What are you up to today if you have chronic illness? Thread 4

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5438353-what-are-you-up-to-today-if-you-have-chronic-illness-thread-3

This is the bumper Christmas issue with the added challenge of all the work Xmas brings and feelings it might bring up...but we're here. Highs and lows. 🌲🌲😴🤕🤗

I do my wrapping with the TV on... Still pending this year as currently getting over a flare up 😞

@Songlines that sounds very cosy!

@Songlines That sounds so lovely! I never get tired of the sound of rain, but it has to be real rain, oddly, as though nature sound CDs give me a headache, ha. And very, very best of luck with your MRI! I find them really difficult, personally, and I just hate head MRIs. And why do they always make them at silly bloody o’clock? I don’t know where my fucking socks are at 750am, much less can pull it together for an MRI 😂 (Apologies to any morning people with chronic illness - I’m in awe of you!)

I’m up at 4am with pain after only going down at about 11pm with an absolutely stonking headache. I don’t know if anyone else has this problem but if I have a headache when I go to bed, then awaken at 4am without the headache, then I’m leery to consciously decide to go back to sleep because I’ll often awaken with the headache returned. But I’m also just having more and more pain. Stupid diseases.

Another shitty night's sleep and I actually feel like screaming with fury about it this morning because I have such a big day today and that's two awful sleeps in a row now, I just know I'm going to really suffer today so I feel like crying already and I haven't even got out of bed yet. DH brought me a cup of tea up so I'm just lying here drinking that and trying to control my annoyance.

@FFSToEverythingSince2020 that sounds miserable, hope your headache recedes now you're up and doing.

@Realisation14 hope your day improves. The stress of knowing you have things to do makes it worse if you're a bit down already.

@Realisation14 Sleep: I’d LTB if I could. Such a struggle. Only solution: MORE TEA.

@TeaAndStrumpets Thanks love!

@FFSToEverythingSince2020 agree with that, tea is the answer along with pepsi max for me! Whatever gets you through the day. Hope your headache is better.

@Realisation14 it's shit when you have a full day ahead and no more time for sleep. I get quite jealous of DH being all rested and alert first thing.

@Stressybetty Ah yes, my DH isn’t chronically ill, but still resembles a drunk, confused panda for about 20 minutes after he wakes up. I obviously resemble a drunk, confused panda for half the day though. Dammit.

I've popped to the supermarket, conveniently at the end of the road, and have the library and the pharmacy to do later.
But it's coffee time on the sofa with a cuddly cat now.

Back from my massage - apparently my left glute is like a brick! 🧱

Back in bed now with a coffee. Will rest this morning then get on with some wrapping this afternoon. I have bought some new stamps to make gift tags with so I'll have a go at that too 🎁

No idea what's for tea, think it's a day of fridge foraging. Probably an omelette 🍳

Have a restful day all 💕

I did a few minutes lifting up unwanted books to make a charity pile, but it was a bit too much effort so that's my contribution done. Usually we go round the local charity shops to offload books, but I just found out that our friend's village church takes donations, so they can go there.

It's a terribly gloomy rainy day here, definitely huddle by the fire weather! All presents wrapped so I feel on top of things for once.

Stay cosy, all!

Me too. My list of allergies and trigger foods has got longer over the last 5 years or so. Now my diet is so repetitive and boring, but I get so exhausted by cooking I cant be arsed with new recipes. It's worse at Christmas, eating out is impossible and I am the most dreaded guest...

Your days sound lovely @FuzzyPuffling and @Swanhilde .

Sorry to hear about the rainy day @TeaAndStrumpets but you sound really on top of things!

@MsWilmottsGhost I’m sure that’s not true about being a dreaded guest 😂Food triggers and allergies are an absolute pain, but anyone with an ounce of sense knows it’s not your choice or your fault.

@MsWilmottsGhost I sometimes feel like the most inconvenient guest! I once went to a wedding where I'd phoned twice in advance and ordered a plain piece of lamb, without the sauce, and plain carrots. Nothing else on the menu was safe. So on the day my lamb was proudly presented unsauced, but covered in black pepper, the carrots were in a communal dish and covered in butter. I just sat there with my glass of water and tried to stay cheerful.

I have learned my lesson and the weddings I've been to since I take a coolbag with my own food in it.

My nose runs whatever I eat! My family are v amused by it. I did one of those send your blood off in the post test things - all it showed was a mild intolerance to rhubarb!

Still, the shear number of antihistamines I take should cope with any allergies and I have learnt to always have a tissue on me 🤧

I'm sure that is definitely a thing, I've read about it somewhere.

Google says it's Gustatory Rhinitis. Caused by facial nerves eg trigeminal being irritated by what you are eating, but not an allergy per se. Spicy food can do it.

Just a delicate flower @Swanhilde !

🤣😂🤣😂🤣 That I am @TeaAndStrumpets

And thanks for putting a name to it, it's really interesting 🤧

Google also says that it can be a misfiring of the nervous system, which also makes sense. It only started with LC and my nervous system has definitely gone to pot 🥴

Oh that is very interesting.

I have felt a little stronger today after my hospitalisation and so Oh took me out for a coffee and a little mooch round a shop. I then changed my bedding as small human has been in there coughing and sneezing and he’s now away for the weekend at a wedding so ai want my safe bed back.

I intend to have a completely lazy few days ready to hopefully be able to do some Christmas.

Ulcerative colitis symptom wise, I’ve improved but have been bleeding a lot again today when here was barely any yesterday, which is annoying. I have my next infliximab infusion due on Christmas Day (of course, I can’t get confirmation of my appointment which is a bit of a stress as need to know for plans).

Have a peaceful evening everyone x

Glad you got out for a coffee and mooch @ForLoveNotMoney that is always a mood booster after being shut inside.

Took 'NotMyDog' home this morning in the pouring rain. We walked because part of my managing my Ehlers Danlos symptoms is to keep my body moving. I got soaked! Then went to visit an elderly gentleman in his care home before heading home. That finished me off, 2 hour nap on the sofa and a cancelled evening out. I'm quite glad, tbh, because I'm going to take a drink and a book upstairs, have a long bath and an early night before having to be at the hospital at 07.50 for my MRI. I have these annually but the last one threw up some changes so they've snuck another one in. Can't say I enjoy having my head stuck inside a magnet for 40 minutes but if it helps keep me out of surgery then that's a good thing.
And it's STILL raining

Im coeliac with bad IBS. It's extremely limiting, but I can still have wine 😉

@Songlines that sounds like full evening! Hope all goes smoothly tomorrow.