feel like doing something it doesn't get done until such a time as I decide I want to do it.
I am going to close this post by saying a big THANK YOU for reading my ramblings and sticking with me. I write because I have to – you read because you want to. I really appreciate you supporting me by taking the time to read my ramblings.
|Today I had the great pleasure of going on a trip back in time, I went to an event which brought back some really nice memories for me. The event was a gathering of former members of a group which I really think should be resurrected - “Citizens' Eye” was a Community Media group in Leicester.|
It also happened to be the first place (apart from “Scribbles”) where I have felt accepted, included, and comfortable enough to take part without being judged and made to feel like an outsider.
I can still remember the warm fuzzy feeling I got when another member of the group (who was at today's gathering) told me they had read my blog and enjoyed it. The best thing was – I don't even remember saying anything to them about my blog in the first place (mainly because I don't remember speaking to the person at all before they mentioned having read my blog).
Being an oddball can be fun – but it can be very challenging at times. Especially when you walk into a group of humans who all seem to be “highbrow” and/or Brainiacs, You may find yourself having to try to “tone yourself down” a bit so you can fit in.
I had no such problems at “Citizens' Eye”. I could be myself and teach whilst learning if I wanted to. In fact, that is part of the reason you are reading some blog posts which may seem a bit unusual sometimes. I have learned not to be so frightened of what people think (admittedly – if you follow me on Facebook you will have noticed that the “fit for public consumption” filter well and truly got lost since the start of my current escapade). I have a story to tell and I am going to tell it in my own way using my own words.
Come to think of it – I think that might be the whole idea behind “Citizen's Journalism”. I am not a qualified Journalist, nor a paid one, but I do try to educate people about some of the challenges I face as well as telling you a bit about other things which interest me.
Yes, I am happiest talking to you from behind a keyboard (I can think better then – and actually type things which, hopefully, make sense).
A few weeks ago I took the guy I am working on my photography project with to my Dad's house so he could take some photographs of the walk from the corner of my Dad's road in the dark (and when I say “in the dark” I mean exactly that). Whilst we were there I took some photographs of what I could see from Dad's house looking back to the main road – I was going to put them on this blog post but they didn't come out as I thought they would (they actually looked better on the small screen of my camera).
Sometimes people's stories lose something when they are “tidied up” by professional journalists. I am absolutely convinced that the best people to write about events which happen are the exact people who they are affected by. It is not about having the right “voice” - it is about having the experience to back up what you are saying.
It is all very well reporting on something in an “if X happens then Y will be the result and we will have to do Z” kind of a way – but what happens if the scenario doesn't play out as expected??? Or even – what happens if you don't realise that “Y” could unexpectedly turn into “Q” for apparently no known reason??? Do you then involve the people who have experience of the situation to help you tell your story better??? I don't mean the people who have been parachuted into the situation to try to sort it out – I mean the people who were there when the situation started and who might be the most useful when it comes to giving you possible outcomes???
Yes – there is a place for “Professional” Journalists but there are some stories which can only be told by the people who are going through the situation (or have been through it) themselves – because the story needs a personal touch which “Professional” Journalists cannot give because they are too worried about “appearances” and neutrality or bias/angle.
Not everybody can tell their own story – nor does everybody want to. However, surely we should be giving those who want to tell their own story the opportunity to do exactly that without sanitising it beyond recognition?
We need to let go of the idea that there is a “good” way and a “bad” way to tell a story – with the “good” way involving people who are paid to report dispassionately on events.
That is what I love about being able to call myself a “Citizen Journalist” - I can tell my story and it is up to you whether or not you choose to listen.
|A couple of weeks ago I had the great pleasure of listening to (and taking part in) a couple of discussions on my favourite subject.|
Before you say “Oh no – now she is going to go on one of her rants about sight, disability, inequality, etc,” and go and find something more exciting to read – stick with me and you may be surprised.
My favourite subject is words and how they can be used, I have GCSE's Grade C and above in (in the order I learned them) English, Dutch, French, and German. The two languages I use the most – even today – are English and Dutch. Give me a book in German and I can just about read it. However, my French is now useless.
The English language is a source of immense fascination for me – I have been known to read books on words, etymology (word origins), and grammar for fun.
Being brought up listening to two languages (sometimes in the same sentence) has given me a slightly odd habit of sometimes taking things literally at first. (A tip – never tell me you are “separated” without telling me that you are separated from your wife, husband, etc. My imagination will submit a response like “you appear to be in one piece to me”.)
On the flip side to that – there are certain words which I have to be very careful about the context of when I hear them. This is because there are certain words which appear in both English and Dutch but have totally different meanings (the spellings can be slightly different but the pronunciation is the same). The major “Trap” for me is that exact word. The English use it when they are talking about an object to catch creatures – the Dutch walk up and down it very frequently (“Trap” is Dutch for “Stairs”).
There is one thing about the English language which I find really frustrating though – and it is not the “I before E except after C” rule either. An excellent example is found in the Oxford English Dictionary. Don't believe me??? Look up the word “Snoop” and read the bit which tells you where the word comes from. It will say “From Dutch – Snoep”. Both pronounced exactly the same but one is nothing like the other when it comes to meaning. An English person accuses me of being a “snoop” and they are accusing me of going through someone's private papers without them knowing. A Dutch person would find it extremely difficult to accuse me of being a “Snoep” unless they had dipped me in chocolate or caramel first (and if you think I am staying long enough for anyone to do that to me you have another think coming) - “Snoep” is candy or sweet in Dutch.
The best bit about language is being able to use it in different ways – ranging from things like “that is the kind of grammar up with which I will not put”, used by Winston Churchill to make a point about people who say you shouldn't end a sentence with a preposition, to my favourite quotation. “Hostilities shall commence on the coastal perimeter” doesn't have quite the same effect as its more famous version of “we shall fight them on the beaches”, does it? The first version was used by Winston Churchill when he was trying to explain why he didn't like something the Americans had written in the Second World War.
