Today is one filled with mixed emotions, concerns and thoughts. Today, 18th January 2015 is the last working day for my guide dog Vicky. We have been working together as a qualified team since 18th November 2009, and it has been an amazing 5
It’s almost 11.00 o’clock, 12 hours after this crazy day started. The climbing arena was nothing like I had ever seen before and no matter how much I had researched and looked at photo after photo I was not prepared for the quarry that I
Well, this is something new……. I am sat in the passenger seat of my friends car doing 70+ MPH on the M6 Motorway travelling on my way to Edinburgh; while typing this blog. My iPad is tethered to my phone for 4G and my voiceover
it is time for me to ask for you to help me. If I were to write a book, giving in sight into my life and how I have got myself in and out of many a situation. Would you read it? I am talking
So, tomorrow is St George’s Day and at 2.40 this afternoon my daughters school sent out a text message to say that any Beavers, Rainbows, Brownies etc are free to wear their uniforms instead of school uniform… With full badges! This created 2 panics…. 1)
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.
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!
Sounds like a rude or harsh question; yet it was asked without any malice intent. It came from a little girl while I was visiting her school and doing and giving a talk about living with sight loss.
The teachers within the room took a sharp intake of breathe (I think it worried them slightly) However as this hadn’t been the first ‘curveball question’ I had received from the group I was already half prepareD for it. I started by thanking her for her question (while buying myself a little time to answer it)
“I wouldn’t say I like it….. But I wouldn’t say I hate it either. Because with my sight the way it is I have had the opportunity to do so many things that I am not sure I would have done had I been fully sighted.
But when I did I gave this answer (in a round about way-not sure I used these exact words)
I only took on the challenge of climbing because without being able to see my feet on the ground I knew that being high on a wall or mountain wouldn’t be an issue, as one of the ‘blind perks’ that lead to me trying it was that a fear of heights wasn’t an issue. The chance to pre-plan a route wasn’t there either. I climb mainly by feeling my way up the wall. And my feet often follow where my hands have already lead the way.
As my working life reduced. I began to work with different charities; through which I have gained so much, so much more than I could have achieved in my working life. I have also been fortunate to be there for my children more, and although I can’t see them as clearly in their school productions. We have had much more time together than I would have had had were my sight not decreased.
Yes there are times when I have dark moments. But anyone with or without sight loss has those, so I don’t think I am any different.
I have gained so much more enrichment to my life as my sight and now hearing has demisnished.
Being blind and hard of hearing is who I am and I just have to make the most of it.”
Maybe this was much more detailed and deep than I expected to share, but as I sat there with the class of children before me; I had a moment of reflection on my life and all the good things that have come from the small fact that I am loosing my sight and hearing.
‘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.
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
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.
Back in early September I was made aware that I had made it into the Shaw Trust Power 100 2018. But at the time knew nothing of it, who had nominated me or even what I was being nominated for.
I most certainly did not believe that I was chosen from over 700 entries to be named on the list which is compiled with the tag line
‘Britain’s most influential disabled people.’
Which may be why I kept it a close guarded secret. I only told my closest friend (because I did have to tell someone and I honestly believed he had nominated me-but he swears it wasn’t him)
Even when the proofreading of my bio that would be included in the publication came through I struggled to believe it.
I had previously heard of The Shaw Trust, but in only its fourth year, the power list is a relatively young publication, but one that is an amazing achievement in increasing awareness of people with disabilities and the impact they can have on the world around them. (Just as those who do not have disabilities can)
I then received my invitation to the launch party of The Power 100, to which i was welcome to bring someone, and it was I felt only right that I should invite my CPiC to attend after all I was sure he had been the person who had nominated me. (He is adamant it wasn’t him)
The event was to be held on The SouthBank and the dress code was ‘come as you are’ But no further information was forthcoming.
So Wednesday evening after a day in London with butterflies we attended the ‘Power 100 Launch’
The speakers talking of the work both they and the Shaw Trust do were amazing. The ‘Top Ten’ of the power list were announced, along with a little biography of what they did.
It was at the point where Alex Brooker was announced as Number 1 and invited to speak that I felt truly moved. His words, his whit and his ability to show how humbled he was by this really touched me.
It was after these that the publication was handed out.
It wasn’t actually until the point where Simon (my CPiC) found my bio page that I felt I was actually included. That this wasn’t all a big misunderstanding and they had invited me in error. As he read out my bio I found myself overcome with emotion.
Is it possible to say I felt proud of myself?
I realised that for the previous ten years (almost) since I recieved what I felt was devastating life ending news about my diagnosis I had actually impacted somewhere. I hadn’t ‘wasted’ my abilities.
I realised that I mattered.
You can see photographs of my inclusion within the publication HERE
You can see my bio and the other 99 entires in this years Power 100 2018 HERE