|I must admit this is a kind of a cheat review. I had been to The Coffee Counter before but at that point I was more concerned about whether or not I was going to get a replacement bus pass than rating the cafe.|
There are some great places that you can walk past if you are not looking for them – and you will miss a gem.
The Coffee Counter is one such place. Tucked away on Bowling Green Street in Leicester (the last place I would expect to find a cafe) is an Olde Worlde type cafe. I mean that in the best possible way – the menu is short and sweet (as in you don't get hundreds of choices but what choices you do get are well-executed).
You also feel comfortable in the light, airy surroundings. The best thing about it is the owners appear to have gone for comfort over capacity. I have noticed a tendency with small cafes to try to cram as many customers as they can into the available space making it difficult for people like me to feel truly comfortable in it.
There are no worries about me getting around in this cafe. Not only that but I felt like I could have a private conversation with the friend I was with – even though it was an open plan layout.
The coffee is up to my usual high standards (as is the food).
A really nice touch is the logo appearing on the cups (I am a sucker for an interesting logo).
The Coffee Counter is really worth a visit.
|You could say I have been learning a lot about “Perspective” recently. Both in the Photography sense and the “Life” sense.|
Threaded through this blog post you will see some photographs by my favourite photographer – Derek Lee – which might give you a sense of how I am currently feeling about everything which has happened recently. (My world seems to have been tilted at a very strange angle.)
Where were we when I updated you last time??? Ah – yes – I remember now. I was the subject of an argument between two Doctors (GP and Oncologist) about an implant – and I was waiting for an appointment to see a Cardiologist, wasn't I???
Well, first the good news – my medication is now up-to-date. The implant was implanted last Wednesday and they have got the next one scheduled already.
I saw the Cardiologist last Monday. That was an interesting event. Dr Chin was very kind and respectful.
The strange thing was that when I was subjected to a Jump-lead Test (aka ECG) I was not offered a chaperone even though the human sticking the wires on me was a human of the male species – yet when the Cardiologist wanted to listen to my heart I was offered a chaperone (which one do you think might have involved me being topless???).
Anyway – Dr Chin (Cardiologist) scared me to death when he told me about the function of my heart - severely compromised – and the amount of leaks it has got in it (let's just say I think someone has taken my heart out and replaced it with a colander).
He did one thing which I was under the impression that would not be done due to my heart – he prescribed Beta-Blockers (reluctantly). He also prescribed another drug which ended up making me smile when I came to collect the prescription. More about that in a bit.
I was informed that he would not recommend Chemotherapy or Herceptin for me due to the fact I haven't got any reserve in my heart.
He also told me he wanted me to have both an MRI Scan and a 24hr Tape Test.
When I went to collect the prescription I was surprised to be shown two boxes (one box for each medicine) and a pill cutter. These were issued with the words “you will need to take half a tablet every morning – here is the cutter to cut them”. I had visions of having to explain myself to the Police as I was absolutely convinced that cutting your own drugs is illegal???
Anyway – that was Monday done and dusted.
On Tuesday I had an appointment with my new Heart Failure Nurse. She is very nice – she even explained things to me in a way that I could understand. (However, I am still trying to work out whether it is a very good idea to antagonise a poorly and malfunctioning heart – apparently one of the drugs I am now on is part of a group of drugs called “MRA” (the “A” stands for “Antagoniser”).
I have already told you about Wednesday.
Thursday was a blank day (I met up with a friend of mine and gave my ears a treat by letting them listen to an interesting accent which wasn't trying to give me Medical information).
Friday was a busy day. I started by going to the Social Media Cafe (my usual Friday haunt). Then I came back home for a meeting with the person I am working on my photography project with. After that I had a catchup appointment at my GP.
At my last appointment my GP had decided to try to do me a favour by telling me about a form he wanted to fill in on my behalf. I agreed to him doing this. On Friday he gave me said form and gave me a number to ring about it. Speaking to the DWP is soul-destroying at the best of times – Friday's conversations with them just made me lose the will to live.
I will keep the explanation as brief as possible – however, you will probably still end up getting confused.
