The past few day have been rather hot. When the weather is like this it can be quite nice for a short period of time. However because we are not used to it in the UK the temperatures can be very uncomfortable.
Our houses are not designed for keeping cool. They are designed to stay warm. Which is not ideal when the thermometer is saying 45 degrees C outside.
During the hotter months of the year it is important that we stay cool and look after ourselves in the heat. It is nice to be outside but we need to enjoy the hear responsibly.
If you have a heart condition it is especially important to take care of yourself. The British Heart Foundation has some amazing resources on their website. Remember to stay hydrated, drinking plenty of water. You should also wear a hat and spend time in the shade.
If you keep your curtains pulled closed during the day you will stop the heat from warming your house. This is probably why in warmer countries they have small windows and shutters. To keep the heat out.
Anyway that’s it from me, I am far too warm and I have just had some lunch meaning I am now rather tired.
2. A heart attack is when one of the coronary arteries becomes blocked. The heart muscle is robbed of its vital blood supply and, if left untreated, will begin to die because it is not getting enough oxygen.
3. A cardiac arrest is when a person’s heart stops pumping blood around their body and they stop breathing normally.
4. Many cardiac arrests in adults happen because of a heart attack. This is because a person who is having a heart attack may develop a dangerous heart rhythm, which can cause a cardiac arrest.
5. A heart attack and a cardiac arrest are both emergency situations. Call 999 straight away.’
The above information is taken from The British Heart Foundations Website.
I remember in secondary school in a PE lesson we learnt CPR. It was a very strange lesson. Knowing that what you were learning could be used to safe a persons life was very strange. I do not remember getting a certificate for it. But I do remember being taught the basics and what to do in the event someone collapses.
Learning CPR is a vital skill you could save life. Here are some facts from the BHF (Click on BHF Statistics Factsheets-UK):
• There are more than 30,000 out-of-hospital cardiac arrests (OHCAs) in the UK each year.
• The overall survival rate in the UK is just 1 in 10.
• Every minute without cardiopulmonary resuscitation (CPR) and defibrillation reduces the chance of survival by up to 10 per cent.
• Performing CPR can more than double the chances of survival in some cases (ventricular fibrillation).
• It’s estimated that public-access defibrillators (PADs) are used in less than five per cent of OHCAs.
• The Chain of Survival (below) is a sequence of steps that together maximise the chance of survival following cardiac arrest
These numbers are very scary. I hope that one day we can live in a world without Heart Disease and all the other areas the BHF is working so hard to fight against.
If you want to do your bit to help ensure more people survive out of hospital Cardiac Arrests please learn CPR. You can find out how to do CPR here.
St Johns Ambulance has a course which is Certified for learning CPR. Click here.
When you are out and about keep a look out for any Defibrillators you might see. Take a picture of it and post it on social media. In doing so you are helping to raise awareness of their locations and ensuring other people know where they are. Also check out the National Database for your nearest Defibrillator. (Caution that this may not contain all defibrillators and it may not be accurate as to whether they are in service.)
Always dial 999 if you suspect someone needs an ambulance.
When it comes to CPR it is better for you to try and do something, call for an ambulance immediately. If you can do CPR, try. No one is going to say anything if you do it wrong. Very second that passes counts.
While you are doing CPR you are doing the work of someones heart for them. You are working to keep that person alive. That to me is pretty mind blowing.
Please consider all I have said. If you can also help by donating even £3 to my fundraising to The BHF and The Children’s Heart Surgery Fund, you will be helping to make a difference. Donate here.
Today’s blog is looking at the fabulous work the Children’s Heart Surgery Fund do.
For those of you who don’t know the Children’s Heart Surgery Fund are based in Leeds in the UK. They were set up 1988 by Duncan Walker and Dr Waterson. The charity was set up with the motto every child a childhood. The charity’s aim was to support hospitals and their patients to live a long and happy life. This remains their goal today.
Over the past 30 years they have managed to adapt and make the necessary changes which have enabled them support the patients and families which use the services at the Leeds General Infirmary.
The charity used to be based at Killingbeck Hospital which was a hospital dedicated to treating heart patients. In 1997 the hospital closed and the services were relocated to the LGI. This meant the charity had to relocate.
Why am I telling you about all this?
In August I turn 30. On the 21st of August 1991 I had open heart surgery. I was born with two holes in my heart and an interrupted aortic arch. I had open heart surgery at a week old.
I wanted to do something to mark the occasion, so I set myself a goal of raising £3000 in a year for this amazing charity and The British Heart Foundation.
Since the beginning of the pandemic every charity has found it difficult to keep going. The BHF have had to cut their research funding by half. The Children’s Heart Surgery Fund have had to relocate their office to one which cost less to rent. These are just two of the things which have been effected by the pandemic.
I have chatted to Lisa Community Fundraising Manager who works at the Children’s Heart Surgery Fund and Sarah, Family Support Worker they are both absolutely lovely.
A heart stitched back together.
How Children’s Heart Surgery Fund make a difference;
Over the past 32 years CHSF have spent more than seven million pounds supporting the Leeds Congenital Heart Unit, the 17,000+ babies, children and adults from Yorkshire, the Humber and North Lincolnshire treated each year and their families.
Congenital Heart Disease (CHD) is a heart condition or defect that develops in the womb before a baby is born. CHD is one of the most common types of birth defects, affecting up to 8 in every 1000 babies born in the UK. While for the majority of babies their conditions are minor, some are more serious, and they do not survive. However, thanks to advances in early diagnosis and treatment, around 8 out of 10 babies will grow up to become adults.
CHSF vision is to support hearts for life. Their mission is to support the Leeds Congenital Heart Unit to remain a centre of excellence by providing funding and resources needed to care for a patient’s heart, mind, family and future.
CHSF know that caring for people with CHD involves more than treating just the heart itself. They are there for;
Care for the heart
Providing revolutionary medical equipment
Care for the mind
Creating a positive and restful environment on the wards and funding play distraction equipment
Care for the family
Contributing towards living/travel expenses, offering parental accommodation and exceptional grants.
Care for the future
Funding research, clinical posts and projects.
Thankfully I am still here and approaching my 30th Birthday. I want you to know how amazing this charity is, how amazing the people who had a hand in saving my life are.
Thank you will never be enough. Please share my story and that of the charity and help me to raise £3000. Thank 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.
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.
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.
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.
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!!
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.