You know something? It feels weird whenever someone tries to make me out to a campaigner, an activist, or a teacher on the subject of sight problems. I wouldn't class myself as any of those things for various reasons. I am sorry but – to me they all have various negative connotations. So how would I define myself??? Someone with sight problems who tries to educate people via writing about the challenges I face.
I know this blog probably wouldn't win any awards – I am quite surprised when people tell – not only me – other people how good they think my blog is in my earshot. These people are all people I admire in one way or another for the work they do in their own area of expertise.
Recently I appear to have started to branch out a bit – without making any conscious effort to. I have taken part in discussions on Twitter with an ever-revolving group of Police Officers (the discussion group is called “WeCops”) where I appear to have woken some of them up to the issues someone like me faces – as well as how they can alter things to make life easier for people like me. Put it this way – I was quite astonished (and a bit annoyed) to see a video clip of a new Police car with its blue flashing lights going. There was no sign of the annoying Alternating Flashing Headlights when the blue lights were flashing. Why did this video annoy me a bit??? The car was not one owned by Leicestershire Police (I think it was Greater Manchester Police).
The most exciting thing I have done though involves a publishing company run by two friends of mine (as well as something else I am planning to do slightly separate from that but along the same lines). Cynefin Road (the publishing company in question) publishes a free e-zine which I have contributed articles on various subjects to. This time I did something a bit different – I submitted a suggestion for a topic. I was pleasantly surprised when they took my idea up as even I admit it is a tricky subject to deal with if you don't want it to get hijacked by the well-meaning “sympathy” brigade. The subject was (Dis)Ability.
I submitted a poem (which I will share with you in a bit). The poem almost wrote itself in a way. The first lines came into my head without me thinking about them.
Although it is primarily about my experiences of my sight I have shown it to a couple of my friends - who have other disabilities - and they said that they recognised the feelings in it.
I am very pleased that – not only are Cynefin Road going to publish it but it is also going to appear in the next edition of “Choice” Magazine which is published by the great people at LCiL. To top it all off – if I am healthy enough (and the only two things which would stop me are another trip into hospital and/or my expiring full stop) I will be reading it at the “Choice UnLimited” Roadshow at the Tigers Ground, Welford Road, Leicester, on 10 April 2018.
For those of you who either cannot wait or cannot make it to the roadshow – don't worry – it is available below for you to read.
I am the forgotten, the ignored.
Please allow me to introduce myself,
I am your friendly local afterthought.
Never complaining as much as I probably should,
Only because I know you are so easily bored.
Trying to make my way through the neighbourhood,
The Manor of which you seem to have styled yourself as Lord.
Someone once said to me,
"It's your sight - it's your problem".
They don't understand so how can I blame them.
I can only hope to educate and make them see,
How they sometimes make life extremely difficult.
So much so that I had to grow up long before I became an adult.
My natural world is blurred and fluffy.
Put simply - without my glasses I cannot see clearly.
Even with them on I sometimes have to pay very dearly.
Grocery shopping can be a nightmare,
And when walking in the road I have to take great care.
However, and I mean this most sincerely,
Be very careful how you treat me.
I may not say very much,
But you will soon know,
Exactly how far I am prepared to let you go.
I see more than I say.
I go by actions - not words.
Please Sir, Madam, MP, or Lord of the Realm,
Are you going to help me,
Or just follow the herd???
I wish you wouldn't try to leave,
People like me in our personal version,
Of your nicely created Hell.
Trust me - given half a chance,
I could turn your life into a great expanse.
One filled with opportunities,
To help yourself as well as people like me.
There is a saying.
"No man is an island"!
We need to find a way of creating,
A world where everyone is treated equal.
Anything else is just like a house built of sand.
Reading this might have been tough.
But I bet you have never had it so rough,
As the forgotten, the ignored -
Never mind your friendly afterthought.
I might have a pair of glasses on my nose,
But them being some kind of miracle worker???
I think they must be on a "Go Slow".
I wish I could properly explain.
But I think you,
Would end up so confused,
That you would probably never speak to me again.
Yes - glasses help me see.
Including the discriminating con,
In those offers of "Buy one pair, get another pair free".
It is just not on.
Those offers are not open to me.
My glasses do help me see.
The gorgeous and the ugly people,
Who sit and stand around me.
The ones who help me automatically,
As well as the ones who watch me struggle.
I have problems with angles,
As well as bright lights and the dark.
