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TodayIsatrickyone · 04/04/2026 14:06

Hope all those in the yellow zone can stay warm and cosy today. Windy here just now and feels chilly today but we’re not in the yellow zone.

Glad you made it @MewithME but doing anything with ME/CFS isn’t easy and sometimes paying the price for doing anything however small can get you down.
I also have to rest for short spells with my mum. Love her to bits but she talks non stop and it can be wearing in a way that people without ME just don’t understand.

Just caught up with the thread. Sorry to all those struggling. Still not brilliant here either so a very quiet weekend. Needed a new audio book and found pride and prejudice in the free section! Not read it for years but I’m very much enjoying it again.

Nice to see you back @FuzzyPuffling

@martha79 isn't it always the way someone sees you when you just pop out quickly!

Sorry you're paying for your lovely trip this week @Swanhilde I would recommend trying out a scooter or something next time as it really does save energy and enable you to do a bit more on the odd occasion you might need it.
Although I totally get it’s a hard one to accept. Took me ages to do but honestly I wish I’d done it sooner.
I was very self conscious when I first borrowed a scooter a few times especially if I saw anyone I knew til my then 13 year old told me not to be so silly and it was just really nice having me there with them! So I decided if he was okay with it as a self conscious teen, I had to be too!

Take care all 😊

TeaAndStrumpets · 04/04/2026 14:31

Torchout · 04/04/2026 13:52

Watching g a ids film, bad boys 2 and then probably sleeping off dialysis

Have a cosy sleep!

Oioiqueen · 04/04/2026 16:12

@Orangesandlemons77 yes I've stopped having to look at symptoms as I often get gaslighted by medical professionals that it's not related to x, y or z. I know full well that some symptoms overlap but just drives me bonkers.

Swanhilde · 04/04/2026 16:19

Thanks @TodayIsatrickyone I know I just need to give it a go ❤️

Bay tree is very much shorter. It's still too fat but that can wait for another day 🌳✂️

DH is cooking chili for tea 😋

CoffeeBeansGalore · 04/04/2026 16:20

Afternoon all.
@MewithME glad you made it to your mum's.
Hope you & everyone else recovering has an easy afternoon.
Actually got out the house today. Just a trip to Costco for some essentials with dh but it was nice. Having all the family over tomorrow so got some nice cakes for dessert.

Battened down the hatches in preparation for Storm Dave. Temperature has dropped & the rain started around 3pm. Wind will be getting up in the next hour. The heated blanket will be on the bed tonight!

MaidOfSteel · 04/04/2026 16:27

Hi folks.

I’ve been to get my hair coloured today. I already was in a lot of pain when I woke up, so sitting in an uncomfortable chair for nearly 3 hours wasn’t good. My hair looks much better, though! I intend to do absolutely nothing for the rest of the day. Storm Dave should be here shortly and it’s blummin cold.

Does anyone else find our cold, wet winters increasingly hard to cope with? I think I need to emigrate somewhere warm & dry. 😞

FurForksSake · 04/04/2026 16:45

Had my mri. And now I’m in bits. Lots of painkillers going in.

CoffeeBeansGalore · 04/04/2026 17:02

@FurForksSake you poor thing. Hope the pain killers kick in soon.

Just had a snow flurry. Knew the temperature had dropped 🥶.

TodayIsatrickyone · 04/04/2026 17:59

Oh heck rest up @FurForksSake and hope the painkillers kick in. Lying completely still combined with the noise and following instructions is exhausting!

Goodness @CoffeeBeansGalore seems mad to imagine a snow flurry with all the spring flowers out. Stay warm. We’re way down South so no storm here but it’s definitely chillier than of late. DD is revising in our chilly dining room so I’ve just put the heating on!

Absolutely @MaidOfSteel this year seems to have been especially damp and dismal. I’d love to move somewhere warmer ( if only I had the energy to organise it and get there!) Enjoy your lovely new hair!

We managed another quick trip to see MIL in an attempt to familiarise the dog before we go away in July. She’s slowly getting more used to her. Thinking takeaway for dinner as both a bit shattered now.

JewelleryCat · 04/04/2026 18:13

I’d rather it was cold than all humid and warm, I don’t do well in humid weather at all. At least when it’s cold, there are blankets and other nice warm cosy things

Oioiqueen · 04/04/2026 18:21

@MaidOfSteel all the time. I have an underactive thyroid and feel the chill something rotten. When people say they can feel the cold in their bones I now know what they mean. I took the kids to the park the other day every child was in shorts and tshirt, as for me I was in a thick jumper and my winter coat. I felt just right but was conscious that it was actually quite warm in the sun but I just couldn't get warm enough to shed layers.

@FurForksSake hope the pain meds kick in soon.

Oioiqueen · 04/04/2026 18:28

PT this morning, I am back to lifting what I used to be able to pre secondary diagnosis. So much so that I helped DH move DS's new bed upstairs with him and felt really strong whilst building it. It's taken 5 months but slowly getting there to not feeling so feeble. I've put about 4kg back on since diagnosis so my clothes now fit again. I feel much more positive that if I get progression, pain or end up in hospital that I've got some breathing room on my weight and functional fitness. Of course one day it'll all go again but I'm not dead yet. However the peripheral neuropathy is doing my head in so I'll have to see how the next cycle goes. Doesn't help that the registrar from my last oncology meeting wrote really positive things about my health, I was relying on that letter to start my pip application. It doesn't mention that I've now got stiffness in my hands and feet, lack of strength with fine motor skills I.e shoe laces etc and pain with hot / cold items. I really think I'm going to have a fight on my hands with it.

martha79 · 04/04/2026 18:36

Hope the painkillers help @FurForksSake

@MaidOfSteel I don't mind the cold so much as the grey and damp - give me sunlight whatever the temperature! Hope you enjoy the new hair.

