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. 

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. 

Checking in

Hello, 

It’s a busy time of year again. Although with everything that is going on it should be a lot quieter this year. I am looking forward to Christmas, even though it will be different. 

Most if not all the shopping is done. I just need to wrap stuff now. So today I have I been getting on with some cleaning and I will be hopefully getting on with some wrapping if I have the time. The tree was put up last week so that is all done. Mum has made her centre piece for the table which is beautiful! 

I have been a bit busier the past few weeks than normal so I have been glad for today as a day off to get some cleaning done. If you’ve been following my blog for a while you’ll know I have a page on here for my fundraising. I am currently trying to raise £3000 for the British Heart Foundation and Children’s Heart Surgery Fund. So I’ve been cycling on the bike in the garage and counting my daily steps. In total aim to complete 660 miles. It has been very hard because I have a curved spine and it causes me pain on a daily basis. However, it is nice being able to do something for two charities I am very passionate about. Click here if you want to know more. 

For now, I am just sitting here writing this. I knew I hadn’t written a post in a while and wanted to drop in. I hope you’re all well. 

In terms of wrapping presents I am going to try get that done this evening, but being Dysrpaxic might make it more difficult. I have a very big box to wrap and its quite heavy so wish me luck. 

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.

Online Christmas Shopping

Hello all, 

I hope you are well. I thought today I’d write down some of my thoughts around ways in which we will be trying to adapt this Christmas. 

Given that we are currently under new restrictions here in the UK it is important to consider how we are going to adapt our shopping habits for Christmas. Shops are technically only open for click and collect which means you need to be more organised with your shopping this year. 

Last year I tried to buy gifts from local and or independent shops. I made this decision as I wanted to try find unusual and handmade items. Me and my Mum have already started to swap Etsy shops with one another. It’s nice browsing around on Etsy. You tend to find yourself filling your basket pretty quickly. 

I think for me this year it’s so important to try support any local business, artists, authors etc that you know, by sharing their website or photos of their work so that people can see what they do. We need to support our local business’s so that the people running them can stay afloat during these uncertain times. 

I am not saying to not shop at bigger business’s,  but maybe split some of your gifts. For example I love Lush! If you’ve seen my instagram you’ll know I love a good bath bomb. But every now and then I mix up my order and buy from The Cornwall Soap Company. they make lovely little soaps and amazing scented candles.

Another little shop is called The Great Yorkshire Shop. They are based in the Corn Exchange in Leeds and are very proud of their Yorkshire Routes. Who wouldn’t be? Check them out and celebrate all things Yorkshire. 

It’s interesting that shops are having to adapt to be more online focussed. It works better for Disabled people. However, just because you have an online shop it does not mean you are instantly accessible. For example if your site does not support screen readers (these are tools used by Blind and Visually Impaired People to have their devices read out to them what their screen is displaying) or if you have made videos but not paid someone to close caption them you are cutting out a percentage of a potential market who may really enjoy your products. As Disabled People we have a right to access the world just like everyone else. 

If you are unsure if your site is accessible then you can pay a Disabled person to check it for you. It’s better to have your website checked and ensure you are accessible so that you can then reach a wider audience. 

Anyway, thats me for now. I have back pain so I’m going to stop writing now. 

Check me out on Twitter or Instagram 

While you’re here please check out my Fundraising for The British heart Foundation and The Children’s Heart Surgery Fund

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. 

Dyspraxia Awareness

Hello, 

I am currently very busy as I have a lot to do. So today I got up and sorted out the washing, then did the washing up. Mum went to Tesco and did the shopping for us, some family members and neighbours. We have been very  busy. I have decided to take a page from my friends book and booked a whole day in my calendar to do nothing. This is something I need to do to recharge. Otherwise I will get very overwhelmed which can happen very easy. 

I am currently in the process of fundraising for The British Heart Foundation and The Children’s Heart Surgery Fund, based in the Leeds General Infirmary. Check out my fundraising page here and donate.

My organisation has become better but I could defiantly improve. I am a big user of the notes app on my phone. In the past few days I have decided to create a calendar on my phone specifically for my fundraising. Now everything to do with that, goal dates, phone calls, setting up events, can all go into there. I feel like this has helped to calm down a little because everything is not all up in the air. If it is written down then it is manageable. 

One other thing I did and continue to do is to keep on top of my inbox. A while ago a friend decided to organise his inbox and he posted a picture of an empty inbox on Twitter. I was jelous so decided to do the same. He was right, it is a very therapeutic. Keeping on top of this is something I quite enjoy because you can unsubscribe from all the nonsense you thought was good idea the time. It is also very satisfying haha. 

I think one of the reasons I have decided to write this blog is there has been a lot of talk on Twitter lately about Dyspraxia. One of the reasons I got into blogging was that I wanted to help raise awareness of Dyspraxia and to find other Dyspraxics, which is what I did. It can be hard living with Dyspraxia as it is not just about the lack of coordination which people always assume it is. It can be about coordinating your thoughts, time and energy. I often have a lot of ideas in my head but struggle to get them down. So I do rely on others to help me with this. 

The calendar app and the notes app are brilliant, you just have to remember to look at the notification when it pops up. Otherwise it is quite pointless. Organising my inbox was like decluttering inside my head. Making space for the important stuff and getting rid of the old stuff. Plus making way for anything new. 

