Tag Archive for deafblind

Time to let you in on a little secret

Canary Wharf Roundell with Guide Dog sat in front of it in her guide dog harness.

Since the beginning of April 2020, when it became clear that lock-down was here to stay I joined an online virtual challenge called ‘Race at Your Pace’. Being that both running and cycling require the input of a sighted guide I joined the walking challenge and between April and 31st December I clocked up 612mi.

BUT WHY?

As a form of training for a challenge I hope to complete now we are in 2021. Which I originally wanted to call ‘my Womble Challenge’, in that I shall be walking the London Underground Overground (cue cheesy 1970s tv theme tune) However, as this is a different version of The Tube Challenge I completed in 2019 I have setted for

‘Tinks Tube Challenge, a 2021 Twist’

As it was “Tinks Tube Challenge” that saw me travel to and through all 270 tube stations on The London Underground with world record holder Andy James, in under 19 hours on this day two years ago.

However this time, (thankfully) there is no time challenge or running. Instead each line I walk will enable me to see London on the surface. Take in the sights, the sounds and the smells. And with the length of the walks vary from just 32 minutes to 2.5 days. (as i will be stopping and sleeping) if it is a part of london covered by the underground network it will form part of the walk. I plan to walk to each tube station on each line; this will see me visit most stations more than once over the full eleven walks.

With Kings Cross St Pancras being the staiton I will visit the most.

This is not a new challenge, there have been variations of this challenge achieved over the last few decades; it was actually reading Mark Masons’ book ‘Walk the Lines, The London Underground OVERGROUND’ That inspired me to take on this mammoth challenge.

Which if TfL run to time will see me complete 272 stations with the new Northern Line extension out to Batttersea Power Station.

As with my previous tube challenge I am completing this as part of my fundraising to name a life-changing guide dog Victoria. 2020 would have been ideal for this as the puns relating to sight and 2020 are in abundance, however the Covid pandemic had other ideas and foolishly lead me to believe that by now we would be out the other side and returning to some normality instead of (again) being in a form of lockdown. (Oh how niave of me!)

So instead of launching this challenge today on the 2nd Anniversary of me completing the original challenge as I had planned; by starting out on my first walk I can only write about it here and instead build the tension.

2021 for me has already started with BIG BIRTHDAY, so it is only fitting that I give back to others. Guide dogs are and have been a big part of my life since 2009. So it is in this monumental year for me age wise I return the support, while doing something that I am actually really looking forward to.

Given the distances covered on each walk, there will be very few that I am able to complete with Fizz by my side, instead I have a team of volunteers to support me as sight guides and my faithful cane.

Given the current restrictions and dangers to everyone with this pandemic I feel it is a much more realistic expectation that I probably won’t get to physically start my challenge until the latter part of the year. So, for now I will continue to train, working particularly on increasing my fitness and stamina; so that when it is safe to do so I will be good to go.

…. On a side note I have also updated my fundraising page too, which can be found HERE

Nope, No tears even though we are in Tiers

With covid cases again on the increase and new strains popping up it is no real surprise that as a Country, most of England has entered into stronger restrictions as of December 26th.

For me, I wanted to ensure I didn’t repeat some of the ‘blind fails’ that I incurred during both the first Lockdown and Lockdown 2.0. While being able to increase my walking, for both fitness and stamina.

So, my Christmas present to myself was two new cane tips. Sadly one won’t actually arrive until January, however I am off to a great start with the first.

I introduce you to my Ambutech High Milage Rolling Ball Tip.

Ambutech High milage roller tip on the end of red and white cane, with my hand to the right for size comparison

Measuring 5.1cm it is significantly larger than my previous tip as well as feeling much heavier. My cane is a slimline graphite long cane which gives it more ‘bouncy’ and initially on adding the tip felt like it was ‘dragging’ but as I have got used to and learned to release my grip on my cane handle it has got easier.

As for tip itself ….. A-M-A-Z-I-N-G !!! A long 2mi walk and not a single ‘cane jab’ or it catching on anything. I deliberately walked a route where the paving slabs are cracked, the path has roots in it and where I have previously experienced many a ‘cane jab’ or catch.

