I’m sorry for neglecting this blog so much recently. The longer it’s been, the more daunting returning to it seems. But I’ve decided to bite the bullet and try to write some kind of update so I can get back to blogging again. I’ve missed it.
In some ways it seems like a lot has happened since I was last blogging regularly yet in other ways it seems like barely anything has changed. But I suppose life is like that.
So where to start? I guess my physical health probably seems to the obvious place. But I’m going to try to keep things brief. I’ve had the usual health fluctuations but overall things had been mostly stable. I had Covid a few months ago, but thanks to the multiple vaccines I’d received and the antibody infusion I was eligible for, it only gave me very mild cold-like symptoms for about a week.
About 10 days ago I fell ill while at Disneyland Paris. I’m not going to go into details now but I’m currently receiving good care in hospital and am on the mend.
I’ve been really struggling with my mental health for months now and am still trying to get some professional support for that but NHS waiting lists are long.
Fluffy Thing has kept us all on our toes this summer with 3 emergency vet admissions within just a couple of months. He’s a very lucky dog though and has bounced back brilliantly. When we’ve both been well we’ve been enjoying attending scentwork classes together. He turned 8 earlier this month but is still just as mischievous as ever.
I can’t remember where I was with PAs when I last posted but K left back in the spring. It took a few months to fill her position but L was amazing with stepping up and doing extra hours in the meantime, meaning my parents could still go away on trips they had planned. In the summer I recruited S who is fitting in really well.
I’ve continued to spend the ‘better’ periods and days making memories so might share details and pics of some of these soon. In the meantime, thank you for reading x
Apologies for not posting for a little while. Things continue to be up and down (as I suspect they always will be with such an unpredictable body), but on the whole I’m doing relatively well. My particularly bad periods of physical health currently seem to be milder, shorter and further apart allowing me to have fun during the better periods. My mental health fluctuates and I’ve had some bed spells but as I’m writing this things are OK.
I’ll try to get some better blog posts written soon but in the meantime this is just to reassure any regular readers that I’m still chugging along. Thanks as always for reading x
On Facebook I like to share photos of the things I get up to during my better periods. Photos like this one, which was taken today when I went into town with my mum…
We were very happy browsing the charity shops and then stopping for hot chocolates.
But photos like the one above don’t accurately represent my reality. I don’t purposely hide things but like many people, my social media is curated to show those areas of my life which I want to share – the positives. I hope that they will make others smile and they also serve to remind me during worse times that better times will come again.
This photo was taken just 20 minutes after the previous one…
We popped into Waterstones before heading home so my mum could have a quick look at the books. But I ended up paralysed for 40 minutes, lying on the shop floor. I had my face mask over my eyes as it was too bright and my mum’s bag under my head as a (lumpy) makeshift pillow. The floor was hard and cold. I felt very vulnerable but my mum kept me safe.
This isn’t a rare occurrence but I don’t tend to share these photos/talk about these moments as much as the positive ones. They’re not what people want to hear about and they’re not what I want to be reminded of, but they are a significant part of my reality.
I try my hardest to be positive but that’s not possible all the time and like everyone I have my down days. Despite being very open about my physical health I tend to be less open about my mental health, but I am trying to change that. And writing this blog post is a step in that process.
Despite having shielded for long periods earlier in the pandemic and this current period of shielding not yet having reached a month, I’ve had a difficult week. I’ve been feeling low for a few days and had a big meltdown (and a very low day) on Thursday. I’m gradually starting to pick up again but am still not back to my normal self.
If you’re also struggling with your mental health you’re not alone. This pandemic is frightening and is severely affecting and restricting the lives of so many of us who are classed as vulnerable. It’s ok not to be ok x
And just to make you smile here’s Fluffy Thing investigating an online shopping delivery.
There are often times when I’m unable to leave the house, either because I’m shielding or because I’m not well enough. I like to have a variety of interests I can turn to and switch between to keep myself occupied. Having multiple interests also means there’s usually at least one activity I can do no matter how I’m feeling.
As I’m now shielding again I’ve had to remind myself of the different activities I can do to keep busy and keep my spirits up so I thought I’d share some of them with you. When I’m well enough I particularly enjoy doing activities that make me feel productive but due to my chronic illnesses I also have to ensure I spend time doing more passive activities.
Gaming is one of my biggest interests. I’ve always played on Nintendo consoles casually but began gaming more when the first lockdown happened last spring and I bought myself a Nintendo Switch. Gaming enables me to create and then achieve goals, socialise with other people, do things I can’t do in real life, escape reality and relax. My most played games are Animal Crossing: New Horizons and The Legend of Zelda: Breath of the Wild. I play different games in different ways depending on my energy levels.