Dyspraxia Awareness week is the 6-10th of October this year. I would recommend checking out the Dyspraxia Foundation. Also just search for other Dsypraxics on Twitter. We’re out there and we’re willing to talk to about Dysrpaxia so we can help you help us. 

Til next time, 

Philippa B. 

Twitter: @PhilippaB

Instagram: @VisuallyImpairedPip 

Remember to always be kind and give people the time they need. The world is a hectic place and its important to just take 10 minutes everyday to sit and just have a cup of tea. Nothing else. Just be in the moment. 

Dropping in

I am just dropping into let you know my blog is still here. I am still raising awareness for disability. Currently I am on a nice week off work. It’s been quite relaxing sitting and doing very little. 

It has been nice not being in work and just getting things done that I needed to. Like cleaning under my bed. Very exciting stuff I’m sure you’ll agree. Yesterday I made time to clean under my bed and behind my comfy chair. This needed doing, especially now it is coming up to that time of the year where those big house spiders seem to just appear from no where an announce they are moving in. 

As the weather was nice I was able to do some social distancing with friends. We went to the park. It was lovely to see them. I am still not happy with sitting in a coffee shop just yet. However I will get there. I just want to make sure the coffee shop is not too busy. I do miss my friends. 

The reason my blog has been a little quiet lately is I am in the midst of working on a fund-raising effort. I am doing virtual fundraising, check @PipsTurning30 on twitter and you can follow me on my blog too. I am aiming to raise £3000 for two amazing charities, The British Heart Foundation and The Children’s Heart Surgery Fund, based in the Leeds General Infirmary. If you are able to support me, please visit my Virgin Money Giving page where you can read more about my story. I will be sure to keep you updated and I’ll be talking to you about it properly very soon. 

This was just a quick post as I need to get going on my fundraising efforts. I am still here raising awareness for disabled people and helping to support you guys who are championing disabled peoples rights too. 

BBC and Accessibility

Hello again, 

I would like to make a note surrounding this blog and it’s contents. Yesterday I was making the BBC aware of Accessibility issues within their iOS BBC News App. Since writing the original post and logging a complaint officially the issue has been resolved. However my blog will still be posted as there are other issues within this post which also need to be addressed. 

Hello again, 

I have recently noticed that the BBC app v5.18.0 is not very accessible. There is no option to be able to increase the font size of the text within the BBC news app. However inside the settings on the app it says to change the font size on your device itself. I have the font size set as high as it will go. Still no luck. 

So I have decided to let them know, via Twitter and through an email to their accessibility team. This is what I have sent: 

‘Hello, 

I am using the BBC News app v5.18.0, the app is no longer able to increase the font size. Even though my iPhone font size is set to its maximum level. On the app it suggests to change the font size within iOS itself, which is what I have done. There is no way, as far as I can see to be able to increase the font size within the BBC app itself. 

I do not wish to use the Zoom feature, as this is not going to work for myself. I have a condition called Nystagmus which means my eyes wobble and with the additional motion on the screen using the magnification feature, my eye wobble will increase and it will begin to feel like I am on a roundabout. 

If you could address this issue and add in a feature to make the font larger, or tell me where this feature is, as I cannot find it? Thank you. 

Kind Regards, 

Philippa Barraclough.’

I thought emailing would be a great way to get directly to the team who needs to see it. I found the email address on this website. I clicked on the option to email the Accessibility team, sent my email and then got on with my day. However, I opened my emails and saw a reply saying ‘Address not Found’. I then decided to Tweet about this, as I was very frustrated. I tried to email the address again, just to make sure. Still same reply. After texting my friend she was also surprised at this. 

What is even more frustrating is that I had found this website- for the Accessibility Team, and assumed they would be the best people to contact. Given this is an Accessibility issue I am bringing up. On further reading of the website I have noticed that it says ‘Please note: the Accessibility Team can only deal with questions or comments concerning the My web my way site and related accessibility issues.’ So does this mean I was emailing the wrong people? I am going to go with yes. But why is the Accessibility Team only dealing with My web my way site? This is again confusing. 

After searching a bit more I found this page for FAQ’s. I then scrolled down and found out how to contact the Accessibility Team. This then lead me back to the original page I was talking about where I found the email which does not exist. Surely if you have an issue with something to do with Accessibility you should contact the Accessibility Team? Please help me out here. 

I am now taking to my blog to share my frustrations with you. How is it that an app can be updated and a simple Accessibility feature is taken away? This is ridiculous. A major organisation such as the BBC should be able to check that their app is accessible. It cannot be that hard to check it and ensure you have the ability to increase a font size. Before anyone suggests I use the Magnification feature built in on iOS, I would like to point out that I have Nystagmus which means my eyes wobble and don’t need the additional motion of the screen moving backwards and forwards as I navigate across the page to read a simple article. Is this too much to ask BBC? 

I then found a page which would allow me to complain in a different way. This page allows you to chose from  different areas of the BBC. I have opted for ‘General BBC’. As this is a general issue, first of all they have failed to make their app accessible. Then they fail to make their complaints system accessible by having a link to an email which does not work. 

It’s made even more ludicrous when you see that BBC has a website dedicated to giving disabled people a voice. Please check out BBC Ouch. 

Over the next few days I will keep an eye on my emails and see if I get a response. This is amusing as I have only one eye that works well enough to go about my day. 

Thank you for reading, 

Twitter: @PhilippaB

Instagram: @VisuallyImpairedPip