What are you up to today if you have a chronic illness? Thread 🧵 9 Summer's Coming

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5524497-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-8-plodding-on-gently

You know the rules...let's be tidy and fill number 8 up first 😁

@TeaAndStrumpets DH was on a renal ward for a week a little while back. He said he was kept up all night by his elderly room mates who had dementia. They'd just spend the night calling out for their dead wives and wandering. It was very sad.

Your DGS will be out soon enough and back to his no doubt cheeky self. Must be hard for him being on an adult ward when he is still quite young.

I listened to an interesting episode of 'What's Up Docs' on BBC Sounds earlier about hayfever and why so many people are getting it/ it's worse than ever. I'm not sure my antihistamine is doing anything and I have got a new one to try but am a bit reluctant to change anything at the moment!

@martha79 what was the general gist of it?

I had it awfully about ten years ago when we lived in a part of the country that grew rapeseed. We passed through it a few weeks ago for the first time in years. I got out of the car and sneezed within ten minutes I couldn't see properly. DH just knew without me saying anything how I felt. Then we spent a few years living on the coast and managed fine on antihistamines for a month or so. I'm now back to where I grew up and we really only grow corn and fruit orchards here and I'm horrendous again. I honestly just can't put my finger on what it driving it this year. I can only suggest it's my immunotherapy as it super charges my immune system so I'm probably highly inflamed anyway and then add a tiny bit of pollen and I'm feeling it

@Oioiqueen the main thing was longer pollen seasons and greater volume of pollen at once, caused by climate changes.

That's hilarious!

I read an article in the Times about Dawn O'Porter and Chris O'Dowd who have quite a menagerie. They adopted their dogs while living in California and she commented in passing that most of the rescue mongrels in Los Angeles are part chihuahua! One of their dogs seems to be a mix of wolfhound and beagle, wolfhound face and very long body. It looks really strange!

That is so sad, it must be difficult for all concerned. DGS is 16 but quite young for his age due to autism. He is being very brave but it will be a relief for him to go home.
How annoying about the hayfever, a very unwelcome side effect!

Morning all!

It's quite muggy here but going to get hotter towards next week. If I didn't have cfs I'd be washing every pillow we've got and drying them in the sunshine..they always smell so fresh afterwards. I usually put them on a table on the patio and turn them over every half hour, fluffing up the feathers. They end up sparkly white. Another thing I can't spare the energy for. There's such a long list of things I've had to let go, cut corners, decide it doesn't matter, all to scavenge a tiny bit of energy.

Morning all. Had an awful day again with work stress situation yesterday. I feel absolutely broken today. I'm having a serious think about everything and how to respond. Got a meeting with head on Monday and I have someone else senior in my corner but it's way out of hand and shouldn't be happening.

Have woken up to the sound of shit music drifting in from shitty neighbours. Why do people who play music in their gardens never have good taste ? Oh and get this....I can beat your DIY noise @ValleyClouds . At 11.15pm last night someone not far away was using a chainsaw and wood chipper!!! It was bizarre!

I'm dreading the heat again too. I already feel very weak and ill. Might try and buy an Aircon but they're heavy so not sure because it's upstairs I need it.

Hope DGS gets home today @TeaAndStrumpets

Right...I need coffee ☕ and I'm not sure what the rest of today will bring. I need some joy and a lot of rest.

Oh no! @MewithME that sort of thing warrants a council complaint!!

It sounds like you’re having a really bad time at work. Have you spoken to ACAS and are you in a TU?

Aargh what a nightmare @MewithME. I hope you can get the work stuff sorted.

It's not too hot here so far today. I've got my bedding washed and hung out - like you say @TeaAndStrumpets it'd be good to do all the pillows and duvet but at least I'm currently using a thin quilt which can be chucked in the washer and isn't too bad to hang up.

I'd like to pop out to a local summer fair later but will see how my energy levels go - I can often hear the music from my garden anyway!

Have booked to go to the outdoor swimming pool again early tomorrow morning which I'm really looking forward to. The LC clinic woman was saying yesterday that with their exercise programme they can 'prescribe' free gym membership after you've done their online classes, but occasionally they can make other arrangements too so I might eventually be able to get support to go swimming (though probably not to the lovely outdoor pool).

Yes I'm in a TU but I don't think it's a union issue... I might need them next year when they look at workload changes for everyone!

I have a role as part of my job which I'm allocated a one day a week secondment to. It's been a good role and allowed more WFH so it's been useful for my health until the last year when it has increased in stress substantially. Workload is one thing but the big thing going on at the moment is one of two senior people (one in particular) who are changing the goalposts on work signed off and 'unsigning' it off, micromanaging and undermining me and putting a huge amount of pressure on me. I'm thinking about stepping down but it would increase on site working so then I'm thinking about whether I could/should reduce my hours. I'm on my own so it would be a big hit on income and pension.

I'm bloody good at my job so it is feeling quite personal because I can see not everyone is getting this treatment. I don't think it is personal logically, I think it's just poor management and then having to follow through when they've interfered because they can't then be seen to back down.

Anyway, I will try and switch off this weekend 😕

Huge sympathy @MewithME that sounds dreadful and I hope you can get something sorted. The mental stress at work and the physical stress of being ill are like a nightmarish pincer movement.

Good grief a woodchipper having seen Fargo I would be calling the police!

