Tag Archive for deafblind

New Year; New Challenges

And no, this isn’t about setting a (be it a belated) Resolution.  This is about the realisation that after just over a month into 2018 I have faced and fought, fought and (sometimes) lost and lost and re-found my own sense of strength.

If you are a regular reader you will know that this year started with the sad loss of my first guide dog Vicky.

But with the sadness of loosing her; along with the adjustment of ‘just having Fizz’ I found a passion.

A passion that has always been in me, but for one reason….. Or rather one EXCUSE or another I had forgotten it.

It is so easy to forget those simple passions that can bring such pleasure when ‘life’ keeps getting in the way.

Anyway, I digress……

When we said goodbye to Vicky I suddenly realised how much I loathed being at home.  How I couldn’t bare the ‘silence’, the little things about her like hearing her dream.

It also took me several weeks to ‘forget’ to say hello to her when we came in.

One of the strangest things was coming home to a silent house! Because for the past 3 years I have always left on the tv or the radio to keep her company, so she didn’t feel alone.

So, as painful and upsetting as returning to a quiet house was, sitting in one was even worse!

And this is where my passion reignited.

When the children weren’t home (because of school or being with their dads) I disappeared off for a walk.

The beauty of a walk is that Fizz could always come too.  The beauty of a walk is that I could just ‘stomp’ out my upset.

The other beauty of walking is that I could track it all on my Apple Watch, to judge the distance, to track my pace and after several weeks to gauge how my fitness had improved, because the very same walk from my house to town isn’t taking as long!

The other bonus of my walking is that I could feel free.  I don’t need to rely on another person to walk, I don’t need to rely on any equipment or memberships.

I just ‘harness up’ Fizz and head out.

Sometimes we get the bus to the beach, sometimes we take a different route into town.  And other times we enjoy a stomp through the muddy bridal ways en route to the pub with friends!

Your probably wondering why I am telling you all this in this post?  Well, you see I have decided to make this walking count.

I haven’t finalised the details yet, but with a group of friends I am looking to complete The Three Peak Challenge in late Summer.  Its just over 26 miles and with a tour guide is a walk that is set to take between 9 and 12 hours to complete.  And for obvious reasons (such as exhaustion, concentration and distractions) it is one walk that Fizz won’t be completing with me!

But that doesn’t mean that she can’t help with my training !!

And why I hear you ask……..

Well, you see ReSound have just made a massive development with their hearing aids, having raised just over £1,000 for them, I want to ‘earn’ the remaining £2,500 towards enabling me to purchase the new and improved LinX 3D (an improvement on the LinX 2 that I had previously tried.

So, one the challenge is set up you can show your support with words of encouragement, pennies to help reach the target OR by joining in on the walk yourself.

Domation can be made via the Just Giving Page Help TINK Hear

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When Molly and Chris gave a Masterclass

Image of Members of the group sat around a large table with phones, iPads and other tech sat on the table with numerous cups of tea, coffee and water with Molly stood at the head of the table showing her iPad:

Would you think of a pair of glasses as a mobility aid?

When you see an item every day and used by everyone then it becomes ‘the norm’ and not seen as an aid to support someone with a disability.

There are many products that are designed to support those with disabilities, these include glasses, hearing aids, walking sticks, wheelchairs and even other everyday products like iPhones and iPads.

It may not seem like it to a person who has no sensory or motor disabilities, yet all apple products were designed with accessibility and intergration as their base principle.

There are obviously other computer operating systems, programmes and technologies available.  But as a Mac (made famous in a Mitchell & Webb sketch) which I have been ever since I studied at university; way back when Apple Macintosh was for everything design and Windows was for everything administrative.

I have spoken before of my liking for Apple products, and in this I am not alone.  Molly from The Molly Watt Trust is a big believer and user of Apple products, her charity have also helped to support and fund those with Ushers Syndrome by funding an Apple Watch programme as she herself had found its features so very beneficial.

As part of an Ushers Social and awareness weekend (The Weekend that almost wasn’t) Molly was going to give a presentation similar to that that she gives to large companies about accessibility and awareness.

Her work as a Keynote speaker and accessibility advisor sees her working alongside Chris from Sigma (https://www.wearesigma.com/) Among others.

Molly explained the way in which she made use of the accessibility on her iPad.  She spoke of the obvious ‘voice-over’ and how she didn’t use it, how she found ‘zoom’ and ‘speak screen’ more neneficial to her.

She spoke of how you could set you home button triple click to bring you a list of accessibility options.  Including how to use your camera as a magnifier.