The cleverest way of using language is to turn it into sentences which can be read two ways. I don't mean the risque double-entendres – I mean a sentence which is either like the “Four Candles” sketch by the Two Ronnies, or like the tweet I saw earlier about a sheep being seen on the hard shoulder of a motorway - “If EWE (you) see anything please tell us”.
Thanks to a conversation between my Mum and Dad I now have visions of a lot of vehicle exhaust parts in my brain whenever I hear anybody speak (or sing) about “Manifold witness”, At least I now know the difference between “Many-fold” and “Manifold”.
I am going to end this post with a Dutch phrase which is used on leaving someone. “Tot Straks” literally means “until later”. It also happens to be my favourite “Goodbye” phrase.
|This blog post has been bubbling away in the back of my brain for a few months now. It is also a blog post which I am actually the least qualified person to write as I have no direct experience of the topic – as yet.|
A few months ago we were talking at Scribbles when Mike Southwell told us a horrifying story about a man who he knew and their Bank Account.
I cannot remember the exact details of the whole story but I will tell you what I do remember.
The man was what would be considered a Vulnerable Adult. He also had a Bank Account. For some reason (which escapes me at the moment) if the man wanted to get some money out of an ATM he asked passing strangers to type his PIN in. Eventually, it was noticed that quite substantial amounts of money had gone missing from his Bank Account (the man only withdrew small amounts). This is where the problem started.
As Mike pointed out – Banks don't disclose details of Bank Accounts to anybody except the person named as the Account Holder. That is fair enough you might say – and I would agree with you in most cases.
But what happens when you have someone with Bipolar who is in their Manic cycle, or, like Mike's friend above, they are seen as having Mental capacity but need physical help with certain things??? Or if they can be classed as a Vulnerable Adult for any other reason???
At the moment there only appear to be two solutions to the problem (both of which remove the independence of the vulnerable person to a greater or lesser extent). You can either go for “Power of Attorney” or you can open a joint Bank Account.
However, they are both things you have to do. The Bank wouldn't get involved in any other way (except when they start charging for unauthorised overdrafts).
I was discussing this with another friend of mine whose son is classed as a Vulnerable Adult, and she confirmed that she will not be informed about anything connected with her son's Bank Account. I asked another friend – who has experience of dealing with Vulnerable people both as a Police Officer and in one of his other roles – who confirmed what I stated above about the Power of Attorney and the Joint Bank Account are true.
There needs to be a system in place where the Account Holder (or a relative) can nominate someone for the Bank to contact in the event of suspicious or unusual transactions. A bit like arranging for the Bank to contact you if you make a large purchase if you have previously been a victim of Identity Theft. Instead of the onus always being on the friends and relatives of the Account holder to know that they need Power of Attorney or a Joint Bank Account – which many do not realise until it is too late.
How can a Vulnerable Adult (who wishes to keep as much of their independence as possible) be assisted to achieve this???
Also, what happens when the Account Holder becomes so incapacitated they end up in hospital, or deceased, before anybody realises what has been going on???
The entire Banking System needs a total overhaul to put the Account Holders (and their nominated representatives) in charge – or at least stop the nominated representatives from having to jump through legal loopholes in order to find out what is going on.
|I wouldn't usually put a “Trigger Warning” on my Blogposts but this one definitely needs one. It contains thoughts of a Disturbing Nature as well as touching on the subject of Suicide.|
There are two things about me which can become apparent very quickly in certain situations – I will fight for my friends and I am stubborn. When I say the second one I definitely mean it – let's just say that I wouldn't waste my breath trying to talk me out of something if I really want to do it, if I were you.
My stubbornness can be a very bad thing (especially if you are at the opposite side of it) but it did indirectly save someone's life.
I have got a friend who has an Alphabet Soup of Mental Health issues (and when I say “Alphabet Soup” I mean I have lost track of the acronyms for them). I am not going to name my friend, or give any identifying details about them, because they are not really relevant to the blog post – what I will say is that they gave their permission for me to write this blog post,
When it comes to Mental Health I fall into the “Uneducated Idiot” category. As in – I have suffered from Depression myself, I have friends who have Mental Health issues, and one of my friends is a Clinical Psychologist, but that is the extent of my knowledge of the subject. Basically – I am the last person you would put in charge of a situation where someone is suicidal because I am not qualified to deal with it – at least, given a choice between me and a group of Mental Health Professionals, I hope people would go with the Mental Health Professionals. And I would hope the Mental Health (and medical) Professionals would actually do their job.
Unfortunately, personal experience of finding myself on “Suicide Watch” via Twitter, on someone living in Cornwall (not very useful seeing as I live in Leicester), in the early hours of last Friday morning, tells me a totally different story.
The really heartbreaking thing is that the situation could have been stopped from getting so bad on Thursday afternoon (the fact that the situation could have been prevented from getting anywhere near that stage years ago is beside the point). All my friend's former GP had to do was to prescribe something called “PRN” when my friend asked them to. Instead the GP said they couldn't do it without speaking to my friend's Psychiatrist.
A side note is that my friend had asked his Mental Health Co-ordinator (aka Social Worker) to ask his GP not to prescribe a month's worth of tablets because my friend knew they were at risk of overdosing – the message was not passed on – with foreseeable consequences.
The funny thing is – before Thursday night/Friday morning my friend had kept trying to get rid of me because (according to them) “everybody else leaves me”. (Hmm, not exactly the best thing to say to me when you are in a vulnerable state – you get more attention not less.)
I feel really uncomfortable in situations where I don't know what on Earth I am supposed to be doing – and trying to keep someone alive long distance is definitely a situation where I hadn't got a clue. (Luckily a mixture of fear, determination, and adrenaline, kicked in – I wasn't going to let my friend die on my watch.) So I kept my friend talking and distracting them.
It was only when I went to bed on Friday night that I started to think that I could actually have made the situation a whole lot worse if I had said the wrong thing.
