What are you up to today if you have a chronic illness 🧵10! Summer Edition 🌞

[MewithME]

Getting ready..,. But you know the score.... Let's be good and fill thread 9 up first 😁

Link https://www.mumsnet.com/talk/_chat/5542135-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-9-summers-coming

Morning all,
A slow one here, took codeine at 5 am as woke in agony which then has the side effect of making me feel a bit zonked. Not entirely sure it helped much either tbh other than I did sleep for a few more hours.
Really fed up of this pain again especially after I thought it was improving so a bit fed up and grumpy today. Will be resting but no choice over it really!

Dishwasher looks great @martha79

Glad you managed some decluttering @TeaAndStrumpets sounds like you’re making good progress but sorry it’s taking such a toll on you. Hope the payback isn’t too rough.

@Oioiqueen I agree it’s just too much now. A couple of days respite from the high temps here but it’s still been pretty humid in the south especially at night and literally a few spots of rain once!
I’m not surprised you don’t want to host in those temps, I don’t suppose there’s any way of getting out of it?!

@TodayIsabetterone do you have anything stronger than Codeine? If you are struggling that much would your GP give you something else?

Not worth getting out of it. They live 3 hours away, DH last saw them in March and again they came to us. At least here I can just retire to a room in peace if it gets too much. They are only here for two nights so it's not that long. I love them to bits I just don't do heat too well.

Sorry about the pain @TodayIsabetterone it's so lonely to be kept awake by it. Do you think it's to do with your osteopathy? I get a definite 'worse before it gets better' reaction with mine. I think it is a definite thing.

I get it @Oioiqueen I’ve struggled this year with the heat so anything on top of just trying to function feels too much! At least you get on well with your in laws so that’s good 😊

@TeaAndStrumpets It’s been building again since getting home really but I think the last 2 days are definitely a reaction to the osteopath so hoping it will get easier. I’m just grumbling today.

I think I’m being stubborn re the painkillers as I do have stronger meds left over from when it was acute initially. I need to accept I need them again and hopefully it’s just a blip. Will try something stronger tonight.

Hope the pain eases off @TodayIsabetterone Good luck with your visit @Oioiqueen

First run of the dishwasher was a success, although I need to improve my stacking skills! Did my breathe class then lay down 'for ten minutes' and have just woken up an hour and a half later. Must have needed it.

We had a friend over for coffee this morning and I am totally peopled out. I need a cave to hide in for a bit.

All of you lot struggling with the heat are hereby invited to Scotland, where we had highs of 20° today. It's been marvellous!! A bit windy but the air is so fresh.

I don't envy the 32° some of you are having. A good tip for hot weather - fill a hot water bottle with cold water and freeze it, and just use it like you'd use a hot one. That's got me through many s heatwave.

Normal day today, quite busy at work but I got some decent work done and felt pretty competent. It's all we can ask for eh 😂

Accidentally had a 2hr nap though afterwards, felt like I fell into a brief coma to be honest.

Hope everyone is as well as can be

Morning all. Last day of our holiday today. It's been far harder activity wise than previous holidays but I think that's down to how I was before we came. I don't think I've pushed myself harder than I have in previous holidays really.

It's been so lovely though and I really don't want to go home. I don't usually feel that way. I just love it here. I will enjoy having my bed back though.

We're having a fairly gentle day. Drive up to local viewpoint and then I promised DS a steak for lunch at the pub. He's such a carnivore (and I'm veggie)!

So many things I would like to do today but I'll have to be happy with one or two. I suppose I can come again sometime. 🥲

How is everyone else doing?

It was quite chilly last night but glorious sunshine this morning. Listening to the birds just now chattering away. So peaceful.

I have a husband who loves steak/burgers, but falls in with my "no red meat" unless we're out.

Your holiday sounds really lovely and a real achievement for you. You'll both have the best memories...and photos worth printing and framing?

I'm getting my car back today, after DD1 and DGD1 borrowed it for a week to go camping/surfing. Will it be full of sand?