I am currently on Disabled Living Allowance (DLA) because of my sight. The form the GP gave me was a special form so I could claim money due to my diagnosis. This meant I had to start from scratch as DLA is now being replaced by Personal Independence Payments (PIP).
Now – I had told every single being I spoke to at the DWP that I had this form. Half of them still asked me if I had only been given six months to live (no). Eventually I spoke to a very nice lady who obviously knew what she was doing because she talked me through the process and gave me an address to send the form to. I am now waiting to hear back.
Saturday I went to a wedding.
Sunday was Church then lunch with my Dad.
I was hoping to go into Leicester on Monday but it was too hot for me to get much further than the COOP near me before I decided to give up and come home.
Tuesday started off boring and then things livened up on my way to my Dad's house. I got a very strange voicemail message telling me I had to book an urgent appointment – no information regarding where and what for. I rang the number I was given and found myself agreeing to an MRI Scan this coming Tuesday. Had dinner with my Dad (which I cooked) and he gave me a lift home,
Yesterday I had a lovely morning with another of my friends.
This evening I am considering going to the Junkfood Project for my dinner but I will see how I feel.
This morning I received confirmation of both the MRI Scan appointment and the 24hr Tape Test appointments (Tape Test Monitor will be fitted on 21 September. I am now apparently in the sights of all three major hospitals in Leicester - Leicester Royal Infirmary for Oncologist, Glenfield Hospital for Cardiologist and (this is the strange one) Leicester General Hospital for the Tape Test.
I will keep you posted.
|Every so often people say things which start blog posts cooking in my brain, then other people will unknowingly add ingredients to the melting pot which end up making me feel glad that I waited with writing the blog post.|
The subject for this blog post is one such occurrence.
The idea came as I was sitting in Church on Sunday morning listening to Mathew Sheffield preach. It was one of those occasions when my brain wouldn't quite cooperate with what I was supposed to be doing (listening to the sermon with no distractions) and started shouting at me “BLOG POST ALERT – BLOG POST ALERT”. Before you think this is going to be a rehash of his sermon – well – it kind of is but with all known religious content removed.
As you know I am involved in an escapade which involves being viewed by various Medical Professionals and having all sorts of opinions thrown at me (although – come to think of it – nobody has said outright that my actions have caused the situation I am in).
The main thread of the sermon (as far as this blog post is concerned anyway) involved one poor guy in the Bible losing everything and ending up being abandoned by his three friends. They abandoned him after each one gave their opinion on the situation and the best way to put the situation right.
One of them told him that he must have done something to cause his illness (as well as losing everything he also had some kind of illness) and all he had to do to recover was to find out what he had done and attempt to correct it (sounds a bit like Glenn Hoddle's comments about Disabled people having done something bad in a former life).
The second one wasn't much more use – this one just fired off advice about what to do without listening to a word the man said.
The third one just made it all about them – a kind of “How do you think I feel?” scenario.
(I actually didn't mind Mat singling me out during his sermon when he asked me whether I would punch a Doctor who did option 2. The answer is – I have been more tempted to carry out that course of action than may actually be healthy for me – and not just on Medical Professionals.)
So – I had a blog post cooking in my brain. It was too hot for me to do very much at all on Monday. This meant blogging had to wait.
Then my attention was caught by a thread on Twitter by Nathan Constable on the subject of “Leadership and Motivational Posters”. (Well, to be honest, it was more about Leadership than the posters.)
When Nathan writes I feel compelled to read his output – he writes a lot of sense in a very easy to understand format.
One of his tweets said “If you don't understand yourself I think it is very hard to lead others”.
This is something most people appear to miss completely. I am talking about just about every human I have ever met who has had some kind of “Authority” over me. If you ask me the main thing they forgot was that they were likely to be subject to human error precisely because they were in fact human themselves. Also, them being human means that they are individuals with individual needs, desires, abilities, thought processes, etc. It is strange how that last sentence also applies to me, isn't it???
This brings me on to Nathan's next standout Tweet - “But the one thing I took from all of this is there is no one single all-purpose one-size-fits-all method of leading”. Wow – this is a guy who I would have no problem working for – sorry – with.
