Clare

"Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible." - Francis of Assisi

“I’m 40 years old I can’t be dealing with this!” 🤣 I'm dying. you can tell this UPS driver is having the best and worst time all at once. Update on your delivery- “Your package has been delivered under sheer panic and terror from wild turkeys.” 😂😂

@dokter_Arf Tried both. Pregabalin helped pain most but caused significant weight gain so was changed to gabapentin. Tried 100mg 3x a day & could not think at all, barely knew my name at times. So reduced to 100mg twice a day. Not helping the pain as much BUT can string a sentence together!

If you have any comments, please add :)

📊 Poll Gabapentoids: Experience *Pregabalin + Gabapentin* 💊 #MECFS #LongCovid #PEM: *Note: 3 more Questions below⇩ **Also please describe details below WHAT is your experience with PREGABALIN & GABAPENTIN? (1/4)

@TanteRos It’s most likely not this but just in case; you can check if there’s a problem with your local transmitter here: bbc.co.uk/reception/chec… It’s happened to me before.

Oh bum. My TV suddenly started showing NO SIGNAL. Yes, I have my instruction manual out. Yes, I am watching YouTube videos. It could take me some time. Luckily I hardly watch my TV. Just lunchtime & tea time for 20mins & as a go to bed thing at 9pm. I have my computer.

@TanteRos I had the same problem - OT said I’d need 2 bedrooms so someone could stay during bad periods & to store equipment but housing insisted 1 person 1 bedroom. I got very lucky with my new place as it’s got a garage attached. Maybe that might be something your friend can look for?

@SmilingClare Yes, she is finding the same about bungalows. I'm sure she'd be happy with a ground floor flat. She really needs 2 bedrooms though - one to store her wheelchair + scooter but they are saying 1 person 1 bedroom :-/

Finally getting back into blogging again after a while where it’s just not been possible. Here’s my latest post: smilingclare.co.uk/2026/01/01/its…

@TanteRos Thanks Rose. I hope she can get what she needs, I know it can take a while. An adapted bungalow is my dream but unfortunately bungalows are hard to come by in my area let alone social housing or accessible ones. So a ground floor flat is my best option.

@SmilingClare That's a big achievement Clare - to move to a place that will suit your needs better in the long run, even if the adaptations take time. I have a friend with severe ME currently stuck in a 1st floor flat, unable to do the stairs, searching for an adapted bungalow. Hope she can.

This post is about something I've barely talked to anyone about. There's not exactly been reason to. But in the interest of sharing an honest account of what it's like to live with chronic illness, and in turn disability, I feel it needs to be written. smilingclare.co.uk/2026/01/07/dif…

New research finds people with ME/CFS have a striking deficiency in vasopressin - a hormone that helps the body retain water. This could explain common symptoms like constant thirst and dizziness upon standing. Let's break down the findings.

Started 2026 with a cold & nasty mouth ulcer. At least things can only improve from here 😉 Getting plenty of rest, catching up on Xmas tv & staring at parts of my flat coming up with mad plans to make it more my own 😆 Just need the energy to see if they’ll work 😂

@billykayscot I love my Hetty Quick cordless. Although a seemingly small “bin” on it, I only have to change the bag once every 3 months or so because I compresses the dust so well! That’s with it being used to hoover carpet throughout my one bed flat every other day.

The sad news is that my hoover has reached the end of its days. The good news is it’s a Dyson so good riddance to any association with that charlatan. Any recommendations for a replacement though, peeps? January sales bargains welcome. Any make but Dyson please.

Happy New Year everyone. Hope 2026 is kind to you all 🩷 We spent NYE with my parents & sister, playing games on the Nintendo Switch and watching the fireworks on TV. Dolly loved staying with her Grandparents again and seems grumpy to be back home 😆

Hope everyone had the loveliest Christmas possible. I spent the festive period with family & although exhausting it was lovely 🥰 Hence the radio silence 😂 Dolly absolutely loved us staying with my parents & sister. Time now to unpack & recover.

@cfs_jo That’s fab! My first one on visible was 2.8 but has been going between 1.7 and 2.0 since Oct 2024. Today it’s 2.0 which is the same as last month. So hopefully getting back to some sort of consistent level 🤞🏼

My FUNCAP score today is the highest it’s ever been! 2.4! I think my first ever one was 1.2 or thereabouts. Slowly slowly. Hope I haven’t jinxed it. Mine is on Visible but here is a link for those who’ve not heard of it, to save me explaining funcap.no

Thought I’d bake some biscuits for Christmas with help from my Mum. Made the dough, got ready to roll it out & remembered I don’t own a rolling pin 😂😂😂😂 I got my Mum to bring cookie cutters over as I knew I didn’t have any of them. But completely forgot the rolling pin! 🤣

Christmas came early for me today - I wasn’t expecting this to arrive until January but it came early & I got it today! New wheels, fitted to me & ready for my power assisted wheels. Can’t wait to get it fully set up & go on some adventures 😊 So pleased with it.

@Jdavis_Halton Yes I do. Here’s the two I’ve done previous years, with this years one front middle waiting to be framed. (Need to find somewhere else to put cards & the frames but only moved here 5 months ago & still working out where things can go!)

@SmilingClare So you frame them individually?

Our nephew’s wife hand paints family Christmas cards. I am always excited to open the envelope with the cursive writing. This is her creation for us. Painting snow is not easy but she makes it effortless. Christmas has officially arrived. 👇🏻 #art #Christmas2025 #joy

@Jdavis_Halton I have a friend who hand paints them and I save each one and frame it each year. Then display them as Christmas decorations every year after.

I keep all the Christmas cards our nephew’s wife creates for us. Below is a selection of some of these beautiful cards. Now wondering if I should frame them as a collage or individually? 🧐 Oh, to be so talented. #Christmas

@NobleRingleader Very true. It’s a bit more complicated for me as I was born with very little enamel on my teeth so they’re more susceptible to damage from sugar, acid etc. and brushing isn’t as effective on the rough surface. Thankfully dental work means it’s not as bad as it used to be.

@SmilingClare If you can’t enjoy a bit of sugar now and then…why live? Seriously, …as long as the sugar doesn’t stay on your teeth for too long, you are fine. It is all about interrupting its effect and brushing helps that.

Opinions please: would you say this is “a lot of jam” on toast? My carer tonight thought so and is worried about my teeth. (Ironic given he doesn’t know my dental history & condition so am pretty careful about sugar intake overall but sometimes I enjoy jam on toast)

@jpc101 Thank you. I didn’t think it was excessive until they made me doubt myself! (Why thank you, the Christmas PJs & slipper socks are out)

@SmilingClare Looks like normal jam-age to me. (And excellent trousers!)