Thread 6? Good grief..what are you up to today if you have chronic illness?

[MewithME]

Link to last thread. https://www.mumsnet.com/talk/_chat/5475947-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-5

Hello to my chatty poorly friends and welcome to New ones....

Morning all.
Hope everyone is ok.
@FurForksSake hope the appointment goes well today.
Had a call with big(ger) boss today to review extension to me working from home to care for MIL.
Now worried that I said the wrong thing and messed it up!
Just hearing me um and err my way through the answers and forget the question aargh!
Think he will probably give me another 6 months then reduce the office time to twice a month or something like that.
To be honest that's probably a good thing to get me used to going in.
Trying to explain why we weren't using outside carers etc and respite. Also ended up sounding like my DH does F all. Just needed to wake my brain up and focus which didn't happen!

Well DH couldn't see anything and my restful morning turned into a trip to the GP ...

Verdict is very impacted wax in both ears 😞 and I've been urgently referred for microsuction 😬🤞

Home now trying to de-stress before pottery 🛏️☕

Hope it goes well @FurForksSake and you are listened to ❤️

@FurForksSake Write things down before the appointment so you've got everything there in front of you. So even if the rheumatologist goes off on a slight tangent you can bring them back to your actual issues.
Good luck!

@Swanhilde micro suction sounds gross but weirdly satisfying! How long do you have to wait for that? Enjoy the pottery. I fancy that one day. Might make it a retirement goal. When I was a youngster, I did my art foundation year and we had to choose between ceramics and photography. Wish I could have done it then. My friend (who is still my friend thirty odd years later) had a successful ceramics career. She still makes art but works more part time than I do (which is almost full time).

@FurForksSake hope it all goes ok. So many appointments. It's v tiring

Parents evening all went ok thank you @Realisation14 . I had to ask for the key for the lift though and then it's embarrassing because it's glass and everyone stares at you 😂 They over ran some appointments so it was a bit chaotic and exhausting, as predicted. They all said lovely things about DS though so v proud of him as usual.

I'm having a long lunch today with a lie down. I'm going to crash if I'm not careful today and tomorrow. Visible gadget told me what I already know this morning!

I've been naughty and only gone into the office once this week but I know I can get more done and not get properly ill if I can have more time at home.

@Swanhilde wax may not be the cause of your problems but believe me after microsuction you'll be able to hear a gnat fart 😁

@MewithME steady on! Sounds like you have been pushing through.

How lovely to get a great report for DS. One of our daughters we always had to hit the bottle after we returned home...but all's well that ends well!

It's raining again today, but after a busy day yesterday I'm happy to stay in and blob on the sofa. Even more so as I spent my birthday book tokens and now have a pile of "to be reads".

I'm finally awake in the day time for the first time this week!

I got exhausted on Sunday afternoon and "had a nap" that accidentally turned into 10 hours and I woke up at 2am. I then got stuck in a cycle of being awake all night and sleeping during the day. But yesterday I woke up at 6pm and was utterly exhausted again by 3am so went back to bed and woke up at noon.

My mum's coming round for dinner and a film tonight so I'm glad I'm awake as I thought I'd have to cancel it.

I'm debating when to start my re-read of a book series I read last year that has a new entry early may. It takes 140 hours to do the full audiobook. I want to try and time things so I finish right as the new book is released but it's hard to tell how much "awake and alert" time I'll have over the next couple of months as it's been so random lately.

I've got one more book in my current series to finish then I either start that series or something new to delay a bit. I've got a few games lined up ready to go that I picked up in a big sale. I also have ADHD so struggle to pay attention to audio books unless my hands and eyes are busy so I play simple video games while I listen.

So, rheumatologist diagnosed me with fibromyalgia and said I do have all the symptoms of Ehlers danlos but fibromyalgia is a better diagnosis for my symptoms?

blood tests, X-rays, mri and referral for wrist splints and to carry on with physio and to go on gabapentin.

Wonder why they can't diagnose both. I'm in gabapentin if you want to ask anything. I think it helps a bit

Quiet day again here the Visible app still telling me to rest. Had a nap at lunchtime then a phone call from a relative which was nice but it's annoying that even conversation can be tiring as well.

Got the ocado delivery this morning which was helpful. I just keep ordering the same things as it saves it from the preview week which is a bit boring but easy!

DH is stressing about stuff but I'm trying not to get involved. Not easy! I think he understands that it stresses me out though which is good.

Hope everyone has a peaceful evening

I was on it until November and stopped at the advice of my hip consultant.

she said something about fibromyalgia and a hyper mobility condition but I don’t know if it’s a coding thing. She said it made no difference at all to the treatment. Physio, pain management, wrist splints and chronic illness clinic I think.

Bloods and xtays done and I’m back home before going out again to hydro. I’m exhausted already!

im a bit wary of gabapentin because doesn’t it affect you cognitively?

