Tag Archive for Disability

Convenience or Necessity

This is one of those posts that I can’t use my usual humour and sarcasm….. Although I will try!

There has been lots in the news of late about the dangers of ‘single use plastics’, straws and in turn packaged, prepared vegetables and fruits.

But what are often marketed to those with disposable income and little time are also an expense for someone for whom cutting up a whole cauliflower or pineapple could be problematic or energy consuming, when energy wasn’t a luxury, rather a commodity to be saved for ‘essentials’

For me, there are times when buying these ‘prepared’ easy options are the difference between me being able to eat fresh and healthy food, rather than relying on ‘ready meals’ or jars of sauces. (Not that there is anything wrong with either of these; but I prefer making my own dinner)

My freezer always includes a bag of chopped red onions, my fresh food shop also often includes pre-cut fresh pineapple or melon.

Because chopping these myself would actually mean I would just go without!

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.

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.

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

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

Hybrids are great … BUT

…. When your visually impaired even good hearing wouldn’t have helped.

This beautifully hot summer that is killing the grass and creating havoc with everyone’s sleep is also creating issues for us guide dog owners, I am seeing friends arrive at work for 6am and getting taxis home as they must have their dogs with them.  I have been taking Fizz out early morning or late evening.

But I still have things to do.  Appointments to attend and meetings to sit in on.

Today was one such day.

Today’s meeting was at 10am, by which time temperature was already mid-twenties, knowing that I would be travelling home again by lunch.  Fizz was left with daytime tv and a cool house (all my curtains were drawn-the neighbours must thing I am sleeping all day!)

Anyway.  With my faithful hound limited to her work, I too have been limited to how much I have been walking also ….. And it’s starting to annoy me!

So today on my way home after my meeting I decided to get off the bus earlier and walk the 25 minutes home (instead of getting a second bus)

Using my cane I am walking slower, taking more time crossing the road and ‘scanning’ my route more; which is creating eye strain issues as-well.

All was going well, I was even managing to navigate the bins left precariously after the bin-men had done their rounds.

Then before I knew what had happened I felt a sharp pain in my left thigh & hip.  The moments that followed are a bit blurred and also a time that seemed to last for too long.

I must add that I am ok.  I am after all writing my blog about this.

But today I was hit by a car.

It was low speed, the car was reversing off a driveway and as the title suggests….. it was a hybrid so at such low speed wasn’t omitting any sound.

The man driving the car was quickly by my side as I found myself falling down.  I suffered bad bruising and scratches to both my thighs (one from the car, the other from the pavement) and some soreness in my hand where I put it out to push against the car.

No lasting damage and thankfully no damage to my cane or the contents of my bag (which included my iPad) from being on the side of the impact.

Bruises will fade, grazes will heal and for now I won’t be wearing any short shorts! (Although my leg looks pretty colourful!)

But for me, my confidence has been knocked.

This evening as I headed out for another meeting I found myself fearful walking past houses with driveways.  I stopped at each and every one as if it were a road crossing.

I found myself doubting my ability to do this.

I found myself wanting to turn around and go back home….. But I didn’t.  I got the bus into town and sat in the sun with a cold glass of water, pottered about getting some shopping and found myself writing this.

Hybrid cars do have their place and I am very pro them.

However the law in the EU about them having a ‘white noise’ added doesn’t take affect on new built cars until July 2019 and retrospectively added to older models until 2021.  As detailed in many newspaper articles earlier this year.  Such as this one I have included below:

Daily Mail Article May 2018

 

When my disability felt disabling

This weekend I had a real wobble; anxiety, panic, fear and upset all rolled into one.  This weekend didn’t start off very well.

There are times when people say how inspirational or how positive I am, well this weekend I wasn’t any of these things.  In fact I felt like I was being penalised because of my sight and hearing issues. And I just wanted to leave where I was, give up on my plans for the weekend and walk away from it all.

Thankfully I was surrounded by some great friends; who didn’t allow the negativity to get to me, who stepped up and even stepped in to support me and change things around….. And for this I have gratitude.  Because what started out pretty shitty ended up being pretty AMAZING.

This weekend I attended a MAHOOSIVE Herbalife training event called ‘Summer Spectacular’  This training consisted of two days of training, stories and information from not only some of the best in the UK part of Herbalife, but also some of the best from America, France and South Africa.  Men and woman within the business that were not within my immediate reach.

So my ticket for the event was bought, childcare sorted, transport and sleeping arrangements sorted.  I had the support of my amazing team so I knew that both me and Fizz would be ok.

