What are you up to today if you have a chronic illness? Thread 7

[MewithME]

Last thread 🧵

https://www.mumsnet.com/talk/_chat/5490534-thread-6-good-griefwhat-are-you-up-to-today-if-you-have-chronic-illness

Fill up last one first 😁

Thanks for the support everyone 🙏🏻

I've got through today. Bit hard going but I'm ok enough. Thank you @Tiredandwired2 ...Had a good response to my email with school and a call from the Head of Year. Exams end tomorrow for DS! Has not been the best few weeks. I'm looking forward to time alone this weekend. I just need to switch off and not feel responsible for anything for a bit. I mean, I am physically not doing great but mentally I am just overloaded I think.

I'm having scrambled egg for tea. Scared of any repeat of yesterday. I honestly think it was th crap I ate for yesterday's tea. I am exhausted so end up with upf rubbish and then my body seemed to reject it!

If it was just my food I would eat better but DS is so limited with what he will eat. I can't eat the same and I don't have energy to do X2 every night. So he's getting an omelette and potato waffles. I'll have egg on toast. That'll do. Similar enough. 🙈

@MewithME glad that the school were responsive. It makes all the difference.

the mental load with kids is always hard but with chronic illness it's unbearable at times. It sounds like your ex doesn't pull his weight either (and often even making things worse for you) so your carrying it all. Hope your break helps a bit.

snap! I’m having scrambled egg on toast for tea also! 😊
currently in bed and planning on not leaving for a few days I’ve had my first proper crash since Saturday evening and had to go off sick from work. The positive in the situation is I have discovered that apparently light is a trigger for me- my visible results yesterday were really high during the afternoon and seemed to get better when I closed the blackout blind. Tested my theory today and kept the blind closed all day have been more rested just lying down and listening my audible book so plan more of the same for rest of the week.
Hope everyone has a nice restful evening

That's a good bit of sleuthing @Dozymoo42 . I haven't worked it out from the data but I know my light and sound intolerance is worse when I have PEM.

I always have the sun visor down when driving, even when it's cloudy. When I'm low, I can't have the radio on. I knew I was struggling yesterday because I had to shut the curtains when I was working which is unusual for me. I usually have them closed in my bedroom these days.

I've just been scrolling for something to watch but might put my podcast on instead. Good point 👍🏻

I was quite impressed with myself! I am really trying to notice anything that can help me navigate this.

I’m watching a Christmas film to cheer myself up 😂 I user the term “watching” rather loosely lol

Ohhh just remembered there's a channel 5 drama to watch that won't require braincells 😁

That's really interesting about the light @Dozymoo42 - I'm definitely more sensitive to it than I used to be. Wearing a cap when I go out, and moving round the house to work depending on where the sun is.

Had quite a good day at work, then this evening I've felt ok enough to be bored but not ok enough to do anything interesting or productive.

I had scrambled egg today too! Got bored of the ready meals I was having delivered so I'm on meals with minimal cooking/ throwing together of ingredients this week.

One of my fave low effort meals scrambled egg, also beans on toast with cheese! 😋

next time I go out am going to test my theory with the light by wearing my sunglasses as it might improve my energy usage when I’m out and about fingers crossed it’s not just the walking 🤞

I might try that too @Dozymoo42, just to see if it makes any difference! Do let us know if it does for you

Will do @bedfrog it might get next week I test it I plan to rest properly all this week!

Morning all. Had a not too bad sleep last night - and forgot to set my alarm so slept in a bit (thankfully my work start time is flexible). I have the excitement of two hours of data protection training this morning!

Was thinking last night about how hard it is to find 'nice' things to watch - no wonder everyone is so stressed and tense when so much of what's on TV is crime and lots of drama! I did watch Grace this week because I've previously loved that, but was reluctant as it's usually quite grim (but actually was a bit bored by this series). Likewise, feeling like I might possibly manage a cinema trip before too long but apart from kids films, it's all horror, crime, "tense drama", "crisis", violence, someone trapped in a subway tunnel with no exit (AARGH). Oh, or four hours of opera...