These little ‘nuggets’ of information were some that I was aware of and some that I wasn’t.

Since the latest iOS update there was also a rather clever new accessibility feature called ‘smart invert’ this is where the screen and text are inverted in the colours used, but the p have photographs are not……. Savi g confusion with colours when looking at images.

Chris spoke of how accessibility is in the every day, how as I said at the start of this post , “ when something is used and seen every day it becomes the ‘norm’” and how the work he does with Sigma and Molly is about making that a reality.

Molly explained how she found “Hey Siri” a great help; although this was when she realised that another piece of technology she was used stopped the others in the room from heading the response.

You see, Molly wears ReSound hearing aids; hearing aids that stream her iPhone and iPad directly and clearly into her ears.  Just as if she were wearing headphones!

Molly’s work has seen her work with ReSound and it is through this work that I have followed her and learnt about the fantastic products that are available.

Molly and the work she does through her company Molly Watt Ltd is paving the way for those with sightless, Ushers and hearing loss.

This masterclass have me some fantastic information to work with, some new connections to talk to and more importantly new friends who enjoy similar struggles to me.

The session was just a snapshot of what Molly and Chris do when talking to big companies, where there is often very rarely anyone with additional needs in the audience.

But it was enough to make me feel confident that accessibility becoming part of ‘the notm’ Could be a reality in the not to far distant future.

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The Weekend that almost wasn’t

Those of you who have been following me for some time will know one of my mantra to life is:

Have dog, will travel.

And with this mantra in place and a connection made through the power of Facebook, when a fun social event that would be followed up by an information and tech based learning event popped up; I found myself booking a hotel and myself for an evening with an Amy Whinehouse Tribute act.

The Facebook connection was that with the talented Molly, The founder and inspirational woman behind The Molly Watt Trust, along with the younger company of Molly Watt Ltd.

With my (relitively) recent hearing loss, I had used my ability to connect through Facebook to link with groups that supported those known as ‘deafblind’.

Having made contact with Molly at the beginning of my blogger journey, along with having a guide dog connection with her I had taken more of an interest in the work of The Molly Watt Trust and found myself naturally drawn toward them with my increasing issues around my sight and hearing loss.

So, when this weekend came up to join in on a ‘social’ and learning based opportuity arrived.  I jumped at it.


What type of journey would it take to get from my own home town to Maidenhead?

And from the station to the hotel?

The hotel that was hosting the dinner on the Friday and the Ushers day on the Saturday was on hotels.com, so I booked my room and set about not having to worry about travelling between venues.

The price was right and would save me additional travel; it was all falling into place …..

……. Or so I thought!

I was looking forward to the event and had everything in place, so now it was just a case of picking which shoes to pack to go with my dress.

After all, not having to go out of the hotel other than to allow Fizz to spend meant I could pack the hot pink heels without the worry of walking any great distance in them.  Not because I can’t walk in heels.  Rather I prefer to be in flat comfortable trainers if I am walking in an area I am not aware of, or in the dark, where I find more difficulty than I do if it were daylight.

Come September 15th my case was packed, my train ticket was collected and off with Fizz, we were on our way.

And then came the first of our hurdles…… Reading Railway Station!

This station is something from a futuristic movie; a large metallic, vast and somewhat oversized pedestrian gangway, which is accessed via long escalators (and multipul lifts) to enable you to walk safely away from the trains to any one of the stations many many platforms.

Yet without a clear indicator as to which train leaves from which platform.  And more importantly because I am well aware I may have missed the obvious large screens giving this information I need I couldn’t find any members of staff!

I only managed to find staff on the actual platforms as and when a train arrived.  Not ideal, as some of the staff I found actually arrived and were set to depart with the train….. So couldn’t direct me around the station.

It was ok though, I wasn’t going to let this get to me, I had managed to find Starbucks on my travels around the station, so when I found the platform and train I needed it was time to grab a nice coffee for me and a bowl of water for Fizz while we waited.

We (Fizz and I) arrived at Maidenhead and out came Google Maps.

It was at this point I realised my error.

The Thames Riviera Hotel (where the dinner and information day were occurring) was not The Thames Hotel I had in fact booked my room for the night!

They were so very close, just a short 5 minute walk along The Thames between the two, yet they were very different hotels.

This was when panic started to kick in.

How could I have made such a simple mistake?

How had I got it SO wrong?

A quick message in a Facebook group about the event and I was calmed.  I could do this.  I am a grown woman; who just happens to have an eye condition and hearing condition that may make life a little more of a challenge at times.

