What are you up to today if you have a chronic illness? Thread 5

[MewithME]

Here we are again. 😊

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5458553-what-are-you-up-to-today-if-you-have-chronic-illness-thread-4

Well I've started watching Hijack, looks good.

I have obviously been in a tidying mood today. I decided to delete loads of unwanted emails from Gmail and (being a dinosaur) had to google how to do it. So I have mass-deleted several thousands, going back years, mostly eBay which sends about 5 emails per purchase! I accidentally deleted a few from friends and family oops but found out how to fish them out of the trash. So that's been my day!

@FuzzyPuffling that sounds like a very hard thing to do - much praise for being here to tell the tale! I suppose nobody ever knows what they are capable of really.

Morning everyone. Tried to read through the weekend posts as much as possible to catch up! @BodysBroken that's absolutely awful about your neck, I hope you've got someone looking after you.

Saturday I stayed home all day and pottered, which is my favourite type of day, resting and reading when I need to, doing house shit when I felt I could. Yesterday we visited my mother in law and a quick pop to Tesco on the way home.

Sleep over the weekend wasn't too bad actually, had two lie-ins but back to porridge this morning. Stomach hurts and jaw clenched - What's new? 🙄

Morning all!

Shocking adrenaline rushes overnight, obviously hadn't done as little as I thought. DH got really upset about something yesterday (non-domestic) and I was worried about him. Of course he's fine now but it is still bothering me.

@Realisation14 re the jaw every so often I get pain when I'm eating, it is in different places though so jaw rather than individual teeth. Sometimes the whole jaw has been in agony for a few days. When I saw the osteopath for my sciatica he also looked at my stiff neck and when he massaged the base of my skull I yelped! So tight in there, obviously must affect the jaw. I get sinus pain too.

Last night I went to bed clutching a hot water bottle for my stomach pain (IBS) It gets worse when I lie down. That's been going on for a few weeks, like a red hot needle stabbing. No wonder I woke up in a panic.

Hoping for a better week!

Gentle hugs for all.

@TeaAndStrumpets oh that's odd, I started Hijack last night as well. Season 1 is free on prime 😁

Stressful night up worrying about things

Morning!

I am falling apart. My eyes are gritty and dry, my scalp hurts and my skin is itchy and inflamed. What. A. Treat. Oh and I’m exhausted.

ds1 hasn’t gone to school as he said he felt sick again. He was off Friday and seemed ok all weekend. Ds2 then tried not to go too. Not what I needed today.

It's awful how the worry comes out at night....like monsters under the bed! Is there something specific, or are you feeling overwhelmed?

We watched Hijack on Apple+. DH was a bit meh but I enjoy Idris's performance. He was mesmerising in The Wire.

We’ve been watching a show called the ripple on Netflix, nice gentle show about lives intersecting.

And the bomb close to my house has also been removed! Not that I'm there at the moment but I've been following closely.

Checking in and trying to catch up with news. Sorry to hear about the rough times. I've been sitting around doing nothing much at all in slightly better weather than at home. Crocheted 18 squares for the blanket that I work on when I'm here, enjoyed shopping local although an unusually cold and wet winter has meant fruit and veg shortages. Another week and I'll be heading home so I hope I see some sun soon, but if I don't the change of scenery and pace of life is always good anyway.

Sympathies @FurForksSake when you could do with a quiet day!

My eyes have been sore and puffy for months. DH confirms I've got blocked Meibomian glands - I can't see them in the mirror but they do feel gritty. The treatment is hot compresses so I've bought an electric eye mask. I put damp cotton wool pads under the mask and steam them for 20 minutes. It has a timer and I often fall asleep.

@TeaAndStrumpets I wonder if I should buy one for dh, he suffers too. He’s found taking omega has really helped with his dryness.

Will look for The Ripple!

Bombs? Oh dear that's not good. There must be a few on the housing estate behind us. They were badly bombed during the war due to proximity to the railway line and plane and tank factories. There is a 'Nature Park' near us with a massive lake. After the war absolutely tons and tons of munitions and even vehicles were driven into it and lie there still!