One good thing has come out of the situation though (apart from my friend not dying on me) – at least now my friend realises that I won't walk away when the going gets tough (I get more chatty instead).
It is a damning indictment of the Mental Health Services where my friend lives when someone like me is, in effect, left to do their job from so far away.
I could talk about the lack of resources as far as Mental Health Services are concerned – and many people would agree with me. However – from where I am sitting as I type this – that is not the only problem. The other problem is that Mental Health should be seen as a vocation instead of a career. There are too many Professionals in the Mental Health “Industry” who really are not suited to the work because they are not “people-oriented”. We are dealing with the lives of very vulnerable people here. Before you ask – no I wouldn't want to do the job of a Mental Health professional because I am honestly not cut out for it.
We need a properly resourced Mental Health Service – both in terms of financial resources and human resources.
You may think that me typing this blog post is inappropriate and I should leave it to people with personal experience of Mental Health Services (as in Service Users or Professionals) but I would say you are totally wrong. I have another friend who has Bipolar and I have seen her wearing a t-shirt with a very appropriate slogan on it “We all have Mental Health”. I understood this to mean that we all also have a responsibility to speak up for those who are unable to speak up for themselves.
|I don't know if you remember the old TV gameshow “Blankety Blank”? It was the one where contestants had to give answers which matched the “Celebrity” Panellists in order to score points and win a “Blankety Blank checquebook and (useless) pen”.|
What reminded me of that gameshow was a couple of things which happened recently – and they both had the same result. The result was a very pleasantly surprised and seriously confused Ineke (not to mention a slightly embarrassed Ineke as well).
I have never thought of myself as “conventionally clever” - second thoughts – I have never thought of myself as “conventional” full stop. Or “clever” for that matter.
In fact, if you and I were to write separate lists under the heading of “Ineke Is...” and compare them I very much doubt that the lists would match up.
Well – OK – there are certain things which we would agree on (only because they are blazingly obvious);
I am Human (although I sometimes seriously wonder about that).
I am of the Female Species (although I have been called “Sir” a few times).
This next bit is purely my opinion about myself (feel free to disagree with everything you read from now on in this blog post).
I am (at least) Half-Dutch. Not only due to the fact that I have one Dutch parent and one English parent – I also have a Dutch first name. I identify more easily as Dutch than English.
I am seriously shortsighted (to the point of being Registered Partially Sighted).
I am unconventional.
I am smart but no way would I call myself “clever” (especially when you read my list of qualifications). My “cleverness” cannot be measured in conventional ways.
I am good at hiding in plain sight. Well, I get that general idea from speaking to some of you who have read Inkyworld and been amazed by the challenges I face due to my sight. It is quite funny when people tell me that they didn't realise my sight is so bad (the clues have always been there – you just have to watch me carefully).
I am someone who loves learning – I just have a major allergy to classrooms and teachers.
I am good at “Sideways thinking” - to the point where my brain starts to hurt if it is forced to attempt to think in the same ways as most other people for very long.
I am a Bookworm. There is only one thing I love more than reading – and that is writing.
I am creative with a very vivid imagination.
I am a lover of words, language, dialects, and accents.
I am happiest either on my own or in a one-to-one situation (or in a very small group with people I know and trust).
I am a thinker who is comfortable spending time with their own thoughts.
I am prone to bouts of thinking my only use is as a Lab rat for other people to experiment on.
Remember I said I am smart but I wouldn't call myself clever??? There is a very good reason for that. If you measure my knowledge in “paper” qualifications you would come to the conclusion that I am not very educated (four GCSE's at C Grade or above and a handful of certificates). If you look at me you might not think I am the cleverest creature on the planet (unless you are one of those brilliant humans who sees glasses as a sign of intelligence). However, if you measure my knowledge in whether or not I can hold my own in a conversation with a Brainiac you may be surprised. The best way to measure my knowledge is to watch me in my day to day life (or read my blog) as I cope with challenges that you don't need to pay attention to – as well as doing things which have a rather fascinating habit of amazing people because they don't expect me to be able to do them.
Yesterday someone paid me a very unexpected compliment when they said that my blog is interesting and that they had learned things through reading it. Julian Harrison (yes – you are correct – he has been mentioned on this blog before) is one of my favourite Educators because he serves his education in easy, non-threatening, bite-sized chunks. These chunks are called “conversations” - and they give my brain a really good workout. He could make both of his areas of expertise seem really threatening (they are Mental Health – which he has got both professional and personal experience of - and the Holocaust – which he hasn't got direct personal experience of but he is an encyclopedia on that subject) but he is open and honest enough to make me feel very comfortable being educated by him.
When I thanked Julian for his compliment he said “the day we stop learning from other people is the day we cease to be human”.
I am never going to feel very comfortable blowing my own trumpet. I always think I could be better at things. However, there is one thing I will admit to being good at – being me.
I was going to finish by quoting some lyrics from either “The One And Only” by Chesney Hawkes, or “Last Man Standing” by Bon Jovi. However, I have decided to quote you some lyrics from the song which inspired the name of the “Being Me” section of this blog -
“Cause I'm being me. Before the night is over you'll be here. But you won't see - no you won't see - what you've got here. You've got me”. (From “Being Me” by Plaeto)
Quite what you make of me is entirely up to you.
|I have been told off by two friends of mine on Facebook. Well, I suppose they did kind of have a point. You see – I had put their names (among others) on a list of humans who inspired me and made the world a better place. Before you say anything – they were not complaining that their names had been put on the list – they were complaining that mine hadn't.|
When I pointed out that my name didn't belong on that list (after all – I cannot be inspired by myself) they still didn't like it very much.
This got me thinking – how do we decide who and what inspires us???
Obviously, we can be inspired by a “celebrity”, or a historical “World figure”, or a certain book or song. We can also be inspired by our friends and family, or even our religious beliefs (if we have any).
Most of the people who have inspired me are known to me personally (some of them have even been mentioned in this blog before now).