I keep waiting for a human Angel,
To realise being me is not such a nice walk in the park.
So, next time we meet,
Instead of commenting and complaining,
Because I am inconveniencing you.
Offer to help me,
Or ask what I need.
Just do not try feigning,
Your interest in me.
I am a sensitive soul,
Who can speak for herself.
All you need to do is truly listen.
Hear me when I end up needing your help.
Don't take over,
Let me advise.
You are the disabled one,
When it comes to dealing with my sight.
I haven't usually got the energy,
For the required mental fight.
I am no longer intending to be,
The forgotten, the ignored.
Or even the friendly local afterthought.
I am going to be me.
What that entails - you will just have to wait and see
Its funny how one person can be scared of an idea that another person can find to be the most relaxing concept in the world. For example, any attempt at getting me anywhere within three feet of the back seat (pillion) of a moving motorcycle will result in me leaving the area rather more rapidly than usual – on foot. However, I will happily watch TV programmes featuring people riding motorcycles (one of my favourite TV programmes is “The Hairy Bikers” after all).
If you ask people which sense they would least like to lose they will probably say their sight. After all, sight and hearing are the two senses we use the most in our daily lives, aren't they???
So I bet I can confuse you totally – just by telling you one of the ways in which I relieve stress. I take my glasses off.
I can hear you now - “But Inky you need your glasses to be able to see, don't you?”. And your brain might be trying to work out how someone who cannot see clearly without their glasses much further than three centimetres from the end of their nose finds not wearing glasses relaxing. Especially if you have got 20/20 vision.
What you have to remember is this – my natural world is blurry and fluffy. Solid boundaries and edges do not exist in my natural world. When I put my glasses on I am confronted by two sets of boundaries and solid edges – the ones on the objects I am looking at and the ones placed on my by Society – as in I feel I have to be as much like everybody else around me as I can. The funny thing for me is that when I haven't got my glasses on I actually look like most of my friends but I am actually the least like them (well they can wander around without glasses on and not crash into anything or fall over – I can't).
My other forms of relaxation are mostly run-of-the-mill ones – reading, writing, and being near water, listening to music, etc.
There are two others which are kind of connected.
If you want to see me so laid back I am almost horizontal take me to Rotterdam (any part of The Netherlands will do but Rotterdam works the best). That is my personal “safe space” both in my head and physically. You can almost have the same effect if you give me something to read which is written in Dutch.
The other one is – find a Dutch person or a Glaswegian – complete with the accent - for me to speak to. (Luckily I have got a friend who is Glaswegian and we speak every day on the phone.) Why a Glaswegian??? If you slow them down enough you will find the speech pattern is the same as the Dutch one.
What do you do to help you relax?
We all need to take time out for ourselves. If we don't we could end up with major problems regarding our Mental Health.
On Wednesday evening I went to a rather interesting group which was run by my favourite Mental Health “Explainer” - Julian Harrison. I say “Explainer” because he genuinely explains Mental Health in such a way that I feel I can ask questions and he will give answers in a language I can understand.
Julian's latest venture is a group called “Mind Apples” and it was a group which I felt very comfortable in.
The premise of “Mind Apples” comes from the old saying “An apple a day keeps the Doctor away”. Yes – I know – you are probably thinking that you have to physically eat apples. Apart from that – doesn't that saying only apply to physical health and not Mental Health???
Congratulations – you have hit the nail on the head. We get bombarded with all kinds of tips and tricks to help us keep ourselves in tiptop physical condition but the Mental side of things seems to have been ignored for most people. Until – of course - they develop really poor Mental Health and then everyone starts panicking.
“Mind Apples” wasn't a kind of “Alcoholics Anonymous” for those with poor Mental Health but it was a useful way of finding out how people deal with stress and what they do to calm themselves down when they feel stressed.
I am going to write about my ways of dealing with stress in another blog post. What I will say is that my favourite method of relieving stress is counter-intuitive to most people. I simply take my glasses off. (For a fuller explanation and my other techniques see the blog post I am going to type on the subject.)
Not enough is said about how to prevent poor Mental Health. We need people like Julian and Judith Critchley from “Loving Mental Health” to share their experiences and make talking about Mental Health (good or poor) seem normal.
I don't want to do Julian a disservice but I really think he makes more sense when he talks about Mental Health than most people because he has poor Mental Health himself. He is also very open about it and how it affects him, (In fact, if his book on a year with his Mental Health comes out on Kindle I will buy it and read it. The book is called “A Year In Melancholia”.)