If you have ever met me you will know that I can best be described as a “Quirky Oddball” with what you might call a very strong allergy to conforming to other people's ideas about me. Some of this allergy is due to my sight, some of it is due to me being half-Dutch (have you ever tried to order a Dutch person around against their wishes??? This has a nasty habit of ending badly if you have not had previous experience.).
I am Ineke Caroline Poultney – I am an individual – therefore, the best way of getting me to cooperate with your wishes is to treat me as said individual. This involves simple things like talking to me instead of at me, listening when I say I cannot do something exactly in the way you want it done, giving me all the necessary information regarding what is happening and what you expect to happen (and be prepared for me to confuse you in some way – particularly if you happen to be a Medical Professional). Most of all – throw out all known textbooks which you think might give you a clue as to how best to deal with me. They don't have a chapter on me.
What I am trying to say in my usual “Inky-style” is – trying to force anybody (not just me) to conform with your preconceived ideas will just lead to trouble. This may sound unbelievable but even I have to guard against judging people by what I think I know about them.
We all need to pay attention to our thoughts and actions regarding other people.
The best thing to do would be “Treat Others In The Same Way As You Would Want Them To Treat You”.
The above poster just appealed to my slightly off-beat sense of humour for a couple of reasons. The first reason being that I saw it in the one place where people can legally buy and consume excessive quantities of one particular drug in varying formats all day long if they so desire. (The poster is in the pub I live next door to.)
However, the poster also got me thinking about other sorts of “Drugs” and addictive substances.
I read an article by some Brainiac Doctor or other which stated that there is no such thing as “Food Addiction” - we should really call it “Food Addictive Addiction”. This actually makes some strange kind of sense to me – if only because of a kind of connection to an old Heineken Advert. Bear with me - I think I can explain it so you will understand it when I have finished.
The Advert was one where someone asked someone else if they wanted a crisp but offered them a raw potato instead. (I seem to remember the tagline being something like “Its not ready yet” which referred to the amount of time the lager has to mature before it is ready for consumption.) Now – call me crazy but if you hand me a raw potato to eat I will probably give you a list of options on how I would like it to be served. All the options will have one thing in common – they involve the potato being cooked in some way. If you were to slice said potato very thinly, coat it with copious quantities of paprika powder, fry it, let the excess oil drain off, then serve it to me – well, put it this way, you had better make sure you have a large amount of potatoes handy. I love Paprika flavoured crisps – yet I have never been tempted to eat a raw potato.
I get the general idea that in order for something to be classified as a drug it needs to fulfil two objectives. The first one is it needs to improve someone's mood or view on life – and the second one is it needs to be addictive. (Please note – I am leaving Medical drugs out of the equation.)
This made me wonder about something. In order for something to be classified as a drug does it actually need a physical format??? Alcohol, cigarettes, tea, coffee, chocolate, Heroin, Cocaine, sugar, etc, are all recognised as drugs and they have a physical format. What about things like reading, writing, exercising, driving, etc??? They are equally addictive – yet they have no physical format in themselves. In fact, if you think about it logically, that poster was useless anyway because it contradicted itself in three ways. The first was by being in a pub selling alcohol, the second by people having to walk inside a certain part of the pub in order to see it (exercising), and the third actually deciphering what the poster said (reading).
Oh – and anybody who says you cannot be addicted to reading has obviously never attempted to get any sense out of me if they found me in Waterstones (other bookshops are available) especially if I had a book in my hands – or tried to interrupt me when I am reading.
|Dear Reader (Sorry - Dear Friend)|
I know this may seem a little unusual – me writing a letter to you instead of my usual ramblings on here. There is a reason for that though.
If I could I would write to each and every one of you individually but I haven't got any other way of contacting some of you than through this blog – so please consider this as a personal letter from me to you.
I just wanted to say a big THANK YOU from the bottom of my heart for your support. As someone who exists for the purpose of writing I am always amazed when people actually like what I write – no matter if it is on here or on Social Media. I write because I have to in order to be happy and (reasonably) healthy – you don't have to take the time out of your life to read my ramblings. As the lyrics from “Get The Funk Out” by Extreme say - “We won't try to force feed you.”. (And you know where the back button is on whatever device you read my ramblings on.)