Just out of interest – I found something on Facebook which said “you can only have 5 things – what are they?” - I didn't have to think very hard about the first item because I can still remember the first time I saw it (and was allowed to touch it).
If they were asked to name something they find inspirational - most people would (if they actually like reading) would probably name a book by one of the great Classic authors, or a biography of some historical figure??? Some people would even name the Holy manuscripts from their religion???
Not me! My most inspirational book is a slightly obscure one which is out of print now. You may be surprised to learn it is written in the English language. It is a children's Science Fiction book. You could say that it is partially responsible for the existence of “Inkyworld” - if I had not either met the author or been able to get my paws on the book when I did, the chances are you would not be reading this now.
I can still remember when I first saw a copy of “Spellbinder” by Stephen Bowkett. It wasn't so much the book itself which was the inspirational thing – it was the fact that (to me at least) it showed you could actually get paid to daydream on paper. What made it even better was I knew the author. (The fact that the author was just about the only member of his “real” profession who I didn't fantasise about skewering with a window opening pole and barbecuing over the Bunsen Burners in the Science classrooms at that school was an added bonus. Did I ever tell you I have a vivid – and sometimes seriously twisted – imagination???)
There is something which I always find intriguing. People can find other people inspiring for the strangest of reasons. These can range from rescuing people from certain death in situations like War, and natural disasters, to being able to sing brilliantly, to not giving up in difficult circumstances, to – what I see as – just living their life in the only way they know how to.
I said at the beginning of this post that I don't find myself inspirational. In fact, if you were to ask me for a list of “Inspirational People” - and forced me to put my name on it – you would be reading a very long list of names before you saw mine, right at the bottom, where it belongs.
You know something? It feels very strange to be told that I am an “Inspirational Person” myself. I haven't done anything remotely remarkable – unless you count existing??? I can think of people who are braver than I would ever be, who are better at writing than I will ever by (and one of them has been mentioned in this blog post), who are a lot cleverer than me (and not just because I can list Brainiacs with PhDs in various subjects amongst my friends), who are better at being friends than I will ever be. Basically, I am just me – muddling my way through life as best I can.
If you asked me to list my “Unique Selling Points” my list might surprise you.
My favourite “skill” is my ability to think sideways. To me – the only time when “one plus one makes two” is when you are doing maths. Let's just say that I am the one most likely to come up with an idea that people will think is too crazy for words but which might actually give the results they are looking for.
I have been told that I make a good “Sounding Board”. One thing I do know is that I refuse to judge other people until I have experienced them for myself. Don't expect to be judged on what you say to me – you will be judged on how you treat me.
On the flip side of that I love finding out how people and things work. The way to find out if I am interested in you for any reason is to wait for questions. The more questions I ask you the more interested I am (the same goes for the more “sideways” questions I ask you).
I can be a fountain of seemingly useless information (my favourite fact that I learned recently is about Iran getting its modern name as a result of the Nazis deciding that it was the base of the “Aryan” race – the original name of Iran was along the same lines as “Aryania”).
I will always stand up for people who are marginalised. After all, I know what it feels like to be bullied, to be Disabled, and to feel totally alone and misunderstood.
However, my favourite “Unique Selling Point” is that I am nothing special – I know how hard I have had to work to get where I am now and I know I have got a lot further to go before I can join the “Hallelujah Ineke” Club.
The irony is that my school reports almost all said that I “could do better” and I “must try harder”. The truth is – I have always felt like I had to work at least a hundred times harder than everybody else just to be the same as them. This means that I feel very uncomfortable when people start praising me for doing what (now) comes naturally to me. To be perfectly honest – when people start telling me that they think I am inspirational to them I start getting seriously worried because – in my experience – praise usually comes closely followed by a “but if you....”.
Yes – I am tough. Yes – people tell me I am good at writing (mostly humans who are way better at writing than me). Yes – I will do anything for my friends. Yes – I continue to show courage through adversity.
Does any of the above make me “Inspirational”??? Not in my eyes – it makes me human.
If you want to think I am “Inspirational” feel free to do so – just don't tell me. On second thoughts – if you insist on telling me try showing me instead.
|As someone who was put through the Mainstream Education system as a “Special Educational Needs” student from the late 1970’s to 1990, I wanted to find out what life is like for the people who have to teach people like me (the teachers).|
After I had left school one of my former teachers told me the staff used to have meetings about what to do about me (it might have helped if they had invited the one person who could have helped them – ie, me). This was a long time ago and I don’t have any memories of such meetings (though of course they may have happened). Nor do I recall being given any special instructions or equipment, if such existed, for helping you, given that you were in a mainstream class. Absolutely you should have been invited to such meetings, and / or there could have been discussion groups where pupils and staff could openly air their concerns.
This inspired me to write the poem below;
I don't understand.
I know I'm not very good,
But I didn't think I was this bad.
My head's so stretched,
I just can't cope.
Feels like someone's.
Put my brain on overload.
I don't know why,
Everyone's going on at me.
Where's the door,
To 'Escape Capsule 3'?
You think I'm living,
In a daydream more often than not.
Dear Sir, to stop me doing that,
Would turn my life support machine OFF!
You say I could do better?
Well, I couldn't feel much worse.
It wouldn't surprise me,
If I left school in a hearse.
Don't get me wrong,
I know you're not to blame.
I want to ask for your help,
But the other kids would still call me names.
Now do you understand?
I never was very good.
But I wasn't really that bad!
I asked my favourite teacher from my days in Secondary school if he would be prepared to collaborate on this blog post and discuss “Teaching and Sight Problems” with me. Luckily he agreed.
Steve Bowkett was an English teacher when I first met him in 1985. He has also written several books – and a poem!
Hi Steve – thanks for agreeing to do this.
My overriding emotion when I look back on my time at Secondary school is one of overwhelming loneliness. I felt like I was the only person in the school who had difficulties. From what I can remember – nearly all my teachers appeared to be “normal-sighted”. I would have loved to have one teacher who had some kind of disability so I could see how they coped. It would also have made me feel less outnumbered.