I’m currently really enjoying doing jigsaws. My favourite are 1000 piece Disney jigsaws. My dad has made a few jigsaw boards from wood to hold pieces and jigsaws in progress so I can work on the dining room table but easily tidy it all away when the table is needed for meals or other things. I tend to start by separating the edge pieces from the middle pieces and then put the edge together before working on the middle. I usually take a couple of days to complete a 1000 piece jigsaw.
When I’m not feeling up to big jigsaws I like to do smaller wooden Wentworth jigsaws with whimsies (pieces shaped to a theme).
I often craft as creating things gives me a real sense of accomplishment. I’ve tried all sorts of crafts over the years but during the pandemic I did a lot of cross stitch, resulting in a Disney sampler. I have started a second but seem to have currently lost the love for it so I need to try to get back into it again.
I love keeping my mind active and one of the ways I do this is with puzzles. Everyday I like to do a concise crossword from the i newspaper or one of their crossword books. I also use a sudoku app on my phone daily and often do other puzzles from the newspaper.
I currently have an Escape Room advent calendar which is really making me think each day! I’m thoroughly enjoying it though.
I find decluttering or organising are great ways to feel productive and can be as large or as small a project as I want to do/can manage.
Other ways I keep my mind active are by playing along with PopMaster on Radio 2, learning languages with an app called Duo, reading science articles in newspapers, magazines and online, listening to podcasts and I’m currently trying to learn to code with apps. In the past I have also taken short online courses in various subjects but haven’t managed any of these recently. The same with watching documentaries.
If I can rope somebody else in then playing a card game or board game is something I like to do. My dad and I often play Rummy (a simple game) or Cribbage (which requires more brain power) together, my mum loves a game called Ligretto and I enjoy playing Disney versions of Monopoly with my PAs.
Some of my more passive interests are listening to (pop) music or the radio, watching TV and using colouring apps on my phone. I also end up aimlessly scrolling through Facebook a lot of the time.
Of course, I mustn’t finish this post without mentioning Fluffy Thing. Spending time with him always makes me happy. During worse days this may just be snuggling up to him or stroking him. On ok days I try to brush his beard. And on better days I may play with him, try some training or even go out on a walk with him. Luckily the latter can still be an option while shielding as long as we keep away from other people.
If anyone reading this fancies leaving me a comment sharing some of the things they like to do at home then I’d really appreciate it 🙂
Once I’d been double vaccinated against Covid (back in May) I started to cautiously go out and about again with the help of my PAs. I was determined to make the most of my better days after having shielded for so long. I had fun and made some great memories.
Following one of Boris’ press conferences on Wednesday evening my parents and I made the decision to shield again. We’ll all struggle with our mental health as a result of this but until more is known about Omicron we feel this is the best option to keep me safe.
We don’t do big Christmas celebrations but now we won’t be seeing my older brother for his birthday and Christmas and we don’t know if we’ll be able to see my younger brother at New Year.
I’ve got a variety of ideas (including blogging more) to try to keep myself occupied and keep my spirits up over the next few weeks and then we’ll review the situation again in the new year. I’m also hoping to get my 4th covid jab in January, fingers crossed.
Please try your hardest to stay safe and protect the more vulnerable during this frightening time x
Today marks 15 years since my small bowel, liver and pancreas transplant.
Things haven’t always been easy and I’ve had ups and downs along the way but I’ve tried my best to make the most of the extra 15 years I’ve had thanks to my donor.
Since my transplant I have: -Been able to eat and drink normally -Not had an operation for over 13 years -Not stayed in hospital for over 6 years -Been diagnosed with autism which has helped me to better understand myself -Seen more of the world – Florida, Kyoto & Paris, well Disneyland Paris -Swum with dolphins -Explored many UK cities -Discovered a love of live music and attended too many pop concerts to count -Furthered my education -Achieved my childhood dream of having a dog -Done some worthwhile volunteering -Learnt to drive -Made an intricate cross stitch sampler -Moved into a specially built bedroom/living space with wetroom attached to the family home -Met some incredible people -Seen my best friend’s eldest daughter grow from a baby into an amazing teenager and met & got to know her younger daughter -Spent more than one night away from my parents – the first time this happened I went to the other side of the world! -Employed some great PAs who enable me to be more independent -Made so many precious memories
I don’t know how much more time I have left but I’m determined to make it count. Maybe I’ll be sharing a similar post in another 15 years, who knows.
Thank you to everyone who has helped and supported me since my transplant and of course my organ donor and her family, without whom none of the above would have been possible.
