“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.
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:
One Touch Kettle
iPhone
Apple Watch
Compact Dome magnifier
Wrap-Around Polarised Sun Glasses
Power pack
Amplicomms Amplified Bluetooth Neck-loop
Notepad/Pen
Book
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.
While with a group of friends today we were talking about faith. Discussing it and questioning what our understanding of it is.
One comment made about one way to look at faith was
If you’re sat on a chair, you hold faith that THAT chair is fit for purpose and will keep you sat safely and not break.
This made me think, as someone who has far too many questions about ‘religious faiths’ to have one of my own I thought of it a different way.
What (or who) do I have faith in and trust?
And when put like this I have just one answer
My Guide Dog Fizz.
I have total faith in her (and Vicky before her)
Each day i put on her harness and trust her to guide me to my destination; be that getting the kids to school or wherever we may be going to.
I give her the directions and instruct her on where we are going, but I have faith in her that she will get me there safely, not walking into traffic or causing me to trip or fall on steps, curbs or other surfaces.
And with the exception of the odd over-hanging branch I know she has me.
My faith in her is I guess some would say, similar to that faith of a religion. I have trust that she will protect me, keep me safe.
I know HOW she is trained and WHY she is trained, but no-one can say for certain WHY she takes that training and guides me each day.
That to me is faith.
I have the faith that she will do as I ask of her each and every time I put her harness on.
I trust her.
I can’t see what she does each time we go out together; I simply feel how she moves through her harness and I can react accordingly following her lead.
That to me is faith.
I trust her.
I may have totally missed the point of the discussion; I have never sat on a chair and though ‘this isn’t fit for purpose’.
Just as I have faith that a chair will be safe to sit on; after all this is what it is designed for. I have faith in my guide dog, because she has been trained to guide me.
This 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) ….
I umm’d and argh’d About writing this post; then I thought
“This is part of me, I should share it.”
last week I received an email that has taken me completely by surprise. I have been nominated for an award.
But not just ANY award, this is for The National Diversity Award 2018 in the category of Positive Role Model.
I do not know who nominated me, but it has left me feeling slightly emotional and speechless.
Under the terms of the nomination it is for me to now write a Bio and supply supporting evidence as to why I feel I am deserving of this award.
Yes, I have no trouble talking or writing about myself; but in this way? I’m not so sure.
But I am of the thinking that if I don’t at least try, then I will be disappointing myself and the person who nominated me.
So I am slowly working through the forms I need to complete. And am sharing this nomination with you all, in the hope that you too agree with it and wish to vote for me?
I have a ‘Have Guide Dog, will travel’ attitude to life, today I decided in the sun to visit Winchester (alone) something I don’t think I will be in a hurry to repeat.
The rudeness, the sly comments & general ‘opinions’ that were continually thrust upon me resulted in a very short visit.
I am more than happy to accept and I do understand that not everyone likes dogs, be that an assistance dog or a pet.
I do understand that in some cultures dogs are not warmly accepted. But today the comments or actions of rudeness did not come from the here.
Today it came from,
A business woman looking down on her phone;
The art student with a VERY LARGE portfolio;
The man in the queue in Starbucks;
The woman behind me in boots who tutted at me when I asked the sales assistant to repeat herself for the 3rd time because I couldn’t hear her;
The van driver who got shirty when I waved him on because I wouldn’t cross in-front of him.
Were it not for the kindness of strangers I would have found myself fighting tears & heading for the nearest taxi.
it was thanks to ….
The window cleaner who moved his ladder so I would walk past;
Theassistant in Starbucks who offered me water for Fizz while pointing out to the rude man that assistance dog or not I had every right to enjoy coffee;
To the sales assistant in boots who guided me to a quieter area so I could hear what she was saying!
I know that I may stand in the wrong queue at times, I know that my guide dog likes to walk by the building line, which means we often walk right in front of the shop doors, I do understand that I take up more width on the pavement as I walk beside my guide, and she can’t tell me to “step in” the way a sighted person would if the path was narrow.
But at what point does vocalising your opinions change this? All it does is demoralises someone who just wants to get on. And could even stop a (less stubborn) person from going out and visiting other areas.
Today has been one of those days where I have felt isolated and hurt by the actions of others. But writing this now I am able to say that I won’t let it stop me, I share this with you now to raise awareness.
Because it can often be the ‘off-handed’ comment that you quickly forget making that can cause irreparable damage to someone. We never know what demons people are fighting; so just be kind.
Especially if that something is architectural or design related. One such moment of wondering that I want to share with you is ….. Disabled Toilets.
From a design point of view I can still quote the minimum measurement requirements for a disabled toilet from The Metric Handbook: Planning & Design Data. I can tell you the reasoning for the outward opening door; the height of the hand basin and so on and so on.
