What are you up to today if you have a chronic illness Thread 8.. plodding on gently...

[MewithME]

Linky to last thread 🧵 https://www.mumsnet.com/talk/_chat/5506529-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-7

Let's be good and use those last posts up first. Nice to be tidy here if not in my house! 😉

@bedfrog i am really worried too. As I know my health will continue to decline. I am worried that we will go from a household that is coping to one that'll struggle. I am just about holding onto my job with both hands as it is. Take away the benefits that I'll end up needing to apply for in the future years and I feel for my immediate family.

@martha79 I didn't feel too bad after the autumn one but I had it before I started chemo. So I don't know if they've changed the formula much for the spring dose or my reduced immune system is kicking my ass.

My general feeling about it is, if you got covid would you need to be admitted to hospital I.e existing conditions if yes then you should be having it. My worry is getting covid and them just letting me die because I am palliative despite actually being a fully functional adult still.

@ValleyClouds I've had acupuncture in the past but no long term benefit, although apparently I have very low chi...ie worn out!

@DoAWheelie I never watched Stargate but we used to love all the Star Treks. There was a preachy one the other year (Discovery?) we got fed up with, but Strange New Worlds was fun. It's quite soothing to have long series to watch.

@bedfrog DH has a very limited repertoire but he makes decent pancakes for me (buckwheat) and freezes them in batches. Very quick to reheat in our mini oven.

Filling up on tea and a very early lunch before I go to get my eye done. Not worried this time but hope I don't get vertigo again as my eyes will be matching. Last time I slept a lot which I didn't mind.

Thanks for the congee advice, @TeaAndStrumpets! Luckily DP can WFH most of today so I’ve suggested he we could give it a go.

The whole of yesterday all I ate was scrambled egg, one tinned tomato and a piece of toast. There was, shall we say, a corporeal rejection of same.

I’ve put off my biologic injections for a couple of days. Does anyone else do this?? My immune system doesn’t need any more of a battering right now. But that means I risk a flare-up of autoimmune arthritis, psoriasis and other bloody gut issues. Can’t win.

Best of luck @MyAutumnCrow

Good luck with the second eye @TeaAndStrumpets - will be so good once they're both healed and working!

Me too @Oioiqueen it's too much to ask to live a good life isnt it? It certainly feels that way anyway. Fingers crossed you manage to avoid covid, what a scary thought for you.

I pay for my covid jab privately as apparently (!) it won't kill me outright, but it did leave me extremely ill and housebound and then unable to walk or really look after myself. I suppose that's fine by the nhs (?!)

I made pancakes and now am suffering! Predictably. Back to bed with the heat pad for me.

@TeaAndStrumpetsbuckwheat pancakes sound good, and gluten free aren't they? I'll have to try them, I think. Will rope dh in to make them for me. Good luck with your eyes today! Hope all goes well

@MyAutumnCrow sounds so rough for you, I hope you manage to recover a bit and can get some kind of balance very soon

@TeaAndStrumpets Gosh that's come around fast. It will be done before you know it.

Hi @ValleyClouds
@Swanhilde I love that vase, its exactly the type of design I would be drawn too.

@MewithME Thanks. We have been split for 3 years but I was too ill to start the divorce especially with all other demands on top of it but now I feel I need to do it. That's great advice about decorating before hand. I have thought of that and I am lucky that my mum have a big enough house I could move into whilst it's being done. I dont know how to manage the cat in the interim though. That may be tricky. Anyway, one step at a time.

So much talk about dreams. I have been having one of my own. I'm trying to pack to leave either a holiday to come home or vice versa mainly and I cant pack quick enough. Its never ending and I'm late and stressed. Kind of makes sense the way my life is right now.

Been a slow-ish morning. Feeling very tired today and constantly feel on the go do going to try and take some more time out today and then tomorrow the kids are with their dad so I may have a complete rest day. Debating the cinema though.