So, as the title suggest. “Nope, no tears even though we are in tiers.”

Eek …. 40 is fast approaching

As my youngest has recently celebrated turning 10, it makes me aware that the next birthday is our family is mine.

My birthday has often been a Love-Hate subject for me, being at the beginning of January it’s always been pretty rubbish timing. (Better than it could have been, I believe my due date was December 21st)

As a child I often got money for my birthday, which mixed with what were True-January sales I got so much more for my money. However since adulthood as much as I would love to celebrate and socialise with friends I am acutely aware that January is a VERY long month.

Many often joke that January is actually much longer than its 31 days, which in reference to paydays is certainly true; as it can be as much as Seven weeks rather than Five.

However, a real plus for me is that restaurants and pubs are generally much quieter for these exact same reasons! Meaning that I can enjoy myself without the worry of additional difficulties because of noise, crowds and party-type lighting. (Hence the Love-Hate)

Having my youngest 10 years ago meant that I was a very tired newish mum for my thirtieth as it was a very different experience to when I had my eldest because of the changes in my sight.

Lots of people have started asking what I want to do the celebrate.

And honestly, with the world still in the middle of these ‘unprecedented times’ and with so many restrictions in place, there is a distinct possibly that even if I started RIGHT NOW….. I would not achieve what I want to by the end my thirties with a ‘Forty things before I am Forty Bucket list’

So, the question is; do I make it ‘Forty things to do as I turn Forty’?

Or as one friend suggested….. “Celebrating beginning my Naughty Forties in Style”

And if that is the case, What do I do?

I do have a pretty big ‘challenge’ planned for 2021, which is currently being tweaked and trained for. Which, linking to my previous challenges (Gherkin 2014, Cheesegrater 2017 and my Tube Challenge 2019) will be following the London theme.

This Challenge will most certainly help me to achieve my fundraising target to name a guide dog pup and future life-changer. Which would be an AMAZING way to celebrate starting my “Naughty-Forties.”

With the exception of this year (thanks lockdown!) I have in recent years taken to a solo travel adventure, so it is only fitting that that would be included. But I would also like to do something with my children, with friends and with those I now come to call family.

I do also like the idea of celebrating in several different ways. I’m not thinking of a big party; actually I can’t think of anything worse! Rather many smaller and different experiences that will be much easier to adapt to include my different circles of friends and family.

It goes without saying there will be Climbing, Hiking, Tandem Riding, London, Trains, Beaches, Cocktails and Cake …. Plenty of Cake!

But as for particulars….. This is where you my reader comes in. What would you do if you were me?

Please comment below and help me make this an amazing and incredible year to look forward to.

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What is this all leading to ?

Yellow medal staring 50 miles walked

Lockdown has not been easy for me from a mental health point of view. As someone who holds multiply volunteer roles I work better when my schedule is full.

They say

If you want something done, ask a busy person.

And for me that is most definitely the case. When I have all the time in the world to do something it never gets done. To the point that my diary schedule now also includes specific days and times for mundane housework.

I also need to find something to get me working out, gaining strength and becoming fitter; rather than just sitting in front of Netflix’s.

Along came a Facebook advert for a virtual challenge called ‘Race At Your Pace.’ Ever skeptical about just adverts I asked a few friends and they confirmed it was a genuine company and that actually many of them were doing a running challenge with them.

Social distancing for me with a visual impairment means that I am unable to run or cycle; given that I need either a guide runner to run with me or a pilot to ride my tandem.

Which left me with walking.

Not a problem, as I needed to exercise my guide dog Fizz, and this was a mix between ‘working walks’ for her in harness and ‘sniffy walks’ where she was on a longer lead and able to just be a dog, sniffing at each post to catch up on all the ‘Pee-Mails’

So, April’s challenge was set, I set myself the target of 50 miles of walking workouts. Which I new was a MASSIVE challenge for me, however with both indoor walks and outdoor walks counting I felt it was achievable.