Seriously though – as I sit at this keyboard I am honoured that you seem interested in my thoughts (scrambled as they are sometimes).
For those of you who don't know the story behind this blog – it started out as a head-emptying exercise after I had been made redundant in 2009 (wow – is it really that long ago???). I just started it because I had seen some things I wanted to comment on. Then I learned that humans actually read my ramblings and liked them – because they took the time to tell me they did.
I remember the first time I was told that people were actually reading my blog. The conversation went something like this;
“You are a good writer.”
“Thank you.” - wondering how the other person could have come to that conclusion.
“I read your review of Kristyna's gig and it was excellent”.
(Me thinking – you what??? How did you find it???)
A few days later the Kristyna in question told me herself that she liked the review as well.
I am not sure how I manage use words to convey feelings, atmosphere, and meanings in what I write. I just switch on my laptop and type the first thing which comes into my brain.
Come to think of it – that is not exactly true. I can credit some wonderful people with helping me learn how to write the way I do. Or – more to the point – helping me to learn how to feel comfortable with the way I write.
If you have spoken to me in person you will know that I write as I speak. A couple of you have actually scared me slightly by saying you can actually hear me speaking the blog posts as you read them - and I thought I was the one with the vivid imagination??? All I can say is – it is a good job you cannot (as far as I am aware) read my thoughts as I type my ramblings sometimes as you might learn some very “interesting” Dutch. As in swearwords.
If you have read this blog before you will know about my health issues – sometimes I may not have the mental energy to blog (even though my brain keeps throwing ideas out all the time). So if you find big time gaps between blog posts that is probably why. (You never know – one of these days I might work out how to work it so I can blog from my mobile phone. I wouldn't hold my breath if I were you though – you may find yourself in need of an ambulance or a funeral director if you do.)
Speaking of my health – thank you for your kind wishes, offers of help, etc. They are very much appreciated.
Trust me – there are occasions when I feel like stopping the blog and the Social Media, crawling into a corner and giving up. Hearing unexpected humans saying they enjoy my blog and the rest of my ramblings elsewhere is what keeps me going – both writing-wise and living-wise.
I think I have rambled at you for long enough – and I am in danger of getting soppy as well (this is not a good idea) – so I will close with how I always finish my personal emails;
Have a BIG HUG
|Every so often I end up reading books and blog posts on subjects which – to most of the general population – are not remotely connected and I can still come up with a connection between them which is not necessarily apparent.|
A recent case in point is my recent reading material – a book on Policing by John Sutherland, a book on Geography by Tim Marshall, and a blog on Mental Health law by Michael Brown.
On the face of the list above you might not see much of a connection. When I tell you that “Blue” (the book written by John Sutherland) and “Mental Health Cop” (the blog written by Michael Brown) are both written by serving Police Officers, you might start seeing a connection. If I tell you that the above-mentioned book and blog both touch on Policing and Mental Health (from very different angles) you might see more of a connection.
But what has a book about Geography got in common with both of them??? Well, the title of Tim Marshall's book “Prisoners of Geography: Ten Maps That Tell You Everything You Need To Know About Global Politics” does mention both Prisoners and Politics. So that might be the connection???
Sorry – it is a connection but not the one I immediately found. I suppose you would have to (a) read Tim Marshall's book, and/or (b) learn how to think sideways. (You have certainly come to the right blog for lessons in option (b), haven't you?).
The word that jumped out at me from the title of Tim Marshall's book wasn't “Prisoners” or “Politics” but “Maps”.
Not only do maps show you routes from A to B but the really good ones show you all the obstacles you may face (if you want to know a very interesting fact about India and China and why they have never invaded each other – read “Prisoners of Geography”).
John Sutherland's book reads like a map of his career in Policing (and his battle with Mental Health difficulties), Michael Brown's blog reads like an attempt at explaining the “maps” involved in deciding what course of action should be taken by which group of people when it comes to suspects with suspected Mental Health issues (as well as those dealing with such people).
Not only can maps be useful but they can also become a hindrance if you don't know how to read one, you start off heading in the wrong direction, or you follow the map as rigidly as some people follow their SatNav.
I think I might know what is going through your mind now. But Inky – laws are there to be followed and you will end up in serious trouble if you don't obey them.
