A few months ago, Sue decided to take on a fundraising challenge for Metabolic Support UK. Sue’s husband, Carl, lives with Pyruvate Kinase Deficiency (PKD), which affects how his red blood cells are broken down and means that he has to have blood transfusions every two weeks. For her challenge, Sue decided to give up alcohol for a whole year! In her latest blog, she’s sharing her newly rekindled love for hot chocolate!
“Well, hi again, guys.
Apologies that it has been a little while since I have checked in. There has been a good reason, I promise you. Drumroll please…….
At the grand old age of 50, I have become a student!
I have begun a degree in Creative & Professional Writing, hoping someday to make a living from it. What has, however, become abundantly clear is the complete lack of knowledge I have in the subject matter.
It is not good enough that I have read nearly everything and anything for much of my life. Oh no, there is so much more to it than that. For example, over the weekend, my given task was to create a blog. From scratch. I now have (many many hours later) a very healthy respect for people who do this on a daily basis and keep it uploaded with fresh content. This week, I am being asked to engage in scriptwriting. Hmmm.
Anyway, to alcohol!
Well, the lack of it anyway. I find that this, actually, is finally getting a little easier. Not in terms of “needing” a drink; I don’t think that “need” ever came into it. More in terms of just not thinking about having a glass of wine, maybe as much as I used to. I am becoming so used to a cup of tea of an evening, or with a steaming mug of hot chocolate with the colder weather setting in, that I don’t think so much about opening that cheeky little bottle. There you go. I might finally be adulting.
I have included a picture of my new, adored, Moomin mug full of the aforementioned hot chocolate. Because, let’s face it, who doesn’t want to look at a Moomin mug?
However, that is not to say that there are not times when I would have loved a drink. I am thinking particularly of one uniquely stressful lecture where I had to write a story about an altercation in a post office, then rewrite it in the style of metaphor, then finally in the language of smells. I was given around half an hour total. Let us just say that by the end of it, a large glass of red would not have gone amiss.
So finally, not to nag, but if anyone would like to add in a few more pennies to help the wonderful work of MSUK, that would be fantastic. You can donate here. I promise that I am suffering for the cause if that helps!”
If you would like to take on a fundraising challenge for Metabolic Support UK and would like some advice on how to get started, please email Maggie on margaret@metabolicsupportuk.org
Pyruvate Kinase Deficiency (PKD), which affects how his red blood cells are broken down and means that he has to have blood transfusions every two weeks. For her challenge, Sue decided to give up alcohol for a whole year! One month on, we’ve been catching up with Sue to see how she’s finding the sober life!
depend on when the hospital can fit him in. Consequently, he is looking forward to feeling less exhausted through a low HB. We are even considering going to sit outside a cafe with a cup of tea. I know, it’s amazing how such a simple action seems fraught with danger. Who needs bungee jumping for thrills?!
Are you looking to expand your baking and cooking repertoire? Experimenting with new recipes can be good fun and who doesn’t enjoy some variety at mealtimes. But do you find yourself asking why didn’t my bread rise? Or why does my pasta stick together?
differentiate between play time and the need to do school work, routines will help them adjust. Wake your child up at the usual time that they would get up for school, follow the usual “getting ready for school” practices and you may even want to get them to put on their uniform, so that they’re aware that today is a school day.
find ways to teach. There are lots of useful resources out there – take a look at our recommended resources guide at the bottom of this blog for further inspiration.
or the time of day and the app will suggest a meditation according to your mood and your current time of day.
ways. Plus, it has a happy ending. It’s one of our all-time family favourites and a must-watch!
Support UK!
Baking is a great way to relax and get creative at home. Why not try one of our low protein cupcake or biscotti recipes! Great to make with the kids or just for your own enjoyment. Remember to share!
merchandise that you have, to promote awareness of a cause that you support. Add the donation details of your charity to your photo to make it easier for your followers to send a few pennies along to your chosen charity.
could have a night watching astrology documentaries or space-based films, hold a star-gazing evening and teach others about the different constellations in the sky, or host a dinner party with space inspired foods!
Musgrove Park Hospital in Somerset to Guys St Thomas’ Hospital in London by the Children Acute Transport Service (CATS) team. It was a very distressing time for the whole family and we were told to prepare ourselves for the worst, as they honestly didn’t think Tayla was going to pull through. We were there for 3 weeks until one doctor came on duty and ran some tests for a Urea Cycle Disorder, and that’s when we were given the news that she had 
Tayla even decided she wanted to go as the word medication for World Book Day, so she could show all her friends exactly what she needs to keep her liver working properly.”
community in their local areas, enabling us to reach many more patients and families. They are also helping us spread the word by raising awareness and fundraising.
Our 
marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
“There’s no doubt, I was born to be a runner. I enjoy it. I like the thrill of getting out with the dogs in the crisp winter air, feeling invigorated as I pilot new running routes around the Cotswolds. The only thing, which really frustrates me, is when my Garmin has no signal, causing me to jump frantically up and down like a frog on a lily pad, so I don’t lose momentum. Yes, admittedly, I am now one of those people, who I used to look at and despise. This was usually from the confines of a pub, watching the vibrant streak of lyrca whizz pass the window
marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
Who 
of London for the London Marathon! We are always in awe of our incredible marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
community together to fundraise for Metabolic Support UK and to celebrate the life of Anna, their daughter, who very sadly died of GM1 Gangliosidosis, aged 1. They organised a classical concert music, which proved to be a huge success, as Sarah, Anna’s Mum, explains.
The concert was a rip-roaring success both from the turnout and from the feedback given on the night and since the concert. With family and friends spread far and wide, we knew not all would be able to come. So, alongside the concert, we also ran a Just Giving page to provide an opportunity for some of them to contribute. This was a brilliant idea! We raised £660 through our Just Giving page alone! With the money raised on the night and other donations received, we have raised a staggering £3,018.22! As a family, we couldn’t be prouder of this achievement and all for a cause so close to our hearts.
5. Do you have a favourite running route?
of London for the London Marathon! We are always in awe of our incredible London Marathon runners and their commitment to train, run and fundraise in support of Metabolic Support UK, whatever the weather!
We hope your training continues to go well Mike!
2. Raise Awareness
Connecting People
