Thread 6? Good grief..what are you up to today if you have chronic illness?

[MewithME]

Link to last thread. https://www.mumsnet.com/talk/_chat/5475947-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-5

Hello to my chatty poorly friends and welcome to New ones....

@TeaAndStrumpets 3 isn't bad, we have 2 and 3 carpet cleaners!

Evening all. Do the robot vacuums cope with dog hair? Although not sure they'd survive the dogs!

Infusion went fine. Longer than previously - 7 hours. And my right arm decided to swell up around the first cannula after 2 hours so had to swap to the left.
Just so wiped out now. Will be going to bed shortly & doing nothing tomorrow.

Hope everyone is ok & had a good day

😁😁😁

What a long day, you must be so relieved to get home!

I don't know about dog hair from my own experience, but I've read they're a big help. There's a great video on youtube showing a cat taking a 'ride' on a robot vacuum, they looked perfectly chilled!

Hi all, I have Epilepsy, Multiple Sclerosis and something called COL4A1 which gives you strokes, eye problems, kidney... the list goes on.

Anyway, I joined the gym last week after having my stroke and laying in bed for 2 years. I can do far more than I thought and it takes me 3 hours a day. Its fantastic being out more.

That is so inspiring, glad you were able to get out! Lovely to have you on the thread.

@TeaAndStrumpets Thank you. A bit of a long one. Left home at 7.30am & got back around 5pm. A bit wobbly so being careful. Won't do much tomorrow.
Dh teasing about being sat on my arse all day, but then again I was being poisoned. Cheeky git. (The infusion is a form of chemo to suppress my immune system, hence the poison comment).
I'll check out the Youtube cat rider tomorrow 😊

@TheNameWasOnceChosen Wow that's brilliant!

The gym obviously, not the stroke

@CoffeeBeansGalore Sympathies, I also have an infusion which suppresses my immune system that wipes me out completely, though I assumed it was the antihistamines given with it that made me so tired. Hadn't ever considered that it was the poison!

I do get a big dose of steroids too, which make me a bit wired but 24hrs pain free. Not due mine til next month.

Hope you've had a good night.

Morning @BerfyTigot . Yes the antihistamines definitely hit me. But I think ir's the combination of everything.

Unfortunately not a good night. But I don't feel bad so it's ok. It'll be a peaceful day so I can just have a nap if I feel like it. I get Rituximab. What about you?

@CoffeeBeansGalore Yes that's what I get too!

I'm in the south west, whereabouts are you if you don't mind saying a rough area. Only asking because several friends who also have the same drug are being encouraged to go a bit longer between infusions.

I get 2 doses on each cycle, and last time I saw him the rheumatologist suggested that next time I might just have 1 dose. But I notice that it's weating off around a month before it's due. So not keen.

Glad you're ok. I also once had my arm swell up, I think I knocked the canula when I went to the loo. They were completely unbothered and said that my body would still absorb it.

@CoffeeBeansGalore sorry to hear you had a bad night 💐

@BerfyTigot I'm in Scotland. I have Sjogren's Syndrome. With me it's been a see how it goes rather than stipulated doses.

I've had sjogren's for 4 years now. My 1st infusion was Nov 22. I then relapsed early last year after 2 back to back viruses & a chest infection. I had an infusion in July. It only worked for a few months & I was put back on a reducing dose of steroids. After consultations my neurologist & rheumatologist decided on this infusion & then monitoring. So we'll see. They've been very good & I'm well cared for under them.

Thank you. I'll zonk out eventually 😁.

@CoffeeBeansGalore really glad you're being well cared for. Sleep well 😴

Morning all, sorry you had a bad night @CoffeeBeansGalore

Well done on the gym progress @TheNameWasOnceChosen

I can report back later on how the robot hoover does with the fur of two very fluffy cats. I'm not sure what they're going to make of it! At the moment I have two 'normal' hoovers - meant to be one for downstairs and one for upstairs as my joints mean I've always struggled to lug them up the stairs (but one is broken), a cordless which is nice and light but not brilliant, and a small handheld for crumbs etc. I've got pale carpets (rented house, not my choice) so it feels like a constant battle.

Another hopefully quiet day at work here - didn't sleep well so will also involve napping.

@Stressybetty weve got a Eufy. It doesn't self empty or whatever the latest model does. It's just had the mapping set up for upstairs and downstairs so we just set it off by app. We have one cat and it seems to cope well enough with her fur. To be honest if I had more than one animal I'd send the Eufy out everyday and then it would be manageable. Ours does each floor once or twice a week.

The sun is out and the birds are singing. It's a beautiful morning here ☀️🐦

I am feeling much improved but v conscious of not overdoing it so our day out has been postponed until tomorrow. I will mooch around and drink tea ☕

Happy fat Tuesday to you all! Enjoy your 🥞 💕

@CoffeeBeansGalore bless you 7 hours is a long time, almost a working day. I'm lucky in some respects that two weeks I have two at 30 mins each and then the middle week I just have the one. With two or three saline flushes I'm usually out within 2 1/2 hours. I'm on 3 weeks and then 1 week off, bit tedious but as I'm secondary I take my chemo with gratitude.

@martha79 hope yours aren't too bothered. My office is tight to manoevue around in so Eufy doesn't go in there. Its also where the cats bed is so if she freaks she goes and hides or stays in there. To be honest she is 13 neurotic and scared of her own shadow 😂.

Urgh second night of rubbish sleep. DS gave me a cold last week, felt well enough for chemo yesterday but now the cold has returned for one last swansong today. I was awake from 4am the night before last and then 2am last night but thankfully did manage to get back to sleep eventually this time. I find where I'm weaned off the amitriptyline now I'm not drugged enough to just fall back asleep so the mental games start along with anxiety. I think I'll just monitor it and speak with GP next week if need be. I don't want to go back onto it as it was for pain overnight which I no longer have but my head feels messed up more so than it was. There was me feeling smug yesterday about not feeling ill with this cold so will have to keep an eye on my temperature today. Day off work today anyway but trying my best to potter with continuous breaks. Just a little frustrated as kids aren't here this week so perfect opportunity to get jobs done but I'm just so meh physically and mentally at the moment.

@Oioiqueen Rough nights are tough. Hope the cold doesn't floor you.
Sorry you have to have chemo so frequently. But as you say, it keeps you going.
Kids are so delightful sharing everything!

We got up to half an inch of snow on the ground, ruddy freezing, but bright blue sky & sunshine. Beautiful day.

I spent a couple of hours and even ate my lunch out in the garden today. The sun even felt warm on my face. It was incredibly good for the soul ☀️