Tag Archive for independence

Muse-ing over a few things.

This weekend was set to be AMAZING. When you have tickets to see the group Muse live you know it will be a show, unlike any other gig.

Following on from seeing them at the O2 in London back in April 2016 where they put together a pure theatre experience; … expectations for this tour were high.

This time it was hosted at London Stadium, home to the 2012 Olympics’ and a venue I have previously been to when I saw Guns’N’Roses in 2017. A very different venue from the O2, being that it is partly open air is probably the biggest challenge.

And that is just what the band had to deal with.

For me, knowing my sight and hearing were so much more progressive and had greater deteriorated from 2016 I was a little nervous to say the least.

Then came the biggest challenge ….. Weather reports set to see London temperatures reach in excess of 22 degrees for the weekend. In the city, 22 degrees feels more like 27-29 degrees and meant just one thing … Fizz my guiding girl; who loves London so much wouldn’t actually be coming.

This was what was best for her and as I was trailing and staying with a good friend who knew my issues I wasn’t overly concerned about spending a weekend with my (not so faithful or intelligent) cane. On the plus side, this meant that I could take full advantage of all the escalators on the tube network and within Stratford’s Westfields shopping centre.

Although in a funny twist this meant that I actually got lost at London Waterloo for the Jubilee line as I wasn’t sure which set of escalators it was! But once that was sorted, I made my friend laugh at my ‘childish giggle’ of being able to use the escalators…. She also got to watch first hand how people paid very little attention to my cane and often found themselves jumping out of my way.

The weather was hotter than expected, so I know that I made the right decision leaving Fizz home….. Even though I discovered that our seating within the stadium would have afforded her plenty of room to lay by my feet.

This time on visiting the stadium we took advantage of the accessible shuttle bus that ran from the end of The Jubilee Line station directly to Bridge Three at the stadium. That just so happened to be quite close to our actual seats.

This tour was called ‘Simulation Theory’ so I knew it would follow the similar robotic theme of the videos that had been released with the album, the colours were set with a mix of blues and pinks and the slight ‘stranger things’ theme that Muse had insinuated upon would all be included.

Our seats were to the right hand side of the stage, the stage this time was at the far end of the stadium, not in the middle as it had been with ‘Drones’.

But my friend that was with me said we had a good unrestricted view of the whole stage (or rather she did because with my sight I could only just about make out the large screen)

The support acts were good, but visually very minimal as I can only assume that was because it was being saved for the main event……

When Muse came on the natural light was beginning to fade and the screens were being used fully.

I took photos and even the odd video of my favourite songs. However, I left the gig feeling totally under-whelmed.

We met up with other friends who had been there too. They were sat further away, but directly face on to the stage. As it would happen, one of the party was actually my friend that had attended the 2016 Drones tour with me. He was in absolute awe of the gig, saying that they did not disappoint and they even improved upon the showmanship of the previous show. So I realised then I had clearly missed something….

Then the NME review came out …..

And I realised that I had missed the most magical parts of the show, which left me feeling quite upset and frustrated with myself because this seemed to mean that my time of enjoying ‘a show’ for more than the music was over.

I watched the videos that I took, and was able to zoom in on the visuals that I had missed. Although this wasn’t quite the same….. I am still undecided as to how I am feeling by all of this.

Maybe I need to see among my friends if any of them took videos that I can watch?

Maybe Muse will release a film of Simulation Theory as they did with Drones? But then, that may be another 2 years to wait.

Isolation

This is likely to be one of those posts that will be void of humour, but one I feel I wish to share with you. I have eluded to it in the past, but never been so upfront; however now I feel it is important to share.

As someone who is called ‘inspirational’ and ‘stubborn’ and wildly independent I am not the sort of person people would think could face isolation.

But I am.

Maybe it is because I am fiercely independent. Maybe it is because others see me as strong. And yes; I am both of these things, I am also many other things too.

Isolation doesn’t mean someone is alone. It doesn’t mean someone isn’t surrounded by others.

To me; isolation is what it is to be in my own mind because of my sight and hearing loss; and in a way because of how these affect my mental health.

Sight loss is such a complex condition and so very individual that you will rarely find anyone who experiences it in the same way. This also makes it tricky to explain to those who are sighted.

And for me, isolation is only something that I feel will increase as my disability changes. This in itself is a very fearful time for me as I learn to adjust to this and put in place coping strategies to minimise the impact to myself and those close to me.