I can also have a discussion at length about badly positioned pull down nappy changing tables….. But the one point I find the hardest to fathom is the mirror.
Placing a mirror above the wash hand basin in common place, yet often missing in a disabled loo.
Instead there is often a LARGE floor to ceiling mirror (which covers all height differences in disability) instead. Which makes perfect sense, after all despite the outdated signage there are many people with disabilities who do not use a wheelchair.
I for one am one of them!
A room I can go into, lock the door and know not only does my guide dog have space to sit patiently for me; But I know that I can find my way around the room (regardless of lighting) to do what I need to do, then wash and dry my hands afterwards.
But I go back to ‘That Mirror’ …. Why is it always positioned directly beside or infront of the toilet?
Surely nobody wants or needs to see themselves at that point?
Or in my case, no-one needs to hear me scream when a glimpse of my reflection (which didn’t seem to actually be me) mid-visit panicked me to thinking someone was in the room with me!
Like I said at the very beginning, this was a ‘Blind’ moment or maybe it was even a ‘Blonde’ moment…. But for someone with minimal peripheral vision it was most certainly an ‘embarrassing’ moment.
Especially when fellow patrons were knocking on the door to offer assistance and asking if I needed medical attention!
About a month ago I bought myself something rather quite special.
I bought a tandem.
I bought it from a fellow blindie who had had a change of health and although the bike had been serviced and well looked after; it had remained sat un-ridden.
It is only through the ‘on this day’ feature of Facebook that I can tell you that it has been just under two years since I have ridden a bike.
It was when we were away on holiday with the children, it was when we were riding on site of a Haven Holiday Park. After this I am sure that there was one further bike ride back at home before my bike was left to gather cobwebs and become home to spiders in the garage.
I did not stop riding because of an injury.
I stopped because with my hearing going in addition to my sight I did not feel I was safe either for myself or for other road users.
Many would be surprised that it is only in the last two years that I haven’t ridden my bike. Thinking about it now, it was pure stubbornness that had stopped me from hanging up my riding helmet before then; in the same way I can only imagine that a car driver who is in denial about their sight feels about surrendering their driving license.
A tandem was a way of gaining back some of me.
Yes, by the very definition of it I would only be able to ride with someone else. But riding a tandem with someone else feels less of a lack of independence than riding a bicycle with another adult beside me. I think that this is because a tandem is for ANYONE. A normally sighted person can ride a tandem, it isn’t a ‘mobility aid’ in the conventional sense of the word. Even though when I think about it, in my case it kind of is just that; a mobility aid.
Anyway……
I had the bike serviced and checked over. I spoke with a few friends about coming out for a ride with me and then, earlier this week. One of them took me up on my offer.
Having spent time looking over the bike and following the workings of it I was instantly struck by the fact that as the rear peddler (the stoker in technical, bicycle jargon) I had no gears or brakes. I was to simply just peddle. (Which when you think about it sensibly it makes perfect sense, but to me as a former solo cyclist-I had always had gears and brakes)
So, if all I was to do was to peddle. When and how would I know to peddle?
How would it feel sitting behind someone else (The Pilot-more jargon) who was in control of where we went?
How fast we got there?
And in what intensity of gears we were to achieve it?
I guessed I would just have to ‘go with them’ … LITERALLY.
My faithful Climbing Partner in Crime (CPiC) Simon was my first volunteer; we have ridden together before (on individual bikes) and he more than most understands my sight loss, and more to the point my anxieties of something new.
First he took the bike for a ride to the end of the car park without me. This gave him a feel for the length of the bike and the kind of turning circle it would have. Then it was my turn to get on with him.
My first ‘odd’ feeling was that I had both my feet off the floor, on the peddles and yet the bike was still upright and stationary. This being because Simon is taller and still had his feet on the ground!
We set off; it was wobbly, but it soon became smoother as we got into a rhythmic pattern. And surprisingly; not being able to see infront of me wasn’t concerning (because all I could see was the red of his jumper) felt O.K.
It felt ‘odd’ in the sense that I didn’t feel I was peddling enough, not as much as I thought I remembered from when I had ridden my bike before. However, what I was forgetting was one simple rule;
”Double the bodies means half the power”
Easier said than done. When the pilot slowed down I felt that as the stoker it was for me to peddle more. This wasn’t the case. In fact at one point I was told very bluntly to “JUST STOP”
I began to relax into the journey, I began to feel when it was time to coast and when it was time to peddle.
I also felt the exact point where my shoulder relaxed and my anxieties of ‘letting the other rider down’ were disappearing.
I only got off the bike and walked at a point where we crossed a road on the footpath (rather than add the complication of the road junction into the mix)
And before I knew it we were heading back towards home.
