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.
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.
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 planningout 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.
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 turn30 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!
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.
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.
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,
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.
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’.
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.
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.
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 booka 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.
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 neatlyinto a little leather pouch. Perfect for carrying around.
Using it so fare it is good forjust 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?
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.
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.
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.
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.
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!
Christmas is here
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.
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.
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.