Hello again, 

Hope you’re all well. This week has been the first week in about four months I have had to leave the house for work. This involves me getting on the train. 

The first day back on the train was ok. The conductor helped me on the train and to find a seat. If someone offers to find me a seat I say yes. The reason is that I have learned it takes away the visual stress of having to do this myself. As the trains are busier than I expected this is something I will continue to do. 

When I go into the station I use on my way to work I found that the one way system has been changed. This now means there is no one way system on the platforms themselves. Only on the bridge routes linking the platforms together. This I can see making life a bit more difficult as things get busier. If they keep the one way system on the bridges it will really help. 

One ways systems are better for Visually Impaired and Blind people because we don’t have to worry about navigating people coming towards us. It really reduces the levels of visual stress. 

Once I am off of the main bridge and down towards the barriers things became a bit stressful. The reason being they are relaying the floor. So there are barriers which means my brain cannot easily find a quick route around them. It wasn’t too busy so I just took a bit of time and wandered slowly where everyone else was going. Once through the barriers I noticed the same thing. I stopped. 

The issue is not just the visual stress, but the unexpectedness of the train station having work done to it. Once I knew where I could walk I just focussed on the exit and made my way towards it. 

The next issue with all of this is that I am using my long cane. This means I am sweeping the floor to find out where things are. So when a surface changes it can impact how I am going to navigate my way through the station. After a few trips to work and home I am feeling a bit better about it. 

I just want the work to be quickly so I don’t have to deal with ongoing upgrades to this station. 

The work they are doing though is very good. It will definitely modernise the station which is something that has been needed for years. One of the biggest improvements is the new glass ceiling. It really lets in a lot of light. Which compared to how it previously was is so much better. The ceiling used to be old darkened wood. 

 

Please be mindful while you are out and about as a lot of people are feeling anxious. Disabled People find travel difficult at the best of times and we are having to navigate a new way of travelling. We want to be able to get out, get to work, see our friends. We just need you to be patient with us. Going back to normal is a scary thought for some of us. I am not looking forward to jam packed trains and people pushing and shoving me because they can’t wait. Lets just be nicer and be mindful of others as we ease out of this lock down. 

Be back soon, 

Philippa B. 

While you’re here please check out my fundraising page.

my guide cane is in the foreground, there are two blue seats the background facing me, with two 'Out Of Use' signs pace on the tops of the seat.

Where to sit?

April Update

Hello again, 

How are you?

I am dropping in to tell you about the last few weeks. 

It’s been quite difficult in some ways as I had a piece in the news paper about my fundraising. Talking about being born with Congenital Heart Disease is very difficult. It was hard to articulate my emotions around it and my feelings now I am going to be turning 30. Having my story shared in the paper was a good thing overall as it hopefully has allowed me to make other people feel less alone. 

One thing I have aimed to do with this fundraising is to share my story as it may help others feel less alone. When you are going through something as horrible as my family did, you are feeling alone. You don’t know what do. So by me sharing my story I hope to also make other people feel like there can be hope. Hope that their child can have a future. 

As well as raising the £3000 for the British Heart Foundation and the Children’s Heart Surgery Fund, I also want to encourage people to think about the long term impacts of Heart Disease. For myself it was just the beginning. If you have read any of my other blogs you will know I am also Visually Impaired. This has a massive impact on my life. Heart Disease is not just about your heart, it is everything else which goes with it. 

But this blog is not a woe is me, it’s a look what I am doing with the problems I have. I am aiming to raise awareness in the hope that others know that they are not on their own. That no matter what happens I hope they can find the support they need to live their lives as much as possible. I know I am very lucky. Even with all my other health problems. It’s about what you make of what you’ve got. 

Please do not assume that I am happy all the time, everyone has days where they feel down. Emotions are a part of life. If you need help I hope you can find someone to help. That help can even be in the form of just reading this blog to know you are not alone and someone out there understands a bit of how you’re feeling.

I have found it so moving hearing from people who they have in their lives who has a heart condition. It makes me feel connected to them in some way. It makes me really want to keep pushing on and raise this money. 

