Tag Archive for independence

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.

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.

Time REALLY DOES Fly when you are having fun

Fizz sat in front of a Mini the Minx statue on the street in Dundee

As someone with sight loss, it can often be quite painful to look back.

This is because looking back is a time when there was more sight, less struggles.

However, in this instance I am looking back to actually be able to measure how far I have come.

This time five years ago I was in the midst of training with Fizz, my second guide dog.

Training with Fizz was different in many ways to when I trained with Vicky.

For starters, I didn’t have the nausea that I had had during training with Vicky (as I soon discovered I was actually pregnant with my son)

I also discovered very quickly, that although trained the same, personality played a big part in how a dog behaved and works…

Unlike Vicky, Fizz was not a licker; she was however a very tactile dog and loved to be close, preferably touching me at any opportunities.

I was also quick to learn that Vicky had actually worked on me and twisted me around her paw!

This became apparent as we trained within our local supermarket.

(With Vicky) If I had forgotten to pick something up in the aisle we would walk up-to the end of the aisle, around to the next and complete a loop to get back to the beginning. As she (Vicky) would never just turn around and go back on herself.

I just thought that this was the way this was how things were done….. How wrong I was !!!

When going to do this same move with Fizz in the supermarket my GDMI (guide dog mobility instructor) asked what I was doing, so I explained to be told in a firm (but fair) tone

You turn your dog around. Right where you are!

My GDMI referred to my previous guide dog as a ‘double diva retriever’ as she was both a flatcoat retriever and golden retriever. Which only became more clear as my training with Fizz progressed. As I worked backwards from some of the ‘habits’ Vicky had me doing to suit HER.

Fizz was also different in that she was walking at the pace I SHOULD be walking at; I say should because I hadn’t realised that as Vicky had slowed in her older age, I had simply adjusted to that too. When actually my preferred walking pace was considerably faster. However to begin with, this made it feel like I was running to keep pace. Just 10 days in to training I was already finding each day a little easier and enjoying the long walks more and more.

If I am honest, I found it much harder to train with Fizz than I did with Vicky, however my life was so different from when I started training with Vicky back in 2009.

And a massive chunk of that was actually down to Vicky; down to the freedom and independence she had given me.

I was no longer the woman who relied on others to take me places, if I wanted to do something or go somewhere, with Vicky beside me I was able to achieve this.

Home life had changed to, when I trained with Fizz I was no longer working, but instead I filled my time with volunteer roles, climbing, socialising, walking and of course caring for my children.

And now I also had the time to be able to spend time taking Vicky out each day for a (non working) walk and play at the park so that she could enjoy her retirement at home with me and the children as part of our family.

Which is where she stayed with us until she passed away at the very beginning of 2018.

Fizz picked up on my hearing loss sooner than I did; she stepped up and kept me safe when I missed the odd bike or electric car.

She has been my rock.

She has taken the independence Vicky gave me and enabled me to expand on it, we have had some amazing and sometimes crazy adventures.

It’s hard to believe that Fizz has been my leading lady for five years now, however on the other side it is also becoming clearer that at eight and a half years old, Fizz is starting to behave in ways that show me that she is starting to slow down, isn’t as keen on some situations.

And that maybe; just maybe. It may be time to think about her happiness above my own and if it’s time to look into her retirement plan.

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.

Isolation

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.

Myth Bust: Blind Girls (and guys) Can Wear Contact Lenses

Just as someone who is severely sight impaired (blind) can and does often wear glasses; they are also able to (sometimes) wear contact lenses.

And why ?

For the same reason anyone else would wear contact lenses…. And for me, wearing contact lenses enables me to wear non-prescription sunglasses; among other reasons. (Vanity induced)

Until I wrote this post, it is part of me that very few know about.

Having had hard contact lenses when my sight was much more complicated as a teenager I did not get on with them.

Yet now with my simpler prescription I have been introduced to the world of soft monthly disposable lenses and for the past month or so I have been trialling them and find them so comfortable and easy to use and wear.