The training was at a venue I hadn’t been to before, but that was ok because an hour or so on google and I had found enough images of the venue to feel that I had a good enough virtual awareness of it to get through.  There was even a Starbucks on site, what more could I ask for?

The venue; The International Conference Centre (ICC) in Birmingham was also only a short ten minute walk from the apartment we were staying in AND there were plenty of grass areas between the two for me to know that Fizz’s needs were catered for also.

Saturday morning came and while my team mates were taking part in a very large ‘Fitclub’  I was able to grab a coffee, get my bearings and feel prepared for the next few days.

We came to entering the training room and a member of staff quickly found me (having the only dog in the building will get you noticed!!)

My team mates explained (because it was too loud for me to hold a conversation) that I would need to be seated near the front with space for both me and Fizz, but not in a direct walk-way as this could put Fizz and others in danger (black dog in a dark venue is a real trip hazard)

So, the staff guided me down the steps of the auditorium and sat me at the front, but with space the side where Fizz would be able to lay out.  Brilliant, a seat was allocated for my team mate too and I thought all was ok.  That was until the music started.  It was not that it was LOUD.  It was the fact that it was coming from a large speaker right beside where Fizz was to be able to rest…. let’s just say, she would have probably been more likely to burst an ear drum than relax.

No trouble I thought my friend and companion  Jenny got the attention of the staff, asked for us to be moved and off we went.

The next seating we were offered would see Fizz sat directly beside the auditorium steps (a major trip hazard)  but as the seating within the venue was fixed in place the staff were a little perplexed.

Another member of staff was called upon and it was decided that a couple of chairs could be brought in from outside and placed by the door……

“Um sorry I am not sitting right beside the door, where people will be coming and going throughout the day, that’s hardly relaxing for Fizz or suitable for me.”

So the chairs were moved and we were seated beside the camera mans tripod.  But that was ok; at this time the meeting was starting and I just wanted to sit down.

So me and Jenny moved the chairs across slightly giving Fizz the space to lay down.  But by this point not only was I feeling anxious and upset, I was also feeling that because our seating was so different to everyone else that I was on show, a bit of a ‘look at our token blind guest’  and this was what ALMOST saw me walk out.

I messaged my teammate and cousin Charlie with a very frank, honest, choice set of words and we simply replied

”Stay put I will sort this”

Charlie is a rock.  Jenny got me a drink and Fizz nudged at me as if to say ‘it’s ok mum’

Charlie sent me a message a few moments later that simply said “it’s sorted” so I sat, listened to the speakers and awaited the break.

At the break we stepped outside and were greeted by the events coordinator who moved me away from the crowds (these events have upwards of 2000 people attend) and explained that there was a larger room just opposite that had the lights up, had tables, plenty of space and a large screen that was streaming the main event directly into the room.

Well considering at similar events I can only just watch the stage via the screens and never actually see the people as they stand on the stage, this sounded like a good solution.

So into the room we went, table found, cool air con and really good lighting and I felt both me and Fizz relax.  Jenny came with me and she instantly agreed that this was a great alternative and would make it easier for her too to write notes and move about. (The room was a large conference hall, with about two dozen large circular tables.

Fizz was aware that I was more relaxed and as such, she was more relaxed.  And thankfully the rest of the day was much calmer.

The events staff came back to find us to discuss the evening dinner and party.  It would be held in the very room we were sitting in, but dressed to celebrate.  There were set to be food stations, where festival themed food would be available.  The event team asked me to just come also for and try to see if I could cope.

Again they made arrangements for me, Fizz and the a guest of my choice to enter the room before it was opened up to everyone.  To enable me to come in while the lights were up to navigate the room.

Fastforward to the evening ……

I entered the room early with Fizz and Jenny, we found a table to sit at and I was able to familiarise myself with the room layout.  The food stations would be far to tempting and distracting for Fizz, so Jenny agreed to support me by collecting food for me.

Entering the room early may not sound like much; but actually it made all the differenxe to enabling me to enjoy the evening.

I felt relaxed; I felt much more relaxed than I have at any other party event I have attended with Herbalife.

I even got up and danced for a bit and found myself mingling through (with a Jenny’s help) to catch up with other friends and colleagues.

Sundays Training was so much simpler.

We went straight into the ‘break out room’ and we actually found a good few more people sat here.  News of the air conditioning had spread through to the auditorium and even some of our own team joined us.