Oh how wrong was I?

In April I did walk 50 miles, however it saw me going right up to the last minute with a 4 mile walk on the 30th April. Having always measured my distance in Kilometres, it was a bit of a shock to the system to measure in Miles.

However when this beauty arrived in the post I felt proud that I had achieved it.

And having gone right to the wire for April I knew I needed to work harder. So not only did I re-enter for May, but upped the distance…. This time 65miles.

A target that I not only reached on the 29th May with 2 days to spare but I discovered that I had smashed through it as only looking a ‘walking workouts’ on my Apple Watch did not include the 6+miles I had recorded as ‘Hikes’.

So yes, you have probably guessed by now, I am going again in June, I am again increasing my distance…. increasing to 75 miles.

But why?

I hear you ask, we’ll Lockdown has been a time of planning, and for now let’s just say when the world reopens I will be walking much much further than 50, or 65 , or even 75 miles……

Two months in ….. Covid-19 and me.

Uk gov poster reads, stay alert, control the virus, save lives

As I sit here on a Wednesday evening and type up this blog, I must begin with saying that I am well. I am not, nor have I been unwell with Covid-19 or had any symptoms. (Lets just hope that hasn’t put a ginx on it)

As all news channels are continually reminding us,

We are living in unprecedented times.

And that is putting it mildly. As I touched on in my previous blog post over eight weeks ago; when we hadn’t actually fully entered into enforced social distancing and restrictions on what we did and how we did it.

Social distancing and being aware of those around you are not so easy when you have sight or hearing issues. (I can only assume that people with other disabilities must also be finding this time hard)

The country as a whole has never seen anything like this in peacetime…..

Even the amazing Captain Tom Moore, who set out to raise £1,000 for NHS charities as he walked 100 laps of his garden in celebration of his impending 100th Birthday (who has actually raised over £33 million to date) says that this virus is nothing like any of the wars he was part of.

We have seen our country led by our amazing NHS workers, supermarket staff, delivery drivers, teachers, support staff among many many others and where The Daily Briefing has become part of a daily routine for so many, along with the weekly ‘Clap for Carers’ on Thursday evenings, I am struggling to find the words to write.

Yes, you did hear that right…

All of my volunteer roles are suspended.

Planning for my next big adventure is on hold.

My house has been rearranged multiple times.

I hold weekly meetings with my small group sisters from church.

Sunday morning worship is all online via a live church platform.

And in all honesty; I find using Zoom absolutely exhausting. However, at the same I time I am incredibly grateful for this way to be able to stay in contact with others.

Daily life and this ‘new normal’ isn’t easy on anyone. However, I made a conscious decision at the beginning of this to be more of a Positive Patsy that a Negative Nancy; don’t get me wrong, I have hosted a few pity parties for one. But actually the way you react to a situation is what strengthens you as a person.

For me, the biggest part of this is my independence, there are no other adults living in my home. My son has continued to live between me and his dad, while my daughter has been isolating with her dad and step mum for about 10 weeks and only seeing her on my phone has been heartbreaking, however she needs to protect her dads health and being 14 she is actually incredibly well adapted for not going out and only speaking to people via WhatsApp and Instagram.

Delivery slots for shopping are still few and far between, however one bit of good news is that Tesco have (off of their own backs) enabled those with visual impairments to register for their priority delivery. While sight loss charities Guide Dogs, RNIB and The Thomas Pilkington Trust have been working on a petition to make the government aware of the vulnerabilities of those with sight loss and the need for these to be included within the Governments scheme especially to enable access to home delivery from supermarkets.

The Bad news is that my guide dog Fizz doesn’t understand why when we do go into town that we are not going into Caffè Nero, Coffee 1 or Costa (being that they are all closed). She is however grateful that we can still shop in Wilko and Poundland, because actually for cleaning supplies, medications and toiletries I have found these stores much quieter than popping into a supermarket for anything I need between deliveries. (And the plus for Fizz is that both stores have pet aisles!). And for my own sanity, having the ability to pick up these little bits myself has helped me feel in control.

