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 😁

Yes, I had a lie in today but when I woke up, I realised my lie in was probably to do with the time change. When I was younger, I was a bit of a night owl and I used to watch the clocks change on stuff like the iPad

Thanks @FurForksSake It does make the journey seem more epic than needs be but there's no rush to get there so we'll stop off and make it more fun for DS and more of a rest for me.

Is there an official way of doing your own pots test? I suspect I am too based on my HR spiking when I get up but I haven't ever mentioned it to GP.

@FurForksSake that's a most exhausting thing... listening to lots of chatter and being with lots of other people. So difficult.

I’m blacking out so many times a day now, it’s infuriating. I don’t pass out the whole way, but literally the lights go off and I have tk hold on to something. Work are doing me a crisis plan whatever that is.

Cardiology have told me to lie down in total silence and without doing anything for ten minutes, then take blood pressure and heart rate in that position and then basically jump up and do it again. I then stand up for ten minutes and take blood pressure and heart rate. A heart rate increase of over 30 bpm that is sustained without an associated drop in blood pressure indicates potential pots.

Morning both, grey day here ☁️

Had a lovely evening at DS's but like you @FurForksSake , I am wiped out. They get v noisy when they play games 😆

So another slow day here. DD has gone to work and I will rest in bed ☕

Hotel mid-way sounds like an excellent idea @MewithME ❤️

That sounds really scary for you. Hope you can get some treatment that helps.

I literally just did it again. Sometimes it happens when I reach for things. At this point I’m hopeful for pots as my dodgy ecg could indicate something worse. Pots and some meds would be ok. Apparently you can train dogs to be pots dogs. We are considering a puppy so maybe we could train it to do whatever they do.

Morning all.
@FurForksSake worrying & scary for you.
The dog option is interesting. I've met a dog who did the training to sense oncoming epilepsy seizures so possibly similar?

@Swanhilde the shop isn't too far away from me but I've never visited - I might have to give it a go when I'm up for a day trip. The jumper sounds lovely! I can crochet and learned it before I could knit well, but crochet tends to hurt my hands and shoulders a lot more so I tend to do more knitting. I don't think you're missing out on too much but it might be nice to give it a try. I love trying a new hobby.

@MewithME Your peas and plant pot sounds so cute! I knitted myself a little frog and he keeps me company during long days in bed. You must show us the stranger things creature, I can't imagine it!

@FurForksSake 6 extra people does sound exhausting. I have a low tolerance for socialising anyway but find my voice even gets tired if I'm speaking over noise. I hope you can have some good recovery today and well done for going for a rest midway through. I find that hard to do and tend to push through - not the best idea at all. Your blacking out sounds so scary, I hope you can figure out what it is and get some effective treatment. Fingers crossed for you.

Not much happening in casa del Frog today. My husband was meant to be playing sport outside but we've woken up to dreadful weather. The rain has now stopped but it's still blowing a gale out there. I'm spending as much time resting as possible so I can recover from this flare. Mainly consists of watching TV on catchup and easy knitting projects. I'm doing some dishcloths now (I'm stashbusting hence the weird variety of projects).

Hope everyone is having a gentle day!

Afternoon all

@FurForksSake I hope they can work out what's going on for you soon.

Love hearing about all your hobbies - I can knit but find it quite uncomfortable after a while (hypermobile joints, especially my hands and wrists). Never really tried crocheting but someone gave me a kit to make a little Highland cow, I must give it a go.

Had a friend visiting for a couple of hours today - managed a little walk and then lunch. I'm having an odd day where I keep switching between feeling fine and feeling quite dizzy. Am back in bed now in a sort of cat/ hot water bottle sandwich 😄

I applied for a job a while back with a charity who train support dogs (didn't get it sadly, as they promised regular dogs in the office!) - it was fascinating all the different types of help they can train dogs to give. No such luck with cats although I was reading the other day that they can purr at particular healing frequencies!

That does sound scary @FurForksSake Do you find it gets worse when you’ve overdone it? 6 extra people and associated chatter would likely knock me back for a good few days.
Hope you haven’t long to wait to see the cardiologist and you can get some answers.

I feel like I’ve been waiting for ages for my cardiologist appointment ( 3 more weeks to go) but probably just me being impatient to know if I can drive again or not!

Quiet day here. We were planning on going up to MILs again but problem with the car and it’s a bit far to risk it. She wasnt happy we cancelled as she’d apparently got up and dressed especially! 🙄
Will wait til tomorrow morning and DH can pop to the tyre place and maybe pop up once that’s sorted.

Oh that job sounds fab @martha79 a shame you didn’t get it. My son always messages me and sends pics when they get dogs in his office! Makes work so much better.
I joke my dog is a gardening assistance dog as when we were trying to clear our border of brambles, she was literally digging at the side of DH and pulling up the roots with her teeth. She thought it was a great game. As long as she doesn’t do that to the new shrubs he’s planting, we’ll be ok!

Have a restful day everyone.

@bedfrog so glad you enjoyed the theatre! I love a good play but I'm especially keen on musicals so I tucked up on the sofa with the kids this morning and watched the big night of musicals from last night. DS is a huge sam Ryder fan so it was a hit!