It is quite strange because I think Julian is a very inspirational person because he is the exact opposite of what you would expect someone with poor Mental Health to be like. What I mean is – I remember being slightly scared of him when I first met him. The best way I can describe him is – he looks like a very grumpy teddy bear but he is one of the kindest, most gentle, men I have ever had the privilege of calling a friend.
|This may surprise you but I am usually reasonably easy going. I don't lose my temper very easily but watch out when I do lose it - things can get very interesting (and not necessarily in a good way) for the person who has upset me. Don't worry - I don't get physically violent with anybody, instead I get verbally violent (they get argued with to the point of them wanting me to disappear permanently).|
The best ways to get me to lose it are to make me feel patronised and/or to make me feel as though you are trying to take control of me for whatever reason.
(I saw something on Facebook a while back which might give you a clue as to how best to deal with me in the event of you desiring to talk me into - or out of - something. "I am Dutch - let's save time and you just agree I am right". Well, I am half Dutch but the same still applies.)
I suppose my big thing about not surrendering control to anybody comes from never feeling I had control over my life when I was younger. Authority figures usually seemed to make important decisions for me without actually involving me in the discussion. I can still remember a couple of instances with a certain teacher (who will remain nameless) where I ended up feeling as though I might as well end it all for all the stress I ended up feeling nearly every single time I dealt with them at school. I still haven't forgotten about the non-appearing computer (which would have been very helpful), or the time when they successfully (yet unknowingly) managed to convince me that my life was not worth living at that point in time by the simple action of telling me that I couldn't leave the school I was at - even though I knew for a fact that a boy two years above me had been transferred to the school I wanted to go to. (Maybe the second incident was partly my fault because I wasn't confident enough to explain why I wanted to swap schools - bullying and an inability to cope with the way some of the teacher's colleagues were treating me were the main reasons. Although I was pleased with myself for knocking the wind out of their sails. They went from shouting at me to almost a stunned silence when I told them I wanted to leave.)
(I still felt nervous around them the few times I saw them after I left school. There again - that might have had something to do with the fact I was on their "turf".)
As a result - you can advise me, you can gently "nudge" me towards the decision you would like me to make (in order for that to work you really have to make me think it is my decision - sometimes easier said than done). However, the minute you tell me to do something or not to do it, my first reaction is going to be to go on the defensive and argue with you. I will make it very easy for you to work out how best to argue with me when you have told me what you think I should do - just walk away in silence. Don't bother trying to explain your side of the situation, don't bother giving me a list of reasons you think I might regret not following your "advice", just don't bother speaking to me until I decide to speak to you. You never know - I may eventually come round to your way of thinking in my own time. However, you will find out extremely quickly if I think you have tried to tell me what to do - even if that wasn't your exact intention.
Honestly? Your best plan is to give me options. I can work with options - especially if I can talk them through with you without you playing the Great I AM. (This includes you apparently deciding how I am going to feel if I follow my intended course of action without allowing me to explain why I think you are wrong. You may find out that I agree with you but for the exact opposite reason to the one you come up with.)
It was quite funny on Sunday when I was talking to one of my friends. They reminded me of an offer they had made some time ago. I didn't know how to tell them that I didn't feel pressured into taking up their offer - in fact - I felt like they were just being their usual kind and friendly self. (I intend to take them up on the offer as it happens.)
Oh - the reason for me typing this blog post??? You can blame Dr Punch-up (sorry - Dr Panchal) of Glenfield Hospital for hitting just about every raw nerve I have got on the subject of being patronised and ordered around (not forgetting only allowing me to give half an answer to one of his questions - I nearly cheered when he looked at me after I had finished my answer and said "can I speak?". That really cheered me up.).
|For those of you who are wondering what a book of stamps has to do with an "Infinity Cube" all I will say is - it is not in your interests to leave me alone with a book of stamps if I am bored, The squares where the stamps are stuck will probably end up with their rims folded so you may encounter slightly more difficulty than usual when it comes to detaching the aforementioned stamps in preparation for attaching them to your desired envelope, etc. The resulting "origami" will also probably greatly resemble an "Infinity Cube" when it is stretched out. You have been warned!!!|
Regular readers will probably know that I am a big fan of gadgets. The more pointless the better. Although, I couldn't quite see the point of the "Fidget Spinner" craze - I prefer my pointless gadgets to have at least some use rather than just spinning them.