I find myself thinking of how with my sight and hearing loss I will also loose my independence, the very same independence that I fight so hard to keep, for as long as I can.

However loosing my independence feels as if I would loose myself. The life I have built, the relationships I have created.

And that in itself is isolating !

I already hold certain limitations in my life because of my sight. Having never been able to drive I have always felt limited by not having the freedom to just get in a car to take myself to the beach…. If I wish to go to the beach I either have to wait for a friend to take me or go at a time when I can get there myself on public transport.

However the thought of more limitations being placed on me, as my independence dwindles is what fills me with this feeling of isolation.

I have thought and rethought (I have even over-thought) this post. However I needed to write it as much for myself than for anyone who is reading this.

Although maybe, just maybe one of you reading this will find it helpful to you too.

Myth Bust: Blind Girls (and guys) Can Wear Contact Lenses

Just as someone who is severely sight impaired (blind) can and does often wear glasses; they are also able to (sometimes) wear contact lenses.

And why ?

For the same reason anyone else would wear contact lenses…. And for me, wearing contact lenses enables me to wear non-prescription sunglasses; among other reasons. (Vanity induced)

Until I wrote this post, it is part of me that very few know about.

Having had hard contact lenses when my sight was much more complicated as a teenager I did not get on with them.

Yet now with my simpler prescription I have been introduced to the world of soft monthly disposable lenses and for the past month or so I have been trialling them and find them so comfortable and easy to use and wear.

I thought I would write this post because earlier this week I was asked to ‘prove’ that I wore them. (By someone of authority-not just a random stranger)

This found me standing in the middle of a very busy London area, cleaning my hands, then moving and removing one of my lenses.

Which was followed by apologies and a long conversation about assumptions !! (And me getting a little bit told off for being ‘sarcastic’ )

My visual field is now at less than 3% and even with the best lenses I still can’t make out the top line of the eye chart, yet I still wish to make the most of my remaining vision and as I have found the days getting brighter (another part of my sight issue) I find contact lenses with wrap around (non-prescription) sunglasses help me with this.

I guess the point I am trying to make here is that it is the assumptions of others and people’s need for ‘proof’ of disability that needs to change; which is only going to happen by people asking questions (something most adults aren’t good at) and by people having conversations.

Those who know me, know I will happily have these conversations over and over again…. But I am just one person.

Myth Bust: This blind girl CAN shop!

Today I had a very rough encounter with a shop assistant. A very quizzical, judgemental encounter….. But rather than be negative, this got me thinking; unless you have a visual impairment or live within close proximity to someone who does, this may be a common misconception that anyone of my readers may also hold.

So here in a series of blogs I am going to look at busting some myths and misconceptions. Now as my blog is all about me (selfish I know!) what I write here works for me and is my point of view. Sight loss has a MAHOOSIVE variant in the many that it affects, so what works for me may not work for another. After all VIs (Visually Impaired) are unique Human beings with their own individual characteristics.

I personally love to shop! Muse through rails of clothes, feeling the different texture. I find some shops easier than others, I also have my staple ‘go to’ shops for my essentials.

When I trained with my guide dog (both of them) it was explained to me about how a dog works in certain environments. How a dog works in a supermarket for example is different to how they work in a clothes shop. And most of this is down to how we as humans move around in said shops.

Mostly because of how the shops themselves lay out their stock. A supermarket is quite regimented, with aisles and shelving. Where as clothes shops work with rails, displays and a more ‘hap-hazard’ movable approach.

So, when in a clothes shop I do not ‘work’ my guide dog Fizz. By this I mean I do not hold her harness handle and ask her to guide me around….. Manly because we wouldn’t get past the first row of clothes as the space between rails isn’t wide enough for Fizz to work properly!

So once inside a clothes store I will simply hold her lead, I will keep her on my left hand side and I will use my right hand to feel my way around the store, feeling out mostly for the ends of rails that could cause me issues if I bump them.

The stores I frequent regularly are used to me and Fizz, they even know that at times she will just lay down if I am spending too long looking at a section! After all she is a dog; she has no need or interest in clothes!

But when we go into a different shop (which doesn’t happen often) the other shoppers (as today) and the staff appear amazed by it.

Today’s encounter saw me being asked to leave. And this was because the store assistant believed that I was not VI and that my guide dog was just a pet. (Despite her harness and all her ‘uniform’ stating she is just that)

The store assistant had watched me move around, touching the clothes, but that my dog was just walking behind me. I did explain the main reason for this was because the space between the clothes was only just big enough for me to walk in, let alone Fizz to walk beside me.