I thought I would write this post because earlier this week I was asked to ‘prove’ that I wore them. (By someone of authority-not just a random stranger)

This found me standing in the middle of a very busy London area, cleaning my hands, then moving and removing one of my lenses.

Which was followed by apologies and a long conversation about assumptions !! (And me getting a little bit told off for being ‘sarcastic’ )

My visual field is now at less than 3% and even with the best lenses I still can’t make out the top line of the eye chart, yet I still wish to make the most of my remaining vision and as I have found the days getting brighter (another part of my sight issue) I find contact lenses with wrap around (non-prescription) sunglasses help me with this.

I guess the point I am trying to make here is that it is the assumptions of others and people’s need for ‘proof’ of disability that needs to change; which is only going to happen by people asking questions (something most adults aren’t good at) and by people having conversations.

Those who know me, know I will happily have these conversations over and over again…. But I am just one person.

Myth Bust: This blind girl CAN shop!

Today I had a very rough encounter with a shop assistant. A very quizzical, judgemental encounter….. But rather than be negative, this got me thinking; unless you have a visual impairment or live within close proximity to someone who does, this may be a common misconception that anyone of my readers may also hold.

So here in a series of blogs I am going to look at busting some myths and misconceptions. Now as my blog is all about me (selfish I know!) what I write here works for me and is my point of view. Sight loss has a MAHOOSIVE variant in the many that it affects, so what works for me may not work for another. After all VIs (Visually Impaired) are unique Human beings with their own individual characteristics.

I personally love to shop! Muse through rails of clothes, feeling the different texture. I find some shops easier than others, I also have my staple ‘go to’ shops for my essentials.

When I trained with my guide dog (both of them) it was explained to me about how a dog works in certain environments. How a dog works in a supermarket for example is different to how they work in a clothes shop. And most of this is down to how we as humans move around in said shops.

Mostly because of how the shops themselves lay out their stock. A supermarket is quite regimented, with aisles and shelving. Where as clothes shops work with rails, displays and a more ‘hap-hazard’ movable approach.

So, when in a clothes shop I do not ‘work’ my guide dog Fizz. By this I mean I do not hold her harness handle and ask her to guide me around….. Manly because we wouldn’t get past the first row of clothes as the space between rails isn’t wide enough for Fizz to work properly!

So once inside a clothes store I will simply hold her lead, I will keep her on my left hand side and I will use my right hand to feel my way around the store, feeling out mostly for the ends of rails that could cause me issues if I bump them.

The stores I frequent regularly are used to me and Fizz, they even know that at times she will just lay down if I am spending too long looking at a section! After all she is a dog; she has no need or interest in clothes!

But when we go into a different shop (which doesn’t happen often) the other shoppers (as today) and the staff appear amazed by it.

Today’s encounter saw me being asked to leave. And this was because the store assistant believed that I was not VI and that my guide dog was just a pet. (Despite her harness and all her ‘uniform’ stating she is just that)

The store assistant had watched me move around, touching the clothes, but that my dog was just walking behind me. I did explain the main reason for this was because the space between the clothes was only just big enough for me to walk in, let alone Fizz to walk beside me.

I explained how I am trained with Fizz and how dropping harness means she doesn’t have to be responsible for trying to navigate in such an unnavigable space. To which the store assistant became very interested and was then asking questions out of interest not judgement.

Another point to make is that clothes shopping isn’t a rushed affair (not for me anyway) So I take my time, I can focus using what little sight I have left on navigating my way around. It’s not ideal and at times it doesn’t always work. But it is making the best of the situation.

For me, I prefer to shop alone for clothes, not be rushed or concerned with someone else getting bored or fed up with me. So this is how I work around it. It’s a quirk and it is following my guide dog training; which means I can’t be the only person who does this.

After all VIs shop, VIs go out alone and VIs above all else, have their own minds.

Personally I would not consider going clothes shopping using my long cane. As most clothes are hung on rails a cane could alert me to the floor being clear, but won’t alert me to the tops hanging from a rail (if the lighting isn’t right for me to see) And for this reason I do understand why some VIs prefer to shop with others.

So, I hope you have enjoyed this Mythe bust? Feel free to comment below on this subject or other myths you may have questions about.

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