I don’t feel that I missed out by sitting in the other room.  I did however gain so much.  I would highly recommend that such ‘accessible’ seating was available ….. And as such and email has gone off to the company to ensure more support is available.

After all, o can’t be the only person within Herbalife that has a disability or anxieties about large numbers of people?

 

The day I brought my cane

“Stepping through the door like a troubadour
Whiling just an hour away
Looking at the trees on the roadside
Feeling it’s a holiday
You and I should ride the coast
And wind up in our favourite coats just miles away
Roll a number, write another song
Like Jimmy heard the day he caught the train.”
On this beautiful sunny summers day I couldn’t resist the play on words!
But with this beautiful weather and scorching temperatures come one very sad moment.  And that is that for me to go out during the peak part of the day, my faithful hound Fizz must stay behind.
It isn’t because she is a black dog, it is simply just because she is a dog. And as such can only reduce her body temperature through panting.  She would also be walking bare foot on pavements that have been heated by the sun, which could cause blisters on her paws.
So for me, it is back to my (not so faithful) long cane.  With its red and white strips it was recently likened to a barbershop candy striped cane!!
As a guide dog owner it is important to keep up my cane skills for very such occasions……. But it doesn’t mean that I enjoy this time at all; not one little bit.
Bright sunshine, blue skies and long canes (for me) do not mix well.  I find myself scanning with my residual sight, apologising to shadows and generally find myself more exhausted by the whole experience.
I can’t however cancel all plans and stay home.  I am however limited to how far I can go as Fizz is home I need to ensure I don’t leave her alone too long either.
It is a balancing act and in one way I am grateful that I can still keep my essential independence because of my long cane skills, but in another way I will be much happier when the weather cools a little.

My 10 ‘MUST HAVES’

Everyone has their own ‘must haves’ or ‘can’t live without’ items.  And maybe mine aren’t that dissimilar, I have very little specialised kit to cope day-to-day.

In no particular order, here are my 10 MUST HAVES:

  1. One Touch Kettle
  2. iPhone
  3. Apple Watch
  4. Compact Dome magnifier
  5. Wrap-Around Polarised Sun Glasses
  6. Power pack
  7. Amplicomms Amplified Bluetooth Neck-loop
  8. Notepad/Pen
  9. Book
  10. Dog Bowl

ONE:  One Touch Kettle:  I like most can’t start my day without a cuppa.  My cuppa of choice is Herbalife Thermogenic Peach Tea; and although there are fantastic gadgets like liquid level indicators and tipping support for enabling VIs to pour a normal kettle, my kettle isn’t a specialist bit of kit.  It is simply a water saving, energy efficient way of pouring just one cup of water at a time.  I don’t even need to lift it.  I simply set the cup size (all my mugs are large-so this is easy) press the button and when the water has heated, the water is dispensed automatically.  With no risk to me….. This also means it is safe for my children to make them or me a cuppa (although this novelty has really caught on yet!)

TWO:  iPhone:  Apart from the ‘usual’ needs for a smart phone to call, text and access maps; my iPhone is an AMAZING piece of accessible tech.  With the standard, ‘Notes’ ‘camera’ ‘Magnifier’ ‘Siri’ in addition to the ‘added at source accessibility features my phone is fully accessible’.  It is more than ‘just a phone’ it is a Canera, A CCTV Reader, a pocket sized PA, with the addition of recent apps such as ‘See Al’ ‘Big Spender’ ‘Station Master’ I have all the information I could possibly need at my finger tips means that nothing is ever far away.

THREE:  Apple Watch:  Just as my phone my Apple watch is an extension of the support I gain from Mac based products.  And actually my increased feeling of safety that my watch offers me, helps me to feel more confident in my surroundings.  With the use of haptics I can set a route on my phone that then gives instructions through vibrations on my wrist.  I have my watch set to enable me to zoom in on the screen, to read and send messages and even answer calls.  In addition to making contactless payments enabling me to keep my phone and purse both safely kept in my bag.

FOUR:  Compact Dome Magnifier:  This is my bewest piece of ‘kit’ that I actually received from the LVC (low vision clinic) at Moorfields Hospital recently.  It is a small Perspex domed magnifier that gives 2.5 magnification, which in the scheme of things isn’t much, but with a flat base and a domed top it enables the light to be increased and this has just as much importance to me as the magnification.

