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Surely A Disability Is A Disability Whether It Is Physical Or Poor Mental Health??? (Or - Why The Blue Badge Debate Has Missed Something Important)
7/30/2018 3:41:50 PM
Apparently people with "invisible" disabilities are going to be allowed to apply for Blue Badges so they get the same rights as those of us with "visible" disabilities when it comes to parking, etc.

There is only one minor problem with this as far as I can see (and I am using the word "see" for a very specific reason which I will explain in a minute).  It is very rare for physical disabilities and poor Mental Health not to be connected in some way.  After all, you cannot divorce the physical ability of someone from their brain and their Mental Health because they are both part of the same person.  There are even some physical illnesses which can actually manifest themselves as a sign of poor Mental Health (I am talking about not wanting to mix with people if you are having difficulty breathing, etc).

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

If only I could do the same about sight problems.
Why I Think The Arguments About Representation And Recognition Of Minorities Are Focusing On The Wrong Thing (Or - Everyone Working Together Might Be More Useful)
7/28/2018 1:29:54 PM
Did you know I am a member of one of those "Minority Communities" which occasionally get mentioned on the news???  Actually - at the last count I think I found I could squeeze myself into at least two of those communities - being Disabled and the daughter of at least one (depending on which country I am currently standing in) immigrant.  Well, both my parents did live in each other's native country at some point in their lives, not forgetting that I am a lot closer to blind than 20/20 vision without my glasses.  Oh - and I am a human of the female species.

I have several problems with the arguments regarding recognition and representation of the "Minority Communities".  The biggest one being as follows - the people who could help us the most (let's call them the "Majority Communities" are not involved in any way shape or form.

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

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

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

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

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

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

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

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

Don't judge me on what makes me different from you - judge me on what makes me the same as you.
I Am Just Me (Or - Why I Don't Feel I Am Any Better Than The Rest Of You)
7/28/2018 11:56:23 AM
I am going to be honest with you (and if you know me personally you will know this already) I hate compliments.  Sure - If I see you wearing a nice top or something I will compliment you on it (whether or not we have ever met before).  But try doing the same to me and I just get embarrassed.  If you find a reason to compliment me on what I am wearing you might have more success (that means that I have actually managed to coordinate my outfit instead of just throwing any combination of clothes onto my skeleton and calling myself dressed.)

Calling me "Brave" is the thing I hate the most.  I know people who I consider to be a lot braver than me.  What is so brave about going about your daily life whilst going through treatment for cancer???  Nobody told me I was "brave" when I was being bullied at school, or when I was teaching myself how to cope with the teaching methods, or when I was "socially trained" to act like everyone else in order to fit in (even when some of the things I had to learn were the exact opposite of what I was most comfortable doing).  That was when I felt I was being brave.

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

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

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

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

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

Of course, I love showcasing the work and projects of my talented friends on here.  In fact, had it not been for a couple of very good friends of mine reading a review I had written of a gig one of them had done (on the original inkyworld) and telling me how much they liked it - and that they both think I am a good writer - you certainly would not be giving yourself potential eyestrain and a potential headache by reading this.  Inkyworld only exists thanks to people who tell me they like reading my ramblings.  So have a BIG THANK YOU HUG for your support.
The Story So Far (Or - My Side Of The Story Regarding My Treatment During My Current Escapade)
7/20/2018 6:37:21 PM
Just over a year and a month ago I was diagnosed with Metastatic breast cancer and Heart Failure.  I was also told it was terminal (actually they said "Palliative care" which means the same thing).

Whilst most of my interaction with the Medical Professionals subsequent to the diagnoses has been faultless there have been times when I wanted to ask them to treat me as a human instead of a caseload.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I cannot fault the Health Care Assistants at either Glenfield Hospital or the Leicester Royal Infirmary.  Nor can I really fault the nurses at either hospital.  Some of the Doctors - however - need to remember that patients are people too with their own ideas and experience of their condition.  I feel happiest when I am allowed to discuss things and ask questions in my own time and way. 
What A Couple Of Months It Has Been (Or - Many Apologies And A Health Update)
7/20/2018 5:16:36 PM
Hello! Do you remember me??? I have vague memories of posting blogs posts on here what seems like in the Prehistoric period.

I suppose I had better attempt to explain what has been going on since I last blogged on here.  I say "attempt to explain" because - to be perfectly honest - my head has yet to stop spinning enough to understand some of it myself.

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

Then the wheels came off big time.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Two things really brought that into focus for me.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Anyway - where was I???

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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