But I am strong and independent.  Who just happened to have a blip.  That was all it was…. a simple blip.  I had come so far, the hotel was already paid for, it would be silly to turn around and go home now……. Right?

So, as I said before.  On went Google Maps and off I went.

With hearing aids in place, I had to rely on holding my phone to hear the directions, while trying to keep out of the bright sunshine to roughly follow the blue line.

I didn’t even realise my first error with this.

Maidenhead Railway Station has 2 exits.  And I found myself leaving via the small, unassuming exit.

The second error came when I misheard a direction.

While walking alongside busy traffic I was sure the direction had been to walk forward.  Sadly, it hadn’t.  It had been to turn right.  And by the time I had realised my error, in true Google Maps programming, my route had been recalculated.

A walk that saw me walking along an almost non-existent path beside a dual-carriageway.  Walking into a multi story car park attached to a local Sainsburys store to find a foot bridge to cross the aforementioned carriageway.

A footbridge that landed me by a leisure centre and bowling alley just as the rain started to get heavy.

I bit the bullet, I went into the bowling alley and collected the telephone number for a local taxi.  Upon calling the firm, I explained my location and where I wanted to go, no problem a car could be with me within a few minutes.  So I kindly mention I have my guide dog travelling with me; that was when suddenly a car would not be available for almost forty minutes.

So, I gave up on the idea of a taxi and returned to my trusted phone and four-pawed companion to find the hotel.

This was a journey that took us another twenty-five minutes and a desperate plea to my best friend for help and linking my location on Google Maps to his Google Maps; and an hour after we had left to station to walk the seventeen minutes to the hotel, we arrived.

Both Fizz and I were damp (actually that was an understatement)

The doorman at the hotel instantly took control.

He collected my case and walked us to our room.

He commented on my damp dog (which I instantly apologised for), which he would hear nothing about.  He left us for only a few moments, before returning with an armful of towels.  He explained that these towels were clean, yet had lost their crisp white finish, so were no longer used for the guests……. But would be absolutely perfect to rub down my soggy dog with and give her a comfortable soft bed to dry off on.

This was too much, I managed to thank him before closing the door and collapsing in tears on the floor.  The anxiety of the day was taking its toll. But with a nudge from Fizz (I like to think as her ways of asking if I was ok.) I realised it was all going to be alright.

A conversation with my best friend put my mind at ease regards the hotel I was staying at and the hotel I was set to attend for dinner.  A dinner for which I was going to wear hot pink heels, that I would not feel comfortable walking outside (For the reasons I mentioned above)

What was stopping me wearing my trainers on the walk, with my ‘pretty shoes’ in my bag?  The answer….. Nothing.

This time, I not only looked on Google Maps for the direction, but I used Google Street View to actually walk the route virtually between the two hotels, a very straight five minute walk along the river, passing a park (perfect for spending Fizz) before crossing a large road to get to the hotel.

This time (although I would be walking in ‘twilight’) I was not leaving anything to chance!  Although, I did feel like I was taking my and Fizz’s life in my hands by crossing the road infront of the hotel, a road that was also one of the large bridges across The Thames River.

The rest of the evening passed with a blur of fun, entertainment and enjoyment, of putting faces to names and adding new friends into my life to enrich it.

I did wear my trainers for the walk; quickly changing upon arriving at the RIGHT hotel!  Switching them out again before leaving at the end of the evening.  One of the benefits of going to an event with others who have sight issues, is that such incidents are easier to hide.

I returned to my hotel, for a very comfortable and refreshing sleep, ready to return after breakfast for the chance to chat, chance to learn and more importantly, chance to find support and similarities with others going through their sight and hearing loss journey.


The walk The Riviera Hotel to the railway station was minus the difficulties of the previous day.  I even found the point where I had taken the wrong turn.  The turn that had caused so much anxiety.

Although the train journey home wasn’t without an interesting twist either!  That I found easier to write about at the time and you can read about it in  The day we caught the train

So, for the weekend that could have easily found me returning home, I discovered just how, as a strong independent (somewhat stubborn) woman, I am also human.  I make mistakes, but I also learned I am not to be so hard on myself.

This weekend did do one thing for me; it confirmed that I had to find a way of being able to channel my phone directly to my ears (as if I were able to wear headphones again)  I am still £4,000 away from the ‘ideal’ ReSound hearing aids I am fundraising for.  But there has to be an interim answer, isn’t there?




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And so it all starts again…..

Round 1: Paraclimbing competition for 2017 (2018 team selection)

EICA – Edinburgh International Climbing Arena, hosted by BMC and MSC.

