Tag Archive for deafblind

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.

Muse-ing over a few things.

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….

Then the NME review came out …..

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.

I’m adventurous …. But not stupid!

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.

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