I explained how I am trained with Fizz and how dropping harness means she doesn’t have to be responsible for trying to navigate in such an unnavigable space. To which the store assistant became very interested and was then asking questions out of interest not judgement.

Another point to make is that clothes shopping isn’t a rushed affair (not for me anyway) So I take my time, I can focus using what little sight I have left on navigating my way around. It’s not ideal and at times it doesn’t always work. But it is making the best of the situation.

For me, I prefer to shop alone for clothes, not be rushed or concerned with someone else getting bored or fed up with me. So this is how I work around it. It’s a quirk and it is following my guide dog training; which means I can’t be the only person who does this.

After all VIs shop, VIs go out alone and VIs above all else, have their own minds.

Personally I would not consider going clothes shopping using my long cane. As most clothes are hung on rails a cane could alert me to the floor being clear, but won’t alert me to the tops hanging from a rail (if the lighting isn’t right for me to see) And for this reason I do understand why some VIs prefer to shop with others.

So, I hope you have enjoyed this Mythe bust? Feel free to comment below on this subject or other myths you may have questions about.

Just over there

‘Over there’ is a world of myths and legends, often where ‘that way’ can be found. (Or so I am told)

It’s a place where as someone with a visual impairment upon asking for the location of something I have been directed to MANY times.

“It is a place I have never found !!”

Usually such explanation to a location comes with a wave of a hand or arm, but rarely any eye contact from the person giving the instruction.

Don’t get me wrong, there are times when such directions do come with eye contact, but due to other people or a counter my guide dog is often obscured.

I am more than happy to press the matter and ask for more detailed direction. And thankfully on most occasions it has been easily obtained.

But it reminds me of how we can all become so familiar with our environments that we forget that someone new (with or without sight-loss) may not find it so easy to navigate.

I know people get flustered giving directions; do they give it from their point of view or the person asking?

If it is a shop or business and you are the employee being asked for directions the easiest way to direct someone is to walk them there.

Asking if the person would like to take your arm, explaining to them when you are turning left or right and most importantly when you are walking through a doorway, even if the door is open.

I am thankful that Fizz will fall in behind someone guiding us and simply ‘follow’ but for me I like to have the verbal directions as it means that should the need arise I can find my own way if there is a next time.

Having previously gone up. Now it’s time to go down!

With my faithful-guide dog Fizz by my side (and guide-gal Vicky before her) I am able to travel to and around London with ease, the London Underground network is vast and with audio announcements and fantastic friendly staff (TfL) along with the odd app or 3 I have found I can stay largely independent in a network that often confuses those without additional needs.

I was first made aware of ‘The Tube Challenge’ in September 2018.  The challenge is to visit all 270 stations on the London Underground Tube network (not including dlr or overground) in the fastest time possible.

The current Guinness world record is held by Andi James, who completes the challenge in the fasted recorded time of 15 hours 45 minutes 38 seconds.

So when I asked if the challenge could be done with a disability, he took it onboard and now we are here.

On Friday 11th January 2019, along with Andi James as my sighted guide I will be aiming to complete The Tube Challenge.

Given the nature of the challenge, the endurance aspect and the travel, the public and the timings.  This is one day of tube travel where I will not have my guide dog with me.  Fizz will be enjoying the rest with her paws up, while I achieve my goal.

This in itself adds additional elements to completing the challenge with my cane and sighted guide.

We shall be starting early on the Friday morning, traveling through rush hour, navigating the tube network, swapping between lines that will see us travel above ground in addition to under it, traveling around some of the networks busiest station, heading through evening rush hour and the weekend get-away to achieve this.  All parts of which will hold its own challenges.

The gauntlet has been laid down, the planning has begun.  And now is where I ask for your support.

In addition to achieving this I wish to raise awareness of the freedom my guide dogs have given me.  It is in memory of my first guide dog Vicky that I wish to do this.  She sadly passed over the rainbow bridge on 2nd January 2018; having hung up her harness on 19th January 2015 when Fizz stepped into her paws.

And in raising awareness, I wish to raise money to name a guide dog puppy, a name that will mark the occasion.  A few names have been put forward once they are agreed I shall update this page accordingly.

Please can I ask you to dig deep, show your support.  Just-Giving-TinkOBell270

A different sport, but just as much of a challenge

This year has been fairly quiet for my climbing.  However I have not been doing nothing with my time.  I have in fact been in training.

