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....

Morning. Grey and wet here again. Have to pick up a prescription later.

After seeing it on here have got the visible app but not the band and did the first check in on my phone..

I might get the band but for now just going to try the free version. Got a few expenses including the dentist to accommodate.

Sorry for such a boring update. Hoping you all have a good day

@TeaAndStrumpets I'm lucky that they live in the same village, just down the road. Dd1 & her dd (3 in April - where has the time gone!!!) live about 20 mins away. Both dds work part time
but they all tend to pop in weekly unless someone's ill. Both have partners who work long hours, so they like coming over on their days off to chill out with me whilst dh is at work to keep me company.

@TeaAndStrumpets Sorry - hope Dgd feels better soon.

Thanks, she is full of beans in between the tears so she's starting to bounce back!

I've been reading from all yours posts about PEM. Thank you for educating those of us who don't suffer with it. I know a lot of you keep how you are feeling inside but I hope if someone was to tell me that they suffer with it that I now understand enough to be empathetic and helpful in some way.

I escaped about around 3pm yesterday. No infection that requires admission all bloods normal so just a common cold. I can't say I've had one this bad for years though, naughty naughty chemo. Unfortunately now DH has caught it from me, he also has a suppressed immune system and I really can empathise with how horrid he is feeling. Thankfully now I've mostly just got a headache behind my eyes which I'm trying to keep on top of with paracetamol. Got to pick the kids up in a bit, very thankful they were away with family this week. I think I'd probably have lost the will to live by now with everything this week.

@TeaAndStrumpets we watched a George Clarke last week and they’d spent a ridiculous amount of money and ended up with a two or three bed house that was just ridiculous. The living space was nice enough and the views were insane, but no guest rooms? No spare room for when dh is ill or snoring?!

Feeling better today so managed yoga class. The difference between bad fibro days and good fibro days is ridiculous.
Also scored a nice jacket in the charity shop for £20 so a good day so far.

Oh was it the Anglesey one? I liked the way the woman had a pink and green kitchen! Just insane amount of gimmicky things like the bespoke chandelier. TBF that was pretty but I thought the whole thing was a bit of a dog's dinner. I suppose the original house was facing away from the viiews, hence the glass box. Entertaining to watch though!

That was a good outcome!

Well done for surviving the week, hope your colds clear up soon.

Yes! I liked the pink and green but it will date so fast. And the chandelier was amazing but the cost must have been huge. It was all style over substance, gorgeous views but we’d have done everything differently.

And having to get a bridging loan...ouch!

One of our cats is named after George Clarke.

I'm struggling at the moment. So tired, and a mix of SAD and just plain sad. I really need some sunshine or a nice surprise!

Well fuzzy at this point it would be a nice surprise if we had some sunshine!

This winter has just been constant dreary soggy weather. I hope something nice does happen for you.

It's obviously one of those weeks. Having decided to make some roti I found some instructions on line and was all set to get stuck in. DH bless him pointed out how much had been going on this week and thought it risked PEM, so offered to have a go himself. This from a man who has never done any baking in his life apart from making pancakes.

I was feeling a bit woozy so lay down on the sofa to rest my eyes. I was rudely awakened by DH coming in literally dripping blood! He had rummaged in the ice cream tub where I keep the Magimix blades and sliced his thumb open! He got it everywhere. I found the plasters and declined his kind offer to carry on....

RoSPA could use us in a campaign!

Oh poor Mr Strumpets! I hope he's nicely patched up, and has rubber gloves handy for his clearing up.

Haha, he does mean well! I thought I'd better get a proper container for the blades and slicers, and I find there isn't one available any more, due to my Magimix being 30+ years old. Or I could just ban him.

I made it to the weekend. I met my deadline. I might be a bit broken but I still RULE 🤣😎 (don't know what the kids say ..slay? )

Ha ... anyway, my brain is fudge so I am going to catch up with all your posts tomorrow. Hope everyone is ok.

But Me, I love fudge!

Love this! I'm the same shocked by the difference between the good and bad days however like most on my good days I do way too much to try and catch up and inevitably make the bad days worse 🙄 also love a good charity shop find!

Yay! Well done @MewithME and yes according to my 19yr old niece (who is more like a daughter) everything is "slay" and "perf" as in short for perfect.

That is so true! When I feel a bit better I tend to go on an energy spree, doing all the things I couldn't manage when I was in a crash. Boom and bust, every time.

I'm a bit late catching up with midweek conversation when I was buried in my paperwork deadline, but you were chatting about fear of PEM and visible? @Dozymoo42 @Tiredandwired2 @Swanhilde

I've used visible for about 3 years I think. I got it about a year or two after my GP diagnosed MEcfs. I didn't get a consultant diagnosis until 2023. That is actually the sum total of my Mecfs 'support'. It seems to end with diagnosis.

I think I spent a while after I was first diagnosed being really scared. I was reading and trying to understand and hearing the advice that pushing through can permanently damage your baseline. I was terrified of getting worse without any support network and having a mortgage and child to support alone.

I'm much more relaxed now. Visible has given me some confidence I think. I don't think I've improved but objectively I have not got worse. I don't think I understand the data that well. My tracker lines are still up and down. It is helpful to know your HR and to stop and rest if it is too high for too long. If I manage to go for a walk for example...I will check it if I feel my heart thudding and try and stop and breathe to bring it down a bit...rather than keeping going non stop.

Anyway, if anyone wants to know anything about visible I'm happy to chat. I've had quite a long time now really.

Thank you @MewithME I do think the advice around ME from an NHS point of view is very limited, I have found this chat very informative and I am going to look at getting visible when I get paid this month. I don’t think my life is massively limited at the minute work wise I can make it through the work week just- but social life and hobbies are non existent sadly. So I really want to be pro active and use the advice you guys have shared with me around boom and bust etc to improve my quality of life.

I have been resting the last few days as I know I have a heavy few days coming up, I have an exam resit on Tuesday so today tomorrow and Monday are going to be revising. Good news is I am on annual leave next week so plenty opportunities for rest and relaxation 😊

Morning, Another grey wet day! Really need some sunshine. Bit rubbish here yet again so another quiet day it is. Bit fed up too but it is what is.

Talking of visible ( I use the free app part without the band but keep a check on my HR on my old Fitbit) I’ve just discovered on the community tab of the app some interesting articles and podcasts. Just read one on PEM after we were talking about it this week! Might be helpful to some of you.