Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

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

1000 replies

MewithME · 11/12/2025 16:43

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. 🌲🌲😴🤕🤗

What are you up to today if you have chronic illness? Thread 3 | Mumsnet

Link to last thread. [[https://www.mumsnet.com/talk/_chat/5406424-what-are-you-up-to-today-if-you-have-chronic-illness-part-2 https://www.mumsnet.c...

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

OP posts:
Thread gallery
18
ForLoveNotMoney · 16/12/2025 19:23

I had my lazy day as I planned. Managed a bath and washed my hair.

My ulcerative colitis symptoms always increase in the evening/overnight so currently sat waiting for that joy to start. The high dose steroids make me crave oranges too and I’ve caved and eaten real life oranges (I eat low residue in a flare) so will most definitely regret that choice later! The smooth juice just wasn’t hitting the spot.

My son is fighting a cold too and has been very quiet and cuddly tonight. I’ve dosed him up and snuggled him into bed. I really hope I don’t catch it as I’m severely immunocompromised.

Heading up for an early night tonight as I’m just so bored currently. Can’t focus on reading, watching anything, even doom scrolling gives me zero joy. I just want to feel normal again.

MewithME · 16/12/2025 20:18

Aw @ForLoveNotMoney hope you get some rest. I get a lot of joy from audiobooks when telly and reading is too much. Does that work for you?

OP posts:
FuzzyPuffling · 16/12/2025 20:56

I listen to Radio 4. It chunters on and I can dip in and out.

MewithME · 16/12/2025 21:58

I like a bit of Radio 4 though I tend to listen on BBC sounds so don't know if they're programmes in catch up or made as podcasts.

I like the Reith lectures this year but I need my brain for that!

OP posts:
FFSToEverythingSince2020 · 16/12/2025 22:14

MewithME · 13/12/2025 10:20

Morning all. I was late to bed... unusual for me so had a doze with a podcast when I woke up.

The buzzing thing is most of the time for me but not always as bad. Certainly worse when I've been overdoing it which has been inevitable with work lately.

Just having my second coffee and a hot croissant from the oven then I'm going to have a nice bath.

It's foggy here but imagine it will brighten up later.

I'm getting a new armchair delivered which is exciting. I'm hoping they'll put it where I want it and I won't have to do any moving.

I've trying to get some new things and move forwards a bit. Without boring you about my past trauma, or making it too identifying, I lost my marital home to my abusive ex. I never 'moved out'. He just scared me and changed the locks when I wasn't there so I got some possessions back through various means. I think it's meant I've been overly sentimental about stuff. I've had this same chair for twenty odd years and it was only an IKEA job. Nothing special. But it's where I nursed DS and I've clung on to it. Well, I've bought a comfy new one where I can read if I am up to it. But I think it means the old one has to properly go. I haven't got anywhere to store it. I thought about taking it to my office at work but I think I need to just let it go. I will maybe try Freecycle.

Trauma is a strange beast.

Anyway, food shopping delivery coming later and my gorgeous friend is dropping in too.

I wish I could both “agree” and love this.

I haven’t been on the previous threads, but the more ill I get, the lonelier it is. I have a joint neurological/rheumatological issue, and years of illness have caused premature menopause, and my pituitary gland has completely packed in. I think it’s definitely changed my personality, and obviously, it’s destroyed my body.

@MewithME I just understand absolutely everything you’re saying. I’m slowly starting to accept that my ex was unintentionally abusive. When I finally had to move out, he threw away everything I owned. I collect stuffed animals and he threw away some of my most treasured ones, not to mention my expensive camera, as I was a photographer before I got sick. He threw out the wedding quilt my mother handmade for us. A very kind stranger bought me underwear, a blanket, and socks; I was so, so grateful. Trauma is the very strangest beast. My new DH gave me a stuffed animal for my birthday and I had a bit of a meltdown (I got it earlier than my birthday as I was in hospital and he hoped it would make me less lonely at night - I ALWAYS cry at night in hospitals. Everything just seems worse and more painful and so lonely.)

I have an emergency doctor’s appointment tomorrow and I fear another hospitalization.

I hope you’re doing okay today, OP, and all those really going through it right now. You’re not alone, even if it sometimes feels like it. 💐

VikingNorthUtsire · 16/12/2025 22:40

@FFSToEverythingSince2020 I really hope your appointment tomorrow goes well. Much love to you and anyone else carrying the weight of past traumas.

FFSToEverythingSince2020 · 16/12/2025 23:04

VikingNorthUtsire · 16/12/2025 22:40

@FFSToEverythingSince2020 I really hope your appointment tomorrow goes well. Much love to you and anyone else carrying the weight of past traumas.

Thank you so much; this is incredibly kind. And yes, I know trauma has probably played a direct result in how my diseases have developed (remission is a possibility, like with many neuro/rheum conditions, but my doctors haven’t been able to even stop the progression in a decade, much less get me to remission, sadly).

