Back in 2014 after initial genetic screening was ‘inconclusive’ Proffessor Moore at Moorfields ask my permission to enter my blood into the 100,000 Genome Project. A project conducted by the NHS looking specifically at cancers and rare diseases to support treatments, diagnosis and research. (For full details on the project please visit https://www.genomicsengland.co.uk/about-genomics-england/the-100000-genomes-project)
As the name suggests it is a research programme that looks at all 100,000 genes. So I was advised it would take some time before any results were expected back.
However, Prof had felt that given my various conditions that were going on with my eyes I would most likely have some interesting results come back.
Fast forward 5 years and this arrived in the post.
Preliminary results for my genes are in, but to look at these in more detail I have been asked to send in more blood! Thankfully I was able to book in with my local doctors surgery and pop my samples back in the post. (Which is exactly what I did)
In the meantime I had my bi-annual visit to Moorfields, where the registra I saw started to explain the preliminary findings; Prof wasn’t wrong in his thoughts !!!
Which all I can say at this time is that they are most certainly interesting and not what was suspected at all. Not in a bad way, no illnesses or disturbing diseases were discovered; but in a way that has opened more questions than it has answered.
So, now to wait up to a year for the detail results to come back and hopefully a clearer understanding….. Watch this space.
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….
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.
Since I got my tandem my daughter (she’s 13) has been desperate to see if she can ride with me.
Now the nicer weather is on its way (I’m not jinxing it by saying it’s already here) I felt today was a good day to try it out.
Given the nature of my tandem and I believe all tandems the pilots up front is set on a taller post than the stoker on the back.
What ensues is pure comedy!
She can just about get on the front, but with her feet both on tiptoes she barely clears the frame. With me holding up the bike she manages to get onto the seat; yet her feet struggle to get to the peddles… When she says
“It’s okay mum, I can ride on the back and just do an audio description commentary of where we are!”
Let’s think ???? How about “NO!”
For fun I did ride with her on the back in the carpark area behind our house and we both nearly fell off from laughing so much.
So for now, much to her disappointment my tandem is off limits for my daughter. But at the rate she insists on growing I am thinking come next summer she will be all set.
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.
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.
The first tube is set to leave Heathrow Terminal 4 at 05:03 hours.
I’m not sure if it was nerves, adrenaline, or lack of sleep; but I was feeling odd. It was January, yet I wasn’t needing to wear a coat. I was in London, yet I didn’t have my faithful guide dog with me. Oh and i was about to attempt completing the iconic, London Tube Challenge.
A challenge that sees it participants undertake travelling to and through each of the 270 London Underground Tube Stations in the fasted time possible. I wrote about back in December “Having previously gone up, it is now time to go down.”
I’m sure at this point you are asking yourself the simple question: “Why?”
And honestly at the unearthly dark hour on a January morning it is a question I asked myself continuously between waking and going down to the hotel lobby.
No backing out now; my sighted guide and Tube Challenge Guru Andi James was waiting for me. This challenge was all set on a series of ‘IF’s’.
All it took was a tube line to be closed or a signal failure and the whole thing could be off before we even got passed the first hurdle. Then there were the stations where how quickly we changed tubes would be important and then there was the matter of those ‘end of line’ tube stations that would require us to jog to enable us to make the next connection.
….. MANY many MANY hours LATER …..
After loosing my Oyster card on a tube somewhere towards Baker Street, several bus journeys and one rather eventful run that saw me go over the top of a concrete bollard, we had had Lady Luck with us.
Although at times it was tense, at times it was busy and at times it was frustrating.
….. WE FINISHED …..
And the hardest part of the day was ahead of us.
The walk from the final tube station to the hotel for the night.
It was probably less than 20 minutes, but it felt like I was wading through treacle. There was no rush and after 18 hours and 38 minutes my body was done! We finished the route with 268 stations completed. Because at 23.35 hours we had run out of time for the final little branch.
In addition to travelling on each of the London Underground’s Eleven lines, there had been numerous buses and a first for me of travelling on a London Tram.
2 stations short at the end; however I felt proud of what I had achieved. I also felt incredibly grateful to Andi as my guide. At points he completely re-routed us to work around time slips that had occurred.
He welcomed me into the secret society of Tube Challengers and it is out of respect for him that I have deliberately not included the route that we took.
And even though Guinness World Records had informed me just days before the challenge that it would not be able to counted as a challenge attempt, i am still buzzing to know that I did it.
Now……. What to do next?
Me shamelessly asking for donations for my Just Giving page, www.justgiving.com/fundraising/tinkobell270
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.
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.
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.
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