A lovely start to the week (not) - a contrast MRI to see whether the Crohn’s Disease has returned 🫣 Sitting in my dressing gown in the waiting room drinking 2 litres of Klean Prep - what a start to the week! 🤢 Got to love chronic illness life 😂

I think it's by Wizard Research and it's about £100 but much superior to sitting there with a wet flannel! There are loads of much cheaper rechargeable ones but this one stays plugged in so doesn't go cool.

That sounds hideous! Hopefully you'll have a good result,

I put my coffee cup on my eyelids ( when I've finished the coffee!) for the heat. That, Baby Wash and prescription eye drops seems to have kept it at bay.

Sorry to hear everyone is struggling, hope you manage to get some rest and/or generally feel better.

I am being spammed HARD by Visible - does anyone have a tracker/the app and how do you find it?

DH says he thinks obsessing over stats won't be good for my mental wellbeing (which is probably true but also feeds into my paranoia that he somewhere deep down thinks that I am making up my levels of fatigue 😢). I think it would be really helpful to have an early warning that I'm overdoing it.

I don't have any kind of fatigue diagnosis at the moment. Going through the motions to try to get one (I have other conditions but this seems to be an issue all of its own)

It's so annoying isn't it! I seem to be allergic to so many drops and wipes. I also get eczema in this dry weather so my eyes look charming! Every so often I put Vaseline around which looks weird but at least I don't react to it.

Yes, @TeaAndStrumpets . I much prefer mechanical methods to help, rather than more drugs! The dry eyes are a feature of one of my chronics. Happy days!

@VikingNorthUtsire is that the one that says STOP if you are exerting yourself too much?

I've had CFS for years and it worsened dramatically during the first wave of Covid. I had a painful burning chest for weeks but of course there were no home tests in those days. I have always wondered if I had it. I had the later variants a couple of times too.

During Covid I bought a pulse oximeter but the heartrate monitor was a game changer. I found out my heart rate maximum and tried to keep below that. There's loads online about pacing and it is the only thing I've found that works to warn you you're overdoing it.

Morning all and sorry to those struggling.

@DoYouWantHalfThisSandwich gosh that sounds rough, fingers crossed for a positive result.

@VikingNorthUtsire you can download the visible app for free without buying the band. I did that first to get an idea of how useful it might be. It obviously doesn’t track in the same way as the band but you can still use it each morning to test HR & HRV. I use it most mornings when I remember to get a score for the day and I do feel it gives some validation in a way. Almost gives me permission to rest/take it easier on a lower score day. You can also track symptoms each evening and do the monthly questionnaire which shows how symptoms fluctuate over time.

Im still struggling today and feeling really down on top so fighting back tears tbh. It’s my birthday tomorrow and DH & I had vague plans to maybe go out for lunch if I was able but cant see it happening and whilst that’s okay, I can’t help feeling sad that pretty much all my birthdays since ME ( 20 years) have been a struggle. I’m normally fairly accepting of my limitations these days but today I’m just bloody fed up of life being this way and everything being so hard. Sorry for the doom and gloom but I know you’ll all understand.

@TodayIsatrickyone big hugs, I usually feel sad around my birthday and I can’t even really say why.

Instead of going out to lunch could you get food delivered or send to Waitrose or a deli for all lovely things you fancy and have a home picnic? And then have an iou for a day when you feel perhaps you could go? I know sometimes people have a sudden better day and the PEM feels worth it.

Be really kind.

Thanks @FurForksSake that’s probably what we will do instead and aim to go out on a better day instead. That’s generally what happens anyway, I’m rarely able to celebrate so not sure why it’s making me sad this year!

It’s ok to be sad, it’s ok to feel angry about needing to make the best of it. It’s ok to grieve the birthdays you wish you’d had.

Happy birthday for tomorrow @TodayIsatrickyone and sending you a huge hug.

Can only second @FurForksSake's suggestions of a home-based celebration plus an IOU for a date when a lunch feels doable.

I know it utterly sucks to have to reframe everything and manage your expectations. You DESERVE your nice birthday. But I wonder if you can think of any treats that do fit into your current energy levels? A night with a really good film (one you actually want to see as opposed to just what's on)? Expensive toiletries? Just trying to think that just because you can't get your meal out, doesn't mean no celebrations.