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19
InMySpareTime · 03/10/2025 21:16

Church had a worship night tonight, I wanted to go but can’t handle the noise, bright lights and crowds.
I set up an “accessible space” in a quiet room in the church centre with low lighting and sofas, with the service live-streamed onto a screen.
I had a lovely evening and am not wiped out like I usually am after these things.
Another lady joined me, she said it was a lovely calm atmosphere and a nicer way to worship peacefully.
I’m glad I managed to express what I needed and made it happen, hopefully I’ll get to do it again soon and more people will benefit from it.

EducatingArti · 03/10/2025 21:23

That sounds amazing @InMySpareTime
It's the sort of thing I would have appreciated at church too!

Orangesandlemons77 · 03/10/2025 21:51

I'm so sorry to hear about the burst eardrum- that sounds so painful and distressing. What happens with healing can it grow back again? I don't know much about it.

*Looked it up and says it can heal in a couple of months.

ChampagneRose · 04/10/2025 07:52

Burst eardrums are horrible you poor thing. Make sure you don’t get your ear wet in the shower for a few weeks until it’s healed.

I am still in my ‘bad sleep’ patch. Only getting 6 hours a night which isn’t enough for me. Keep waking up at 3 and not getting back to sleep. At least it’s the weekend and I can have a lovely afternoon nap today.

Realisation14 · 04/10/2025 08:08

Burst ear drums are so so painful 😣 you have my sympathy!

The last few days have been shit. Really really shit. I tried on Thurs evening to create some fun with my son and niece to blow off a bit of steam which was nice but then yesterday was just crap all over again so it sometimes feels like what is the actual point.

MewithME · 04/10/2025 10:04

We made it to the weekend again folks.

That sounds so beautiful ...the church quiet service. I love being in churches though I'm not religious.

I didn't sleep well at all. I am really struggling to switch my thoughts off just now. I wonder if it's some sort of perimemopause/menopause anxiety. I feel I could have a good cry very easily. It's just under the surface and tears prickle my eyes very easily. Though storm Amy was probably making some noise too which might have effected me.

Work is intense and I feel exhausted by it. And there are so many things wrong with the house. I feel quite ashamed of it.

I noticed a watermark on the ceiling so the bath is leaking somewhere. The house is such a state. I feel like a loser. I have nobody to help unless I pay people. I can't even get people to come easily... Takes me ages to ring and then if they don't answer and don't come back to me...it takes another chunk of time to follow up or find someone else.

I have only got my son's haircut to deal with today so I will try hard to calm down and feel less stressed.

@LambriniBobInIsleworthISeesYa ouch! So sorry. Hope you heal quickly.

I've been struggling to keep I with who said what on the thread.a bit..I've been too head mashed the last few days, forgive me if I get mixed up. @TeaAndStrumpets hope you enjoyed your granddaughter visit. Tiring but how lovely.

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TeaAndStrumpets · 04/10/2025 10:08

Two busy days on the trot, now swollen glands in throat and IBS ramping up. It was lovely to see family though - will rest later!
Flu jab at lunchtime then we need to go to our storage unit some miles away to check for leaks. It's pretty sound but it gets condensation on the skylights which drips down. Awkward jab appointment time so we are going to take sandwiches and have a picnic at the storage unit, surrounded by boxes...not the weather to sit outside...
That's my exciting day!

MewithME · 04/10/2025 10:16

TeaAndStrumpets · 03/10/2025 09:59

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!

Omg yes!

I've had a weird year with this and I'm not sure what's going on. At Easter I think I had a virus..maybe a covid variant. Pretty confident it was as someone I gave a lift to was ill with it (annoyingly I didn't know and couldn't boot them out the car). It started with my eye streaming and swelling by my nose. Then ...as MEcfs seems to do .. I felt like I had it again or something similar. I was in a bit of a crash in the summer.

As usual on annual leave, I think my body gives in and I was quite unwell. Was not sure if it was just a crash or another virus. Weirdly had very painful nose. As if I'd hit it. Very sore to touch in the bridge but nothing visible.

Then I've had other bouts of exactly what you describe. Puffy eyes on waking, hot and swollen sinus feeling but very dry. I got eye drops and nose spray which I think may help a bit.

I've been googling....

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MewithME · 04/10/2025 10:17

I found this article

https://www.healthrising.org/blog/2019/10/14/phantom-nasal-congestion-chronic-fatigue-fibromyalgia/

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TeaAndStrumpets · 04/10/2025 10:26

@MewithME thanks it was delightful, she is such a poppet. A miracle baby for her parents after several losses, I think they've been walking on air since she was born.
I know what you mean about churches. I haven't been since I was 15 but it was so different. I was brought up with the Latin mass so when I went to my uncle's funeral mass I felt like a fish out of water with all the cheeriness and hand shaking! I think I prefer a more solemn atmosphere, or an empty church. Maybe I'm just antisocial.

Panic sets in at the thought of "getting someone in" - there is something about plumbing that is quite scary.