Went out last night to see a comedian and it was brilliant. Front row seats and dh got roasted by the support which is always fun! While we were there though we saw the town had a giant feris wheel so we took the kids on that today. Ended up bumping into some friends (who were also sat by us last night. Pure coincidence both times!) so that made it more exciting.
Aching a lot today from the chairs last night so was struggling this morning but after our feris wheel ride dh treated us to a meal out which was lovely!
Got home and was absolutely done so tucked myself up under the heated blanket and dozed in front of the tv.
Just kids bedtime to do then chill time tonight.

Sending gentle hugs to anyone who needs them

That sounds like a fab night @Adhdmum2! I never go to the theatre so it was a nice change. I much prefer the am dram to Broadway.

Anyone else get so fed up with sitting down? I feel like I want to go on a long walk and stretch out properly but I know my body will make me bedbound after with PEM. So much of this illness is dealing with frustration I swear!

For whoever asked, this is my friend's Demogorgon which is completely outing if any of her other friends are on here 😂

I laughed a lot at this. It's brilliant and so is my friend.

Yes! I love walking and made the mistake of a 30 minute walk which had uphill part on Sat morning. Was glorious sunny with my dd and dog but now paying heavily with muscle fatigue and exhaustion. I also love swimming! So frustrating and depressing.

@MewithME absolutely love that aha! Reminds me of day of the triffids

@MewithME Your friend is talented - that's brilliant!

Morning - another day of rest here 🥱

Have a phone call prescription review this afternoon and have put in an econsult about my ears. What's the betting they call at the same time even though they're in the same building! 🤣

Have a restful day all 💕

@MewithME I love it! It's absolutely fantastic, your friend has real talent. I might have to make one, ha!

@TheChicSnail Uphill really drains me too, last time I did a hilly walk I couldn't get out of bed for about 3 days, had to have my work laptop next to me in bed - it was awful but the walk was so lovely I can't help but still feel it was worth it.

Had an awful start to the day, didn't sleep until 1am then was woken up by someone blowing their horn repeatedly, then had the 8am scramble for a GP appointment, couldn't get through at all for an hour and ended up not getting an appt at all. So I've come back to bed, that's me done for the day!

Oh that’s horrible @bedfrog I hope you get more sleep soon. Would the econsult help if your surgery has it then there won’t be that 8am scramble or maybe ring at a later time?

Happy Monday everyone. It might be sunny but still quite cold for me

Morning all. Empathy with @bedfrog . I had a bad sleep. Was awake for about 2 hours. Too many thoughts in my head. Work (hard to switch off) and then trying to work out best way to do my trip and worrying I'm not well enough.

I know I'm getting stuck in 'old me' thinking about how to see my sibling. They don't understand my illness and just complain I don't see them while not making an effort to see me when I'm at mum's. They visit mum when I'm not there though. I started thinking maybe I could book hotel and go see them first and then on to mum. But that would be two different hotels and a longer drive and I won't be able to rest properly when I get there and I'd still have to drive another hour and a half to my mum's after that. It's too much. I'm going to forget it, I think.

It's not my fault they moved somewhere remote and I got ill and they are angry.

Meanwhile, I am still sat in bed. Body is buzzing. I feel utter inertia. Don't even know when I'm going to travel. Can't get my head around it all.

Morning all! Sorry about everything that deprived you of sleep @bedfrog , and the GP scramble. I agree with @JewelleryCat about the econsult. I was dubious when my surgery introduced it but it does seem to work. I still book nurse appointments through reception though.

@MewithME that sounds so hard . Once you are on the way then you can just plod on and enjoy seeing your Mum. I don't think you should book two hotels, that doesn't sound like fun at all. You can tell sibling you're going to see your Mum and they then have the ball in their court.

@MewithME sounds difficult. It's hard when people just don't understand, especially when it's family who you would expect to care. I moved away from mum & sibling a long time ago (they are very close & I was always on the periphery). LC so rarely see, speak, message. So at least I don't get nagged about visiting.

Thank you Tea. Yes, that's reasonable isn't it ? That's what I did last two times and they didn't come. They're still upset with ME though.

I was also up at 1 am, such a busy week with a lot going on. I was fine until I got into bed and then my mind jumped into panic mode and I lay there trying to calm down. I got up for an hour then heated a hot water bottle and went back to bed. I often find if I get a bit chilly then getting warm again sends me to sleep.

Not very peaceful here, I think DH has broken the HSBC telephone banking system, having been locked out a while ago. They've sent him two new personal numbers to log in with, a few weeks apart. Typical of him the second envelope he hasn't even opened.
So today he tried to log in and the automated system rejected him. Then he told me they'd "sent him the number twice" so I told him to check the latest one. Lo and behold it was different! Tried that, seemed OK then had to confirm and it got rejected. Anyway, long story short, he's driven into town to sort it out!

How nuch easier it was before everything was taken over by computers. You can't get to speak to a human. Well he did originally that's why he's been sent a new security number...and computer says no!