Me on the front page of the Yorkshire Evening Post. Headline 'I will be forever greatful'
Yorkshire Evening Post

In the past few days my fundraising has reached £1347!!! I have to reach £3k. That will be £1500 for each charity. If you can donate please follow this link. If you can share my page please do. Thank you so much for your kind donations in helping me to raise this money. It really means a lot to me.

Thank you for reading my blog.

If you want to follow me on instagram it’s @VisuallyImpairedPip

or my fundraising Twitter @PhilippaB 

What am I looking forward too?

Hello all, 

Since lockdown is now easing a little more I’ve been thinking about what I am looking forward too. 

In the past few months I have not been able to go for a sports massage which has been difficult as the weather has been cold and this causes me more pain in my back. The cycling I have been doing has been helpful though as it is low impact exercise which is good for me. It has also been good for my circulation as I have been moving around a lot less than normal. So the cycling has balanced this out. 

The other thing I am looking forward to is hopefully seeing my friends for an outside coffee catch up. I hope the weather gets a bit nicer, well it should, we’re coming into spring, so I can meet up with people. Socially Distanced and out side of course. Seeing people over a video call and normally phone calls is not the same as having a coffee and a cake with a friend. I think we can all agree we’re looking forward to being able to socially distance with a friend. 

It will be nice to also try get back to some level of normality. The issue I am concerned about as a Visually mpaired person is using public transport. Over the past year public transport has been much nicer for me to use, it’s been less crowded. This allowed me to safely, on most occasions, navigate a train carriage and find a seat. It has also been much nicer when travelling through train stations because the main one I use on my into work has implemented a one way system. Yes it does take a little longer, but the upside is I don’t have to navigate people walking towards me. Which is great. So much easier. 

What are you looking forward to as we go into the next few stages of easing out of lock down? 

While you’re here if you can help me out? I’m fund-raising for the British Heart Foundation and the Children’s Heart Surgery Fund. If you can donate to my walking and cycling challenge I would love it! Please follow this link https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=PhilippaBarraclough&pageUrl=1

Lands End Fundraising Update

Hello all, 

This is an update on my fundraising. 

Since the 21st of August 2020 I have cycled on the bike in the garage and counted my daily steps to complete a total of 667 miles for The British Heart Foundation and The Children’s Heart Surgery Fund based in Leeds. 

img_2276

The 667 miles is a number which you get when you add up the distance from Bradford to Newcastle, Newcastle Liverpool, Liverpool to Bristol and finally Bristol to Lands End. 

Donate Here

The reason I chose these locations is that all of them, except the final location have Heart Units dedicated to looking after children with heart problems. When I first started this and I was planning  out my route I made sure to include Leeds. 

Leeds is where the Children’s Heart Surgery Fund are based. They were set up in 1988 and have been caring for babies and young people with heart conditions and their families ever since. 

Read about them and their amazing work here. 

During this pandemic the charity sector has been hit hard. I wanted to do something to try and help raise money for two charities I care about very much. In August I turn  30 and also wanted to mark the occasion. What better way to do that than to try and raise £3000? 

Why am I doing this? I was born with Congenital Heart Disease. Read my story here. 

Now I need to decide what is next. 

My brother has been drawing me maps as I’ve gone along this virtual trip, like the one in the banner at the top. He also drew me a picture of me carrying Yoda!

img_0549

So far I have raised £1182 of my £3000 target. I am very grateful for all the donations so far. If you could help me share my story and help me tell more people about these two amazing charities that would really mean a lot to me. 

I would also love to thank Ellie at the BHF for her support and regular catch ups to see how I am doing. Lee for his fabulous article in the T&A! Sue who was the first person I spoke to from the BHF all those years ago and who gave me an insight into how charities are run. Every person I have ever spoken to at the BHF have been incredible.

Also Lisa from the CHSF, she always has a smile on her face and is always positive. Its great having a connection to a charity during its early years and being able to hear how they are doing now is marvellous.

I’ll be back shortly after I have planned out the next stage of my fundraising efforts. 