And yes, I’m quite nervous about the doctor. Because of the illness, I’ve developed an aversion to hospitals, and the worse my illness gets, the worse every visit gets. Last time it took them eight tries to get blood and put in a cannula, and finally an anesthetist had to do it. The bruises had just barely healed from that, and here I am again.

Anyway, WAY TOO MUCH about me. I read your comment and I will keep all my fingers crossed for you for the fatigue support! I don’t know if you’ve already filled out the questionnaire, but my doctor’s recommendation on these is to fill them out with your worst day in mind, not your best day or the norm, because you need the amount of support available that you need in the worst days. (Maybe they advised you differently though). I also understand being reliant on your partner; I can’t live alone, so I was stuck living in a pretty unpleasant situation until I moved in with my best friend, who became my DH. I know there are tons and tons of people without partners, and I feel for them if they don’t have another support system. Sometimes when you’re absolutely on your last legs, you would just give anything to have someone who cares and will make you a cup of tea.

Middlemarch123 · 16/12/2025 23:18

I have only skim read the last few pages and will read properly tomorrow. Just want to send hugs and best wishes to all who are suffering with pain and loss. Heartbreaking. You are all inspirational and stronger than you think.🌺

RuddyLongCovid · 16/12/2025 23:58

There's a chronic illness thread? Love this! Now I don't feel so alone 💞.

Sending lots of hugs. As well as my username condition, I have lots of other things going on.

Wishing everyone a restful Christmas x

FFSToEverythingSince2020 · 17/12/2025 00:16

@RuddyLongCovid Oh gosh, long COVID is just awful. It feels like I’ve met so many people suffering with it. I hope you can have a peaceful night.

RuddyLongCovid · 17/12/2025 00:38

FFSToEverythingSince2020 · 17/12/2025 00:16

@RuddyLongCovid Oh gosh, long COVID is just awful. It feels like I’ve met so many people suffering with it. I hope you can have a peaceful night.

That's really kind of you. Thank you. Same to you x

Realisation14 · 17/12/2025 08:09

TeaAndStrumpets · 16/12/2025 17:58

Hoping for a quiet worry - free evening! It's our umpteenth wedding anniversary today so I've got some nice flowers to look at. No cards from DDs, they usually remember but they are both overwhelmed.

The postman called me Sweetheart yesterday, today I've been promoted to My Lovey! Wonder what I'll be tomorrow?

Happy anniversary @TeaAndStrumpets , hope you enjoy the flowers view! I'm loving the postman's terms of endearment.

Realisation14 · 17/12/2025 08:13

RuddyLongCovid · 16/12/2025 23:58

There's a chronic illness thread? Love this! Now I don't feel so alone 💞.

Sending lots of hugs. As well as my username condition, I have lots of other things going on.

Wishing everyone a restful Christmas x

Welcome!! This is a fantastic thread and makes you feel in familiar company.

Realisation14 · 17/12/2025 08:15

Morning all, absolutely rotten sleep 😔 feeling very tired this morning. Have to go out at lunch time to meet sons therapist in the community to discuss exposure therapy 🙈

TeaAndStrumpets · 17/12/2025 08:23

Realisation14 · 17/12/2025 08:09

Happy anniversary @TeaAndStrumpets , hope you enjoy the flowers view! I'm loving the postman's terms of endearment.

Thank you yes the postman is very cheerful I reckon it's his standard greeting!

Unfortunately I can't drink anymore and allergic to most foods (including chocolate sob) so no romantic meal, but we have had romantic cups of tea maybe? Also spent much of the day having an ongoing spirited debate about whether to rearrange some furniture. Ain't love grand!

TeaAndStrumpets · 17/12/2025 08:24

Saw new members of our merry band, will catch up later, but hi to all.

TeaAndStrumpets · 17/12/2025 10:41

@FFSToEverythingSince2020 I'm very much hoping you get through your appointment OK. You have been through a lot and I can totally empathise with the fear of medical things.

@Realisation14 hope your meeting with the therapist goes well.

DGS wants to go to college next year and is already worrying in case he sees anyone in the street who knew him at school. There were a couple of boys at school who scared him but he doesn't want even the nice ones to recognise him. Just the association with school causes him fear. Also wants to not be different at college, hates his ASD label, wants to pass for "normal" . I feel very sad for him. Thankfully when DD took him to see the college they met the SENCO who was very kind and reassuring. So fingers crossed.

LivingWithMEisPants · 17/12/2025 11:09

MewithME · 16/12/2025 19:16

@LivingWithMEisPants ...my brain fog is real. I read your post. And clocked that it's posted twice and then started reading your duplicate message...but still read it before thinking...oh yeah.... 🙈😆

This really made me laugh as it’s totally the kind of thing I’d do too.

FFSToEverythingSince2020 · 17/12/2025 11:25

@Realisation14 Oh gosh, so sorry about your sleep! It makes it so much harder when you already start the morning feeling like death warmed over. Hope it goes well with your son’s therapist!