I was looking on Amazon when I saw something which looked very interesting (so I bought three different varieties of it). It was a cube which advertised itself as an "Infinity Cube". Luckily it had photos to show what you could do with it. Just think along the lines of the sliding glasses case which some people (including me) have - the one which you can slide open and shut with different colourschemes on each side???
The photo which really grabbed my attention was something like this one
Obviously that was not the original photo on Amazon - I took it on my bedside table.
That particular "Infinity Cube" looks like this when it comes out of the box
A four square by four square cube (photo taken on my bedside cabinet)
Yes - I know - I am extremely easily amused. Just leave me folding and unfolding an "Infinity Cube" and you will keep me quiet for hours on end. I suppose it could be because I have never seen the point in origami or anything which involves patience and dexterity (never mind halfway decent sight for peering at small things) - but I love just being able to open and fold things without feeling as though I have to "create" something as an end product.
If you are interested in "Infinity Cubes" they are available at all sorts of prices - from cheap plastic to unbreakable aluminium. The one in the photos above was one of the cheapest ones - I also bought an aluminium one (which is just blank cubes inside and out) and one which is a bit of a strange take on a Rubik's cube made out of plastic.
|I only went for an appointment with a Cardiologist - I didn't expect to come back out of hospital permanently three weeks later!!!|
Right now your friendly Blogger is feeling very guilty for not posting anything on here for the past month and a bit. It was my original intention to post a blog after my appointment with my Cardiologist - except I had not got my laptop with me at that time and it turned out that being attached to a wall by your nose isn't exactly conducive for blogging anyway (particularly when you are having severe trouble breathing on your own).
Please accept my apologies for the sarcasm but - it has honestly been one of those situations where if I am not sarcastic about it I will probably offer myself up as target practice for one or two Firearms Officers I know from Twitter to put me out of my misery.
The ironic thing was I actually learned that my heart's function/capacity has increased somewhat - it is now 45% in the left side and 25% in the right side. (Considering that 50% is considered to be "normal" optimum capacity for each side my left side isn't too bad.)
Anyway. I realised I had a bit of a slight problem when I was trying to get to my appointment. Correction - I realised I had a bit of a problem when I was trying to get to the bus stop in the video I posted in the blog post about me and sunshine. I felt "puffy"- almost to the same point I was before I was admitted last year.
I had planned it so I could go to the Oncology Department at Leicester Royal Infirmary to pick up some Bloodtest forms (which I needed for the next week) then catch a bus to Glenfield Hospital to go to my appointment. Well - I kind of managed to do that. Just not at my normal speed. In fact, I felt so bad that I ended up doing something which I hate it when other people do it - I caught a bus between two bus stops within 30 metres of each other (I usually think people are lazy when they do that).
Anyway - I got to Glenfield approximately an hour before my appointment time (this is very unsual for me). When it came to getting my blood pressure measured I got very scared (but I didn't say anything to anyone) - from what I remember my blood pressure at that point was 134. Not only is this very high for me - it is high for most people at rest.
Then I saw Dr Chin (Cardiologist) - who gave me the good news about my heart. Unfortunately I told him about some symptoms I had been having at night (waking up unable to breathe full stop one night and waking up - going to the loo, going back to bed, then feeling like I was not long for this world whilst gasping for breath). Dr Chin didn't like the sound of that very much so he sent me for a chest xray - on foot. When I arrived back in his office I had difficulty breathing - so he subjected me to a Blood Sats check - that came up at 88% (anything under 90% gets you free bed and board in a hospital), then he got me to do a "Peak Flow" test (before he did the "Peak Flow" test he did say that he was trying not to admit me - that didn't work). So I ended up being admitted into Glenfield Hospital. I didn't mind that bit - what I did mind, however, was being told it could either be a blood clot on the lung (potential immediate death) or asthma (potential not-so-immediate death). My English Grandma had had asthma and she seemed to cope with it. (Remember the Asthma thing - we will come back to it later.)
To cut a very long story short - it turned out that the original cause of my breathlessness was actually fluid in the lung (potentially caused by the cancer - the words "Lymph fluid" were mentioned). This was drained. You won't be surprised to learn how relieved I was that it was only 600 millilitres and not the "500 litres" which I originally misheard the amount as.
