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.
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.
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.
Pipxar 