What are you up to today if you have chronic illness part 2?

[MewithME]

Thread 1 here
https://www.mumsnet.com/talk/_chat/5332156-what-are-you-up-to-today-if-you-have-chronic-illness

Come join us for our ups and down and daily natter.

@MewithME sorry work was too much but glad you could rest earlier today and nearly the weekend!
Good to know you find visible helpful, I’ll shout if I think of any specifics but just wanted to hear from real people rather than the ads! I might try it for a little while and see if it’s helpful. I think I know what activities are high energy but I still get caught out at times and feel like an alert reminding me to rest if I can might just stop me pushing through. Today has actually been such a day, I should have rested earlier in the day but thought I’d be okay, only I wasn’t. Have a feeling I’ll pay for it tomorrow, though both the dog and I managed an hours nap earlier.

If you or anyone else would like me to email you a copy, they just sent me six 'handbooks' for this course, they look like they might be useful for use at home as well.

I didn’t find Visible at all useful.

It just measures heart rate. So you could be laying on sofa talking to someone and it wouldn’t measure your cognitive issues. But as you were lying down it shows OK.

I used to crash all the time. Visible didn’t pick it up once.

I think something like Visible might stress me out, I once had a Fitbit and it did with it's buzzing and worrying about e.g. heart rate and oxygen levels etc. But then I am quite an anxious person in general.

Also physically having it on my wrist, it seemed to leave a red mark there. Git rid of it in the end.

I can definitely let you know. I have high hopes that it will work.

I did try bisoprolol (can't spell it) last September which I had to stop by the January so I am hoping this is more successful.

@Orangesandlemons77 thanks very much, have PM'd you.

@ArseInTheCoOpWindow I also didn't find visible useful- made me very stressed 🙄

Miserable night, adrenaline rushes waking me up. Very busy yesterday so this stems from that. Busy again today, flu jab tomorrow, will crash out on Sunday I hope!

I have been meaning to ask if anyone with CFS/ME gets sinus congestion? I don't have a runny nose so not sure if sinus rinses will help. I get slightly swollen eyelids and tender nose and cheekbones. My teeth hurt at random places when I'm in a flare, glands swollen and throat scratchy. Fed up with the piuffy eyelids most of all...nobody else can see them, just I worry they won't go down.

Moan over!

I get sinus congestion. I had a head CT scan for something else and it showed it as well.

Also sneezing. That is annoying. Always feel like coming down with something. Sore throat also.

@Orangesandlemons77 I assume everything just gets inflamed. On the bright side, I never seem to get a snotty cold, just this low level annoyance.

@Hotbeverageplease I use Visible and find it really helpful. I’m reasonably good at pacing but sometimes it’s hard to stop doing something and you tell yourself it’s OK to keep on doing it, but seeing the impact on Visible nudges you to make better choices. I agree that there are some cognitive activities it doesn’t pick up, but overall it’s good enough to hold me back from overdoing things. For me it’s well worth the £11 monthly subscription.

I just slip mine into my bra every morning rather than wearing it with the armband.

One of my main PEM symptoms is sinus pain @TeaAndStrumpets . It's a sure sign that I've done too much.

Steroid nasal spray, antihistamines, rest and, if all that's not enough, painkillers help to keep it in check.

I assume it's MCAS but no Dr's ever mentioned it ... And my diet is restricted enough for me to try a low histamine one - I love cheese too much 🧀

Morning, love to all. x
I wear a Fitbit, mainly to track sleep and to see what time it is. Also you get alerts for texts etc. Interested in visible but not the cost, I can't really justify buying another tracker. The ads are relentless though.
Having an ok day. Have fed pups and dogs, washing up, washing on and actually cleaned out both puppy pens, lots of poo. Moved some things around downstairs and thoroughly swept. Hoover next down there and mop. Weather rubbish, could really do without the rain and mud. Waiting for woodchip delivery so DH can tidy garden and spread it out for dogs to help the mud situation.
Did big monthly Lidl shop yesterday. Am going to be really paying for all this in the next day or so.
Still need to sort one pup advert out this weekend.
Am nowhere near shampooing the carpet I wanted to do, that will have to wait I think.