Then I was discharged. This turned out to be a major mistake. Luckily Glenfield had done themselves (and me) a major favour by booking me a Dr's appointment for the day after I was discharged. (I should have had my implant implanted and my Vitamin D injection injected on the day I was discharged but Glenfield didn't have them in stock so they talked to the surgery and booked the appointment.)
I got home feeling absolutely fine. Then I went to bed and started to have trouble breathing again. I put this down to the usual thing of "come out of hospital - go downhill and then start recovering properly" - except it didn't quite turn out like that.
I didn't sleep very well the night I was discharged. In fact - I had the worst night's sleep I have ever had. I eventually got what I call "proper" snooze between 6am and 9.45am the next morning. My appointment for my injection and implant was at 11.50am - and I had to go to the Chemist's and attempt to collect both the injection and the implant on my way to the surgery (the surgery is across the road from the Chemist's). There were two major red flags which alerted me to the fact that I might not exactly have been functioning at 100% at that point. These were (1) I ended up clinging to lampposts so I could catch my breath whilst walking up the hill (usually I can walk it in a matter of minutes without stopping) and I had to prop myself up against the counter whilst I was waiting to be served. (2) When I found out that the injection hadn't turned up I didn't have either the energy or the breath to argue with the staff in the Chemist's (if you have read my Facebook statuses you will know that I usually argue and have a go at them if my prescriptions are not available when I expect them to be).
Then I made my way to the Surgery. The nurse who implanted the implant took one look at me and decided I was not really in a fit state for anything. She told me I sounded "wheezy" and I obviously had trouble breathing. She spoke to the Dr who gave me two doses of Sabutamol and promptly attached me to an oxygen tank - before calling an ambulance. (After the Sabutamol I actually felt as though I could have walked back home. Thank goodness I didn't.)
The "fun" part came when I was installed in the ambulance. Apparantly, Glenfield didn't have any spaces for trollies when I was due to go straight there. So, the next question was - how am I going to be transported to A & E at Leicester Royal Infirmary??? I could go as a "blue lights" case or I could go as what I classify as a "van" case. Apparantly, had I not been stable when attached to the wall of the ambulance by my nose (on oxygen in other words) I would have been a "blue lights" case. Phew.
What really upset me was the fact that one of the Drs in A & E told me that I might be going home instead of to Glenfield. Why was I so upset by this??? At that point I was on 8 litres per minute of oxygen and I actually was at the point where even I admitted that a hospital was the best place for me. Let's just say that I hate hospitals with a passion you can only dream of - and getting me to admit I should actually be admitted into one really means that things are extremely serious (to the point of "potentially life-threatening").
Eventually, I got a chest xray (they thought that the fluid might have come back into the lung they had drained). I had discounted the return of the fluid for one very simple reason - the timespan between the draining and the recurrence of the symptoms was too great (when the fluid came back into my chest last year after the initial drainage I had severe difficulty breathing after 12 hours instead of over 24 hours).
I was working on the (eventually proved 95% certain) assumption that it was in fact asthma which had caused my readmission. More to the point - I was actually working on the assumption (which was also proven correct) that the readmission could have been prevented by fitting me up with at least one inhaler before I was originally discharged. The inhalers were actually mentioned on my original discharge letter - I just hadn't seen any, let alone touched any. (There again - the discharge letter admitted that it had "been typed from notes instead of seeing the patient".)
Just to confuse both me and the situation completely there was a question mark as to whether or not it was actually asthma or something called "Cardiac Asthma" - which is when seemingly asthma symptoms show up as a result of Heart Failure.
Eventually, I was given the diagnosis that it was indeed a 95% chance of being asthma (am now waiting for further tests) as well as two inhalers (hooray).
Now I am just waiting for the tests to prove whether or not it is asthma - as well as the next appointment with my Oncologist.
I did take it easy for the first few days after I came out of hospital - then I got bored of being at home and decided to go into town for a while today. I survived the experience better than I thought I would - no breathing troubles, no exhaustion, etc. Don't worry - I am not planning on doing any marathon trips for the next couple of weeks.