Training for a different kind of challenge.  This challenge is to run.  Something I have not done since completing The GSR five years ago.

The reason I haven’t run for so long is that I discovered just after I started to notice my hearing loss that when running at the gym I suffered with motion sickness.

But I have (in secret) been completing my own variation of ‘couch to 5k’  I have even been taking off my Apple Watch as to not alert my friends who I share my activity with aware of my training.

My training has been on a set flat path at the far side of a local leisure centre parkland.

I have not quite manaeged a full 5k to date, but I have discovered that on a flat concrete path I do not suffer with the motion sickness I had suffered on each occasion (I tried several times at different times etc) of a treadmill run.

So, why am I letting you all know my secret?

Well, this Sunday I am attending a race.  A flat course where I will have a guide runner and my children.

This Sunday we will undertake The Poppy Run.

This run is organised to raise money for The Royal British Legion.

Those who have followed me for some time will know how much I love the poppy.  I love what it represents and I am forever grateful to those who have stood up protected our country.

So, along with my children, my guide dog Fizz (who isn’t running in harness, rather joining the other dogs who are welcome to join in the days events) and my friend and guide runner Vicky on Sunday 4th November at 11am we shall stand in silence for 2 minutes before setting off on the 5km course around Southampton Common.

I am doing this for other reasons.

4th November 2018 marks 10 years since I received the news that I would loose all sight and was registered severely sight impaired (blind)

This day is one I wish to celebrate and what better way could I do that then support a fantastic charity and face a personal challenge?

Well, maybe it’s because the girl in me enjoys a bit of bling and I can’t wait to complete the run to receive my poppy medal.

So, dear readers I ask for your support.  As I am sure you are aware this year marks 100 years since the end of the First World War, a war where so many have their lives to enable us to keep our future.

As a family with multiple different surnames we have set up our just giving page as ‘Madhouse Family Poppy Run’  We would love to smash our £100 target.

To donate please click here

The 1st of the withouts

Yesterday marked the beginning of it.

Today compounded it even more.

What am I talking about?

I am talking about events and celbratitions about my first leading lady, the ‘original guiding girl’ Vicky.

On 15th October 2009 I met her for the very first time, she came with my GDMI Caroline to see if she could be the dog for me.  And it wasn’t known to me at the time, but today 16th October is her birthday; or rather WAS her birthday.

And as such today is the first time since she came into my life that she hasn’t been with me to celebrate this day.

Good Olde Facebook has reminded me of today with lots of photographs and happy memories.

And it is some of those I feel I would share with you in this post.

Vicky gave me so much and it is about remembering her today; not being sad that she is no longer here, rather be grateful that she came into my life.  Photgraph shows black flat tie x lab dog sat with a grey hat and scalf in front of a red sofa

Photograph shows Guide dog Vicky sat in harness in the lounge in front of the sofa, she is wearing a smile on her face.

 

Gosh, four years since The Gherkin

Photograph of The Gherkin building behind a church with the side of The Cheesegraer on the very left of the photo

Its hard to believe that Monday this week marked four years since I took on my first challenge….. The challenge to climb The Gherkin.

A challenge that took a twist when my CPiC and I decided rather than to climb the height between us, we would climb the height each.

All 180m.

For me, ‘The Gherkin’ was to prove (mostly to myself) that I could undertake that level of endurance.  For Simon it was a slightly different challenge; for him it was about climbing blindfolded.

A challenge that together, we improved upon in May 2017 when we chose another iconic and interestingly nicknamed building of London’s skyline when we set about the challenge of scaling all 225m of ‘The Cheesegrater.

So….. 180m up a gherkin, 224m up a cheesegrater.

What number could possibly come next?

Can you keep a secret?

What if I told you the number involved was 270?

What would your thoughts be?

I can also tell you that the next challenge WON’T be a climb.  However, it will very much involve LONDON.

 

Discovering just how independent I can be

This post is probably the wrong way around.  But for me it seems only right that I write this bit first……

Today I am heading home after an amazing week away with my Guiding Girl Fizz.

Today I am realising that although this journey wasn’t the one I had originally planned for, it was the journey I needed to take.

And as much as I almost found myself not taking it …. I am grateful to my own stubborn nature and my ability to plan and organise.

And the fact that I would always have wondered ‘what if?’ Had I not at least tried.

So, try I did and I am so very grateful that I did.

 

…… TO BE CONTINUED

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