Guide dog Fizz sat with her red and white check harness infront of a wall painted with a giant rainbow to support the nhs

Social distancing has continued under the government guidance and I fully understand and support the need for this, to not just keep me safe; but to also keep others safe…. Especially key workers.

For me it is simply the struggle for me to do this…… Although Fizz has started to just stop and stand still when anyone comes near us, I have found different stores difficult for different reasons. Especially since the introduction of one-way routes. My local Coop store has been the best by far. Not only have they put arrows on the floor to point you in the right direction; they have also put big red ‘NO ENTRY’ markings on the floor for aisles you should not enter at that end. Simple, yet for me incredibly affective as I can see the red much clearer than the blue arrows.

As I said before, I have decided to be more of a Positive Patsy (and not as in continually drunk like the Patsy in Abs Fab) and in turn my anxiety has reduced as this ‘lockdown’ has continued. There have been occasions where I have missed the queue of people socially distancing to get into a store. It was not intentional that I queue jumped, it was rather that Fizz has set routes and entrances that she is use to using. I have tried my best to keep the distance between me and others, but I have also made mistakes. And when we have been out on our daily exercise Fizz has taken to just stopping, standing still and waiting for the other people on the path to move out of our way or cross the road. Which (at the moment) I can’t decide if this is a good or a bad thing.

So, for someone who couldn’t find the words to write this post, I have managed to take up quite a bit of your time. It’s turned into a long post; however that said, I hope that you have enjoyed it.

Please do Stay Safe, if you can Stay Home, Protect the NHS and above all please Take Care.

Meaningful Memories

Social media can be both a blessing and a curse. It has the power to make or break your day. For some it is part of their daily routine; flicking through friends posts and memes of cats over morning coffee.

I have always said that my Facebook wall is mine to graffiti how I see fit, it contains The Good, The Bad and The Ugly. However this may not be how others use it.

For me each day I look back on my memories. A chance to look back and see what I was doing on this day in any given year right back to 2008.

Memories of both my son and daughter growing up, my pregnancy with my son, family celebrations and days out. They also map out my journey with sight loss; because although I was born with my conditions, I slipped through the net until 2008, however I did keep my Facebook posts about this part of my life fairly vague, that is until I got the news that I had been accepted onto the waiting list for a guide dog in August 2009.

The other day a post popped up in my memories that holds even more truth now then it did in 2012, especially as way back then I wasn’t aware of how just two years later my life would be, or that I would later discover that I was loosing my hearing too.

The post read:

Some people go through life asking “why me?” Others say “God gave me this/these challenges to test me.” I say “if you can’t change a situation, change your attitude towards it.” My disability does not define me, nor does it rule my life. I define me, I rule my life… I am me, not my disability. My crappy eyes are only a small part of me, tiny in relation to other parts… My personality for example. Do not define me by my disability and i will not define you by your ignorance.

And this popping up in my memories was a timely reminder that I define me, not my disabilities, my differing abilities or other people. However as one friend pointed out;

I like your crappy eyes, if it weren’t for them, we would never have met.

Which is also true, through my love of helping others, numerous charities and even supporting children in cub scouts I have been able to cross paths with so many that had I not had any of this, I doubt we would.

So, the point of this blog?

My one piece of advice would be that it is okay to look back every now and again, but only so you can see how far you have actually come.

The only Corona I want is the ice-cold one that comes with a wedge of lime

Over the last week to ten-days there has been a real shift in how we all behave; And rightly so. Covid-19 is no joke and not something we should take lightly.

This is a strange time, unlike any other I have ever faced in my lifetime and actually many people have never faced since WW2.

It is a time when the vulnerable are simply facing greater vulnerability..

The simple things that many people (vulnerable or not) take for granted, like having your supermarket shop delivered to your door; even being able to buy toilet roll because your on your last roll.

For me, this time has been one of increased anxiety, and I would put much of that down to my disabilities.

My disabilities don’t place me in the group of ‘at risk’ thankfully, however many of the measures in place are much more difficult for me.