One year and one week to the day of my first ever competition and I was back to do it all over again.

And in that one year and one week many things had changed.  I have most definitely changed; my climbing has most certainly improved and although my sight and hearing have had their setbacks (as detailed standing alone)    I thought I was in a much stronger position physically and mentally for this competition.

I wasn’t sure though, why I hadn’t been as prepared for the 13 hour drive that had seen us be diverted off the M6 and not arrive at the hotel until after 1am on Saturday morning.  After all, thanks to said sight and hearing impairments, I wasn’t able to share the drive with my CPC (Climbing Partner in Crime). The whole horrible job had been left to him to endure and in turn exhaust him mentally in ways, that as having never been a driver I can’t quite understand; yet one I can fully empathise with.

This year was different, this year I didn’t have the apprehension of a new Climbing Centre, the apprehension of never having competed before.

This year I had a bench mark; a place to beat and a score to improve upon.

This year I always wanted to EARN my podium place (not just get it by default-having been the only competitor last year!) Which although I couldn’t guarantee I wouldn’t have competition I was setting myself a personal goal to get me up on the podium.

After a bit of a wobble I found myself ready to set about the day.  My first move was a bouldering problem which was actually marked as the hardest of my 3 problems, but it wasn’t something I was aware at the time.

it was to start from a sitting position, it was also then I realised that my routes where only to cover 2 categories; interestingly the 2 categories where VI and Upper-Body Amptutee.

It happens some times that some routes are set for particular categories and not others, for example a route set for lower body amputees would probably not be suited to an upper body amputee.  And for a reason I do not understand it is often that the Vi and Upper-amputee are grouped together.

All competitors (from each of the 9 categories) had the same Boulder 1 and 2, in addition to Climb 1 and 2, but when it came to the 3rd of each problem this was where the VIs and Upper body amputees had a different  problem on each.

This meant that the queue of competitions on these routes were much smaller; hence my school girl error of actually doing my hardest first.

 Use of my back, sat crouched on a smalll foot hold with my right arm out to the side holding a large pink hold.

So, going backwards I then completed with a flash (getting to the top on 1st attempt) Boulder 1.

Image with my on my halls up above my head on a hold ready to step up

I wasn’t as successful on Boulder 2, where I misread my footings and started off all wrong, a silly error I repeated on my following attempts.

Image of me on Boulder 2 struggling to get my feet and hands right to move forward

Time for lunch and freshness break for Guiding girl Fizz, who had made herself lots of friends while benched as I climbed.  And was sporting a slightly grey colour around her ears; afyerall a black dog around all that chalk isn’t the best mix!

Fizz cuddled up on the shoulder of another climber

Then it was onto the climbs. (Which unlike the Boulder, you only get one shot)  Climb 1 was over before I realised, it was a great warm up climb and one I didn’t need any guidance from the ground on.

Climb 2 was a busy climb, with each and every Climber using it I got to enjoy watching (through the camera on my iPhone) the others who went before me.  It was a much higher climb, with a column and yellow holds on the grey wall.  It was time for me to climb, just as my CPC had returned from completing his 3rd Boulder (not the same as my 3rd Boulder) he told me how he had scraped his knuckle on the wall and would just need to sit and rest.  (I later discovered that he had popped a tendon and actually had to have it strapped up and imobilize his middle fingers)

So, off I went and got myself tied in for the climb.  I was about 2 m off the ground when I realised I didn’t have the support.  My ground support wasn’t there, I was on the climb alone and had to up my game and concentrate on my hands and feet.  I heard no instruction, I just had to focus and more importantly; remember to breath !!

….. Something is very easy to forget when I climb…..

It was a long climb, it was a climb that went from left side to right side and back to left, it wasn’t easy with the little contrast, but I did it.  Or I hoped it had!  When I got to the rope top (the rope didn’t finish at the top of the wall) I reached around but couldn’t find another hold, I had to just hope I had the last one, but I was worried I had missed it!)

Thankfully coming down I confirmed with the judge, I had got to the final hold and I had flashed the climb.

Phew….. I could relax.

It was then I discovered my CPiC’s injury and worked with him to support his injury to enable him to finish his own last two climbs.

And given the shortage or judges, there was a fair wait for me to finish my final climb.  I was however able to watch two of my fellow competitions complete the climb (yet as they were both upper body amputees, their climb was different to mine…….. Even though it was the same route and wal)

It also gave me the opportunity to watch my CPiC complete his climbs too.

Then it was time for my final climb; just in time too as they announced it was time for the last climbs.

