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 💜

Birthday celebrations

I had a lovely day yesterday celebrating my birthday with my parents & PAs, who joined us for friends for the day. Here are a selection of photos:

My amazing birthday banner – made by my mum & a few of her friends

Fluffy thing sniffed out my cake!

Decorations organised by K

Pleased with my balloon & gifts from L

Opening my cards

Happy with some gift vouchers

A particularly entertaining card

Apologies for the blurry photo but Fluffy Thing made us all laugh when he got the sticky bit of an envelope stuck to his paw

My thoughtful cards

Cake

K, L & me

Refreshments in the campervan after a busy few hours shopping (mainly in Pandora, Hobbycraft & Primark)

My main present from my parents – a Pandora bracelet

The Pluto charm I bought with some of my birthday money

The Mrs Potts & Chip charm I bought with some of my birthday money

Thank you to everyone who was involved in making yesterday so special x

30

Today is my 30th birthday. I don’t usually celebrate big birthdays & I turned 29 while at Disneyland Paris last year so nothing could beat that. And lockdown certainly hasn’t helped with trying to plan something. So I’m just hoping to go to a local retail park later today for a spot of shopping & some cake with my parents & PAs, who will be coming along as friends.

But this birthday has made me think & reflect a lot. I’ve beaten the odds so many times over the years that turning 30 feels like a huge achievement. A lot of people view birthdays as a negative thing marking each year they grow older but after losing many friends & acquaintances & having a lot of close calls myself I feel privileged to be able to celebrate each & every birthday.

I feel lucky to be here turning 30 today & don’t know how many more birthdays I’ll be granted, so I try to make the most of each day (well as much as my chronic illnesses will allow me to) & make precious memories.

Please don’t view your birthdays as a negative or moan about becoming another year older, think of all the people who haven’t survived to your age & count your blessings that you have.

PAs

I found the process of applying for care exhausting & depressing & then I had some bad experiences with agency care. But once I was granted direct payments which I could use to employ my choice of PAs, things improved dramatically.

My first PA, K, started working for me 8 days a fortnight (I use a 2 week rota) at the beginning of January & she helped me advertise, interview & then employ my second PA, L. L was due to start working for me (6 days a fortnight) in mid-April but in mid-March I decided to furlough both my PAs to keep me safe during the pandemic.

But both K & L have been amazing. I’ll go into more detail but basically this post is to say that although I found applying for care difficult & had some very bad experiences with agency carers, things have got so much better & I’m now so glad I went down this path.

My social worker was shocked no-one had ever suggested that I could have outside care before as she believed I would have been eligible all my life. But it took til I was 28 for us to be made aware of it.

I hear about a lot of other chronically ill or disabled people having negative experiences with carers so feel very lucky that I’ve found 2 fantastic ones. And I’m very grateful to them.

I knew K for a while before she became my PA & she worked for me for 3 months before I had to furlough her. Despite not being able to come in to work for the last 4+ months she has continued to keep in contact, run errands to help out & come round for socially distanced chats in the garden. She is definitely a friend as well as my PA, she genuinely cares about me & is great at cheering me up. K hasn’t returned to work yet as her circumstances mean she & her family aren’t able to socially distance strictly. But hopefully she’ll be able to return to work soon which I’m looking forward to. K is very different to me but she’s very good for me, helping increase my confidence & bring me out of my shell.

Despite L not being able to start work as planned we used different methods of communication & socially distanced chats in the garden to start getting to know each other during lockdown. We quickly discovered that we’ve got a lot in common. L’s circumstances mean she’s able to socially distance strictly so after a few visits to learn the ropes she started work a few weeks ago. It’s been lovely to see someone besides my parents, we get on really well & because L drives I’ve even been able to start getting out & about again over the last week or so. She’s already a friend as well as a PA.

I’m looking forward to many more adventures with both K & L in the future & feel so much more positive about my situation now I’ve got both of them on my team. If you’re reading this K & L then thank you so much, you’ve improved my quality of life immensely.

Thanks as always for reading. I’ve got a post planned for approximately a fortnight’s time so keep an eye out for that. I might share a post with some photos before then though.

Monkeying around

Yesterday my dad & I had a lovely day out at our local safari park. We’re still shielding so we only did the section you can drive round (twice) & took the campervan so we had our own toilet, drink making facilities, I could have a lie down if needed etc. And it worked out really well.

Most of my photos were of one particular species. I didn’t photograph most of the animals because my phone camera doesn’t have an optical zoom & they weren’t close enough to photograph well. But as well as the pictured animals we also saw elephants (including one giving itself a dust bath), rhinos, tigers, lions, bears, various types of antelope, camels, alpacas & more.

The giraffes came quite close so I took the opportunity to snap a few photos. They’re all much the same but this one is my favourite.

The highlight for me was the macaque monkeys. They absolutely loved our campervan so climbed all over it – and pulled a few things off! They were so cheeky. I took lots of pictures but these are my favourites. I hope they make you smile.

Strange times

Sorry for the long delay in blogging, the last few months have been strange. I know that’s been the case for a lot of other people too. I’m going to try to write a catch-up/brain dump post of sorts both to benefit me & you as my readers. I’ll try not to waffle too much.

So first, my physical health. As usual some things have improved while others have deteriorated. And nothing is predictable! My mobility has been much better recently which has been frustrating because I’ve not been able to get out & make the most of it. My paralysis was less frequent but is back regularly now. My energy levels are very up & down. I have no pattern at all to my sleep. And I’ve been struggling with pain – both my usual chronic pain being worse than usual & developing new pain. So all of that keeps me on my toes!