I hope the haircut goes well. Never had to worry with girls so easy to trim a bit off, but I've occasionally taken a bit too much off by mistake and there have been tears ;-)

Just been back to correct numerous typos, my brain not firing on all cylinders this morning.

TeaAndStrumpets · 04/10/2025 10:30

Oh that is interesting. I've had to gaze in a mirror to see if it's a facial tic but I think it is literally throbbing inside. Just where you would flare your nostrils like Kenneth Williams! Very annoying.

MewithME · 04/10/2025 10:43

Ha..at the image of us doing Kenneth Williams faces 😂

I love an empty church. It's becoming a thing with me. I love looking around them. When you think abstractly about how old a lot of them are ..and they're just open and there... whoever wants to go in. It's quite remarkable. I popped into one about a year ago, on a rare afternoon when I felt well enough to go out and had some time to myself. It was so peaceful. I found myself in tears and I didn't even know why. I think it's that chance to just be still that we don't get in this world much. It felt very calm and I felt really grateful in a weird way. Not religious at all but I was raised with it. I felt quite at home.

But I'm an artistic and sensitive soul. I probably sound a bit woo 🙈

@InMySpareTime hope you can enjoy your church service again like that. Really lovely.

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TeaAndStrumpets · 04/10/2025 11:29

@MewithME agree.

TeaAndStrumpets · 04/10/2025 13:23

Had the flu jab and within a few minutes had a severe muscular spasm across my lower back, it went away after 5 - 10 minutes. Mind was racing about rare side effects of course, so got a bit panicky.

Went home and rang 111 to ask if it needed reporting, got sent to consult my local pharmacist. He says it's just a reaction to having a needle in my arm, but I was taken aback by how suddenly it came on. Says it's fine to have the jab in future. Hot water bottle afternoon!

Tiredandwired2 · 04/10/2025 13:33

Not doing much today. My original plan was to go to M&S but my sons home unwell so change of plans. Probably for the best.

I have just been chatting on the phone to a family member and I'm exhausted now.

Does anyone else have difficulty regulating body temperature when having conversations? I think it's my body going into overdrive because of the amount of energy required but I am so fed up with it. Maybe the Ivadabrine will help.

@MewithMEHouse problems are the bane of my life too. I dream of having a rented house where it's someone else's responsibility. Could it be the sealant that has failed rather than any pipes?

Swanhilde · 04/10/2025 20:19

Went to work this morning as was offered the overtime. This afternoon was spent on the sofa dozing.

Left over risotto for tea and now watching Strictly 💃

FishFlaked · 04/10/2025 22:23

TeaAndStrumpets · 03/10/2025 09:59

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’m really sorry to hear you’re in a bad way but it caught my eye you mentioned waking up with an adrenaline rush. I have that too- wake up with a racing heart. It’s a horrible feeling, not heard anyone else describe it. I wonder what is going on when that happens? I had assumed it was stress related but I don’t know.

FishFlaked · 04/10/2025 22:30

I find Ivabradine good, personally. No side effects and though it seems to be lessening in effectiveness or my symptoms are getting worse so I am going to be upping the dose at the next review, I really notice that when I run out and don’t have the next prescription lined up ready to go that I feel a lot worse more exhausted and POTsy for not taking it.

It’s also good in that it has the days of the week printed on the pack. One of my big symptoms is not remembering whether I’ve had my medication at all. I still forget maybe a couple of doses a week, but the packet helps me to be more confident of what’s happened that day. I’m pretty sure that has helped me overall miss fewer doses through brain fog.

ChampagneRose · 05/10/2025 07:58

I don’t get POTS but do get low blood pressure. I also get those adrenaline rushes and I think they are worse when I’ve done too much. Like my body gets stuck in overdrive and can’t come back from it.

I had a moment of realisation last night that I’ve basically lost all my friends bar one. I was living somewhere else and had a big group of local friends (as I had lived there for 20 odd years). I moved about 20 mins down the road but then got ME after I did that and because I have to focus my energy on working, I don’t go back. For ages people did not believe that I was ill because in their mind I could work and if I could work, why wasn’t I making the effort to go and see them. In fact one woman removed me from my friendship group WhatsApp and told everyone else I clearly couldn’t be bothered anymore.

I had a bit of a cry about it last night and I know you are the only people who will understand this. It’s not that I don’t want to be friends, I just find it almost impossible to do anything past 8pm (I’m in bed then) and I have to work as I’m not married and have to pay all the bills! I do try and do special meals but if I go out in the evening having worked during the day, I’m generally bedridden for a few days afterwards and I just can’t afford that.

anyway it’s really another thank you for the thread @MewithME. At least I know you guys understand it!