And I'm washing the door curtains from the back door. Which is not interesting!

Have a lovely day, everyone.

@MewithME I'm glad you had a lovely time, and your DS enjoys his steak. I want one now, by the nearest I can manage today is some sliced up homemade meatloaf I stashed in the freezer! Its the same animal anyway.

My mojo has gone AWOL today. DH is in my sewing room putting up a couple of shelves for me, so I can't do any painting, or sewing.

I might go in the garden and pull a bucket full of weeds after I have collected a Vinted parcel. Its a couple of dolls for the DGDs who are coming next week for a few days. They are from a cartoon, K-Pop something or other, that they are in to. They just look like Barbies to me, but apparently they are very different!

Enjoy the last day of your hols @MewithME and I hope DS enjoys his steak.

I was going to attempt a musical rehearsal this morning - the little group I run, although the plan was for me to just hand out music, make the tea and listen. Body had other ideas though and I'm dizzy every time I get up - thankfully other people could open up the hall and get on with things. I'm not sure if it's the effect of being back at work this week/ the move or my body actually telling me I was being overambitious and stopping me pushing myself. I don't want to give it up permanently but I think I need to make proper plans for other people to cover then I can just go if I do feel up to it.

Day mostly in bed I think, just getting up for food.

Sounds like a lovely holiday @MewithME and always a good sign if you don’t want to go home. Enjoy your last day.

Still a lot of pain here which is getting me down a bit. Actually that’s an understatement, I was in tears with it yesterday and partly through frustration at seemingly going backwards again. 😕
I was googling best painkillers to try and tips for post stroke shoulder pain as I’m unable to take anti inflammatories. When AI asked specific questions and then cleverly suggested that the failed canula attempt 2 weeks ago and subsequent bruising of an already compromised arm, probably means the shoulder muscles have been over compensating which actually makes perfect sense to me. Not sure why I hadn’t made the connection.
Doesn’t help the pain but at least I’ve got a plan now to go back to all the things I did when it was acute initially and if none of that helps back to GP I guess. Have got a stroke follow up but not til end of Sept which feels a long time!

So not up to much today but able to sit out at least as a nice breeze with my lovely cushioned garden chair and dippy dog is making me smile.

Sorry to those struggling today 💐

@martha79 it's probably the adrenaline wearing off from having moved. You've achieved so much in the last few weeks.

I think you're back up plan sounds very sensible.

Rest up!

@TodayIsabetterone sounds so hard. Hope you get some relief soon somehow x

Back at the cottage now. Afternoon nap before packing up.

https://www.bbc.co.uk/weather/articles/cgr7d28vvpno

Keep cool everybody

Urgh, we're getting back up to 30C. At least my new house is cool inside - does mean the chances of me getting out for bits of fresh air are reduced though.

I'm sorry as I am not managing to keep up with everyone's posts at all.

@TodayIsabetterone I'm so sorry to hear about your pain but really good that you have a plan and some questions to ask. I was thinking of you last week when having a cannula put in myself - it's horrible when it goes wrong and I'm so sorry if that has been giving you ongoing pain.

Made the mistake here of tackling of of my decluttering zones of Doom, under the guest bedroom bed. Sorted out various categories of stuff and got rid of a fair bit (with other stuff bagged up to leave the house) but have done for myself energy-wise. Not sure what I will tell DH when he notices that the bath is full of old glass storage jars (haven't got the energy to move them anywhere right now). Fortunately we are mostly shower people.

11 days until my consultant appointment. I am really trying to keep it out of my mind but it's hard. DH is a sweetheart and has been talking about some really low-key holiday plans for later in the year but I feel like we can't really plan anything until we know where I am at with my health. I don't want to wish any days away but I also wish it would come round a bit quicker!

Really weary this week but thanks all for posting, I've read every one!

💕

Thanks @VikingNorthUtsirenot really sure whats going on tbh but it’s definitely been worse since the canula incident. I have been in tears again tonight as it always seems to be worse in the evening just from very minimal use so think I probably do need a chat with GP if I’m able to get an appointment that is.