And this climb looked like a great contrast; black holds on a light grey wall.  I hadn’t worked out why my fellow climbers had ignored several of the obvious holds, that was until I got on the wall.

The ‘obvious’ holds were in fact not holds at all, they were black gaffer tape taping over quickdraws and other such climbing accessories.  A feature that had apparently been on the other walls too.  But as the holds on those routes weren’t black, I hadn’t even noticed them.

I took on the climb, it was most certainly a challenge.  But a fun challenge at that.


Image of T climbing on a grey wall with black holds, while being positioned in a capital K position.

I had a move planned in my head, I moved my feet to make it an easier set a ste and then ….. OUCH!

I had missed it, it was such a simple move, but one I never made, instead I scraped my elbow off the wall as I dropped quite far. (My belay has been getting ready to take up my slack, which gave me more rope, sc I when I missed the move he found himself unexpectedly giving me more rope-which was no issue as I was fairly high up the wall!)

It was the final climb though, I had no second chance and one I am proud to say that “I climbed until I fell.”  Not something I had done in previous competition; not something I had been doing while climbing in general until very recently.

And yes, I fell….. But it felt AMAZING !! I climbed until I couldn’t climb anymore.

And it got me a Silver Medal!

Photograph of me & Guide Dog Fizz stood on the silver podium with mouth my fellow competitors stood on the gold podium tithe right of me, with the 3rd competitor stood on the bronze podium to her right.

Out of the 4 competitors in my category I came second.  A medal I am more than proud of.  And can’t wait to improve on at October’s competition!

Roll on round 2, when I get to climb at The Castle !!

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There is no witty title for this one, no sarcasm and no humour; I am without.

This is one of those few blogs where I just open my heart up.

This weekend has been full of emotion.  It was a weekend that had been planned to be fun, full of laughter and enjoyment with my daughter, my best friend and his son; thankfully they appeared to enjoy it, although maybe by the end of the time away my upset began to show.

It would appear; if only to me that by hearing less I am actually not able to see as much either!

My sight has not changed by any great degree, but when I find myself struggling to hear in a situation, I also find seeing more of a struggle too.

Maybe it is because I am not getting the sound clues that I rely so heavily on to fill in the gaps that I miss with my vision.  Maybe it is totally in my head (as some have suggested)

All I know, is that which ever it is.  It has completely thrown my idea of the world upside down and has left me feeling RAW and unable to cope.

I have cried, I have screamed and I have hidden it all from my daughter.  She doesn’t understand, mostly because I am not sure that I even do.

How do you explain RAW to a child?

And if you do know, can you please explain it to me ?

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Raw Emotions

I have tried to think of a witty title, something to grab your attention …. Words really are failing me on this post though, so just going with the simple choice.

I have been struggling for a while, I have been fortunate to be able to talk to close friends, able to ‘gauge’ the reaction.  There are a few more I wanted to tell, but time and my own worry has stopped me.

Keeping it simple …… Not babbling on.  So, do excuse me if this sounds unemotional.  I don’t know how else to say it.

I am loosing my hearing.

So, it is said, those 5 little words and it is out there…… I have known now for a little while, it isn’t easy and I am not writing this for sympathy.

I’m writing this because it is getting harder and harder to hide it.  Saying “Pardon” sometimes three or four times, not being able to hold a conversation easily as a passenger in friends’ cars.

Its confusing, I can still pick up a conversation across the room, yet not hear the person beside me.  And the prognosis …. It will only get worse.

I am still awaiting my hearing aid appointment from the nhs, it could take upto another THREE months for them to book me in, I have however spoken with my consultants and they are putting appointments in place for me to confirm exactly the kind of deafness I have.

All early indications push towards it being a form of Ushers Sydrome, a condition that is part of the RP spectrum; Retinitis Pigmentosa Is the family that my eye conditions stems from.  And hearing loss or ‘Deafblind’ is another strand.

Those with ushers are either born with hearing loss or sight loss and the other sensory loss occurs later.

As someone who was only categorised as ‘severely sight impaired’ 8 years ago, having been born with the condition …. I am feeling quite numb about it all at the moment.

Those close to me have noticed something is up, but I haven’t been able to tell them all in person, either because of Busy diaries or because I haven’t been able to find the words.

(which anyone who knows me, knows I am not often stuck for words!)

Just like my sight loss, I am not going to let my hearing loss take away my sense of humour or change the friend I am, it’s just not an easy time right now and it’s all a bit of a struggle.

Thank you for taking the time to read, I appreciates it.


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