Follow me on Twitter @PhilippaB or @PipsTurning30

World Book Day

Hello all, 

I’m back after my Covid Vaccine, but that’s to be written about in another blog. I am feeling very grateful though that I received the vaccine. 

Today is World Book Day and for as long I can remember I have loved books. I always enjoyed English at school and it was probably one of my favourite subjects. No wonder I opted for an English based Degree in Media Studies. 

Do you remember in primary school when you used to get a new book? There was one occasion I remember trying to pick a book and putting it back and choosing from another basket. The teacher told me I had to chose a book which went alongside my reading level. This irritated me. I told them what kind of books I was reading at home and didn’t understand why I had to chose from the book box with my reading level. Eventually we came to a decision. If I read the books and brought them back quickly then I could move up the levels quicker. I did this and got to read harder books and proved a point which we all knew I could do, but for the sake of the system I had to have it noted down. 

Looking at a  book shelf, there isa clock on the all above.

Reflecting on this and the fact that it is World Book Day I have been wondering how many books was I aware of when I was younger which featured Disabled people? What is that representation like now? 

Looking back I do not really remember that many books, especially from when I was younger which featured Disabled characters. Thinking about this I have just asked my Mum if there was a character in the Biff and Chip books who was a wheelchair user. She says there was. 

For World Book Day I have done a bit of looking around and found that there are some great books available which represent Disabled Children. A great article I found was in the HuffPost about a variety of books which feature Disabled people as the main characters. In the article there are a number of different representations, the best part is that in some of the books the Disability isn’t even the main plot line. Which is fantastic. After reading it I sent the article to a friend who teaches in a primary school and they loved it.

Part of the problem is not just having books about Disabled people, but also having them be written by Disabled people as well. So you know that as a Disabled child  ‘hey this book has someone in it like me’ then they can be told the Author is like them too. It is about allowing people to see themselves in stories and know that the person behind the story is able to understand how they feel. 

Whilst looking at wether representation is better today than it was when I was in school I came across Pablo and the Noisy Party. There is a TV series linked with the book which is brilliant because as we all know everyone learns differently. Written on the books Trust Website is ‘This empowering series competently reflects neurodiversity and like the TV series, has been developed by writers who are themselves on the Autistic spectrum, and is based on real-life experiences.’ When I saw this quote on Books Trust it made me smile to know that the comment I made in the previous paragraph is trying to be addressed. Children need to not only see themselves in books, but know those writing them are like them too. 

The other part of the problem is having access to these books for all children. It can not just be the case that we talk about them only to parents of Disabled children. They need to be in book boxes in every school. Otherwise how does it just become the norm that the woman in the street is using her white stick to feel the floor beneath her feet and get around safely? Or that the man wears headphones in the supermarket and hums quietly as he puts his items into his basket because he could be Autistic? 

These questions need to be addressed and by writing this blog have made you a bit more aware that these books are out there. You just need to look. But them being out there is not enough. They need to be in classrooms and libraries and they need to be seen as the norm. Hopefully by writing this and also in sharing the book list with my friend I have done something to help make a difference. 

Here are the links below to some of the things I discovered whilst doing this blog. 

Until next time,

Philippa B.

If you have enjoyed this blog and would consider donating to my fundraising for The British Heart Foundation and the Children’s Heart Surgery Fund, please click here

Pablo and the Noisy Party https://www.booktrust.org.uk/book/p/pablo-and-the-noisy-party/ 

Fun in the Sun https://www.scope.org.uk/advice-and-support/storybooks-featuring-disabled-children/ 

Disability Horizons- https://disabilityhorizons.com/2019/09/8-books-with-a-disabled-character-as-the-lead-or-focus-of-the-story/

A Quick Update

Hello, 

This week I have been taking some time away from Twitter. That’s why my blog didn’t go up on Monday as it normally should do. 

Part of the reason for taking time away is the need to reduce screen time. Working from home is nice and I like it in some ways. Not having to deal with public transport. Not having to put up with people staring at me as use my cane, yes I’m Visually Impaired, I can see stuff- just not as much as I’d like. 

