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. 🌲🌲😴🤕🤗

Hello. Would it be ok if I join? I was diagnosed with Multiple Sclerosis 2 days before Xmas. Currently in that horrible limbo between diagnosis and waiting for input/treatments. Ive been quite unwell since September but the consultant put me on some high dose steroids over Xmas and this week im starting to feel a bit better.
My house is a disaster zone and will have to stay that way for awhile because I dont want to risk a relapse.
I am doing a full time degree with the Open University as well as working full time so need to put some time and energy aside for my assignments due in feb.
I am definitely an overwhelmed anxious mess at the moment!

Argh @TeaAndStrumpets time wasters must absolutely drive you nuts but I’m very excited there may be things happening re your connection. ( I wrote something about men and poles but sounded a bit benny hill like so had to rephrase 😂) You will be giddy with joy when it finally happens 😊

No snow here but such a cold wind. No rain today at least unlike yesterday so that meant we could take the diddy dog out. Far too muddy for my scooter wheels so was a slow walk with the perching stool which slowly sank into the field! I noticed today I am slowly getting a tiny bit further around the field though so thats a positive. Every few weeks Ive set a new goal of the next tree along if I feel able. Very slow and only once or twice a week but there is progress.
Back on sofa listening to my audiobook.

Welcome! That sounds like a lot to deal with as well as getting your head around a new diagnosis. One day at a time and be kind to yourself whilst you take it all on board.

@Rockfordpeach welcome, you must be so in the middle of everything right now. Do make time to get your head straight and think about how uni can help you. I’ve just taken a year off from a post grad due to ill health and honestly the weight off my mind has been amazing.

@Rockfordpeach sorry you need to be here but pleased you found us! You must be in a tizzy at the moment. Hope your way forward becomes clearer soon. Wishing you all the best.

Hello @Rockfordpeach and welcome. I feel a bit odd saying that, as I've only been here since the last thread. Glad I found this corner though, where people actually get it!

You sound as though you have any awful lot going on, and i hope you have good RL support.

@TeaAndStrumpets gosh that sounds frustrating people continuing to come in and out.

@Rockfordpeach sorry to hear about your diagnosis that must be a shock for you. Any diagnosis takes time to get your head around, be kind to yourself. From my own experience with secondary cancer (appreciate not your situation) is once you get on some sort of treatment plan and know what you are looking at mentally, it becomes a little easier to be able to get your head above water. I was quite ill before my diagnosis and our best purchase was a robot vacuum cleaner. I was always a bit skeptical but this morning I put it on and just vacuumed the skirting boards with our normal cordless. Downstairs looks sooooo much better and hasn't depleted my energy levels. Something as small as that feels like quite an achievement.

I enthusiastically second the robot vacuum cleaner! With a lot of our house packed up pre-move it has become very apparent a good declutter makes the house very easy to clean! It's the tidying that takes the time.

Hi @Rockfordpeach welcome to our little family!
I would love a robot vacuum but we have so much dog hair and obstacles I think it would give up. Maybe when we eventually buy our own house.
Off sick for 3rd day going back on Monday. Cracking headache, sinus, neck pain, whole head feels blocked. Light headed, achy. Think I just have a cold and also a bad time of the month. Body telling me to rest anyway so I'm listening.
Landlord still being unreasonable but we have the law on our side. DH has had some very good advice and I'm looking for houses.
Somewhere in the middle of nowhere with no neighbours would be great!
Going to get up, feed dogs and sort washing out.
Love to all

Lovely day here resting, knitting and drinking tea 😊

The storm came to nothing, just the odd bit of snow left now. Nipped out with DH earlier to do a couple of errands and the roads were normal. Bit of an anticlimax really 🤷🏼‍♀️

Have a peaceful evening all 💕

We were in the Amber zone and literally it was raining when I woke up at 5.30 this morning. Literally half hour up the road to the north of our County had schools closed and 4x4 rescuing medical staff from hospitals. Bizarre how we completely missed it but the towns around us got it.

Wishing you all a lovely peaceful weekend, and hugs to those who need them.

I’m struggling a bit mentally, but it’s part and parcel isn’t it. My adult DDs have fallen out, it’s over nothing but they’ve both blown it out of proportion, had two days of them both unloading stuff on me, and I’m done with it tbh. It’s my nature to try and swoop in and sort stuff out, but I don’t have the energy right now. So I’m forcing myself to take a step back and channel my inner Mel Robbins and just Let Them. Easier said than done.

