World Childless Week

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 💜

Miscellaneous photos of Fluffy Thing

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.

Fluffy Thing outside

This post contains selection of photos of Fluffy Thing that were taken outside. I hope they make you smile

Here are some photos that were taken on walks:

This was taken when one of my PAs invited me to her house for drinks in the garden:

And these final few photos were taken in our back garden where Fluffy Thing chooses to spend a lot of his time:

Playing with the dog from next door when the fence between our gardens was being replaced.
Fluffy Thing surveying his kingdom from the highest vantage point!
Keeping one of my PAs company while I was having a sleep.

Thanks as always for reading. I hope to post again soon.

Fluffy Thing & I

Here are some photos of Fluffy Thing and I together. Please forgive my bed hair & bedclothes in some of the photos – I am chronically ill and wanted to share some realistic photos of the two of us in everyday life as well as on my ‘better’ days when we can get out together.

To start with here are a few photos from walks:

And this was taken when Fluffy Thing joined one of my PAs and I when we went out for a drink:

When I’m feeling up to it we do activities together at home. This one involved Fluffy Thing having to use his brain to get to the food:

Here are some photos of snuggles we’ve had together:

And sometimes it doesn’t have to be me, just an item of my clothing is enough:

Thanks as always for reading. Please follow and share. I hope to be back with another blog post soon.

Fluffy Thing causing mischief

I thought I’d share some photos of Fluffy Thing. I got a new phone last September (and don’t have enough energy to sort through the older photos on my laptop) so all of these photos have been taken over the past year.

There’s quite a few photos so I intend spread them over multiple posts. Of course I had to start with Fluffy Thing doing what he does best – causing mischief. His antics often make me laugh so I hope you enjoy hearing about them too.

My bedroom carpet.
Stealing a swede from the shopping delivery. This was his preference – not the meat or cheese!
And a cabbage (from a different delivery).
Triumphantly returning from a winter walk having stolen the nose from a snowman. I felt sorry for the child…
“What makes you think that I ate the peanut butter?!”
Yes, that is a nose print in the freshly baked brownie! My mum put it outside to cool.
Sorry for the poor quality photos. Fluffy Thing knew that my dad had butchered a deer in his shed and twelve hours later he was still determined to get at it!
Not a photo of the little monster himself but after my parents spread this on the vegetable beds Fluffy Thing went round and gobbled it all up.
Not sure how he managed to catch a live pigeon while on lead, but he did!
Proud of a crust he found on a walk.
Just a little dig in one of my mum’s seed trays.
The result of my dad not closing the pantry door (where we keep Fluffy Thing’s food as well as people food) properly.
‘Helping’ one of my brothers put a tent up.
Searching for scraps after some meat had been BBQ’d.
Determined to lick his way into a packet of cheese biscuits!
Fluffy Thing was too comfy to move when one of my PAs tried to change my bedding.

I didn’t realise until I started looking through the photos quite how many of Fluffy Thing’s antics are food driven!

I hope to share more photos soon. Thanks for reading.

Chronic illness anniversary

13 years ago yesterday I was 20 months post transplant and desperate to have my ileostomy, which was formed during my transplant surgery to allow closer monitoring of my transplanted bowel in the early period post transplant, reversed so I could be more ‘normal’ amongst my peers. I didn’t want this to get in the way of my studying though so requested for the operation to take place early in the summer holidays so I would hopefully be recovered in time to return to sixth form for the start of year 13 (or upper sixth to those of you who are a bit older).

Surgically the operation went perfectly but afterwards something wasn’t quite right. I remember that I couldn’t get warm and that my energy levels were reduced. I just didn’t bounce back like I had done after all my previous operations.

Around a year later I was diagnosed with myalgic encephalomyelitis (also known as ME or chronic fatigue syndrome/CFS) and in the years since then I’ve also been diagnosed with other chronic illnesses including adrenal insufficiency and functional neurological disorder.