It has been nice not being on Twitter, putting my phone on silent and just spending time away from my devices. I’ve also had 4 days off in a row as I booked in some holiday. So this was the perfect time to take time away from my devices as well. 

Over the past two weeks I have found myself busy with work, which is another reason for me to have some much needed screen time. I get quite involved with areas which I am passionate about and then I tend to use up a lot of energy in doing so. Maybe this was a bit of burn out? Who knows. 

The other thing I have noticed is that I need to be kinder to myself with my cycling challenge. I feel as though I need to push myself more to get the miles done. Which I do, but I also need to remember that this is a challenge for myself to raise the money. I have been quite open about my Scoliosis and how it effects my cycling challenge. I am pleased with myself, I have raised £1087 without gift aid. The charity’s which I am supporting are The Children’s Heart Surgery Fund and The British Heart Foundation. I aim to raise £3000 before August 2021. Here is a link to my ‘What’s virtually happening page’. 

A yellow daffodil

So that is me for this week. Just a quick update. Be kind to yourself. Remember Spring is coming, so we’ll be able to play outside more soon.

I’m on Twitter: @PhilippaB

I’m on Instagram: @VisuallyImpairedPip

Finished Reading Debbie Harry Face It

Hello again, 

How are we all?

One of the things I decided to do more of last year was read. I didn’t read as much as I would have liked. So I’m going to try again this year. My brother bought me an Audible subscription and I really enjoy it. 

I have been told that with Audible you don’t actually buy the books. So that’s a bit of a downer. But it’s still a good subscription service. 

The book I have just finished reading is ‘Face It’ by Debbie Harry. I love Blondie and I think Debbie Harry is wonderful. It was really nice to read more about the band and how they evolved and changed so much over time. 

The thing which I did not check out before buying the book, because I was so excited it was there, was who was reading it. Which made for a wonderful surprise when I heard Debbie Harry’s voice. I’ve always loved Blondie and I think their music is brilliant. To be able to read about her life and the band was great. 

Seeing how much of an impact she herself had on the music industry and how Blondie changed and grew over time made it difficult to stop listening. The amount of women who were lead singers in Rock bands at that time was quite limited. So I think that is one of the reasons why I like Debbie Harry so much. She wasn’t afraid to try new things and she wasn’t afraid to challenge the status quo. It was great how she says she did what she did because she enjoyed it. She did it for herself. But it was said in a way that was not self righteous. She is a woman who is amazing at what she does and she isn’t afraid to go for what she wants. 

It was interesting to hear how Punk started to grow and evolve around the 70s and how she describes the difference between the scene in New York, LA and London. It was interesting because I don’t know much about Punk. I don’t know much about the culture. But to learn how she and Blondie were such a force in helping to shape that genre and culture was pretty cool. 

I genuinely enjoyed the book and I would urge people to read it. It came out in 2019 and is available on Audible. You get an accompanying PDF with fan art people have sent her over the years. The way she discusses her fans and the fans of Blondie is so nice. She loves receiving the art work from people and you can really tell that in her voice. 

In the book she also talks a lot about her relationship with Chris Stein. His book is one I will be putting on my reading list. 

Anyway, it was an amazing book, I loved it and I think you should read it too. Debbie Harry is incredible and I need to take a look online and see if I can find that Barbie Doll of her. I never knew there was one. 

One more thing, if you have enjoyed my blog please follow this link to my fundraising page. I’m in the process of using the bike in the garage and counting my daily steps to cycle 660 miles in about 200 days to raise money for The British Heart Foundation and The Children’s Heart Surgery Fund. 

Week Off

Featured

Hello again, 

This last week has been my week off. I don’t get a week off at Christmas because I have to work. So from last year I decided I would book a week off in January. It has been nice to relax, get stuff done and recharge. I also took the time this week to book  a week off in August for my Birthday. 

So I don’t feel like I have wasted my week off I have written down in my diary what I have done everyday. Even if it meant just writing ‘relaxed’. One thing I need to do more of is write down in my diary when I have a a day to just relax. Other things I have done this week have been to steam mop my floor, exciting I know. But it was on the to do list and now it has been done. Today I vacuumed the rugs….so clean and tidy. Gosh my life is exciting. Then there’s that pile of clothes which needed to be put away… it’s been put away. 