And I can’t keep warm, my core temp is always below normal, it’s just me, everything checked out fine at doctors. It’s exhausting being chilly. I look lovely in my thermals, oodie and fingerless gloves! Poor DS is baking in T shirt and shorts with thermostat being on high. Hips and shoulders painful, thought yesterday’s yoga would help, it did mentally but think I’m paying the price physically. Haven’t been to pool this week due to weather. Anyway, I’ll stop being a moaning Minnie, so many of you are coping with so much more than I am, bless you. X

@Middlemarch123 you are right to let the squabbles wash over you, it's too much stress. My DDs never argued growing up but individually they have caused me a lot of sleepless nights. Unsuitable boyfriends ( - and husbands, which is even worse!) It would have been easier to let it all wash over me but most of the stress came from biting my tongue! I'm sure your girls will calm down in time but it's difficult being in the middle.

I also feel the cold terribly, and I have a fine selection of thermals!

It's such a treat having streamed TV again. We have resumed watching Pluribus which is brilliant. We finished the final episode of the Dinnerladies DVD first. It is so brilliantly written, and with a sweet ending - I felt a bit tearful.

@VikingNorthUtsire Oh, I want a groke pin, I love that you wear it to work, a sort of secret handshake to the Moomin cognoscenti. I like your username too, just finished a book by Peter Collyer, who travelled round on lots of ferries painting various patches of shipping forecast sea.

Just checking in before I tuck up. A very late night for me! I hope I don’t pay the price tomorrow but I probably will.
Glad that everyone seems to be reporting in okay after all the weather incidents.
Hello to new posters and thanks for the welcome from the esteemed old guard!
It’s been cool and wet here for the past few days. I run very hot and like a good freeze but I know I’m in the minority. I’ve always leaned that way but think my health wonks make it worse. I probably need to move to Svalbard or see if a Moomin could put me up. I do rather fancy their midwinter with the ice and the lantern.
A friend popped by with a late Xmas pressie today and it was Wintering! Am happy to have my mitts on it at last. Have also found a radio dramatisation of Strong Poison to accompany my tapestry. I sound as if it’s 1933, sometimes it is in my world! 😀

I needed some help getting down the steps after work as I thought I was going to lose my balance but that's about it.

It's odd as as long as I can rest my hand lightly on someone's arm I'm fine. I don't know why they can't get a railing though?! It's an old building, sure, but there is no disabled access.

@Middlemarch123 your struggles are just as valid as everyone else's.

Can't comment on the girls but do feel for you. It can't be easy being stuck in the middle all the time. Sorry to hear that you are struggling with the cold it doesn't sound pleasant.

I have finished Wintering so have ordered another of her books, hope it is the same kind of thing.

It's a sunny day today and a bit milder which is good.

Morning all l. I'm in bed with coffee 2 watching steam rise from the ice on the fence and listening to the birds. It's a glorious morning.

I will try and venture out for DSs sake though I can hear a car crunching through ice right now so I will wait until the sun melts it a bit more!

Not sure where we'll venture. Need to think about the side roads. It's quite iffy in places still and I'm not too full of energy (Ha!)

Going to catch up on your posts now busy, chatty bees 😉

@Orangesandlemons77 is it Enchantments? It's a beautiful book too. I think she's wonderful. I want her to be my friend. I follow her on Instagram and she looks so lovely 😊

@Middlemarch123 I'm hopeless at remembering who has what illness, but I find that the upside (haha) to MEcfs is that it stops you or gives you permission not to get sucked into other people's drama. Even nearest and dearest. It will blow over or else they'll have to work it out themselves.

@Kitterkitkat can you raise this with your manager? This doesn't sound right. It's not safe for you.

@Bluebellsandwishingwells love the sound of that book! Also lol at "the esteemed old guard" 😁

Yay! So glad you're reconnected and enjoying Pluribus again. It is an amazing show. She's brilliant l, the lead.

@Stressybetty sounds like you're getting through it. Hope you find somewhere lovely. X

Welcome to you but what a lot you are dealing with. How can you work full time and study full time? That sounds too much even for someone not dealing with health issues.

I would seriously think about going PT or deferring until you're a bit more stable.

That early stage after initial diagnosis is a lot. Even though in my case, the diagnosis is where it stops because the doctors basically do nothing and ignore you if you have MEcfs in my experience, it takes a long time to adjust. I felt so anxious and overwhelmed thinking about the future and coping with it and not getting worse. I'm a few years in now, and while the symptoms haven't improved, I am more equipped mentally to deal with it. While it's great you have meds that will help, they'll take some adjustment too.

Give yourself time.

Well... I headed to work this morning and my car hit a patch of black ice and i ended up on my side in a ditch, suspended by my seat belt for half an hour until the fire service got me out. Been checked over by paramedics, bruised and tearful but im ok. Home in bed at the moment