When at home, washing my hands and cleaning are easy for me. However when out and about, not so much.

In the last day or two WHO (World Health Organisation) have recommended social distancing. And this has been a major issue for me.

Made even more difficult because I have an incredibly sociable guide dog !!

Keeping a significant distance of two meters when you have no depth perception and a visual impairment that means if you put your arm out in-front of you, you can’t see your own hand; How do you actually know how close to someone you are standing?

All of my many volunteer roles have been put on hold. My social life (aka my coffee habit) has significantly decreased. However my walking and ‘escaping to the great outdoors’ has increased.

The biggest challenge for me at this time of uncertainty the most difficult thing for me is asking for help or accepting help when it is offered.

I am stubbornly independent, however I had a moment early this week when I had to swallow my pride and ask a friend to take me food shopping. Because no amount of independence would have made it possible for me to do a ‘usual’ fortnightly shop in person because no deliveries were available. That very same friend has been absolutely amazing in ensuring that both my physical and mental health are not being affected by all of this.

Thankfully social distancing doesn’t have to be a adhered to when working my guide dog. She is and can continue to be my left hand lady. Our walks have been very different, but with more time for her to run around and she hasn’t seemed to mind too much.

My message to you all is to stay home, to stay safe and more importantly share with those who are not as fortunate as yourself. However if you do catch the Coronavirus, isolate, order in, and ASK FOR HELP.



Puzzling perceptions

Always one for challenging myself.

However, this challenge is on a totally different level than any other I have done before.

It’s not particularly physically challenging, rather mentally challenging and reliant heavily on a sensitive touch. (A skill I am working on improving)

What is this challeng? I hear you ask….

It’s a puzzle, not as in I am teasing you all; but rather an actual puzzle. A jigsaw puzzle that is.

With my lack of sight, the actual picture on the puzzle is redundant. So, for this reason I have chosen one made up of butterflies, in varying colours and shades, to give a finished puzzle that is almost a rainbow.

I will be honest, it’s been hard work. There has been tears and just to get to this stage has taken many a late night.

It all started with finding the edge pieces. Then out came my magnifier; so that I could separate the pieces by their main colour, which is easier said then done as several of the pieces morph into the next colour.

So, for now this is where I am.

Image of a white board with all the edges of the colourful jigsaw pieces on it.  Sat in the centre is a tray with the separated colours in.

London sans guide dog.

I am just heading home after an amazing evening at the theatre.

With my dear friend as my sighted guide I left my leading lady Fizz with a friend for a doggy-sleep-over. 

With work commitments it was literally up to London for the show and home again, not really ideal given the wintery weather. Also I would not be alone until on my own home territory; Fizz deserves to be able to put her paws up and relax.

There are few positives about me going out with my cane against going out with Fizz, however one of the biggest makes me act a bit like a kid in a sweatshop, which would be …………….. Travelling on escalators!!

No need to hunt for the stairs, or find the lift. I can literally get swept along with the crowd at London Victoria and (remembering to stand on the right hand side) travel up and down the series of moving stairs.

No walking out of the station; into the rain to find the obscurely placed lift that has only been an addition in recent years.

My friend was born and brought up in London, so she was a brilliant guide. However, London theatre district on a Friday evening is not a place for the faint hearted!

And I would be lying if I said I didn’t make the odd ‘deliberate’ cane tap with Mr and Mrs Arrogant. (Fellow long cane users will know where I am coming from on this)

However we both survived.

We enjoyed the comedy.

I succeeded in making my friend laugh with my ability to act as if I were Moses, parting the oncoming crowds as if they were the sea.

And all while not having to think of where the nearest patch of grass or earth around a tree was.

It isn’t often I would venture into the capital without my guiding girl Fizz, but given the times of the travel, not leaving London until just before midnight it was much more important to ensure Fizz’s needs were met….. While pleasing another of my friends as Fizz went to hers for a sleepover and a play date with her pet dog.

Encouraging 100,000 Genome update

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.

Photograph shows a letter, blood form and plastic canister for holding blood vile in

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.

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