DGS still stuck in hospital and back on a drip, just need him to be stabilised so he can be on injections at home.

@martha79 it is very frustrating not being able to do the normal seasonal things, it just emphasises how much is lost to this illness.
If I had the energy I would make a board game like monopoly and use Knacker Points to score. 5 points making a pot of tea, 500 points for hoovering out the car. Once you get to 1000 points you'll have to go directly to Bed. I suppose there should be Rest points as well to cancel out the Knacker points but it's a game I would never win!

Haha yes I did start having Fargo thoughts 😂 If it were closer I may have given 101 a call. Could have been any one of hundreds of houses really. Very bizarre!

I have definitely used all my knacker points ... @TeaAndStrumpets !

Oh and I must have been evil in a past life because I just had a moment out on my deck while the kettle boiled and found ... A fecking turd under my patio table! A fecking turd on the decking!

Could only be a cat surely...? Unbelievable.

Sounds incredibly stressful at work @MewithME hope you can rest and switch off over the weekend.

Outdoor swimming pool sounds lovely @martha79 I miss swimming. It’s the energy involved in getting to the pool, undressed and dressed that’s too much for me. When we did the cruise last time I managed to swim a couple of times as I just needed to get in a lift and there I was.. Fabulous! Maybe I need my own pool in the garden!

Oh @TeaAndStrumpets really hope DGS can stabilise soon but best he’s there than coming home too soon and having to go back.

I love your game idea! You could have cards like ‘chance’ & community chest’ ….. ´emergency dentist appointment’ -800 knacker points! But there could be ‘ sparks of joy’
too….. listen to the birdsong- 50 rest points! 😊

Fox maybe? @MewithME We get them sometimes!

Another Card for game idea though…
‘A fecking turd on the decking’ add 20 knacker points for cleaning it up! 😜

😂 😂 yes brilliant!

We get a lot of fox poo, the cats seem to prefer grass and earth. Hedgehog?

The trouble with points is you'd need some handicapping Eg if you were tired and apathetic you'd just shrug and move on with your day, if you were feeling on top of things you'd have more energy to feel annoyed!

🤣🤣🤣

I would forgive a fox (but not a cat) but I've never seen one round here. I'm opposite fields. Not sure why they'd want to clamber over fences and garage rooves to get round back and poo on my decking! Must be a degenerate fox if so!

@TeaAndStrumpets without being graphic...too pale for hedgehog poo!

Hmmm I'm annoyed enough to grump and rant to you all but still flopping on the bed so not sure how many points that would be!

Googling 💩

I seriously need to get a life 😂🙈

You'd be able to use your Shrug card up to your daily limit.

On the cooling pads / heatwave you cam get them for humans too! I ordered a cooling 'pillow' last heatwave, it goes in the freezer (folded up) it is a bit like a gel inside - it did help a bit

I am not looking forward to the next few days in the heat, even with cooling pillows!

I had am email from a local hotel which has a spa saying they now have spaces, it looks lovely but I just took out a six month membership at the local gym (has a pool) so I can't merit that right now, Shame because it is much closer and might have been more likely to go.

Not too hot here so far. Have MIL visiting later so will probably take her out to a cafe and the local shop. Exciting stuff.

Hoping for a good day for all and the heat is not too bad.

@MewithME google evaporative cooling unit. Start around £80. Smaller & lighter than an air con unit so easier to get upstairs. It's what we've got & works well. We are cooler as in NE rural Scotland but it was fine last year when we hit 27/28 ⁰c.

Thank you!

@MewithME work sounds super stressful. Hope it gets sorted out properly.

@TodayIsatrickyone Your cruise sounds lovely and I'm sure you will have a great time. Sitting on an balcony reading a book sounds like bliss

Sorry for those with inconsiderate neighbours. Such selfish people in the world. I despair.

Im shattered today, I stopped my anthistmines last week to see if they were causing a particular side effect. Was ok for a while but I have now crashed badly. Back on them now. I haven't felt this bad since February when I started taking antihistamines consistently so at least I know antihistamines make a huge difference to managing my long Covid.

Im trying to rest but im mightily agitated and feel so weak. Dragged myself for the dog walk because the next week he likely won't have many walks with the heat. Checked the weather forecast next week and some days it feels like 37 degrees 😱

Also have an injured pigeon in my front garden which im trying to find a rescue to take. Would usually drive it to out of hours vets but don't feel safe enough to drive.

I could cry at the thought of the day ahead to get through

@Tiredandwired2 I take antihistamines all year too, otherwise I feel dreadful. If I miss one, I can guarantee I'll have a headache and crushing fatigue that day. It's awful but at least something does actually work. Hope your day isn't so bad, and try to stay cool!

Not much happening today. Yesterday DH took me to the woods which was lovely. The builders building the nearby new houses have been running some kind of machine all morning so all I can hear is a low droning - the worst sound ever, it is absolutely detrimental to health.

Making sure I rest today as I'm seeing friends for a BBQ tomorrow. Hoping to at least get a lot of knitting done!!!

@MewithME so sorry about your poo problem 😪💩 How truly gross finding that on your patio.

Hope your grandson is doing ok @TeaAndStrumpets

Haven't been too good at keeping up on here, I've been prioritising lying down staring into space to gather up a bit of energy.. Boring but does seem to be working a bit.....

Putting the kettle on now - any takers?