What else have I done? I joined two work meetings, which were very interesting. I know, dedicated. Even on my holiday. 

This week I have just taken it easy. I have taken some time away from my fundraising challenge as well. This is something I need to start up again. 

The nice thing about all of this has been I have had the chance to just listen to my audiobooks. I finished Steve Silberman’s NeuroTribes. This was a brilliant book, for anyone interested in Neurodiveristy I would recommend it. Something I will be looking to do in future is write more around Neurodiveristy.

After finishing this book I have started Face It by Debbie Harry. I love Blondie and it has been great to just sit and listen to her book. I remember once we had an own clothes day at school, I think I was in year 9 or 10 and I wore a Blondie t-shirt. None of the kids knew who Blondie were. I was quite offended by this to be honest. How can you not know? I am still disgusted even to this day… I loved that shirt it was brilliant. Makes mental note to buy new Blondie T-shirt. 

Another tick box for this week has been sending out some emails to just introduce myself to a newly published magazine- if you’re interested in learning more about Dyspraxia please sign up to Dyspraxia Mag. It’s important for us as Dyspraxics to talk about our Neurodiveristy and where we fit in amongst our Neurodiverse Cousins. 

The final tick box was emailing a journalist who wrote an article about their experience having a heart attack. I wanted to thank them for opening up about such an important topic which is very personal to myself. I don’t normally reach out and contact people, but this time I really felt the urge to contact them. 

Anyway, thats me. Until next time.

What I bought from RNIB

What I bought from the RNIB. 

Hello again, 

A few days ago my order from the RNIB arrived in the post. I ordered a Ambutech black leather cane pouch (MP39) and Optima folding pocket magnifier 6× (MAG85). 

One of the things I really struggle with is reading numbers on bank cards. On some new cards the numbers are not raised. They are printed on the card. The other thing with new card is the fonts are bit cleaner, I think the numbers on cards are a little bigger on my own bank card. Another interesting thing I have found about bank cards is they have a new little cut out in them for your finger to rest in. This is particularly helpful when you can’t see well. Rather than looking, you can just feel for the cut out.  

So back to this magnifier, its a 6x magnifier which I used the RNIBs article to check which size is right for me. The magnifier folds away into a little circular hard plastic case. Which you can the put neatly  into a little leather pouch. Perfect for carrying around. 

Using it so fare it is good for  just looking at quick simple things. I would not use it for reading properly though as having to move the magnifier sets of the wobble of my Nystagmus. But so far I am very pleased with my purchase. It was £18.50 which for something I will find very beneficial I think is a decent price. 

The second thing I purchased was the Ambutech black leather pouch for my long cane. The reason I bought this is because I find when I go out and about, pre covid, I find myself struggling with keeping my cane neat and tidy. It also gets frustrating when you have nowhere to prop your cane. Meaning you have to lay it on the floor. Which means it is not very clean at all. It’s very important to try keep the handle of your cane clean, especially with how things are. So if you get the pouch you can just fold your can away and not worry about it unfolding itself. This is particularly hand when you’re on a long car journey. So you can put your can cane your bag and not worry about it getting in the way. The pouch is £26.99. 

Believe any cane user when they tell you it’s frustrating that they are unsure where to put their cane in the car. When it is not stored properly it means it moves around and there’s quite a bit of noise. 

The question I have for any of you is, what do you use to make your life easier? 

Charity Challenge Impact

Hello all, 

I hope you’re doing well. 

For this post I thought I’d spend some time talking about the charity challenge I have been doing for The British Heart Foundation and The Children’s Heart Surgery Fund

Before I start I will just give you a bit of info about this challenge. I was born with Congenital Heart Disease and I had open heart surgery at a week old. My surgery was done by one of the founders of The Children’s Heart Surgery Fund, which is why they are one of the charities I aim to raise money for. Since the 21st of August 2020, until the 21st of August 2021, I aim to try and raise £3000. Due to the Coronavirus situation I am unable to go out and do bucket collections to aid my total. So I’m solely relying on my social media to try get the word out there.