If you’d like to sign up to be an organ donor or just find out more then please visit www.organdonation.nhs.uk
A couple of photos showing how jaundiced I was before my transplant. Jaundice is a symptom of liver failure and is caused by the toxins, which are usually dealt with by the liver, building up in the body.
In the first few days post transplant I was in intensive care and connected to a lot of machines.
A couple of pictures from the 12 week hospital stay I had post transplant. The first is from the first time ever I was able to eat and I chose to try a banana. And the second shows my transplant scar.These photos were both taken around 6 months after my transplant. The first is of me with my nan and shows how my complexion returned to normal once I had a healthy liver. The second is from when I attended an event with my parents and for once was able to join in with the eating after 16 years of just watching everyone else around me eat.
For the last few years my village has hosted a scarecrow competition in autumn. This year I decided to participate for the first time. The theme was heroes and my initial thought was that my organ donor was my hero, but it would take a bit more thinking to turn that idea into a concept for a scarecrow. Here it is…
My scarecrow was on display for a week and next to it I put a box of organ donation leaflets for people to take. I noticed lots of people looking at the scarecrow and was delighted to see a pack of Cubs discussing it with their leaders. The number of leaflets in the box was also decreasing.
The intention of my scarecrow was to raise awareness of organ donation and with 80 leaflets having been taken at the end of the week I feel that was I was successful in that respect.
It was also a lovely bonus to come second overall in the competition, I certainly wasn’t expecting that!
This week (13th-19th September 2021) is World Childless Week – a week to raise awareness of the childless not by choice community.
1 in 3 pregnancies end in miscarriage. 1 in 5 women reach 45, childless. 48.5 million couples are childless.
An easy way to help is to be aware of which phrases can be triggering and try to avoid using them as you never know who may be childless not by choice. Making a conscious effort not to say the following (or similar) could really help someone who is having a tough time:
“You’re so lucky not to have kids.”
“You don’t know pain or tiredness until you become a mother.”
“What do you do with your time? What a waste.”
“At least you can have a lie in, I’m exhausted.”
“Have mine for a weekend, haha!”
“Look on the bright side.”
“Children are expensive. Look at the money you’re saving.”
“It’s not for everyone.”
“Who will look after you when you’re old if you don’t have family?”
“Life is meaningless until you’re a mum.”
“As a mother…” being used as a way of implying you have more empathy because you’re a mum.
“You wouldn’t understand, just wait til you have kids.”
“I know exactly what it’s like. I’m in the same situation because I want ANOTHER child.”
“It must be nice only having to worry about yourself.”
“You don’t know love until you have a child.”
“I’d be so bored without my kids. They’re everything to me.”
And please never ask someone about their pregnancy/when the baby is due unless they have told you that they’re pregnant as this can be very upsetting to someone who is childless not by choice. I’ve been asked before because all my abdominal surgeries and IBS mean my stomach is a bit larger than average and I thought that was bad enough, but I recently heard of how someone was asked about their pregnancy/when their baby was due multiple times following an emergency medical termination followed by a hysterectomy. So unless you know for certain that someone is pregnant please keep quiet.
Don’t forget that all of the above can apply to men too, it’s not just women who are affected.
If you’re reading this as someone who is childless not by choice then there are support networks out there if you want to reach out. Being childless not by choice can feel very lonely at times, especially when your social media feeds are full of friends and relatives talking about and sharing photos of their children. Please don’t suffer in silence 💜
This is the last selection of Fluffy Thing photos for the time being. These didn’t fit into any of the previous posts but I thought they were still worth sharing – mostly because they’re just cute.
One of my favourite photos I’ve ever taken of Fluffy Thing. He looks so sweet & innocent, haha!This was my dad’s idea! I’m surprised Fluffy Thing cooperated.One of his favourite spots – in the sun & with a view out of the front window. I thought he looked particularly regal here.That snout.Asleep on his antler. I can’t imagine that being comfortable.Snuggling with Croc. It’s very unusual for Fluffy Thing to cuddle up with toys.Sun seeking. It took us a while to find Fluffy Thing the first time he chose this spot, tucked down the side of the sofa.Sound asleep, totally oblivious to the fact that the cushion had toppled onto him!Looking particularly cute despite the scruffy beard.‘Helping’ us sort out some things for a yard sale!Comfy there?Fluffy Thing sitting behind the front door waiting for my PAs to arrive. This happens most days, sometimes as long as 3 hours before they’re due to arrive!I have no interest in football, aside from when England get through to the final of the Euros. Fluffy Thing however clearly couldn’t care less!One of the hottest night’s of the year & he somehow ended up with most of his body underneath his blanket.And stretch…Frog legs.Totally exhausted at the end of another busy day.
Molly's Musings 