I had an hour long MRI and a drug given that induces your heart to think it’s doing extreme exercise yesterday, I have already been out for a blood test this morning. I just feel knackered. Instead of going to my voluntary job I’m sat eating pistachios on the sofa watching Tremors as it’s on ITV X. I have a few bedding plants to put in a big pot so will do that later. DH is putting the cushions on the garden sofa so I may listen with headphones on to music in the garden later,

Sounds like a good plan! Plenty rest sounds in order after that MRI

@Dozymoo42 Light absolutely impacts me. I often have to wear a cap or sunglasses. It reduces the 'cost' of the activity. Driving at night is horrible too, I try to avoid it because my eyes are so impacted by oncoming bright lights.

Just attended an online presentation that my local health board does on CFS/ME. Really good to get an overview of what they offer. More than I thought actually. I feel lucky that I have that available in my area.

I have been job searching today. Not at the stage of applying but considering whats out there. I don't know if I can manage my previous role in any capacity so looking outside the box but that means starting all over again.

Charlie bighams for dinner and no plans so its time to rest/potter.

Home from work and drinking a cuppa in the sunny but v windy back garden ☀️

DH is in the kitchen cooking a mammoth cottage that will last for 2 days 😋

It's Wednesday @MewithME and my working week is done ☺️

Cottage PIE! It won't let me edit it now 🤣

Yum, big cottage for tea 😂I've been constantly hungry today - whatever I eat I'm hungry again really quickly.

Busy work day done, just having a sit down before I go out and water the garden as it's quite dry and we've no rain forecast for ages.

@martha79i agree with you on tv, everything is so overstimulating!! I've been listening to audiobooks instead, you can get classics for free on librivox. As for tv I've been watching doc Martin and Alan Titchmarshs weekend show. Then getting adverts for river cruises and home care, like I'm 90!!!

@ViciousCurrentBunlots of rest in order for you then! Sounds like a real drain

Today I sat in the garden for a bit and then dh came home unexpectedly early so we sat in the living room and chatted which was lovely. I'm trying to look at screens less as it's knackering for me. Making a deconstructed fish pie for tea (fish in parsley sauce with mash on the side) then tonight will be knitting on the sofa and maybe a gentle short stroll around the block. Have a good evening everyone!

My son in law made chicken wraps for tea and I’ve just had a lovely piece of cheesecake and a brew.

Still resting in bed but feeling a little more present with the world than I have done so far this week so I am hoping it’s showing I’m doing the right things to get well. Had a lovely chat with a lady from the ME clinic who thinks the time off work will be beneficial to me as I have literally not stopped since Christmas when I had the big bout of PEM and then ploughed on right through diagnosis- DH is estatic that someone with medical knowledge has confirmed to me what he has been saying and is hoping that I will listen now 😳

Yes! Thanks @Swanhilde .. glad you can rest and in your honour, I have just had a chunk of cheese and my bestie's marrow pickle as a supper treat.

. I had a very busy day but at least a productive one. Busy until the weekend but either I'm just getting that dangerous buzz from adrenaline of being super busy or I'm feeling a little better. This illness is just silly sometimes 🙄

Sorry if there's typos. Don't know where my glasses are!

I've been hungry today! Made up for dismal effort yesterday. Found some good homemade stuff in freezer. Ds was with his dad for tea so made it easier for me.

Exh is off on holiday again at the weekend. Only just told me and it's his weekend to have DS. He wasn't happy because I asked his flight time and it's not till late Sundays so I told him he can't drop DS back until Sunday morning. I really need a rest!He says he wants to see ds more and then does this nonsense all the time. Still he's done it for over a decade so quelle surprise!

Sorry you have to deal with ex's nonsense @MewithME

Starting today also hungry! Woke up at 4.45 and I'm now sitting in bed with a cuppa and a sandwich. Might try to doze off again for a bit but I'm annoyingly awake.

That drug sounds terrifying. At least if you are actually running you can stop. Hope you're ok now.

DH and I are off to the Beryl Cook exhibition ("Pride and Joy") for the second time. And lunch in town too. Hurrah- I hate cooking.

Morning all.
Hope everyone ok today.
@FuzzyPuffling sounds like a lovely day ahead.