Anniversaries like this bring a mix of emotions. Despite feeling more positive about my future now I have two fantastic PAs and my (often fluctuating) physical health being relatively good at this moment in time, it does draw my attention to how different my life is now than I imagined it would be as a 30 year old.

I try to be positive and not dwell on what my life could have been but I think it’s only healthy to sometimes give myself a chance to grieve for what I’ve lost as long as I then pick myself up and carry on.

Transplants are not a cure

I’ve had the idea for this blog post for a while but hearing some sad news this morning spurred me on to get it written.

A lot of people seem to think transplantation is a cure. But it’s not that simple – transplants actually swap one set of problems for another. I hope you find this blog post informative and that it gives you a better understanding of some of the things transplant recipients may go through months and even years after their surgery.

Some of the most common issues that can occur post transplant are rejection, infection and cancer. I will talk about all of these and others in more depth throughout this post.

Our bodies are very well designed to spot things that shouldn’t be there, such as bacteria and viruses, and kill them to keep us safe. Our immune system also recognises transplanted organs as foreign bodies so people who have had transplants have to take medication for the rest of their lives to suppress their immune system. This is called anti rejection medication. Despite this sometimes rejection can still occur. Acute rejection can usually be treated by using high dose steroids to suppress the immune system further but chronic rejection is progressive and at somepoint will lead to the failure of the transplanted organ.

Due to taking medication to suppress their immune systems, this leaves transplant recipients more vulnerable to bacteria and viruses which a healthy immune system would usually be able to fight off much more easily. If a transplant recipient can’t fight off an infection then sometimes their anti rejection medication will be reduced to strengthen the immune system and give the body a better chance, but this has to be balanced carefully with the risks of causing rejection.

Having a suppressed immune system also makes transplant recipients more likely to develop cancer. I think this is pretty self explanatory.

Sometimes things go wrong in surgery, especially with complicated operations such as transplants and any follow up surgery which may be required in such complex patients.

There are so many different reasons why people initially require transplants, even amongst those who receive the same organ(s). Sometimes these conditions can reoccur, even in a new organ.

There are multiple reasons why transplanted organs may fail to function, some of which even the medical profession don’t fully understand. Transplanted organs also don’t last forever, they only work for a limited time. This varies from organ to organ and patient to patient. In the case of organs which have only been transplanted in more recent years, these statistics are still unknown.

Receiving new organs, having (often multiple) operations, spending time severely unwell, taking strong medications etc can also also affect the body and mind so can cause transplant recipients to develop other physical and mental health conditions.

Every transplant recipient I know has experienced at least one of the issues above (I have personally experienced 5 of the 7). Some have received successful treatment, others live with the issues & others have sadly lost their lives to them.

This post is dedicated to the 20+ friends and acquaintances of mine who have died post transplant x

My life during the pandemic

Hello again,

I hope everyone reading this is currently doing ok.

Despite having had both doses of the Covid 19 vaccination, because I take immunosuppressive medication (to stop my body rejecting my transplanted organs) there is still an 83% chance that my body hasn’t developed Covid 19 antibodies. This concerns me but I knew continuing to shield indefinitely would be detrimental to my mental health so 3 weeks after my second vaccination I made the decision to start going out and about again but cautiously.

My physical health has continued to fluctuate but I have had some much better days/periods and now both my PAs are back working I’ve been able to make the most of them.

I’m worried about the easing of all coronavirus restrictions on the 19th of this month. I know a lot of people will have protection from having 2 vaccinations but it seems that those of us who can’t have the vaccinations or for whom the vaccinations aren’t as efficient have been forgotten about & are being treated as disposable.

Masks have been shown to be very effective at preventing the spread of the virus so stopping them being compulsory seems foolish to me. If they’re optional then large numbers of people won’t wear them, there’ll be more transmission of coronavirus and cases will rise. I’ll continue to wear my own mask but they’re most effective at preventing transmission from the wearer to other people so I don’t know how much good that will be at keeping me safe.