FIVE:  Wrap-Around Polarised Sun Glasses:  To protect my eyes from bright sunshine and glare. (Non-prescription)

SIX:  Power pack:  So that I always have a back up should I be using a lot of the apps on my phone and therefore depleting battery life.  As my phone running out is so much more than just ‘not being able to make a call’

SEVEN:  Amplicomms Amplified Bluetooth Neck-loop:  THIS IS a specialist piece of kit, this works with my hearing aids to support me.  I can stream calls direct to my ears (which works brilliantly for guiding from the ground when I climb)  I can listen to music or audiobooks (as I previously had done before hearing aids)  I can also use the amplification button on the front to enable me to hear a person stood in front of me in a loud, busy environment.  Or tune into a local ‘loop’ connection what is being said clearer and directly into my ears.

EIGHT: Notepad/Pen:  Because sometimes I like to jot down ideas for blogs or make notes and sometimes I like to not use tech.

NINE:  Book:  Just like the notepad, I like to just do the simple things, to enjoy escaping from the world for a few moments (after all with my magnifier and the right lighting, I can still read)

TEN:  Dog Bowl:  clearly this one isn’t for me, but with my faithful guiding girl I need to ensure that I can meet her needs and ensure that just like me, she is hydrated.

So, these are my lists.  And at times I will add other items to them and other times I may not include them all.  But I do start each day with a cuppa and I never leave home without my phone or watch (which probably isn’t any different to any other person in today’s society)  I am sure if you asked another VI they may have different items they consider important.

I just wanted to share with you mine.

i hope you have enjoyed.

Reflections

Photograph of Tee, Weston a grey t-shirt saying “climb on” stood in front of a black and white canvas of a misty hence in Greenwich Park

Photograph of Tee, Weston a grey t-shirt saying “climb on” stood in front of a black and white canvas of a misty hence in Greenwich ParkThis November it will be 10 years since I was registered SSI (Severly Sight aimpaired aka BLIND) it was the appointment with my consultant that EVERY seemed to change, yet at the very same time NOTHING changed.

What I mean by that is that my eye sight didn’t actually change at THAT appointment.  I  simply became aware of just how bad it was.

Having had my Nystagmus (involuntary eye movements) and having worn pretty strong glasses for as long as I can remember my sight had never been great.  But in terms of the distance I could see (I have always been short sighted) had changed very little.

Rightly or wrongly so; when I was in my early teens I had been discharged from the consultant at the hospital, where I was given into the care of my opticians.  With the strength of my prescription And it was through this team that in July 2008 they used their new camera equipment to try getting a photo of my retina.

My optician wasn’t happy with what she saw, but she couldn’t explain it to me as she explained it could simply be that with my eye movement the photograph wasn’t actually true.  So she referred me to the hospital for a thorough check up.

Having been rushed in as an emergency after the hospital were concerned I had detached my retina (a common issue that if caught early enough can be reversed) I discovered that this was not the case, the registrar discovered I had cataract in both eyes, I will always remember what she said;

With laser treatment we can remove them and that would actually improve your vision.

But as she was simply confirming I hadn’t detracted my retina, she didn’t actually comment on the fact that my retina wasn’t ‘complete’.

So, you can probably understand my total shock when I returned a few weeks later to see the consultant to be given the news of just how bad my sight was.

I did have cataracts (my left eye had been diagnosed when I was 12) But the laser surgery suggested wouldn’t be easy and would have very little affect at this time.  And actually with my retina dying away my sight would actually only get worse.

Many people ask me

How did you not realise you were going blind?

Its simple, the changes in my peripheral were suggested to be something that had been happening steadily for many many years, and as I only likely lost a small amount at a time I didn’t actually realise.

I did notice ‘little’ things after my daughter was born in 2006, like how I was bumping into things, like low level tables or benches.  But I put this down to ‘baby brain’

I had also noticed that it was taking me longer for my eyes to adjust to light changes; like walking indoors after being out in the bright sunshine, but because I had reaction lenses this went in-noticed as an actual change in my sight (as I assumed it was just the glasses)

So…… Reflections.

I have decided I want to celebrate this anniversary.  I want to acknowledge that as me I have changed from the person I was before.  It hasn’t always been happiness and celebrations, but I have tried to embrace my blindness (and now deafness)

It may sound like a cliche

But in these last ten years I have had so many amazing opportunities, so many doors open to me.  I want to move forward with me and celebrating the good seems the best way to do this.  I am human, I can’t be postmitive ALL THE TIME.  But in this instance I want to look for the good, rather than dwell on the bad.

But the question is (and this I hand over to you my readers) ….

How should I celebrate???

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