My first question is – do you think it would help if teachers had practical experience of sight problems (and other disabilities) either as a result of being disabled themselves or attending courses where they were given a chance to experience exactly what it is like? I think there are issues around recruiting disabled teachers specifically because of their ‘practical’ experience of disability. They may or may not be good teachers and their disability might not give them insights into some pupils’ problems. Also, if for example a sight-impaired teacher were employed hopefully to put his / her experience into practice, would teachers with other disabilities need to be employed to bring their own insights into school policy? I would also have concerns that teachers with disability may have difficulties with some pupils who don’t understand what they’re going through (which is a nice way of saying, some kids would play up!)
I take the point about loneliness and frustration etc, and would certainly advocate disabled people being involved in talking with teachers on courses, through INSET sessions, YouTube interviews etc.
My second question kind of leads on from that. I don’t know what it is like in schools nowadays but – speaking personally – would you (as a teacher) be prepared to sit down with a student and listen to them when they told you about the difficulties they had in accessing your methods of teaching? (In fact, most of the time, you were the one teacher I found easiest to cope with. There were two other teachers whose lessons I came to dread because, not only did their teaching methods make my brain hurt but their general demeanor indicated they would not have welcomed me asking for the kind of help I needed.) Personally I would always be prepared to sit down with a student to discuss issues around their disability. Some schools nowadays probably build such dialogue into their ethos and policies. Practically, I think teachers are more pressured now than ever because schools are still sausage-making machines and, alas, seem to be run on a corporate/business model where results are all. This means that time is at a premium for most staff – though of course accommodating people with special needs would improve their educational experience and lead to better results.
You’ll appreciate that I go into schools nowadays under specific circumstances, as an author, so only get a snapshot of what any school is like. As always, there are good and not so good schools. Quite often I’m told beforehand that a child in a class is autistic, hearing-impaired, etc, and my impression is that many schools are much more aware of pupils with special needs these days than 30-40 years ago (can it be so long?). There is also more advanced technology available now that potentially can help – I’m thinking of sight-impaired pupils having access to visualisers, laptops, etc, and other devices that you probably know much more about than I do.
Being a “Special Educational Needs” student has a habit of inviting a different type of bullying than other students might be subjected to (even to the point where the student can feel like the teachers are joining in). This very quickly led me to the point of not even trusting most of the teachers. I can remember being shouted at by one teacher as a result of something which had happened – when I told them why I had done it (I told them straight out that I wanted to move to the secondary school in the village I lived in) I was left feeling patronised by their reaction.
If only I had had a teacher who I could have used as a go-between before things got to that stage. There was a (in my opinion top-heavy) pastoral regime at the school where I taught you, so potentially a support structure was in place. This does not mean that any given pupil would ‘get on with’ and feel supported by particular teachers. Another problem in my experience was that once ‘Baker days’ and the 1265 hours diktat were imposed on schools, meetings were called for the sake of being seen to be filling the time. I remember spending several hours as part of a ‘working group’ discussing some topic or other – I don’t remember if it was around the issue of disabilities – and our recommendations, which would require time and money, were ignored. On challenging this we were told by the deputy head that ‘the need had been identified’: beyond that, nothing ever happened. I suspect similar scenarios occur in some schools today. I would have loved to be able to sit with one of you teachers and tell you how I felt and how best to make my life easier. In some cases it would have been a case of making some minor changes to teaching methods, or the layout of a classroom, in other cases it would have involved asking someone to wear a jumper or a (different) coloured shirt. (White shirts and bright lights are a torturous combination when your eyes are sensitive to bright lights.) I would never have objected to you asking me to wear certain coloured shirts, etc, if it helped you to get on in class, though I appreciate that there were some teachers you would never have approached about this!
Would you agree that it would be a good idea for a teacher who a student obviously likes (or trusts) to be a go-between when it comes to telling other teachers about any problems the student has? (And does such a thing actually exist nowadays?) Even back then (when the world and I were young), form tutors, year heads, etc, were supposed to do that as part of their role. Of course, any given pupil might not like or trust their form tutor or year head, in which case the system falls down. Ideally it would be a good idea if a teacher that a pupil gets on with felt able to and comfortable with passing on that pupil’s concerns to colleagues. Practically speaking it depends upon how well staff get on with each other and whether that teacher would himself/herself feel comfortable talking to other colleagues about such matters. As I’ve suggested in my responses above, such a system probably exists in some schools but not others.
In your own case, in light of the occasions when teachers didn’t understand you or shouted at you, it would have been difficult for me to confront them directly if personally I didn’t like, trust or respect them – and frankly that included several members of staff! I would of course have highlighted issues to head of year or form tutor on an ‘official’ basis, but my own gut feeling is that support structures work best in schools where the people ‘gel’, where colleagues get on with each other and where such matters can be discussed informally as well as in a more formal way.
Do you have any other comments to add to this?
Really, to sum up, then and now there are good schools and poor schools in terms of addressing the particular needs of some pupils. I think schools generally are more aware of such pupils, partly because more research has been done in various areas of behaviour (ADHD, autism etc), and better technology exists now to support a range of special needs.
Frankly Ineke, I think our school was not brilliant in helping pupils like yourself. There were some intolerant / ignorant teachers there at the time, a few of whom you were unfortunate to encounter. I am pleased that you feel I was not one of those and that you could then and can now count on me to lend a sympathetic and hopefully understanding ear.
May your blog go viral!
By the way - in case you are wondering - the reference to "Escape Capsule 3" in the poem was about the classroom where Steve taught me English in my first year at Secondary School (E3).
|I am now going to let you into a secret about myself. In the event of you requiring to keep me quiet for any reason you will have to do one or more of the following;|
Give me something to read – I couldn't care less what it is (although I refuse to read “Horror” books – my imagination is screwed up enough thanks very much).
Supply me with food. If you can make any of my favourite foodstuffs you will have a friend for life.
