u/PinacoladaBunny

A new addition for me in this ‘upgrade’ is that Alexa+ loves to shout.

I’m set to volume 2. Nice and quiet for the morning radio routine to start up whilst we’re asleep. Previously Alexa would respect the low volume.

Now? Alexa+ completely ignores the volume setting. Loudly announces the station name before the radio then starts up almost inaudibly because the volume is so low.

Is anyone else finding this? I can’t figure out what to do about it.

On mtx about 7 weeks now, and up to 15mg. The last couple of weeks the sore mouth has started. :(

I’m on 5mg folic acid 6 days per week too, and still take my methylated b-vits on the 6 days.

My tongue is swollen so it’s pressing against my teeth, it’s got no ‘coating’ left on the sides so it’s patchy and raw. There’s a white-ish stripe down the middle but I don’t think it’s thrush as I’m mid-way through an anti-fungal course.

The roof of my mouth is also really tender, particularly around my teeth. It feels as though I’ve scalded all the tongue and roof.

Mint is burning me - so brushing gently or having a mint is painful! Salt is painful, anything acidic is painful..

What options do we have with this? Or are we supposed to just ‘put up’ with it? 🫣

Saw an advert in early June and thought it looked good, so I thought I’d give it a shot. Finally interviewed this week, and got a call today!

I’ve never been through the process before, so have read lots on here about how to craft the application, how to prepare for the interview, which things to pay attention to, etc. All of it was so helpful, and I wanted to say the biggest thank you to everyone who has shared advice. 🎉

We moved here 3 years ago and until that point, I’d never seen or heard swifts. It was quite a surprise when we had our first summer here and I wondered what these screeching birds are, flying at super speeds in groups over the gardens 😂

They’re so fast I can never get a photo!

Are these quite common in the UK? I don’t know a whole lot about them, but they’re certainly eye (and ear) catching birds.

It feels quite a treat to have them here each year - I look forward to them just as much as the arrival of the pink footed geese in late summer / early autumn (or as I affectionately call them, ‘the honkers’ because the sound of thousands of them arriving is something to behold!).

Hi folks 👋

Just wondered if anyone else had experience of this. I started methotrexate for autoimmune issues 2 Mondays ago - I had a bad episode the morning after the first dose, where I was running to the loo with severe abdo pain at 5am 🫣 my HR dropped to the low 40s, I was a mess, but recovered gradually over around 2hrs.

Since Saturday I’ve now got bradycardia! I’m not used to this at all. My Apple Watch pinged me this morning as my resting HR has dropped from an avg of 54bpm to 43bpm in the last 6 days. My watch has also caught a few drops to 39bpm during the last few days. My HR is still spiking with exertion as usual, but when lying, sitting or standing it’s bottoming out and in the 40s.

Safe to say I am more fatigued than usual. Headaches, chest pain, dizziness, breathless - like doubled over gasping when I walk up both sets of stairs at home. Horrible.

I’ve been to the GP today, I’m especially worried as it’s getting warmer this weekend and I struggle massively as it is during warm weather! My BP is a tricky beast. The GP initially said “well I think this means you’ve recovered from your POTS” lol I’ve had it over 20 years with my EDS & MCAS, so that’s not the case! She said methotrexate doesn’t cause heart problems, so I need to increase my dose again on Monday as planned. Eek. Plus bloods, an ECG (they can fit me in several weeks away lol) and reduce my POTS meds…

Has anyone else experienced something like this, or knows what might be happening? I am guessing that methotrexate is somehow down regulating my nervous system and suppressing my HR - ie, it’s a POTS thing, not a heart problem! 😬

Hi 👋

I started my first dose of methotrexate last night, 2 pills so 5mg. It seems to be on the lower end of dosing compared to some starting doses I read others have.

I woke at 5am with severe abdominal pain, and ended up on the toilet for a good while. The pain was so bad I was fighting hard not to pass out, my whole body was pouring with sweat and I wasn’t sure if I was going to vomit too. I have POTS so I know during the night my BP and HR can be delicate, during all this my HR was bouncing between around 40 and 100bpm.

Finally managed to get myself back to bed, feeling very cold, and slept a few more hours. Today I’m having waves of nausea and feeling like I need the toilet, though I’ve got nothing in me. I’m passing small amounts of blood. I’ve still got chills and feeling cold. Haven’t managed to do anything today, even though I should be working. Just all a bit of a mess and I’ve still got a lot of abdominal pain (it feels a bit like bad period pain).

Is this typical? I know the side effects are talked about a lot but I find it hard to know what’s ‘normal’ and what isn’t, and when I need to message the doctor! Thank you 🙏

Hi 👋

I’ve just recently started hearing about AI and was really surprised to read the symptoms of flare ups.. as they exactly match what I’d described to my cardiologist as ‘nocturnal events’ because I didn’t know how else to describe them. They’ve been happening over the last couple of years after I became ill after Covid.

I have very well managed POTS, however at times I have ‘events’ during the early hours of the morning. Waking up with extreme abdo pain, nausea, vomiting, upset tummy, my BP plummets, I’m barely conscious and have blacked out of the bathroom floor in a pool of sweat a few times. I then end up freezing, shaking, tremors and muscle contractions all over. My husband usually has to carry me back to bed, make me electrolytes and wrap me in heated blankets for a few hours. I have pretty much constant low-end levels of glucose and hypoglycaemia, so my cardio assumed I’m maybe having a hypo type incident.

I also have ‘flare ups’ after emotional arguments, and my last covid infection was similar too.. 111 ended up sending an ambulance that time as my HR was sky high, BP was very low, I couldn’t get up off the floor as I had no strength to stand etc. My life is completely dominated by being unwell, I’m mostly housebound and often bed bound with fatigue, these flare ups etc.