I’m aware that for most people contracting covid would just affect them mildly and that I’m in the minority with the amount of risk it would pose me but there’s also long covid to think about.

A friend of mine contracted covid back in February of last year, before even the first lockdown was introduced. 16 months later she is still suffering with long covid and has been unable to return to work. Her daughter has recently been diagnosed with a kidney condition after seeing a deterioration in her health. This kidney condition is usually rare but there has been a significant increase this year and it is suspected that this is a post covid issue. Those children who develop it post covid also develop a form which is much more difficult to treat. Neither my friend or her daughter had any underlying health conditions before catching covid.

Personally, I now have to try to find the right balance between my physical health (protecting myself from covid) and my mental health (continuing to get out of the house). I’m unsure of how to do this & am aware that if I get it wrong then I could potentially end up severely physically ill (with covid) or mentally ill (with depression and/or feeling suicidal). Life is for living but to what degree should I put myself at risk? I just don’t know.

Thank you as always for reading. I’m hoping to share some upbeat posts soon with photos from my trips out & about, photos of Fluffy Thing & some long awaited photos (& perhaps a video) of my bedroom & wetroom.

Overdue update

Apologies for the delay in blogging, my head just doesn’t seem to have been in the right place to write any posts for a while. I’m not even sure that it is now but I know I’m well overdue a post & didn’t want to worry anyone.

So…we’re in December now & heading towards the end of a strange year. I’ve received a couple of Christmas cards which have wished me a better 2021. I know 2020 has been very different & tough for a lot of people but for me personally it hasn’t been a bad year.

I’m still chronically ill & suffer from daily symptoms but my health has been better than usual since about March. This is the year I’ve started to employ my choice of PAs & they’ve improved my quality of life immensely. I’m not particularly social, don’t have any grandparents & am not close to extended family so socialising less hasn’t been too difficult for me. I’ve had to spend a lot of time indoors shielding but I’m used that with my chronic illnesses causing me spells of being bedbound or housebound. And based on past experiences I’ve been feeling grateful to be at home rather than in hospital. I made the most of the chance to get out & about a bit in Aug & Sept when things were a bit safer so I’ve not gone stir crazy. My Disneyland Paris trips have had to be cancelled which was disappointing but I will return in the future & I know my health has to come first. And despite everything I feel happier in myself & more content than I have in a long time.

I don’t mean to belittle the Covid-19 pandemic in any way as I know plenty of people have had it far worse than me & a huge number of lives have been lost.

I’m going to finish this here but I’m hoping to return soon with some more posts. Thanks as always for reading & stay safe.

P.S. I’ve just realised that I didn’t post last month for my 14 year transplant anniversary. I feel very lucky to still be here 14 years on as I know many people who haven’t survived so far. I’ll always be grateful to my donor & her family. To stay safe on the day itself I went to a drive through Starbucks with my mum & L where we treated ourselves to hot chocolates.

Another birthday

Last week Fluffy Thing turned 6. This was my message to him:

Happy 6th birthday Fluffy Thing! 🎈

Growing up I’d wanted a dog for as long as I could remember. An avid reader my favourite books were the ones that showed the bond between a child & their dog. Always lonely I dreamt a dog would be my best friend. I imagined myself having a dog who was loyal, affectionate & who loved learning new commands/tricks. I thought I could volunteer my dog as a pets as therapy animal, perhaps visiting other people who also spent a lot of time in hospital or elderly people in care homes. I even considered how amazing it would be rescue a second dog (from a puppy farm) somewhere along the line who my dog could help to teach to live a full life.

Instead, I got you! You’re none of the above but I wouldn’t change you for the world. You fit perfectly into our crazy family. Although you sometimes drive me mad with your stubbornness, I do admire your confidence & independence. Your rare snuggles are all the more appreciated when they do come. And you make me laugh every day.

Thank you for enhancing the last 6 years of my life Fluffy Thing. Here’s to our future together 💜