Educate me – I love learning about things. Especially things which I have never known about before.
Have an unusual or interesting accent. This may not actually work as I may end up asking you questions so you have to speak more.
(Please note: The above do not have to be in any particular order.)
Yesterday afternoon found me in a place where I was subjected to all four. Funnily enough – it was one of my favourite foodstuffs (or – more precisely – the Brainiacs behind the shop which sells it) which made me decide to go there in the first place.
The “Foodie Festival” was held in a cafe which I had never been to before. Hidden down a side street near the Highcross Shopping centre in Leicester, “James” Cafe (or restaurant) was the venue for this extravaganza.
When it comes to puddings, sweets, desserts, toetjes, nagerechts, (or whatever you want to call them) my tastes run to the slightly more “exotic”. As in – it is impossible to get two of my favourite desserts anywhere in England, and another one is only available whenever there is a “Continental Market” in Leicester city centre. The desserts being “Chipolata Pudding” (a cross between Tutti-Frutti ice cream and a Blancmange – not a sausage in sight), “Dubbel Vla” (think “Devon Custard” and chocolate mousse in the same carton – pour it into a bowl so the substances are separate but mixed, hand me a spoon, and leave me in peace), and “Poffertjes” (Small Dutch Pancake type cakes – a bit like Profriteroles but without the cream inside – best served with sugar and stem ginger).
If you want to feed me on something “exotic” which you can get in Leicester – stand by to be dragged or taken to “Gelato Village” in St Martin's Square. Every time I walk into that shop they have a new flavour to add to my list of favourites.
As the name might suggest - “Gelato Village” sells Gelato (it also sells “Sorbetto”) which could be described as the Italian version of ice cream. I think it is better than ice cream – it has certainly got more “real” flavour than regular ice cream. This is because the Gelato is made from cream and whatever is in season at that particular moment – no additives, no colouring, no anything else nasty. Oh – and certainly no air - you ask for a cone or tub of Gelato and that is exactly what you get, a full tub or cone of delicious product.
The main ingredient you need to make authentic Italian Gelato (according to me at least) is an an authentic Italian recipe book. “Gelato Village” was started (and is run) by two of these, Daniele Taverna and Antonio De Vecchi are Italian – complete with the accent. They are both also very friendly. In fact, Daniele almost reminds me of Rene from “Allo, 'Allo” because of his cheerfulness.
They were both at the “Foodie Festival”.
The other companies at the Festival were a Cocktail bar, a wine maker based in Leicestershire, a beer making outfit, a company selling gin, someone showing how to make bread the proper way, a company selling pies, and someone with an interest in bees. (It was a pity that the Continental Market was on in the city centre as I think the Festival should have been somewhere more prominent – due to it celebrating Leicestershire companies and products.
Apart from the free samples on offer my favourite things were the talks and the reading material. I got educated about gin, wine, the history of pubs, the baking of bread – not forgetting Gelato.
I really hope there is another “Foodie Festival” in Leicester. I am all for being able to get “exotic” foodstuffs in Leicester but I am also passionate about home-grown companies and products getting a fair go at being showcased as well. I don't just mean food and drink – I mean companies producing all kinds of things.
|Sometimes I do things which even surprise me. Personally I hold one of the people who I work with responsible for the latest episode of “Inky's Adventures”. Well if they hadn't advertised the fact they were within a 50 mile radius of me (and I knew they were accessible by bus), I wouldn't have gone to find them.|
You may remember I do some blogging for a company called “Simple Solutions”??? This company is based down in Fleet (in Hampshire). Living in Leicester and being unable to drive makes getting to anywhere on the other side of London in a reasonable time-frame an expensive venture. This meant that – although I had spoken to both the people I work with on the telephone (as well as keeping in contact via Social Media and email) – I had never actually met either Roger or Lucy.
My latest adventure was to change that.
Roger and Lucy went to the “Emergency Services Show” at the NEC. Now – there was something I found puzzling about this. I had known that Roger had been in the Police (Inspector Nield – as he was then – was the reason I started working with Simple Solutions in the first place, after contacting him on Twitter), I also had had an idea that Lucy (his wife) had also been in the Police. However, I have never seen a Police Officer in a red uniform before (on the first photo of himself that he posted on either Twitter or Facebook from his time at the NEC – Roger was wearing a distinctly red t-shirt).
So – off I went to the NEC.
Between you and me I was actually expecting not to be allowed anywhere near the exhibition – due to one minor difference between myself and Roger. I have never worked for any Emergency Service. Until I had found Lucy I was actually convinced that I was going to get kicked out – more precisely – I was on the verge of abandoning my mission myself as I felt out of place.
Anyway – I eventually found Lucy standing at a stall (I really love surprising people by being where they least expect to find me – when I said “Hi Lucy” the smile on her face made my adventure worthwhile). She was wearing the same sort of t-shirt as Roger had been wearing on the photo – turned out that they were there as part of “Surrey Search And Rescue”. Hence the t-shirts.
However, there was also another very good point to their presence at the NEC. Roger is a Trustee of a charity which was set up by someone else with a connection to Simple Solutions. NESM (National Emergency Services Memorial) has been set up to raise money for a memorial to all the members of the Emergency Services in the UK who have been killed.
To find out more about the charity (and buy one of their badges) please visit - www.nesm.org.uk
You may know that I have family connections with both Leicestershire Police and the Rotterdam Police. I also have friends (including Roger and Lucy) who have been serving Police Officers in England. I even have one friend who still is (at time of typing this blog post) a serving Police Officer in Rotterdam – and I have lost count of the amount of serving and ex-Police Officers I follow on Twitter.
You don't need me to tell you that the Police (and the other Emergency Services) put their lives on the line every time they go to work. (If I hear about an incident involving a Police Officer in an area where I know one of my friends works I get worried – even if I have never met the Officer concerned.)
There needs to be some public form of recognition of the sacrifice made by the Officers who have lost their lives – apart from people lining the streets at the funerals.