If you are one of my friends I would like to take this opportunity to send you a BIG THANK YOU HUG for your support and friendship during this escapade. Yes - I know I may sound like a broken record but it really means a lot to know I have got people standing next to me.
|This is probably going to sound like the start of a very bad joke (which I suppose it actually is in a way) but - what do you get when you cross someone who is half-Dutch with a sight problem and an independence streak a mile wide??? The short answer isn't actually all that short at 5ft 10" tall but it is commonly known by a label which only has five letters. Yes - its me.|
If you have met me you may think I am a bit of an oddball whose brain doesn't exactly function in the same way as everybody else's. And you would be correct - just not in the way you might mean.
The original "strapline" to this blog was "A Sideways View Of Life" - referring to the fact I don't "see" things in the same way as everyone else (both literally and metaphorically).
So - how on Earth does my brain work??? This is a question I find myself asking daily. It just seems to come up with some seriously strange thoughts and ideas at times. It also seems to have a very strange way of processing information (as anyone who has ever had the misfortune of attempting to explain something to me will not hesitate to tell you).
Not for me the Computer logic of "if so-and-so then xyz". It is more likely to be a case of "if so-and-so then oranges, a staircase, and bananas".
You could say I am a Master at Independent Thinking. Funnily enough I prefer trying to solve things on my own in my own way.
I suppose it is only natural when your natural state involves life literally being a blur that you have to figure out yourself using a process of trial and error but without any help from anyone else (especially if you are on your own when your glasses fall off your bedside cabinet).
There is another "excuse" I can give you which might not make very much sense until I explain it. The excuse is my Mum - well, not her specifically, more something she used to do when I was growing up. She was Dutch - with Dutch as her first language (obviously). I think English was actually her third language (with Swiss German sandwiched in the middle).
One of my favourite things she used to do was start a sentence off in either Dutch or English and finish it in the other language - without translating anything she said to me in Dutch. This left me having to work out what on Earth she was saying half of the time and put both bits of the sentence together before coming up with a reply (no wonder I found French lessons torturously difficult with their use of textbooks and audio tapes). The other favourite thing she did was automatically use the Dutch version of a proverb (even when she could speak English like a native).
This must have meant that my brain was conditioned to realise that the conclusion will not necessarily be obvious - you have to wait for all the information before you can be sure what is going to happen. Also - context is key. For example - my Mum would use the Dutch word "Haring" in two separate events. Her location would be a key to what she was actually talking about. If she was standing holding a frying pan or plate when that word passed her lips I could be 99% positive that she was referring to the fish English-speakers know as "herring". If she was standing on a campsite looking at a tent which needed to be put up when she mentioned "Haring" I could be 99% positive that she was talking about a "tent peg". (Luckily for me I came to realise that there were certain words she would not use the English version of when she was talking to me. Let's just say she had enough Dutch words for the word "Mess" that she never actually needed the English one - unless she was talking to a non-Dutchspeaker. She reserved "Mes" - with a single "s" - for when she wanted me to hand her a knife.)
So, next time you think I am not making much sense or I am coming out with some very strange ideas - stick around - you might be surprised at the results. I might not have what appears to you to be the most logical way of doing things but - just sometimes - there might be a method in my apparent madness.
|Ah- that's better! I actually feel healthy enough to type blog posts. Trust me - there have been times when I haven't really felt healthy enough to do anything at all. A couple of times I have seriously considered calling an ambulance (and you know how I feel about hospitals).|
It is funny how quickly someone can go from "I would rather die than bother a Dr" to actually desiring to get themself to a hospital at the first sign of something being seriously wrong. It is also quite ironic when you realise that the aforementioned individual has been told they are not going to be cured from the condition which is behind the reason they wanted to call an ambulance in the first place. Let's just say that a suspected chest infection/cold (which usually wiped me out even before I got the Heart Failure diagnosis) and Heart Failure are not exactly a match made in Heaven - the match is more likely to send me to Heaven.
Anyway - where was I???
Oh yes - I was going to give you my "State Of The Health Of The Ineke" Address.
There have been some annoyances, some really funny things (there again - that might just be my rather twisted sense of humour), and some educational things, which have entered my orbit recently. And the "educational" things really were educational - just maybe not in the way they were intended to be.
First I feel it might be useful to explain my personal philosophy regarding my health and how I try to look after myself.
People tell me I am an inspiration in the way I am coping with this escapade. I have said many times before that I only know how to fight and keep going when things get tough - giving up is an alien concept to me. I suppose it is one thing I have to thank my Oma for - she was one of the most determined people I have ever met (I only found out by accident that she had actually had cancer three separate times before she died) - she (and my Mum) was also one of the most caring people I have ever met. The three of us share one characteristic - if we like you we will do anything in our power to help you. On the flip side - however - getting on the wrong side of us is "not recommended for Medicinal purposes" (as my Glaswegian friend would say.