You do make me giggle 🤭

DS has given me a fair bit of stress but not of his own making. He was badly bullied in Y7-8 but thank goodness it's stopped now, so it's a joy to hear about him and his work and not other kids and bad behaviour.

Pushing through...hmmm almost.. sometimes it's hard to know how to deal with work when there are deadlines. I have sacked it all off this afternoon though. Long lunch has become afternoon off.

@MewithME by our parenting experience it does go to show no two children are alike. If we'd had dd2 first we'd have prided ourself on her many achievements and thought what fab parents we were. She even slept! Totally different outcomes despite an identical upbringing.

Who knows what an 'urgent referral' means @MewithME , she didn't give any time scales 🤷🏼‍♀️ And yes @TeaAndStrumpets , I think the world is going to be a very loud place once it's done 😳

Ceramics class was a mixed bag this afternoon. Bit disappointed with my first tiles as I'd over glazed them and they've come out of the kiln looking milky. Will be more careful with the sunflower one that I finished today. And I started a new plant pot which (as often happens with my pots) got away from me! Still I think it will look fab, even if it is huge. It was definitely satisfying to make and sparked joy 😊

So glad you got some answers @FurForksSake and ongoing care. I've never taken gabapentin but duloxetine really helps with my pain 🤞

DH has also been doing car shenanigans today which has meant I've also had to do life admin. So much for my restful day ... Anyway I am now in bed with a cuppa ☕

Have a peaceful evening all 💕

Photos that I also meant to post ...

I love your beautiful creations!

Thank you @TeaAndStrumpets rested all yesterday feeling a little more with it today!

Excellent!

These are beautiful. I love the soft effect on the tiles.

I am wary of the cognitive impact but it seems ok for me in quite low doses. I saw that study which came out after I had started it.

I found pregabalin much worse. I do have a family history of dementia though. Not easy is it sometimes deciding what to do.

I'm thinking of asking for a referral to the pain clinic but online it said something about not taking patients with ME not sure why.

Evening all

I hope the diagnosis turns out to be helpful @FurForksSake

Hope your ears are soon functioning again @Swanhilde - and I love your pottery.

I've had a really nice day - we made what we're calling 'early spring' wreaths (which look suspiciously similar to Christmas ones because it's mainly evergreen stuff that's still about to use). Had a little walk to the local city farm after lunch - got rained on a lot but still nice to commune with the animals. Friend let me talk a bit about how I was feeling, and checked in a couple of times while we were walking to see how I was doing, but otherwise it felt like a good relaxed escape from thinking about being ill. Not looking at screens all day has been rather nice too! I am really tired now but in a less horrible and wired way than I have been all week. And looking forward to a day with no plans tomorrow.

@FurForksSake a diagnosis and treatment plan sounds like a positive step.I really hope it is. I know none of us want these diagnoses but I think it's better to have a name and explanation, and hopefully a pathway to manage, than just dealing with the symptoms and being in the dark.

@Swanhilde you know there are weird people on here who will probably want to see the results of your ear hoovering? 😂

I had my pre-screening with the ME/CFS clinic yesterday. An hour on the phone with a lovely nurse, she said some really nice things. Asked about some things in life that I really wish I could do and suggested that, if I do get a diagnosis and get onto their programme, they can help me get to do those things again.

Unfortunately the actual assessment won't be for a few months as they are very busy but it was lovely to be listened to by someone sympathetic. And to be able to be honest without downplaying everything as we do in front of family and friends (although I did feel embarrassed talking about myself so much).

Thank you to everyone for your encouraging words about the funeral.

Morning all!

Woke up with heart pounding so glad to be up. Yesterday seemed very busy. I'm going to try to have bare feet all day today, i've got some huge
adhesive dressings but they tug on the surrounding skin when I walk so my healing burns are getting pulled open ouch. I've ordered some soft pads and gauze bandages so hopefully that will be more gentle. What a palaver!

I have a huge list of things to do from my sofa, shopping lists, birthday presents etc. I tend to read books in the evening only, it's my wind-down routine. I find if I'm in the middle of a book it's something to look forward to at the end of the day. At the moment I'm reading a re-imagining of Pride and Prejudice and I am really gripped.

Hope everyone has a good day!

Glad your pre-screening went well @VikingNorthUtsire

Hope you have a good barefoot day @TeaAndStrumpets

Woke up at 5am after a horrible dream - seem to be in a phase of them at the moment, but not really surprising my brain has things to be figuring out. I have a little bit of 'second job' work to do this morning, music teaching, then trying a new online gentle yoga class. This one is run by a local group specialising in ME/CFS/Long COVID - they also have an in-person class you can attend as and when you feel up to it. Quiet day after that - probably reading a bit and finishing watching Bridgerton.