I saw an endocrinologist in 2024 who said my cortisol was in the ‘grey zone’ and I needed to keep an eye on it (whatever that meant!). He also did a glucose tolerance test and over the two hours my glucose didn’t rise at all, and then I had a big hypo.

So.. I wondered what the first steps are for getting checked out for AI? If this sounds like it might be a useful path to look at.. I read the Uni of Sheffield developed a salivary test which is an indicator?

Many thanks!

Hi 👋

My light sensitivity is troublesome lately, I’m finding my eyes are becoming painful unless I wear sunglasses inside etc.

I’ve read that different tinted lenses can help stop this sensitivity and migraines, because the colours stop different colours/waves entering your eyes.

I wondered what tints people have found works best? I’ve seen FL-41 from some brands which are pink. Do you buy them online or is it via your optician / eye clinic? I have super strong prescription glasses already, now with a prism.. wondering if a tint would also help!

I’ve waited a year for my NHS referral (after the Long Covid clinic closed and that referral got cancelled!). This afternoon is my big appointment with the consultant.

I’m so worried, not gonna lie!

I’m within the Liverpool, UK catchment area for their CFS Service. My case isn’t clear cut, so they couldn’t do the paper-based diagnosis like they do for some patients. I have hEDS, POTS, MCAS, ADHD & Sjogren’s - in my old area my referral to the CFS Service was declined because I had other fatigue-causing conditions.

I’ve read the lead consultant here supported the old NICE guidelines, which makes me worried about seeing him.

The only saving grace is that I’m in an almighty crash today. I’ve got the shakes and trying so hard not to vomit. I think the hot weather, my period, and my bunny getting badly injured yesterday has completely sent me over the edge. My HR has been high all night, so I’m in for a horrible few days.

I need to write some notes ready.. any advice is much appreciated! I’ll update on the appointment afterwards.. hopefully it goes ok 🫩

“There is an issue that goes under the radar. We are living in a world at the moment where six men own or control most of the platforms through which media is shared, produced or consumed.” - Patrick Younge

His whole speech, followed by Dr Alex Mahon, is so beautifully put. It’s probably the most striking argument about why the BBC should be invested in.

Hi,

I currently work in public service and looking to move to the civil service. Due to disabilities I have a remote contract, and currently working in the digital / tech space this doesn’t impact my job too much and I’m able to do everything I need to from home. Eventually I’d like to get back to some in-office time but at the moment my health doesn’t allow it.

I’ve read on this sub that some departments are a little more flexible with remote and hybrid working, whereas others the culture and expectations are more in-office based. The job roles I’m looking at don’t tend to specify in-office time as essential, though I’m conscious that when others are working flexibly too, it makes me feel a bit less of an outcast!

Are there any departments which have more of a remote working / flexible working culture which I should keep an eye out for? Thank you!

Hi folks 👋

This is a question I’m struggling to find much info on: can progesterone be taken continually whilst still having periods?

In essence, progesterone makes me feel quite poorly. I have health conditions which are affected by progesterone, so even though I sleep great.. my heart rate jumps, my blood pressure drops, and my brain is so foggy.

I take micronised progesterone days 15-28, 200mg. I know this is what the guidelines say for women still having periods, but I’m wondering if it’s just not recommended to take it continually?

I’ve got a catch up with my GP next month, so it would be good to know what I can or cannot ask for!
Thank you x

I bought a tshirt in early Feb, it had some bad staining so I requested a return which was quickly accepted. I sent it back via the lockers, got the refund, all good. Heard nothing more from Vinted or InPost.

Today I received a parcel in the post. Tons of InPost stickers on it. Opened it to find.. the tshirt 😂

Goodness knows where the parcel has been for the last couple of months - around the country by the amount of stickers on it.

Maybe the tshirt was just meant to be, and its grubby lil’ self found its way back to me. The InPost Gods work in mysterious ways!

We bought the new Eufy doorbell with the dual camera around a month ago. It came with the chime mini base device to connect it to. We’d had Ring doorbells for years and fancied a change, especially as the subscription is expensive when you take into account you pay it each year!

TLDR; we’ve had nothing but issues switching to Eufy.. before we send it back and return to Ring, if anyone has any ideas to try and get it working I’d appreciate it!

We’ve managed to set up the doorbell ok, it’s working.. mostly. We cannot set the mini base up, at all! My husband works in tech, he’s been into the admin settings of our router like Eufy have suggested.. changing channel settings, creating new channels, messing about with security and firewalls. It’s crazy, these things are supposed to be used by anyone! The damn thing still isn’t working. It’s been a nightmare messing with it all as we have a mesh network attached to our router. I’ve tried searching online about these mini bases and all I find is people struggling with them.

I’ve synced the doorbell with our Alexas since it’s the only way to hear the doorbell ring throughout the house. And there have been times it doesn’t register a ring either via Alexa or our phone notifications (even though it’s acknowledged it to the person on the doorstep). It’s taking a while to even load the video stream to check who’s at the door, so I can’t rely on my phone to check who’s there and if I need to answer - they’ve gone by the time it’s loaded 😂

Everyone on this sub seems so happy with their Eufy bells, and I was really looking forward to getting off the Ring subscription roundabout and switching to a more sustainable option for longer term. I’m unsure if we’ve just got a dud, or we’ve been really stupid and done something wrong?!

If anyone has any ideas or suggestions to improving our Eufy experience before we return it and switch back to Ring, I’d really appreciate it. Is there something obvious we’re missing? 🫣