That is true – in more ways than one. However, there are also laws that contain so many loopholes they are not much use anyway. Also, there are situations which are not actually covered by laws (usually because nobody has dreamt up a law to cover a situation which has never arisen before).
Here is a thought – what would happen if we made maps of people instead of geographical occurrences??? As in – what would happen if we made maps of people's abilities, needs, desires, etc???
I know I am in danger of straying into territory best suited to humans with some kind of qualification in Psychology, Psychiatry, or General Medicine here (and anybody with those qualifications can feel free to argue with what I am about to say next) but I have been thinking about this quite a bit - even before my current escapade started.
People seem to have some wonderful ideas about me (and I am not exactly using “wonderful” in its usual happy sense). They either seem to try to put barriers around me or they are amazed when I seem to act like everybody else. “Oh – poor Ineke. She won't be able to do such and such.”. Guess what guys – if there is something that Ineke really wants to do she will find a way of getting it done by any means within her power. She has been known to do nearly everything you can. Admittedly she has paid the price for it afterwards sometimes but – trust me – it was worth it. There are certain things which cost me a little more in mental and physical energy than most people (going to a cinema, going to strange places at night, etc) but even having to psyche myself up beforehand doesn't usually stop me if I really want to do it.
On the flip side of that we get the line I am getting nauseated and fatigued by when well-meaning humans say it - “You are so brave”. Trust me – this has been uttered in my direction more times that I can remember. Admittedly, some of the occasions when it was used were ones when I actually felt like I had achieved a goal by doing whatever it was which prompted the comment. Others (like me going on a train to Glasgow by myself) were not what I would call appropriate instances.
My personal background means that I am used to having to “Keep Calm And Carry On” when I don't want to. It also means that it is second nature to pick myself up and dust myself off when I run into difficulties (and it also makes me very uncomfortable with the idea of asking for help or making a fuss when I find myself unable to do either of those for whatever reason).
There is something strange which I have noticed about myself recently. I get more energy when I am allowed to be myself. There are certain humans who I love spending time with for that exact reason – I can say what I want and do what I want in their presence and they don't make me feel like an Alien. Feeling like I am being boxed in and I have to watch what I say and do just upsets me. I may appear to be the loudest, most blunt human you have ever come across or I may appear to be the one who is the most comfortable when merged with the local scenery – they are both me. In my “natural” state I am actually very quiet and prefer either my own company or just being with a very small group of humans who I trust.
I want to finish with something which amused me on Twitter. One of the Twittercops I follow decided to do a survey about whether or not people should stereotype others. As I said in my Direct Message to the Twittercop - “Good grief – anybody who tries to put me in a stereotype box soon finds out I am unique”.
|I won't usually namecheck anybody on here unless I have their explicit permission. However, I hope the individual concerned forgives me (even though they hate publicity) because I honestly admire their bravery – apart from that what I am going to talk about is in the public domain anyway.|
On Saturday I had a couple of very interesting conversations (as well as a go in a “Cross-Country” wheelchair).
Don't worry – the conversations and the wheelchair were all connected (and not just because the two humans and the wheelchair were in the same place at the same time).
One of the conversations was with my very good friend John Coster. He and I were talking about health (mine) as well as sight problems – he thought that I might be able to help someone else who is blind.
The other conversation was with an amazing – yet publicity-shy – man who I love talking to when I see him. David Needham has got Motor Neuron Disease and is in a wheelchair. In fact – David was really the reason I was in the same place as him, John, and the “Cross-Country” Wheelchair.
Well – I call it a “Cross-Country” wheelchair but that is not what David is planning on using it for (it just looks like one with its BMX-type tyres and its levers) – that would be far too easy.
David is planning on using it to raise money for MND (a charity which focuses on Motor Neuron Disease) – by completing the Three Peaks Challenge. This sounds challenging enough when you can walk and climb but I can't imagine what it would be like in a wheelchair.