ChampagneRose · 05/10/2025 08:03

It’s also because I can’t do loud noise and I can’t stand for long and when my friendship group meets up, it’s always in the pub and I just can’t do the noise without it really badly affecting me. Can’t drink either as it makes me feel so ill (though every now and then I do sneak in a glass of champagne but it always floors me for days!). I have to carry earplugs with me when I go out in case noise is too loud!

argh!l

TeaAndStrumpets · 05/10/2025 08:04

Thanks for the solidarity, @FishFlaked . My adrenaline seems to be directly related to my level of fatigue. (I have just corrected 3 typos in that sentence!) I also get the whole body jerks when I have been doing too much..mental or physical. So yes for me it is stress, nice things included eg socialising. My body seems to be over sensitive to everything.
Oh the pills, sympathy! My short term memory is shocking so I can take a packet of pills out and then a few minutes later be standing there trying to remember if I have taken one. The answer for me is a days of the week pill box, so I cut the foil pack into little squares every seven days. My only regular medication is levothyroxine daily and Ibandronic Acid (for Osteoporosis) once a month. I certainly couldn't mistake that one, it's like a giant horse pill and I have to take a huge glass of water with it. Also there is only one pill per packet. You can imagine if it came in a pack of 6 or 12, some old dear would get confused and take extra ones! (Probably me lol)

All over aching joints after my flu jab yesterday, but hopefully better than actual flu.

TeaAndStrumpets · 05/10/2025 08:50

ChampagneRose · 05/10/2025 08:03

It’s also because I can’t do loud noise and I can’t stand for long and when my friendship group meets up, it’s always in the pub and I just can’t do the noise without it really badly affecting me. Can’t drink either as it makes me feel so ill (though every now and then I do sneak in a glass of champagne but it always floors me for days!). I have to carry earplugs with me when I go out in case noise is too loud!

argh!l

Oh yes, no booze and no noise! I became horribly ill after the tiniest amount of alcohol , starting in my mid 40s. I would console myself with chocolate and I then developed an allergy to chocolate! The cocoa bean to be exact, according to my patch test. Downhill from there, just oversensitive to so many things now. Chemicals, too, the detergent aisle in Sainsburys is like chemical warfare to me. I do have a good sense of smell, always had. My children each smell unique to me, and I could smell fevers etc. I think a lot of women have this.

When I switch my TV on it starts blaring out loud shouting people before I remember to cut the sound and put it to the channel I want. ( BTW @MewithME two episodes in of Slow Horses what bliss!) Painful to the senses.

I need to choose floors for our new house and it would be much easier to tile throughout but the thought of so many hard surfaces in the kitchen echoing really worries me. I would like Marmoleum but nobody local stocks it, so I need to travel to the next county to find someone. I'm planning on going into the carpet shop and requesting a chair next time. Last time I only called in for 10 minutes - it was exhausting just standing and looking at things.

I wouldn't recommend it as a permanent cure, but after my last bout of covid I was deaf as a post for a while. It was very peaceful but also annoying for my family. I went to have microsuction and the amount of wax that came out was both mortifying and very satisfying! Very small ear canals, easily get bunged up.

MewithME · 05/10/2025 09:55

@ChampagneRose I get it completely. I can't do evenings at all. I cannot remember the last evening I had out. Some kind friends have met me for an early meal at 5pm before...when I'm doing better and only on a weekend.

Yes it's cruel ME. I think people think exactly what you've said. If you are seen working or having a holiday then you must be ok.

I smile through people's stories of trips to exciting places and weekends away, and inside I ache because I feel all I do is work and look after my son. There's so much in life I haven't done and desperately wish I'd made other choices. I feel stuck. Mentally and physically. I don't know how to change anything as I just use everything I have to do the day to day. I don't have any support. And yet, there are lots of people worse than me...I know that. I just hope to keep to this level and not get worse.

I've never had a big group of friends. I have a few good individual ones. Could you perhaps try and explain to them a bit? Just meet one to one for a coffee or have them to your house even?
I am grateful that I have three friends who do understand and will make an effort to come to me if I can't go out.

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MewithME · 05/10/2025 10:04

@TeaAndStrumpets allergic to chocolate! That's just awful. I have dark chocolate regularly for it's anti inflation properties!

Glad you're enjoying Slow Horses. You reminded me I have another episode to watch! I take great solace in my TV shows and podcasts and audiobooks. I just finished my audiobook this morning. Richard Armitage is just the best narrator. He's wonderful. I feel weirdly grateful to the man as he's given me a lot of joy when it was hard to find.... And that sounds a bit wrong, though I don't mean it in any iffy way!

Anyway, I have woken in pain as usual and the headache is arriving now too. The vibration and twitches are quite bad ..and yet I wonder if this Sunday I might find a tree to sit by for a while. I can't switch my head off from work anymore...I just think about work or the list if house jobs that feel impossible. I feel like I'm going to end up some Mrs Haversham figure..with the house dropping around me...and I don't even want to live here really. So maybe if I go out... despite it being a bad idea physically...it might help my slightly depressed and anxious mind.

Queuing is horrendous isn't it ? Having to stand for any prolonged period in a place with bright lights and music and noise. I am in my earbuds so much of the time.

I have a little telescopic stool which is great for being out but I would feel a right div using it in a queue.

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MewithME · 05/10/2025 10:05

Sorry for the essay too folks. Think I've been in my own head too much.. making me reflective and rambling 🙈

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