What are you up to today if you have a Chronic Illness. Thread 11 🧵Last of the Summer

[MewithME]

Link to last one https://www.mumsnet.com/talk/_chat/5556429-what-are-you-up-to-today-if-you-have-a-chronic-illness-10-summer-edition

Thank you for being here, friends old and new and sharing our gentle chat, trials and tribulations.

You know the rules though...let's be good and fill up the last one 😊

I think my ME included a reactivation of tonsillitis from when I was a child. Then I got covid and had long covid, was housebound for 4 months and have been left with neurological damage and some lovely new symptoms. I sort of consider myself to have both ME and long covid as they each feel distinct from each other to me.
ME - sore throat, swollen lymph nodes, fatigue, trouble with walking, ibs
LC - dizziness/vertigo, car sickness, intolerance to driving, indigestion

You've probably got something you are really good at, you will find it!

Yes! Tonsils, IBS, the whole package. I don't get dizzy or car sick.

Having said that, Covid seemed to really set me back with the symptoms I already had.

Thank you! You have given me so much hope!

Such a familiar story about your Dbrother. If only DGS had maths at grade 4 he could be straight onto a BTEC level 3 music course as he performed for them very well. However the Access college looks amazing, they do games designing, music performing and production etc. Lots of possibilities, and he can resit maths alongside.

Your poor sore tendons! I hope it's reassuring to pinpoint the problem and find it's not because of anything stroke related. Maybe the physio is inadvertently giving you the wrong steer.

Ahh I’m glad I’ve given you hope @TeaAndStrumpets My DB definitely took the long road but he’s had quite an interesting career and his enthusiasm for music definitely helped it along.

Needing a maths pass is always a hard one but if he can resit alongside the music that would be great.

I think music is a fantastic way to break the ice and make friends too so hopefully if DGS can get to college, he’ll find his feet. DS was always a bit shy when he was younger but is in his element hiding behind a guitar! He found his tribe both at sixth form and uni via music.

Yes the GP was quite sure the tendon was damaged which is causing all this severe pain again.
I do hope he’s right as I’ve been very down lately thinking if it’s the stroke… then it’s a very long haul. Only so long you can keep on quoting 'This will pass' … At least this should eventually ease up one way or another 🤞 so feeling a bit more hopeful.

Have got the osteopath later this week too so that should help release some of the muscle tightness.

Thank you all for the lovely welcome. I think a bit part of my issues was pretending that PEM wasn’t happening and just chalking it up to busy work days, etc. it wasn’t till I left teaching that I realised it wasn’t really getting better, if anything I’ve got worse in the last year.
@TeaAndStrumpetsim keeping fingers crossed for your your DGS’s music course, I’m an ex music teacher and was always pushing for more access to things like this, some of my best students were the ones that struggled elsewherr in school, but were able to find a safe space in my department, I also had a few self-taught pianists, the talent never failed to astound me!

Thank you! Very reassuring to hear. 💕

Osteopaths in my opinion are often miracle workers!

Good luck to DGS @TeaAndStrumpets, it sounds like a brilliant course. I studied music but it was much more academic, I'd have loved some options like that to explore.

I'm as usual feeling a bit better after my counselling appointment - this week's mission is to show myself compassion and try to properly pause and rest more often. Not much to ask then!

@TodayIsabetterone I'll take a gingerly bow as if I curtsy I'll fall over haha!

@B242 sounds like you have so much going on at the moment. I have terminal cancer I'm 9 months in now and doing really well. Treatment has come on so much in the last 5 years and astonishing so in the last decade. Feel free to rant, rave, ask questions or whatever happy to help. Also your mum would want to know honestly, she might have a lot on but she will still care for you.

Brrr it's going to be cooler again tonight. My side of the electric blanket is switched on but apparently if we changed to the winter duvet DH would die of heatstroke. I've got my big cardi on this evening, though!

We had a lovely afternoon with family, lots of music and chat. I feel shattered now but it was such fun.

@TeaAndStrumpets gosh I've still got the windows open and in shorts and tshirt....

I was up at 5:45 this morning, and our heating had come on. Which is a tad depressing. I was hoping to build up a bit more money in the electricity account for winter, but if its going to start coming on in August I fear I will be well in the red before Christmas.

I always feel the cold! DH and I seem to live in two different climates.

That seems a bit much, I've been resisting switching it on in August, it's wrong isn't it? But needs must. Hopefully you're in credit after the hot weather.

I'm feeling a bit chilly, got a sweatshirt on and been hugging the hot water bottle this evening.

My upstairs neighbours have just had a big argument with lots of shouting and stomping about, and my adrenaline has properly shot up (for lots of reasons the sound of people arguing like that makes me very shaky). They now seem to have both gone out in their car though, so not sure if that's the end of it for this evening.

Might have to find something nice to watch to wind down. I watched a fairly silly film called 'Nessie' about the Loch Ness Monster earlier!

I prefer the cooler weather. Get all nice and cosy with blankets, fluffy socks etc

Oh that's not good. We had that at a previous house, being a semi you could hear every word! Eventually he left so it was peaceful again.

My pink hot water bottle has been doing sterling service today! Really adds to the cosiness.

We've been watching Ballard which I quite enjoy, at least it's got Bosch in it. Also I notice Professor T is back at last, that is really enjoyable.

Nessie sounds a good choice for calming the nerves!

I'd like warm but not boiling!

I’m quite happy with this temperature, it’s comfortable but I do love blankets and more cosy things. I watch Cecila Blomdahl, she lives in Svalbard and when she filmed her latest video, it was 5c

@OioiqueenI’m so sorry to hear that. It’s definitely very heartening seeing the advances in treatment nowadays though.
and my mum knows, it’s just not quite possible to properly go into details because of everything. So we talk when she asks and I mention milestones, but other than that it’s mainly my poor husband who has to deal with my complaining!

I overheard them saying to someone the other day that they'd recently moved in together - I think he's been there a while and she's just moved in. Hopefully it won't last long if they're going to be like that!

That's good news about Professor T.

Goodness it has cooled down for lots of you. Still about 23/ 24 ºc here I think. Had the fan on earlier and my bedroom was 28ºc as it’s south facing! So window open overnight still. I have put long pjs on with a t shirt for the first time though but pondering if I’ll be too hot 😬 I’m happy with warm as long as it’s not sweltering!

Evening all.
Have checked the forecast for the week & it's going to be 17 - 20⁰c here. It's already dark and definitely feels like the end of summer. Actually considered putting the heating on the other night. It'll be a while before the heated throws come out though.
@martha79 hope you are settling in despite the arguing neighbours.
@TeaAndStrumpets hope all goes well for dgs.
@Oioiqueen hopefully research will continue to find solutions and you will be with your family for many happy years 🤞
@B242 welcome to the gentle corner 👋.

Goodness! Now that is cold😨