I know I can sound a bit like a broken record when it comes to the subject of how people with disabilities are perceived by the rest of the population but I honestly think that David's courage and determination go some way to prove that – just because you are disabled and you may not be able to do things in the same way as everybody else – with a little thought you can achieve the same things as them. It might take you a lot longer and you might have to find some ingenious ways around the challenges and obstacles presented by your disability but – trust me – it can be done.
|It feels like a long time since I have written any blog posts on here (and I do apologise for my silence).|
What can I say??? This being properly poorly escapade is really taking some getting used to. This is probably because – although I have official documentation on NHS letterheads that state I am seriously ill (to the point of it being not exactly life-extending) - most of the time I don't actually feel as though there is anything wrong with me.
OK – so I seriously considered calling an ambulance yesterday because I honestly thought I was running out of air. A clue – if I know you and I say “I am alive – put it that way” (and I am not smiling or laughing when I say it) when you ask me how I am I suggest you start worrying about me and not (as one of my friends did when I was seriously on the verge of calling an ambulance) laugh and say “you do make me laugh sometimes”.
So – where are we now???
I have had two appointments with the Oncologist and two appointments with the Heart Failure Nurse. Oh – and an Ultrasound Guided Biopsy.
The Oncologist is a nice lady (so is her Registrar). I am on Tamoxifen for the foreseeable future (the next couple of months at least). So I managed to dodge the Chemotherapy for the time being.
The first time I saw her the Oncologist did ask me a strange question which – to be honest – scared the living daylights out of me. “Has anybody told you you have got Marfan's Syndrome?”. Apparently I have got a few markers for it – one being my height (since when was being half-Dutch a symptom of a Syndrome???), one being slightly more flexible than most people, the last one being having a high palate (the top bit of your mouth). After “never heard of it” passed through my mind the next thought was “Good grief – not another thing I am going to die of???”.
Oh yes – the Oncologist wanted me to see a Cardiologist so they could advise on the best treatment for me. I am now in possession of a copy of the letter she sent to the Cardiologist in question (dated on the day of my first Oncology appointment). After seeing the first name of the Cardiologist I don't hold out much hope of a quick appointment – I have experience of “Medical” humans who answer to that first name (not as a patient though) and they seem to operate in a timezone oll of their own.
My next viewing of the Oncology Department will be in approximately three months (am waiting for the confirmation letter to come through).
The real downer is the Heart Failure thing. Although I did get a bit of a smile out of Friday's appointment (thanks to my very weird sense of humour).
Apparently the Heart Failure Nurse now thinks I may be a “Cause for Concern” (not as much as I think her scales are – but more about that in a bit). I have been either upgraded or downgraded (depending on how you look at it) from “I would like you to see a Cardiologist” at the first appointment to “I want you to see a Cardiologist at the second appointment.
If you read the blog post about my time in hospital you will know that the Nurses were worried about my blood pressure even then (it is lower than normal).
When you feel like you have done a circuit of Hinckley town centre on foot trying to find the hospital (thanks to Google Maps telling me to get off at the wrong bus stop) – you would expect your pulse and blood pressure to be raised due to the exercise??? Oh no – not mine. Apparently they were both lower than they had been the first time I saw her. Hence the upgrade (or downgrade) – and an ECG “just to make sure your heart isn't going to go into a strange rhythm".
Remember I something about me getting a smile out of the appointment due to my weird sense of humour??? Well, it was connected with a set of scales – a slightly less than accurate set of scales to be exact.
As a result of this flipping Heart Failure I have to weigh myself daily. If I gain or lose 2kg (or 4lb) in two days I have to either contact my GP or the Heart Failure Nurse because it might indicate a fluid imbalance. Fair enough – I weigh myself every day and (even though I wish I could gain a few kilos) I am now between limits.
On Friday the Heart Failure Nurse told me to step on her scales. Now – I know my sight is not all that good (and her scales were the old fashioned analogue ones) but even I could tell you that there was something wrong with them. Either that or I had managed to lose 4kg in the space of 6 hours (in which case I would definitely expect to be back in hospital). Luckily she admitted the scales were dodgy.
Now the only major concern (as far as I am concerned) is the argument between the Oncologist and my GP regarding some overdue medication which I am supposed to have monthly. I am not going to go into the story but – what I will say is that I am now worried that it may have an adverse impact on one of my other medicines if it doesn't appear soon.
Well – now you know as much as I do.