Ahh I’m sorry you’re waiting on the appointment with the consultant. It’s very hard when you’re a in limbo and can’t really plan just in case. I hope the news is positive and you’re able to make a plan to get away for a break.

Sorry youre so weary @TeaAndStrumpets Take care 💐

Thanks @TodayIsabetterone hope you had a good night.

Pretty well stuck on the sofa at the moment, ibs pain is bad when I stand up for more than a few minutes and I'm very tired despite a solid night's sleep. This too shall pass!

Nice phone catch up with DD2, they're taking the toddler to watch the cricket later, she is always mesmerised by it on TV so she will be delighted to see it's a real place! Pleasant up in W. Yorkshire today😎

@TeaAndStrumpetsSorry it’s so rough just now. ‘This too shall pass’ has been quoted a lot here too but you're right it will pass but sending a gentle hug while you wait.
How lovely to take the toddler to the cricket! Hope she enjoys it 😊

I actually slept okay thanks to DH suggesting we get the oramorph out again which actually did help the pain and relax muscles enough to sleep. I have it for emergency use but not a fan of taking it as don’t want to rely on it. But as DH said, these are exactly the times it is prescribed for. I seem to cope in the day with normal painkillers but then it really kicks in the evenings. Will definitely try an online consult tomorrow and hopefully get to speak to someone soon for advice.

Hope everyone can have a peaceful day and @MewithME has a good journey home.

Morning all. Sorry you're stuck on the sofa @TeaAndStrumpets. And hoping the time goes quickly for you @VikingNorthUtsire

I feel a bit better today - woke up early, had breakfast, went back to bed for more sleep. Have managed to get up and have a shower for the first time since Thursday (I have sink-washed and dry-shampooed, and I also haven't been near anyone 😅). Doing a few bits of housework that need doing but otherwise trying not to push it just because I feel a bit brighter.

I've noticed a pattern of feeling rough the last few weeks that seems to coincide with food - I have no appetite but I get really lightheaded when I need to eat, and then quite sleepy after more than a snack. There's a lot of history of diabetes in my family, and I've put on a fair amount of weight since being ill, so going to message the GP tomorrow - feels very tedious but I'd rather rule it out (or in, and know what to do about it).

@TodayIsabetterone glad you got some relaxation at last. I find with me it's a lot to do with tense muscles, literally top to toe! The pelvic area as well, plus sciatica, it all has a knock on effect. I 'm sure the cfs/me just inflames everything so much. I get swollen glands, sore eyes, the lot. Then when i'm feeling a bit better everything relaxes for a while.

@martha79 congrats on the shower! I ration myself purely to save energy
hairwashing, it's amazing how my standards slide at times 😊

Glad you’re feeling a tad better @martha79 and sensible to get checked out re diabetes though you’ve had such a lot to deal with re the move, it’s not surprising your body is out of whack.

Yes I’m exactly the same re tense muscles @TeaAndStrumpets and hold any stress/anxiety in my neck/ shoulders tbough normally that resolves with the osteopath and it’s had the opposite effect this week.

The weakness/ pain in my left arm is definitely stroke related and I actually think the shoulder pain could be too so I do need to get that checked. It’s difficult though as the ME/CFS complicates things and makes it hard to know what’s causing what! It could even be a reaction to adding in a new physio exercise as my body is pretty pathetic! Ah well, I got through it last time… this will pass!

Hot again today! 27 already and rising. I did get a refund on my broken water cooler/ fan thing so ordered another one ( different make) as it helped by the bed at night alongside the fan. Hopefully it will arrive today.

@TodayIsabetterone only 25° here so just nice!

I am so wary of exercise as I tend to overdo it! I saw a women's health physio and she recommended belly breathing to relax my lower abdomen but I can feel it tight all the the time so it hasn't really helped. The breathing is supposed to affect the vagus nerve so I must make more effort!