Yes – I know my link with “NESM” can best be described as tenuous. However, one thing which cannot be described as half-hearted is my support for this idea.
I was just thinking – we have things like “Help For Heroes”, “Vulnerable Veterans”, etc, to help ex-Military people but is there anything to help ex-Police Officers who end up having to leave due to physical or mental health issues they sustained whilst on duty??? I know there is a charity to help their dependants – but what about the Officers themselves???
It is all very well setting up statues and Memorials for Officers who have lost their lives but I think we should also look after the ones who are forced out of the “Job” due to ill health as well.
One other thing before I finish this blog post. Not every Police Officer who dies is killed whilst on duty – some of them kill themselves as a result of the pressures and stress they face as part of their job. A Wise Owl of a serving Police Officer said - either on Twitter or on their personal blog – that they had had to deal with some horrific situations but were practically left to deal with the emotional and mental aftermath they faced on their own. Surely this cannot be allowed to happen???
One of the myths surrounding the Police is that “The Police Are The Public”. Sorry – in my eyes the Police are Superheroes – and should be treated as such.
|I don't know about you but – when I find out that one of my friends is affected by something – I am more likely to go out of my way to (1) learn about it and (2) attend events which either raise money for it or educate people about it.|
This might explain why I attended a “Charity Curry Evening” which was held to raise money for “Bipolar UK” and one other charity which I cannot remember the name of at this precise minute.
I had previously gone through my usual “Travelling in the Evening” checklist (luckily I knew that I would be going there in the light, and it was near a bus stop – if that wasn't the case I wouldn't have gone).
The Curry Evening itself was a great event. The food was delicious and the restaurant it was held in was perfect for someone like me (no cluttered furniture, lighting was adequate).
My attention was grabbed by a leaflet on the table which totally confused me. I don't know whether or not this was because I had come up with something completely different when it comes to asking one of my friends how they are feeling. It could also have been because I hate traffic lights.
This leaflet had a kind of scale on it – with red at both ends, then yellow, and green in the middle. The green bit was supposed to be the “steady” bit – whilst the two red bits were supposed to be the “Danger zone” bits. My problem with that was the fact both “Danger zone” bits have got very different outcomes. The “Mania” bit can be life-threatening without the person intending to delete him or herself from the planet – whilst the “Depression” bit can result in the person intentionally attempting to delete him or herself from the planet. So – unless you can see the scale in front of you – when someone has been trained to name a colour and they say “red” you need to find out which “sort” of red.
I know a few people with Bipolar and one of them has allowed me to experiment on him. Before you get worried – the experiment wasn't likely to harm him. In fact, he told me that it made it easier for him to tell me how he was feeling.
When he had told me a bit about how Bipolar affects him I came up with a rather basic scale so I could find out how he is. (The scale has even been added to recently.)
If you know me you will know I don't like complicated things (especially when I need the information to help with something) – you may also have realised that I have a rather “left-field” way of looking at situations.
So – I wanted to know how my friend was. And I wanted the information in a way I could understand. Forget using the proper terminology – miles too confusing. Instead break it down to the basics. Descriptions work best for me.
The scale which my friend and I now use is as follows;
“Scrape Off The Ceiling” - Hypomania or Mania.
“My friend's name” - Balanced.
“Sad” - Depressed
“Mixed” - Bouncing between “Scrape Off The Ceiling” and “Sad”
“Fell off the Bottom of the Scale” - Suicidal.
(That last one is a very recent addition to the scale.)
There is something which has always puzzled me about things like Mental Health, Disabilities, Cancer, and other “Socially Taboo” subjects regarding health. Why are things always made so complicated when it comes to talking about them??? Why do I never feel entirely comfortable using language which I understand most easily in conversations???
It is a bit like when I was at Schiphol Airport a few years ago. I was speaking to a lady behind a desk in Dutch (I wanted to get some information out of her about something) – then I told her I didn't understand something she had said. The word I used was English (I think it was “sorry?” - which has a slightly different translation in English and Dutch – it certainly wasn't “What?”, which would have been quite acceptable to her ears) – the lady immediately came back in English with “I thought you could speak Dutch”.
If we could find a way of talking about Mental and Physical Health in ways that we feel comfortable with (whilst not offending anybody who may have the conditions under discussion) life would be a lot easier. I suppose I am lucky in having people who I know I can talk to about their conditions in language I understand (as well as asking what must sometimes seem like the stupidest questions they have ever heard) without them causing me any physical damage as a result.
Just out of interest – instead of calling one of my illnesses “Heart Failure” (to me – if something fails it stops working altogether. Whilst my heart isn't operating at anywhere near full capacity the fact that I am typing this blog post indicates it must be working) I wish we could call it something like “Reduced Heart Function”.
Even when illnesses and health conditions seem complicated – surely the best way to deal with them is to keep it as simple as possible???
Or are we doomed to spend our lives having to get translations of “Medical” Terminology which we would otherwise have no Earthly use for???
I speak English and Dutch (I also have a GCSE in French and German). I do not speak “Doctor” or “Medical English”. Humans who attempt to talk to me in either of those languages are likely to be asked for a translation. I can still remember being told by a Dr in Glenfield hospital that I had told someone that I had an “ASD” (or some other three letter acronym) when I was a baby – this was news to me. When I asked for a translation it turned out that I had told them that I had had a hole in the heart – which was correct.
Using simple language might seem like a total waste of time to those who make their living using “Medical English” but – if you are anything like me – people end up feeling a lot more comfortable when they know exactly what is happening (and that their questions will be answered in a language they can understand.)
This is probably going to be a slightly strange blog post (and it could be a bit difficult for some of you to read). I am going to mix in some stuff about things which have been happening to me recently – as well as trying to explain my attitude towards my current escapade (and if you think you have read what is about to follow before on Facebook I would suggest you keep reading anyway because you may be surprised).
