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. 

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? 

Hello 2021

Hello 2021. 

So last year was a bit of a wash out wasn’t it? I wrote a blog about the books I’d read, looking back on it now I did not read that many. Although the ones I did read were very good. So this year I’ll try read some more. 

One of the good things to come out of last year was purchasing my own domain name, pipxar.com. It was a really pleased with this as it got me back into blogging. After looking at a variety of websites to host my blog and talking to different people I settled on wordpress.com. I think it was a good choice. I didn’t bother with the email address though. I just kept using the old one I had. The main issue I had setting up my domain was that I used to call my blog Random Musings. This domain was already taken though so I had to come up with something different. For a bit of a joke me and my bother thought Pipxar might be a funny choice. Turns out it was an unregistered domain and I went with it. 

The other good thing to come out of 2020 was my decision to start a bit of fundraising for two amazing charities. One is The British Heart Foundation and the other is The Children’s Heart Surgery Fund. They are incredible charities which exist to help support those living with heart conditions. If you’re interested then click here and you can follow my journey as I aim to raise £3000 by the 21st of August 2021. 

Whilst writing this blog I took the opportunity to partner with my friend Beth, who is a completing her BHF funded PhD. I would definitely check out her blog. She’s very passionate about what she does and about getting more women into science. Check out her blog, it’s pretty cool. 

I think this year I will just continue with my blog and fundraising. I also aim to continue reading more. I use Audible because I’m Visually Impaired and it really does help me get more joy out of reading. I used to love wandering around Waterstones and buying books, but I soon realised audiobooks would have to be the way forward. Reading has always been something I enjoyed, but I slowly started to realise that the reason I was not reading as  much as I liked was because my Nystagmus was playing up even more if  I read physical books. Nystagmus, for those who don’t know, is an involuntary eye movement. It makes you feel like you’re living life on a roundabout and you feel sick. Check out my blog here

Anyway, thats me for now. I’m going to go. I’ll check in again later. There are a few ideas I have for my blog, with the help of my new moleskin notebook I will hopefully be a bit better this year at planning out my posts and getting them scheduled. 

I wish you all a happy and safe 2021!

See you soon, 

Philippa B. 

Fundraising Update

Featured

Hello all,

Today is the 11th December. We’re just sorting out the Christmas tree and the lights have been put up outside. Last night I didn’t sleep to well so I’ve not been able to do everything I wanted to do today. But I have created my Facebook group to try get people more aware of my fundraising on Facebook.

So for those of you who have just stumbled across this blog here’s what my fundraising is all about:

I was born with Congenital Heart Disease and had heart surgery at a week old. I had heart surgery at Killingbeck Hospital in Leeds. Next year will be my 30th Birthday and a big milestone since my surgery. Therefore I have decided to try raise £3000 for The British Heart Foundation and The Children’s Heart Surgery Fund.

In order for me to raise this money I will be doing a number of things throughout the year. First of all I am doing 660 miles, broken down over 4 groups of 50 days. I have already done 100 days where I’ve done 278 miles. I am now onto my 3rd lot of 50 days. Where I need to do another lot of 180 miles. To do this I am counting my steps taken on a daily basis and cycling on the bike in the garage.

I have been in the T&A where I talked about my fundraising, my heart surgery and why I am choosing these two charities.

So far I have raised £732, that’s £899 with gift aid. Thank you to those who have donated so far! Click here to donate.

Screenshot of fundraising goal, £3000, total raised £732, with gift aid £899.

According to the BHF:

Heart and circulatory diseases kill more than 1 in 4 people in Yorkshire & Humber.

33 babies a month are diagnosed with a congenital heart defect in Yorkshire & Humber.

Around 210,000 people are living with coronary heart disease in Yorkshire & Humber.

These are some truly horrible numbers to have to take in. But there is hope. Which is why I need you to help me raise this money for both the BHF and The Children’s Heart Surgery Fund. These charities aim to support those of us who have been diagnosed with heart conditions.

The Children’s Heart Surgery Fund are based in Leeds and do some truly wonderful work helping to support families from the moment they discover their child has a heart defect.

I have been to the heart unit many many times and the staff are lovely. They truly make you feel cared for and explain absolutely everything.

Please help me to make a difference to the lives of those living with Heart Conditions. Donate your morning coffee, £3 and share my page to get me to my goal.

I started the 3rd lot of 50 days on the 3rd of December and have already got my 180 miles down to 136.07. So I am on my way.

My next blog will go into the map I am working on and show you where in the map we are ‘traveling’ to. Click here to read more about my fundraising.

Thank you for reading,

Philippa B.

Fundraising

Hello, 

Some of you maybe aware that I am currently in the process of fund-raising for two amazing charities; The British Heart Foundation and The Children’s Heart Surgery Fund. I wanted to give you all an update on whats going on so far. 