The funny thing is that I now consider myself to have access to four types of "medicine" - the first being the stuff everyone recognises as medicine (as in tablets, injections, etc). The second is my friends (even though some of them are potentially deleterious to my health - but more about that later). The third is humour - if you can't see the funny side of something serious you are just going to get stressed out. The fourth is chocolate.
The whole thing kicked off a couple of weeks ago. I started feeling a bit odd. I knew I had a cold but I had had them before and I knew what to do about it (let nature take its course). However, when I expected to start to feel better I ended up feeling a lot worse - to the point where I thought my next residence would either be somewhere where I can be attached to a wall by my nose, or a nice comfy wooden box 6 foot underground.
To say that was scary is something of an understatement - one minute you are unconcious and the next you are awake wondering if you are ever going to breathe again. I somehow managed to calm myself down enough to be able to breathe and go back to sleep.
I was advised by a friend of mine, who is an ex-Heart Failure Nurse, to contact my own Heart Failure Nurse and see what she said. I am glad I followed that advice.
The horrible thing was - I knew I had a couple of Medical Appointments as well as events I didn't want to miss that week. One of the Medical Appointments was actually the source of what I think caused the (currently suspected) chest infection - Stress with a capital "S". Not the appointment itself - more like trying to get people organised to enable me to get one lot of tablets which the Oncologist had prescribed at my last appointment. (I am now working on the assumption that I can get my Surgery to ring the Oncologist directly if the letter explicitly stating I need one lot of tablets hasn't turned up by next Monday.)
The events I wanted to go to all included various friends (I only had to miss one of them because I just didn't feel at all well).
If there is one way of taking my mind off my poorlyness it is to surround myself with humans who enjoy writing and talking about writing. Scribbles allows me to do that - and I found something else (which is - unfortunately - ending next week). Take one pack of students who are studying Media at university, and one absolute wizard of a tutor called John Coster, and add the Three "Social Media Cafe" Musketeers (of which I am one) - water liberally with coffee - and you have a recipe for a nice few hours. (It also helps if you are almost stunned into speechlessness by the aforementioned John Coster telling one of the students in your earshot that you are "one of the best bloggers I know" - that made me go from literally feeling like the "Walking Dead" to feeling like a useful corpse who could actually impart wisdom to someone.)
Hey - I am not a teacher (nor do I wish to ever become one) but if I can help people learn about blogging I am very happy. Even better if someone is interested enough in me to read my blog as a result of talking to me (and compliment me - but that isn't a mandatory requirement) to see what I have been trying to tell them about.
I have also rediscovered my love of something - Hot Chocolate (second thoughts any chocolate will do - even a box of chocolates. My favourite are Quality Street, or - if you want to be my friend for life - supply me with several bars of Verkade milk chocolate, or a large box of "Hagelslag" in milk chocolate). There is nothing better than being curled up in my chair (incidentally where I am typing now), wrapped in my large throw, drinking a mug of Hot Chocolate to make me feel as though all is right with the world.
I nearly forgot - I told you I was going to explain why I said that some of my friends are actually deleterious to my health. There are a few friends who - if I think there is a good chance of me ending up in their presence for whatever reason and having fun as a result - could invite me to the opening of an envelope and I would turn up. (One such friend was the springboard to the start of this escapade when I couldn't get to an event she was at and I wasn't too bothered. If I had been healthy at that point I would have done everything in my power to turn up to it and been very disappointed if I couldn't make it.) I think most of them would know who they are (with a couple of exceptions).
This is all very well if I am actually in a fit state for public consumption. It is when my loyalty to my friends clashes with the fact that I don't feel at all well that the problems start. I end up feeling both extremely angry with myself and guilty for letting my friends down if I am too poorly to attend (apart from the time I referred to above). I know my friends would probably understand but I suppose it is another aspect of the "be as much like everybody else as possible" side of my character which refuses to make a fuss unless absolutely necessary. (I am smiling as I type this because I know that there are some of you reading this who will probably have a friendly go at me about it next time you see me. You know who you are - mainly because you have already done so.)
Well, now you know I am alive I will finish by sending you a BIG HUG each and saying "thank you for your support".
|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.
|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.
|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.
|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.
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|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).