Check out What’s Virtually Happening 

Heres a piece about me in the Bradford T&A

In order to raise the money I aim to complete 660 miles in total, by counting daily steps and doing cycling on the bike in the garage. Maybe more I haven’t got that far yet. 

What impact is all of this having? 

Doing this challenge is difficult for me for various reasons. The first is I have a severely curved spine. You may have heard of Scoliosis. Basically my spine is curved into an S shape, my spine is so curved that it almost touches my shoulder blade. It is very painful. I have to take breaks at work to sit down and I take painkillers everyday. I do stretches given to me by my physio, I also have sports massages once a month to release any tension which has built up over time.

My physio says the cycling is good for my back, providing I do not over do it. That I sit properly and maintain good  posture. Which I aim to do. Also because I am using the bike in the garage it is safer. When you’re Visually Impaired like I am it can be tricky finding something which can help to keep you fit, but you can also do independently. 

The other thing which is great about cycling is that as we have had to stay at home a bit more due to Coronavirus I found myself snuggling with my circulation. One of the issues I have is Circulatory Disease. I often get cold, my fingers and toes got numb and white, or purple. During the first lockdown period I found my toes going purple more often and my skin went all flakey. So I started to try move about a bit more. But there’s only so many times you can wander about the house. 

We ended up phoning the Doctors, they were really helpful and sorted me out by putting me back on some tablets I’d not been on in a while and giving me some cream for my toes to help the swelling go down and reduce the itching. It was rather painful. 

Later in the summer I decided to start cycling. It has really helped with my circulation. Although I am still on the tablets. Before you say anything, no amount of life-style changes will enable me to come of my tablets. My toes still go purple and my fingers still go white. But the cycling helps me circulation quite a lot. 

Besides this challenge helping me with my back, although I do have to be careful because it doesn’t stop the pain, it really helps with my core strength and it has the additional benefits of helping my circulation.

I am finding this challenge to be hard, right now I am sat in my for chair with my MacBook resting on a pillow so it is a bit higher up so I don’t have to bend my neck. If the benefits are better core strength and better circulation, then I have to just not push myself too far with the cycling. I am counting my daily steps on the days I am not cycling, so I do have to take it easy at times. 

Right now for example, my whole right hand side aches. But I am sat down, I am wearing layers to stay warm and I am not doing any cycling today. 

If you can please support me in my challenge to raise £3000 then please follow the link to my Virgin Giving page

I am not asking for a lot. I just want to raise awareness of a few things: 

My chosen charities and the incredible work they do. 

The impact of this challenge on my day to day life. 

The challenges I face after being born with Congenital Heart Disease. 

I am not one to sit and moan. I have a job and I do what I can to help manage the difficulties I live with. All I want is to help people see that if their child is born with Congenital Heart Disease, that there can be hope. The lovely people at the Children’s Heart Surgery Fund are there from the moment the family is given the news their little one needs open heart surgery. They ensure they have a hand to hold while it feels as though their world crumbling around them. 

The British Heart Foundation are helping to find a way in which we can make the lives of those with Heart Conditions, Vascular Dementia and Circulatory Disease feel like there is a future. Because there is. 

Hand drawn image of UK. BHF Lahore & different names on map to show my virtual route.
Where are we going?

The pandemic has had such an impact on our NHS and Charity sector. It has impacted areas you would never have thought about. Researchers who have had to put their lab work on hold, but yet their time frames to complete their research have remained the same. It is crazy. 

Heart Disease is Heartless, it doe not care about Covid, or what you were planning to do with your next holiday. If it is going to happen, it will happen. Which is why if you take a look on the BHF website you can find a whole host of things which can help you live a healthier lifestyle. Living healthier can have a major impact on your heart. Seems like an obvious thing to say. But it is true. 

Which is why I am trying to do a bit more cycling to help with my circulation and my back. If you can support me that would wonderful. Donate to my cause and lets Beat Heart Break Forever. 

Thank you.