I have been counting my daily steps and cycling on the exercise bike in the garage to build up my miles. First of all I did the distance from Bradford to Newcastle, we’re now doing Newcastle to Liverpool. From there we are going to do the distance to Bristol and from Bristol we are doing the distance down to Lands End. In total I am doing 660 miles. I aim to have this done by March 20th!!

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=PhilippaBarraclough&pageUrl=1 

A red heart with stitching up the middle holding it together. There is a needle and thread sat underneath.

A heart stitched back together.

Some of you are probably thinking this post is a little different to my usual blog post about Disability and you are right, it is different. 

However, what I need to tell you all is that I was born with Congenital Heart Disease. Who knows, this might have been the cause of all my Disabilities. We will never know.

One of the reasons why this challenge is hard for me is my curved spine. I have Scoliosis. The top half of my spine curves outwards and almost touches my shoulder blade. It leaves me in pain and means I have to take tablets on a daily basis. Once a month I go for a sport massage to help my back muscles as they get quite tight and very uncomfortable. 

This challenge is something I am doing for my 30th Birthday. I want to give back to these charities. The Children’s Heart Surgery Fund was partly founded by one of the Surgeons who is responsible for saving my life. I want to raise awareness for this fabulous charity based in the Leeds General Infirmary. They offer support to families and their children as they go through the journey from diagnosis of a heart condition right the way through all of their follow up appointments. They are there to support staff to support their patients to make their stay in hospital as good as it can be. They provide a place to stay for parents who’s child is poorly. They offer emotional support. This charity is truly wonderful and does so much to help the patients at the LGI. 

I am supporting The British Heart Foundation because they are working to Beat Heartbreak Forever. They are funding research into areas such as Circulatory Disease and Vascular Dementia. Their 750 stores go along way to help sell your old items and maybe they could be where you pick up your next outfit? 

If you want to see Heart and Circulatory Disease in Context then click here. These numbers will show you why I am doing my bit to help raise money for the British Heart Foundation. 

I will be posting more about my fundraising as we go into the next few months. It might not be disability related directly, but as I mentioned previously my Disabilities could have been caused by my Congenital heart Disease. 

If you can spare £5 thats £2.50 to each charity you will be doing something wonderful. Thank you very much. 

https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=PhilippaBarraclough&pageUrl=1 

Dyspraxia

Hello All, 

This week is Dyspraxia Awareness Week. When I started blogging, over ten years ago now, I started because I wanted to talk about Dyspraxia. Twitter allowed me to meet some people who were also Dyspraxic, which was brilliant. As time went on I started to blog more about Dyspraxia and Dyscalculia and then onto my visual impairment. 

For those of you who do not know Dyspraxia is a Developmental Co Ordination Disorder. It means I find movement and co ordination of movement very hard. I also find it difficult to co ordinate my thoughts so I can appear uncomfortable or not very confident. But I am. 

It took me until I was about nine years old to learn to ride a bike, I still struggle to tie my shoe laces. Buttons are a real difficulty. When shopping for clothes I have to make sure the buttons are doable. Doing everyday tasks when you have Dyspraxia is very hard. 

The best way I can describe it to you is this: imagine you’re just doing a normal thing, like making a list. 

Now say someone comes in and starts talking to you.

Then they start tapping you on the shoulder as well. 

Now someone else has come in and is also talking to you. 

They decide to start tapping away on the table. 

Then you get a phone call. 

Now one of those other two people has asked you to read them something. No reason. 

You have just remembered you are cold and want to put a jumper on so you start to do that. 

You’re on the phone, writing your list, trying to put your jumper on and those people are still talking and trying to get your attention while tapping away.  

It’s very hard to multitask. Being Dyspraxic is like multitasking all the time. You never get a break because everything takes so much effort and it is exhausting. 

Some things that can help those of us who are Dyspraxic are: 

Making a lists. 

Visual Reminders. 

Breaking information down into small chunks. 

Allow us extra time. 

When thinking about how you can help a person with Dyspraxia remember to be kind to them. Don’t over whelm them. When we get overwhelmed we become very stressed out. Help us to become better at organising our time. This can really make  difference to us. When we feel we are on top of things we are a lot more confident and can succeed. 

We may take a little longer at doing something, but thats OK because we have a very different mindset to everyone else. We are quite creative and you will see that is evident in our work. 

Don’t dismiss us because we appear to be all over the place. W jesuit struggle with organisation at times. But when we do get organised and sort out what needs doing and we plan. We are very efficient because we know what we’re doing when. 

Dyspraxia Awareness Week is every year 5-11th October. Celebrate our Differences and lets work to build a Dyspraxia Friendly World.