Regarding my mental health, it’s a bit better now than when I last posted but in the middle I did have quite a dip where I found it difficult to take care of myself. But things have improved a little now so that feels more stable. I’m still really sad about the loss of so many friends over the years but that thought isn’t at the front of my mind 24/7 any more. It’s still often present though. And I’ve gone through a spell of depression which as usual seems to be related to my poor physical health & exacerbated by shielding meaning I can’t get out the house for a distraction & plan trips out to look forward.

I’m aware that lockdown is now easing for the majority for people but those of us shielding have been told to officially continue til the start of August. I’m not sure what we’ll do after that, we definitely won’t stop all the precautions we’re currently taking to keep me safe but will probably play it by ear & start to relax things a bit. Hopefully it won’t be too long til we feel it’s safe enough to have my PAs back in as different company (aside from immediate family) helps my spirits & allows my parents a break. They have been getting away in their campervan for a night or two here & there now my younger brother is home to look after me. But I felt very guilty when they had to cut one trip short because I was struggling to manage the pain I was in.

Fluffy Thing is well & happy. He’s still getting out for walks with other family members who take him to the middle of the countryside where they don’t see anyone else. He did worry us earlier in lockdown when he had yet another sore paw but one of my PAs came to the rescue & took him to the vet on our behalf. After an operation to drain the affected area & have an explore (they didn’t find anything but I suspect it might have been another grass seed injury) he healed very quickly.

We’ve been well supported by my two PAs, neighbours & family members throughout lockdown so haven’t gone short of anything. My spirits have also mostly been ok but I think keeping them up is going to become more of a challenge now the majority of people return to their normal lives, yet I’ll have to continue to be patient.

I can’t remember exactly when we started shielding but the last time I left the house before that was for a hospital appt in early March. I then didn’t leave the house at all until a few weeks ago but more recently have had 3 restricted/limited trips out. One was a walk round the block at night when it was quiet, one was a car journey to see some of the local area but not leave the car & the latest was another car journey with a quick wander in a quiet area to watch Fluffy Thing have a wander. Health permitting my dad & I might do something more exciting this week but I’ll share more about that with you afterwards if it comes to fruition.

As I may already have said or you may have realised, I’ve already had to miss two of my planned trips to Disneyland Paris – in April & June. One I cancelled & one I rescheduled to Sept. So now I need to cancel my Sept, Oct & Nov trips. I want to cancel rather than reschedule as I don’t know when it’ll be safe for me to return. I’m not sure how easily it’ll be to get the trips refunded now the park is open again but hopefully they’ll be understanding. And I’ve also got the Eurostar trips to try to get refunded. If not I’ve always got my travel insurance to fall back on but due to my complex health the excess is quite high so that’s result in me losing a significant amount of the money. But getting some of the money back would be better than nothing. And I’m sure I could find at least one medical professional involved in my care to write me something saying it’s unsafe for me to travel if DLP, Eurostar or my insurance company won’t take my word for it.

I think I’ve been doing relatively well at keeping myself occupied during lockdown. I haven’t done much crafting but have enjoyed doing jigsaws, watching TV, listening to music & playing on my Switch – amongst other things. My concentration hasn’t been good enough to watch films though which has been frustrating.

For a while the Switch game Animal Crossing: New Horizons took over my life a bit but after 700 hours of play I’m not playing that as intensely any longer & am taking time to play some other games as well. I’m aware that’s a lot of hours but it was a very good distraction from all that’s going on with the world & my health.

Oh & my younger brother has been teaching us a brilliant board game called Wingspan. If you look it up you’ll notice it’s pricey but it’s well worth it & we’ve all had a lot of enjoyment from that.

I really miss shops. I know I can still buy things online but it’s not the same. I’m not a huge shopper but I’ve not been in a shop since February & just want to browse some things on a shelf! Anyway, keeping safe is the most important. My freedom will return at some point. And as I might have said previously I miss having things in the diary to look forward to, that’s something that really helps me keep going when things are hard.

Sorry for that last moany paragraph, I really am doing ok. I’m currently trying to think of how to mark a big birthday I’ve got coming up in just a couple of months so hopefully that’ll be something to look forward to.

Thanks for reading. Hopefully it won’t be too long til I update again. I’m also hoping to share some photos of Fluffy Thing as he’s been a big boost to my mental health recently & I’d like to try to share that with you. Take care & stay safe.

The reasons for my silence

You may have noticed that I’ve not blogged for a few weeks. I just wanted to write a quick update to let you know that I’m ok.

There are two main reasons for my lack of recent posts. Firstly, I bought a new game for my Nintendo Switch which has been keeping me busy. I hope to share more about that at some point.

And secondly, a good friend died recently. As well as that this is also a difficult fortnight with anniversaries of three friends’ deaths, the birthday of one of them & the transplant anniversary of another friend who has since died.

I’m ok, but my friend dying made me overwhelmingly sad & then everything else coming at once has made me quite…umm, I can’t think of the word – not ‘thoughtful’ but thinking a lot/deeply about their lives, their deaths, their families, our friendships, my future…

I do hope to return to blogging soon but my head just isn’t in the right place at the moment.

Thanks for reading & take care everyone x

Cross stitch

I’ve got a few upcoming blog posts planned but in the meantime I thought I’d share a photo of the cross stitch I finished today.

Betty the ladybird

This was a frustrating project but I’m relatively pleased with the finished result, I just wish the spots were a bit neater. But I’m trying to be less of a perfectionist so it’ll do 🙂

As always thanks for reading & I hope to be back with another post soon.