I have always been fascinated by people who come with a slight “twist” - you know – that one thing which sets them apart from the rest of the population. I just seem to gravitate towards them and feel more comfortable with them more quickly than the “normal” run-of-the-mill people in Society.
What fascinates me the most about them is how on Earth they ended up in my orbit – more to the point – why they ended up there. I believe every human can teach us something (we might not know what it is immediately).
I can remember two conversations I had with two different humans of the Male Species on the subject of their lives. One was an ex-Heroin Addict (he was the kindest man I have ever met) and the other one introduced himself to me as “Hi, I'm Andy, I have Depression, Psychosis, and I have attempted suicide”.
Seeing as neither human had done anything to harm me I was comfortable in their presence – and I would never judge someone on their past anyway. What matters to me is – are you likely to damage me in any way??? If I think the answer is “yes” I will remove myself from your presence rather more rapidly than you might expect.
People's minds and attitudes are a constant source of amazement to me. I love reading books where the reasons behind things are explained. I also love reading about how different circumstances can affect different people in different ways.
For example I have recently read a book called “Confessions of a Sociopath” which was written by a non-Criminal Sociopath. In a funny way it actually went some way towards explaining my attitude towards the challenges I face. Before you start to worry – I had better tell you that (according to the checklist in the book) I am not a Sociopath. However, I could see similarities between how the Author manages to disconnect him or herself from situations and people which are no longer beneficial to them and how I have always treated any challenges I face.
I prefer dealing with problems on my own, in my own way, and in my own time. I may appear to have the strangest way of going about it at times (as well as a tendency to turn a really terrible situation into a joke as often as I can) but that is just me. I operate on the principle that – as long as I manage to achieve my objective and nobody gets damaged along the way – it is going to be OK.
There is one thing I need in order to be able to do this. I need a reliable source of information I can trust. If I am reliant on humans to help me I need to be able to feel like I can treat them in the same way as I treat my friends as much as possible. Ask seemingly stupid questions, make jokes, etc.
One thing I have an absolute hatred of is those people who act like they are the great “I AM”. As in those people who think they should be obeyed no questions asked. Let me ask questions and I will be able to cooperate with you – answer my question with “Because I said so” and all bets are off – especially if my life is involved.
Before I continue I want to share something which might help you understand some things I am about to discuss.
You could say that Cancer is not exactly a stranger to my family. In fact, I feel sorry for my Dad – his Dad, Mum, Mother-in-law, and wife all had it in one form or another. In fact, the only one of those four who didn't actually die of Cancer was my Dad's Mum.
My Mum was the scenario which passed through my mind when Glenfield Hospital decided to set the Palliative Care Nurses on to me. She was told in January 2007 that she had terminal cancer and by mid February 2007 she had died. Now, Glenfield were not to know about my Mum in advance of my diagnosis but not immediately giving me an “Expiry Date” or a “Best Before” date was worse than the diagnosis itself. It wasn't until my first appointment with the Oncologist that I found out I have three to four years on this planet (ironically – because nobody told me before that appointment I was actually under the impression I would be dead before I got to see an Oncologist of any description – it took nearly a month to see her).
If you have ever met my Mum you will know we are similar in lots of ways – we will both make sure you are happy before concentrating on ourselves. We will also make light of any serious situation we find ourselves in. Cancer diagnosis??? Heart Failure Diagnosis??? Only a minor inconvenience – nothing serious to worry about.
(The funny thing about it is if you were to look at my scans – and read the letter from my Cardiologist to the Oncologist – I shouldn't be able to move. However, to watch me you probably would think “why is she lying about having Heart Failure??? She is wandering around perfectly OK!!!”)
To be perfectly honest – I am treating the Heart Failure and the Cancer in exactly the same way as I treat my sight. Unless they cause me problems (or I am being viewed by Medical Professionals or taking my tablets) they are minor inconveniences to me.
I have always had that attitude towards my sight anyway – it is everybody else who has got the problem not me. After all, I know my own limits – other people don't unless they have seen me in action (and most of the time they won't realise how bad my sight really is. I have been shocked by the amount of my friends who have read my blog and had not previously had the faintest idea how bad my sight really is – I apparently move among you undetected).
My favourite comment was something someone said to me in person. Their husband had read one of my Facebook statuses out to them and had obviously decided I had lost the plot. This was after my most recent MRI scan. It is not my fault that the husband in question plays drums in church – it is not even my fault that that was the first thing which came into my head when I was in the scanner and all I could hear in the righthand side of my head was someone playing on a drumkit. Put two and two together and you come out with the husband playing drums in my head (or at least I did).
Don't worry – my mind can throw up all kinds of apparently illogical logic. “Only Connect” is too easy when it comes to some of the connections my brain makes between apparently random things.
Being able to make a joke out of my situation has actually made it easier for me to deal with. If I couldn't joke about feeling like a bus (“Power System Pressures OK”) or “Jump-lead tests” (also known as ECGs) I would be seriously depressed. I especially love it when other people accidentally tune in to my sense of humour – like when I went to see the Heart Failure Nurse.
Somehow the words “Heart Failure Nurse” turned into “Heat Failure Nurse” when they got on to the Church Notice Sheet. My Facebook status on Tuesday morning played on that with absolute delight. “I am a bit confused as to where I should be going this afternoon – the calendar on my mobile phone says I have got an appointment with a Heart Faliure Nurse but the notice sheet at Sutton appears to suggest my appointment should be with an Engineer. Apparently there is such a thing as a “Heat Failure Nurse”??? I know I make jokes about feeling like a bus and jump-lead tests but I am a HUMAN. If my personal (built in) heating system packs up I would expect to find myself in a hospital not a garage or a vehicle servicing centre”.
I am just wondering what the 24 hour tape test will bring next week. More fun I hope.
Oh – before I go – I found out today that I have been awarded the Enhanced Rate for Personal Care and Mobility for my Personal Independence Payments (PIP). It should be in my Bank on the 18th of September. Thank you for your prayers and positive thoughts.