@VikingNorthUtsire Thank you! I’m now back home, so exhausted I can barely move. They took bloods and they’re checking for low potassium, B12, and kidney/liver function. They got the blood on the first try! I hope you’re doing okay today ♥️

And @TeaAndStrumpets your poor son; I understand! I was desperate to re-invent myself when I got to university (I know a bit different than college). But the older you get, you know yourself more and I do think that can make it easier to find people like you; it may only be one or two people, but that can be enough. He’s not alone in having that feeling of just wishing he could be “normal.” My DH is in his late 30s and the other day, he was saying how much he hates feeling “broken.” And when you love someone going through this, you just want them to feel better and see all the wonderful things about them that you see. I have ADHD (very weird presentation because it’s obvious I have it mentally, but my illness affects its physical expression) and used to be so embarrassed of the symptoms, but now my DH (also has ADHD) send each other memes about it. Any chance of him going to a board game night or something like that? I don’t even enjoy board games that much but it’s often a nice place to meet other neurodivergent people.

TeaAndStrumpets · 17/12/2025 11:48

@FFSToEverythingSince2020 Thank you for your very kind response. It's my grandson, as I am proper old!

My poor DD bears the brunt of it, she used to have her own small business but it was impossible once he couldn't go to school. She's got 3 part time flexible jobs so he doesn't have to be alone at home. He has tutors come in a few days a week and they have worked wonders with him so he'll hopefully get (a few!) GCSEs next year.

Yes he used to do online minecraft with old primary school pals but he now shuns them because of their bad language 😮 Perhaps there'll be a little group at college.

He's been born in the wrong century really, he would have done well in more strait laced times! Or would have willingly gone to the stake for his beliefs. I read about the teacher in Ireland who's been in prison for refusing to agree that children can change sex. Yes, DGS would be like that!

Sorry for the essay.

TodayIsatrickyone · 17/12/2025 11:54

Morning all, gosh it’s busy on here today which is lovely, a big welcome to all the new peeps 👋
Sorry to those struggling who have things they have to do, hoping you can all cope best you’re able.
I was exhausted yesterday and struggling on little sleep so in bed very early and managed to sleep fairly well so actually feel a lot more human today.
Trying to rest as tomorrow is a busy one here. DD turns 18 and my adult DS & GF are flying down from Scotland to join us which will be lovely but obviously a busy day for me and I’m a little anxious in case I don’t have enough spoons or my body lets me down by misbehaving tomorrow. Silly really as it’s just family and theyre used to me having to disappear to rest but just be nice to actually enjoy the day, not feel unwell and just survive it if that makes any sense.
Got MIL popping in later to see DD but hoping it will be a quick visit!

TodayIsatrickyone · 17/12/2025 11:56

@TeaAndStrumpets happy anniversary for yesterday sorry I forgot to say!

FFSToEverythingSince2020 · 17/12/2025 11:59

TeaAndStrumpets · 17/12/2025 11:48

@FFSToEverythingSince2020 Thank you for your very kind response. It's my grandson, as I am proper old!

My poor DD bears the brunt of it, she used to have her own small business but it was impossible once he couldn't go to school. She's got 3 part time flexible jobs so he doesn't have to be alone at home. He has tutors come in a few days a week and they have worked wonders with him so he'll hopefully get (a few!) GCSEs next year.

Yes he used to do online minecraft with old primary school pals but he now shuns them because of their bad language 😮 Perhaps there'll be a little group at college.

He's been born in the wrong century really, he would have done well in more strait laced times! Or would have willingly gone to the stake for his beliefs. I read about the teacher in Ireland who's been in prison for refusing to agree that children can change sex. Yes, DGS would be like that!

Sorry for the essay.

Edited

@TeaAndStrumpets Ah! I somehow read DS instead of DGS. Oh gosh! He sounds like quite an old-fashioned kind of lad! Any chance of getting him involved in cultural re-enactment or something like that? I understand the rigidity as my DH has a bit of that too; it’s not that it’s “their way or the highway,” but it’s just this belief that what they think is the most logical way, so why would anyone disagree?? 😆 I tried to explain to DH that humans are complex and messy, and he just said humans sounded awful (he’s almost 40! A bit late to opt out of humanity, ha).

And your daughter sounds like an absolute trooper; three part-time jobs! I’d never know if I was coming or going, but I understand you find the strength to do what you need to do for your children (wasn’t able to have my own but would have loved to - my DH and I have talked about, if I can manage to get a wee bit more stable, which I know may not happen, looking at become fosters for older children one day).

Don’t worry about the essay; I type quickly and read quickly. And I have to say, I just love your username!

FFSToEverythingSince2020 · 17/12/2025 12:01

@TodayIsatrickyone So glad you got some sleep! It makes you feel so much more well in yourself. And I hope you have a lovely time with family! I understand the worry about running out of spoons, but as you said, family understand.

ViciousCurrentBun · 17/12/2025 12:05

I had to have a bike stress test on my heart this morning, I am fine but it’s wiped me out and I’m in bed.

Please create an account

To comment on this thread you need to create a Mumsnet account.

This thread is not accepting new messages.