I got fed up with my hair this afternoon and chopped it from a bob into more of a pixie cut. The length and the remaining dyed bits were annoying me. I've been cutting my own hair for years (have never been able to stand going to the hairdresser, it's always been a horrible, anxious, sensory overload thing for me) so at least that's not a change. I'm quite pleased with it except that I fell asleep while it was still damp and it's now all puffed up on top 🤣 I'm resisting the temptation to go full skinhead like I did in lockdown...

Orangesandlemons77 · 04/04/2026 19:51

Oioiqueen maybe you could email and ask the oncology team for something specifically related to Pip, tell them the specific thing you struggle with that related to the PIP descriptors? That could be a plan. You don't need to include that letter if you don't want to. I know what you mean about PIP, they can make assumptions.

Oioiqueen · 04/04/2026 21:43

@martha79 I always had long hair until I started chemo. It hurt as it started falling out so I shaved it a number 4. It's a revelation having it this short, wish I'd done it years ago.

JewelleryCat · 04/04/2026 23:02

How’s everyone coping with Storm Dave? Windy and rainy here

Dozymoo42 · 04/04/2026 23:26

Absolutely blowing a gale here in the North west! Our bedroom is in the attic conversion and I was scared roof was coming off before 😂

martha79 · 05/04/2026 07:44

Oioiqueen · 04/04/2026 21:43

@martha79 I always had long hair until I started chemo. It hurt as it started falling out so I shaved it a number 4. It's a revelation having it this short, wish I'd done it years ago.

I'm sorry you had to do it because of chemo but I'm glad you like it. I loved the feel of it being really short... might go there again as the weather gets warmer.

It was pretty wild here overnight (South Yorks) and we were only just into the yellow warning area. About to get up and see if I have to retrieve anything from anywhere outdoors.

Strange anniversary today - six months ago, I woke up quite tired on a Sunday, having helped to arrange and taken part in a big singing event the day before. I was in the midst of a marathon training plan so I persuaded myself to 'be tough' and head out anyway for what was meant to be a 16 mile run. I'd had a few twinges in my ankles but they usually eased off once I warmed up. I pushed through to about four miles, when I realised I really didn't feel right and had to turn round - breathing was odd, my ankles were having shooting pains and I felt horrifically lightheaded and anxious - I remember thinking "something is really wrong here". Eventually made it home (a bus drove past me at the stop, I eventually got my sweaty, horrible, dizzy self into a taxi) and spent the rest of the day boiling hot and so, so achy. Two days later I'd never felt so ill, and thought I'd better test for COVID... and here we are now. Debating whether I'll manage the ten minute walk round the block today.

I do now think I'd had it more mildly earlier in the year and then some post-viral stuff going on for months (some of it got put down to peri menopause, then I had a bad reaction to progesterone 🙄 - some of it I thought was anxiety that I had to push myself through), then the October one really was the tipping point. Trying very hard not to think "what if" because it's not helpful!

TeaAndStrumpets · 05/04/2026 08:23

Bad night, adrenaline surges waking me up. Heart still racing but slowing down.

TMI but stress sweat is not like a ladylike glow it really stinks...to me it smells like vinegar. Once I am out of this crash I'll be back to normal. I am planning on resting as much as I can for the next few days. I've got my op on Friday. I know it will be quick and painless, I get terrible anxiety about medical procedures.

I think we are a bit south of you @martha79 in sunny Lincolnshire, and the weather is calm today.

JewelleryCat · 05/04/2026 08:51

Happy Easter everyone 🙂💐

TodayIsatrickyone · 05/04/2026 08:55

Morning and happy Easter Sunday all.
Hope those with storms are okay and no damage done. We’re nowhere near the forecast areas but had 25 mph winds all the same so it was obviously a bad one.

Sorry it was a bad night @TeaAndStrumpets and lots of rest and TLC before the op.

I think specific dates like that are hard @martha79 especially when life as you know it changes overnight. I can pin point the start of my ME to a specific date too. It’s coming up actually in the next week or so and will be 21 years this year so I know I’ll be sad that day but that’s okay as I’ll pick myself up again and focus on the good things I still have going on. Be kind to yourself today.

TeaAndStrumpets · 05/04/2026 08:59

JewelleryCat · 05/04/2026 08:51

Happy Easter everyone 🙂💐

Yes happy Easter all!

MewithME · 05/04/2026 10:53

Morning all and Happy Easter. I'm having a sneaky cuppa back in bed for some rest before getting dressed. It's v tiring being around my lovely Mum. In lots of ways she's v understanding of my Mecfs but the talking..well nothing is going to dial that down. All I can do is take myself off for breaks...and she follows me anyway sometimes 😆

It's early days for you @martha79 . I don't think I could pinpoint an exact date but covid did it to me too, at least as the trigger or catalyst.

OP posts:
Swanhilde · 05/04/2026 12:36

It's another slow morning here. Weather is blustery and very changeable 🌦️

DD and I are going out for a coffee in a bit. The cafe is not far away and I'm going to try to walk it. Can always get an Uber home 🤞

Homemade leek and potato soup for tea - using up sprouty potatoes 😆

Enjoy your chocolate eggs 🐣

Swanhilde · 05/04/2026 12:41

I'm coming up to 3 years since I had my first major crash. Looking back, I had been ill for over six months ever since I'd caught covid, but I just kept pushing through. I ended up in bed for 3 weeks and then another 3 before I thought I had recovered .... 😕

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