Clare

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

From a friend. I don’t know who made it. It’s so very true, I’m sure all people with #ME #MECFS #POTS will sadly be able to relate to it.

Now where do I find a CJ/Cam to help me learn wheelies & be the love of my life?! 😅 (Their name hasn’t got to be CJ or Cam but that would be pretty damn brilliant 😂)

The biggest thing for me was the main character being an ambulatory wheelchair user, having POTS & EDS & the general acceptance by others while also highlighting the difficulties faced.

I have never related to a character as much as I did in this book 🩷 I thoroughly enjoyed reading it too.

@arisonsned Yep. Often think it’s started raining because feels like a few rain drops have hit my skin but it can be when I’m inside or even when there’s an item of clothing covering where I get the sensation. Pretty sure it’s to do with my neuropathy 🙈

Here’s a weird one. Does anyone have a feeling of water being splashed on their legs? I keep thinking my legs have got wet but when I check they’re dry 🤷‍♀️

@hopefullizzy So sorry to see this Lizzy. Sending so much love ❤️

As a couple of you know, I’m back in hospital. Have been here a week, some incredibly poorly moments where mum stayed with me overnight. Stabilised a little. Back in my usual room, usual ward (thankfully because although the staff on AMU were brilliant, being in a bay was hard)

“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! 🤣