Oh yes I get sinus congestion a lot. Was told years ago by my optician that I have very small nasal/sinus passages, bit random of her. I get through a lot of the Sainsbury's max strength congestion tablets.

Rubbish weather here too. Was going to walk into town and get food for the parrot but have ordered some (expensive) food on Amazon instead.

Might try a bath and to finally dye my hair. Only had 4 hrs sleep last night as couldn't sleep for ages. the heat might help with pain as well. I'll see. Still in bed.

I take co-codomol for pain which helps a bit with the sinus and throat pain and headaches, also have gabapentin but don't think it does much really.

Teen DS is home again, sixth form but they seem to have a lot of free time. I have told him he can make his own lunch if he wants to.

@TeaAndStrumpetsi also get bad nasal congestion but it has got a lot better by treating my reflux and using a saline spray (not sterimar). Apparently if you let your nasal passages get dry, it can make the inflammation worse

I am absolutely exhausted today. Tried to have a nap but the dog wasn’t having any of it so I’m now sitting on the couch like a zombie. I sometimes wish I could chop half my brain off - it feels like half of it just doesn’t function when I’m so tired!

That is interesting. I'd always assumed it's general inflammation, and I suppose this time of year there are all sorts of allergens floating around. I get bad IBS which seems to be affected by fatigue.

One of my biggest regrets is giving up dairy after I had allergy tests at the hospital, I had been totally unaware it was a problem. I gave it up for a while to see if it would somehow improve my health - which it didn't at all - then when I re introduced it I got loads of allergic reactions. Can't win.

Im having a bloody awful day. Feel like I’ve literally been hit by a bus. In bed most of the morning as felt too ill to do anything, moved to the sofa but pain feels high and I’m more comfy in bed so taken painkillers and back upstairs. My little rescue dog is on the bed with me after DH took her out to wear her out earlier which is a nice comfort but I just hate days like this. Just feels so isolating. Sorry for the moan.
Thanks to everyone for visible feedback, all helpful.
I also get low level sinus pain quite often, swollen glands, sore throat too.
Hope everyone else is having better days.

Oh how interesting about the nasal passages being narrow. I have been told I have very narrow ear canals, so that sort of makes sense...plus narrow ribcage so obviously slight seconds!

Before I was diagnosed with LC, I just thought I was getting cold after cold after cold. I had no idea what PEM was and that I couldn't push through it. It's been a long learning curve.

Thanks I will try the rinse. I thought no gunk meant no need but I can see the point about the dryness. Of course we've only just put our heating on which I hadn't thought about, I imagine that won't help. I switched on our electric fire last week too and soon got a very scratchy throat. So dustmites, mould, damp air or dry air all probable culprits.

It does seem like a weak point for many.

So sorry you feel rough today. Take care.

Feeling terrible today. Caught a cold last week and thought that I had gotten through it okay, then yesterday I started to feel awful and then got terrible ear ache. The pain was so bad that I vomited with it. My eardrum burst about 2am and the pain has subsided, but I just feel gross. Managed to get antibiotics from my GP on the phone (not my first rodeo) so just got to wait for them to start working.

Good grief! That sounds awful. Hope you feel better soon.

Oh no you poor thing, I’ve had a burst eardrum in the past and it really wasn’t fun. Hope the antibiotics kick in very soon. Take care

Busy day today. This morning I went to the community allotment project that I volunteer at and got very wet!

This afternoon my parents visited for a cup of tea and this evening DH and I cooked a no stir risotto for dinner.

Doesn't seem much written down but I know you know. Hoping that all the excitement doesn't affect my sleep too much 🤞