I am exhausted and again in a meeting where I am mostly listening. I am still able to work exhausted but to just listen and trying to seem attentive is very hard.

Please send a hot tub and a sauna to my house. Thank you.

I have a care planning session with the CFS clinic tomorrow morning. I’m worried that they will say we will put you on the wait list for 2 educational group sessions that you can have in 12 months time and that’s all we can offer. I’m so used to nhs services being over stretched and under resourced.

I dont refer to "living well with" (a long term condition) any more. I just say "living with". It's really important to make space for how unfair it is, how annoying & shite it is. How it's ok to not 'focus on the positives'. This is all realistic & legitimate, & can easily get silenced.

Air conditioning unit is arriving on Friday. Good timing.

If you have a small Portable air con unit for a bedroom what is it and would you recommend. I’d particularly interested in one that’s low noise

The bigger the shawl gets the more slowly it grows due to the increases.

Just sitting in a cafe knitting and listening to an audiobook while waiting for the car.

Early start again tomorrow due to annual car service. I’ve done it once so it feels less scary. Hopefully it won’t take too long and I can have a nap tomorrow afternoon. At least I have no other plans.

#3GoodThings - a sweet movie to watch - remarkably bright creatures - a dog to cuddle with on sofa - cookies to eat

I felt a bit better when I finally got up again at 12 so decided to tackle some chores. Big mistake. Feeling super exhausted & grumpy now. I’m worried about increasing my work hours more. I napped 3hrs yesterday, slept 10.5 last night plus 2.5hrs this morning & back flat on sofa now. /1

Just got up, took my meds this time and had breakfast. I had 2hrs deep sleep last night which is excellent for me, but I’m considering going back to bed. How’s your Sunday morning?

I didn’t take my meds this morning which might explain some of the extra tiredness/headachss today. Just took my evening meds.

I had a 3hr lie down & nap in bed aster early start and knitting group, B is still out.

It’s ridiculous how cold it’s been outside overnight in May. It was 16 degrees downstairs so had to put heating on for an hour.

This article has just made me really sad. I get that it can be a lot of pressure to be the main earner but having a supportive caring partner should matter more especially if you can still afford to go to restaurants etc inews.co.uk/inews-lifest...

B is walking for charity all day tomorrow and has an early start, so I will get up over an hour before my usual weekday wake time to support him. Better go to sleep soon. It’s just the pets and me at home tomorrow, chilling on the sofa.

I got 2 new t shirts delivered. I used to get excited when I got new clothes delivered and always went to try them on straight away, but with the cfs, I put them on the stairs to take up when I next go up and i will try them on when I next get changed if I have energy, as that all saves energy.

Having sofa rest time and dog cuddles at lunch.

I managed to finally get to the point an hour ago where I can send emails etc but I am now struggling to be in this 90 min meeting with my camera on, because I need something to do to stay awake. Just listening and looking alert is really hard when I am still this exhausted.

I have had some caffeine and pain killers and waiting for both to kick in. I haven't really been able to do much yet, which is frustrating as I had plans to get some work done before my first meeting.

I slept very badly due to anxiety last night (not sure what triggered the anxiety) and I feel even more tired and foggy in my brain than usual. Headache also brewing. Send help for work.

Just suddenly remembered the scene from Thomas Hardy’s Madding Crowd with the young sheepdog. And the upset I felt at the memory is a bit much for a memory of a fictional scene. Why is my brain like this and why does it do this just after I turn off the lights?

It’s always soothing to have dog cuddles. She was out with the dog walker when I finished work but is back now and up for snuggles after some treats and zoomies.

Foggy headed today - not my worst level brain fog but definitely off. I got through work today & now I wish someone would clear de-mist my brain.

Having a lie down on the sofa with Stella to get some rest during my lunch break. Then 3 more hrs of work the afternoon.

Yesterday was very tiring, I am so glad I’m not going into the office today. Enough having to work remotely albeit still slightly shorter hours. How’s your day looking?

I was going to go to sleep but got distracted with reading up on alpine passes you can take by car to get from Germany to Italy. I think we used most of the major ones by car when we went on holiday to Italy when I was little, Brenner, Reschen & St Gotthard Tunnel (not the pass over the mountain).

Thanks for joining in tonight with #MadSkyChat I hope you all stay warm and that you have a good rest of the evening. See you next Wednesday at 8pm BST for the next chat.

Hi everyone it’s time for #MadSkyChat We chat now for an hour. All mad and/or Neurodivergent people welcome. Just use the hashtag in every response to join in. It’s been cold for May here today. I hope you’re wrapped up warm. How are you?

I gave up on watching telly on the sofa downstairs and i have come to bed for better rest.

Here’s your reminder that it’s #MadSkyChat soon at 8pm BST.

I’m so so exhausted already. This day is too long. I also ate too many strawberries and too much lemon cake after dinner. Mistake.

It’s amazing how these “spoiled” well loved dogs sigh deeply as if the weight on the world were on them when they are about to go to sleep. I’m like little one, what do you have to sigh about. PS: I know it’s just their nervous system relaxing.

It’s 11 degrees outside and I’m freezing. Had to put heating on for an hour. It’s now finally 20 inside. I still have ice fingers.

Took Stella to the groomer today and now I’m as tired as she looks but not as well groomed.

Hi everyone. It’s Wednesday, #MadSkyChat day. We chat tonight at 8pm BST for an hour. All mad and/or Neurodivergent people welcome. Just use the hashtag in every response to join in.

Felix is unimpressed

I had delicious coop Calabrian salami pizza for dinner and it was well deserved.

I wrote to the doctor today via e consult to say - my dog ate my physio letter please can you send me an e-copy and they did. 🤣

I’ve had to put the heating on today. So cold.

B is out for the day for work which is unusual. I’m working from home and alone with the pets. Just sitting on the sofa for lunch having a cuddle with Stella

Another good thing today is that I got through the day without a nap for the first time in well over a week and even more weirdly I didn’t have to fight to stay awake through the afternoon. That’s a pretty good energy day for me.

The programme jellowjackets got me through this cold. Although for most of season 1 I had no idea what was happening, because I was too unwell to focus. I finished season 3 today. What do I watch next?

#3GoodThings 1. I am definitely feeling so much better cold wise. What a relief. 2. That new filled Tony Chocoloney is lovely. 3. It was raining all morning but the sun’s just come out.

The dog has just eaten my physio assessment letter while I was out and brought in lots of dirt all over the rug and one sofa. She wasn’t even home alone at that time. Not gonna lie I felt a bit stressed coming back to that

Made a little progress yesterday as I hadn’t felt well enough since last Sunday to knit. But I also made a mistake because especially tired. Nothing too noticeable so I’ll leave it’s

Good news the lunch time outing worked and Stella went to settle in bed almost straightaway at 10pm

Just a request to my mental health and other disability/lived experience activists, how have you avoided being threatened with a SLAPP? If you feel able, please repost. I feel I may need to know this year. Thank you #MadSky #disability