@TodayIsatrickyone Great news about your progress. Well done

@martha79 The occupational therapists (I'm guessing it was an OT) question 'do you shower alone' would absolutely be me all the time with brain fog 😂Part of the reason i'm cautious about stepping back into the profession

I think its awful they don't offer the covid jab when you have long covid. For many reasons I personally have decided not to get it again myself but I think it should be an option

Yes @Tiredandwired2 I had m.e before I had covid too so now I have a weird combo of that and long covid. Still not eligible for Antivirals or jabs. Pretty worrying for the next time. Last time I'd just had a booster the month before too and was still incredibly unwell. Surprisingly so.

Good luck with eye number 2 @TeaAndStrumpets You’ll hopefully be back reading in no time. 🤞

Missing reading here too, audio books are a life saver but hoping I can get back to actual books sooner or later.

Waves at everyone 👋
Very Tired today and pain not good but made my daily trip downstairs and lying on cushions outside but in shade due to light tolerance.

Covid absolutely hit me hard too. Not hospital level though felt very close.
Recovery took months both times.

I caught COVID whilst I was in hospital for something else and from the way the staff reacted you would think I had done it deliberately just to spite them!

@Tiredandwired2 just checked, they're 'clinical specialist rehabilitation therapists' - I guess basically OT but specialising in Long COVID. I'm sure I've also said similarly daft things at work especially in recent months 🤣

When will I learn??! Using my arms (to stir massive vats of glaze) is just as bad as walking up flights of stairs (which I did on Wednesday) and has the same affect on me ... 🤬

Felt really rough this morning and dragged myself to the allotment. Mentally, I'm really glad I did. Physically, not so much 😞

I am now making myself rest this afternoon and not go and potter in my garden (which is what I want to do) 😥

Sorry for the pity party 💕

@martha79 I guess it makes the day interesting. I never know what may come out of my mouth. I use voice memos to quickly capture things I need to remember and when I listen back I have often used the wrong words. I have no idea in the moment though.

@ValleyClouds that sounds awful and traumatising 💐

@bedfrog I hope you don't mind me asking but what do you personally find is the difference between ME and long covid? I know some people with long covid go on to be diagnosed with ME but I don't think there is a clear pathway yet.

@ValleyClouds welcome 🙂

Regarding local elections, our area doesn’t have them until next year but if someone was to make a Cat Party headed by Larry the Cat then I would certainly vote for them

@Tiredandwired2 well for me long covid had a different set of symptoms to my usual ME. I had all the usual fatigue and exercise intolerance but I also couldn't walk, had nausea and palpitations, dizziness if I overdid it, and terrifying events of not being able to move at all. They all eventually went away and left me with just the usual ME fatigue. It was really strange but I really felt like they were 2 separate things for me!

@Tiredandwired2 it was absolutely terrible I won’t lie, thank you x

I'm sorry that was your experience. It sounds quite similar to my experience of long Covid. I had never had ME before but I did previously have fatigue and pain with an unknown cause. I always had some limits but it was minor. It's interesting to hear how it differed for you so thank you for sharing

Wish me luck. I've just timed my Ciprofloxacin doses (vile stuff) in order to try to eat a bit of kefir yogurt. That, and Zapain. Oooooh. The excitement.

#OperationBiome

@TeaAndStrumpets good luck with the eye op. Hope you can see us again soon!

Thanks and also to others! Just a quick message then off the screens for a while.

I was very confident because the first eye had gone well apart from tiredness and vertigo afterwards. Eye no 2 has been a bugger, and it's very sore and bleary. It became apparent during the operation that it was taking much longer than before with extra things going on. When it was over the surgeon just said "you've got an air bubble in your eye, it will disappear", and that was it! He is a man of few words. I'll have a follow up next month.

Today I just feel battered but hopefully will get good vision in a while. It was briefly very sharp but the surface of the eye is puffy so now I've got 4 weeks of drops to calm things down.

I'm so glad it's over! Back to my audiobooks now.

Over and out. 😎

👋Hello everyone, I have read all the posts, but by the time I get to the end I have forgotten most what they said, but be assured I am sending empathy and support and love to all of us.

Not done much the last few days, but I just wandered out to the vegetable yarden, (its all in pots on the patio, I don't do digging any more) and the cut and come again lettuce is sprouting, likewise the radishes and spring onions. The water cress in the 'feature' nearly has enough for a sandwich!

I'm going to try some hoovering, wish me luck!