I could lie and say my arse wasn’t hurting from being sat on a not so padded saddle. I could lie and say I didn’t get cramp in my thigh….. But then were would the fun be in that?
It was interesting to discover that I can suffer with ‘Elvis Leg’ when riding a bike, just as I do at points when I am climbing….. This usually comes at a point where I am concentrating so hard that (as silly as this will sound) I forget to breathe!
We managed to clock up just over 9km on our first ride. After all I live in The Highlands area, which as the name suggests is an area with many a hill; which for the most part I want to be avoiding until my bike fitness has improved somewhat.
The route was recorded on my Apple Watch and all the specifics as to times, heart rate and distances are stored within my fitness app. So next time we can follow the same route and see the improvements in it.
I wasn’t really able to talk to Simon much while we were cycling (but then there really was no need to) so when we arrived back I asked him how he felt, his answer wasn’t what I think I expected to hear;
”It felt creepy having someone riding RIGHT behind me, so close; I felt I wanted to ride to get away from them.”
…. But as he never managed it, he said it was just something he would have to get used to. And he has agreed to go out and ride with me again.
So watch this space for more tandem cycling antics.
if you have followed me for some time you will know how much I like my coffee. It’s no secret, I enjoy sitting with a nice cup and ‘people watch’ (yes even as a VI I do this!)
But of late I have really struggled.
Not so much with the people watching part; but rather the collecting my coffee part.
Just a short bus ride away from me is the lovely Whiteley Shopping Village. It is home to a great variety of shops, restaurants, cinema and yup you guessed it coffee shops!
It has the three MAJOR brand names of Costa, Nero & Starbucks, in addition to The M&S cafe.
Whitely was purpose built. Many of the storesmake use of the high ceilings and glass outer wall to add a mezzanine floor, while the cafes and restaurants leave them to create the feeling of space and ambiance.
But here in lies an issue.
Starbucks in particular……
with its solid floors, wooden traveled, coffee ba and very minimal in way of ‘soft furnitings’ the inside has an echo.
The seating is positions around the centrally placed counter that leads you around to the right where you can collect your coffee at the end of the bar, where the bar continues again to the right (and right again) to enable friends to sit on the stools while enjoying a coffe with easy access to PowerPoints that are built into the bar.
There are standard level blue benches that cover one entire wall of the store with small tables, then at the back there are simple couch like seating around low tables.
With a further bar seating in front of one of the windows and more 2 seated wooden tablespoon dotted about.
So for me, I can easily find somewhere to sit that works with the lighting, be that natural, bright sunshine that we are enjoying at the moment or artificially lit by the store itself.
So, hopefully I have set the scene for you. The fact that the coffee machine is not directly beside the till make for easy ordering and it also enables the staff to have a ‘queue’ system for drink collection.
But it is this ‘drink collection’ that has become a real struggle for me.
With the height of the ceiling, the multiple coffee machines and the general ‘noise’ of the store; even with my hearing aids I can’t hear any particular voice clearly.
These are all factors I can’t change. And I am not one to be beaten into having to avoid a store (particularly one that sells coffee) because of it.
With my visual impairment I can’t make eye contact with others, although I can thankfully usually recognise a member of staff at datrbusks by the iconic green apron they all wear.
So now, when I arrive at ‘the bar’ I politely gain the attention of a member of staff and then I show them my phone…..
And this is what they see. (Or similar depending on my order)
Where I have found that a kind member of staff then directly passes me my drink when my order is is completed. Saving them shouting out to deaf ears and saving me from tepid coffee because it has been sat too long.
Such a simple little app is ‘Notes’ which I use every day for one thing or another like many people. But one that has enabled me to keep just a little bit more of my independence (even if it is something so trivial as ordering a coffee)
I now feel more comfortable when dealing with such noisy situations.
And I don’t have to miss out … So it’s win-win situation.
This year hasn’t had the easiest of starts, with changes in my sight, trouble with my hearing and ‘other’ issues; It has all been a bit much to deal with at times.
All of this compounded by a need to explore who I am and where I belong, and it isn’t hard to realise that my anxiety and mental health has also taken a beating.
But that’s ok.
It is alright to not be ok ALL the time.
And it is ok to admit that; however hard it may be.
There are a few things I want to tell you about, I have realised I never finished off my 2017 BMC Paraclimbing competition blogs, or even mentioned the Team Selection Day back in February 2018.
So, for now I am going to spend some time going ‘backwards’ but as all posts are dated to (around) when they happened, humour me.
And once I have completed these, take a good look through the past six months. I can promise you there will be laughter, whit and sarcasm. But be warned there will also be sadness, upset and moments of total despair.
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