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! 😉

@Tiredandwired2 That's how I feel about my world. There's not enough time now because "MEcfs" time is completely different.

E.g. I had two week's leave at Easter. I can either see my family involving a long drive or try and sort some house things out. I can't do both.

I can't do house stuff when I am working either.

So everything is just permanent disarray because I can't spend my annual leave doing such stuff when I need to see family and give my son some fun (and hopefully not completely awful memories of his boring, ill mother).

I cling on to the thought of retirement which is a way off yet but wonder if I should reduce hours now to try and keep healthier/live a bit. It's hard because my pension is tiny as it is and I have no partner or support.

Anyway...I will live in the moment today. Trying to get a straight answer out of DS about what he might like to do currently! 🙂

Oh yes, I totally get that sort of debt @Tiredandwired2 - there are things I'm not sure I'll ever catch up with.

Another damp day here but the garden is loving it. I've had a walk to the supermarket for a few bits and a potter round the garden - mainly tying back plants that have had a growth spurt the last few days.

Not sure I've got energy for much more today. Started watching A Taste for Murder on ITV - it's quite good, obviously crime but a bit like Madame Blanc rather than dark and tense.

Morning all.
Quiet day here. Won't be getting visits from dds. Dd1 is working. Dd2 not sure if dc going down with something or just teething so won't come round just in case.
Dh working & needs help from ds.
I will do some long overdue piano practice and a full set of exercises. Back to physio tomorrow & don't want her thinking I've been slacking!

@martha79 I watched that, it wasn’t bad. Sometimes cheesy but gorgeous scenery and I also like Madame Blanc too

Morning all 😊 quiet day for me today as predicted over did it yesterday so lots of rest planned for today!

@FurForksSake hope you get sorted soon lovely!

@Tiredandwired2 enjoy your trip out with the kiddos 😊

@TeaAndStrumpets I’ve found listening to books to be the one thing that I can do that doesn’t over stimulate me! 🤞you get your fancy hearing aids.

@Swanhilde hope you enjoyed your coffee in bed

@Orangesandlemons77 enjoy your quiet day

@MewithME totally get what everyone means it’s like a constant choice of what needs to be done and our health. And your son will remember the mum that showed up for him daily even when she was poorly 🥰

@Fontet sorry your having to go through this 💐

@JewelleryCat yes you need a licence to watch anything live! Even itv or channel4. I'm fine with catchup and don't really notice it any more.

@MewithMEI've exhausted pretty much all healthcare at this point. I've seen GPs, private GPs, 2 private ME doctors, rheumatologist, pain service (twice), chronic illness physio, osteopath, acupuncture, chiropractic, as well as self management like pacing. Sometimes I pace well enough to build up my baseline and then it drops again either from illness or from nothing at all, which is what happened this time
Nothing really helps except a few medications (I've taken pretty much everything you can find out about online. Some work. Some don't)

I'm diagnosed with fibro, ME, EDS, loosely MCAS, endometriosis, nerve damage, migraine, not quite POTS but orthostatic intolerance. Oh and high cholesterol as well as underweight!!!
I honestly feel a complete mess. I can't actually believe there isn't something progressive going on but I suppose we all feel that way. Sorry to dump all that on you, I think i just need to get it off my chest. I know what you mean about feeling self centred and I also worry about that. I've never thought that about you though! Or anyone else here

@Tiredandwired2 pacing is a trap. I always feel like the day is over before I can do a fraction of what I want to. ME time really is different.

The sun is shining today and I will try and get out in the garden later. I'm currently stuck on sleeve island with my knitting as well, and losing the will a bit.

Hope everyone is doing as well as they can be and having a gentle day (as usual!! Anyone else wishing they could have an adrenaline fuelled exciting busy day instead?!)

@Fontet so sorry your struggling.

@Swanhilde I get what you mean. Mine are older and I am always thankful that they aren't tiny and totally dependent on me

@MewithME Yes, the time is definitely different. I do think it's hard without a partner or practical support. Well done living in the moment because it's so hard with this condition.

@bedfrog That does sound like a lot and I completely get the exhaustion of holding it all yourself. When I did my long Covid course they called it Ilness work.

@bedfrog Being frustrated is tiring in itself!

Yes I seem to save my adrenaline for my dreams. I have a very exciting life when I'm unconscious! Last night I dreamed I was driving really fast in an open car...woken up by my thundering heart rate!

I have adjusted the settings on my Samsung tablet to get better speech clarity without headphones so I am listening to Youtube audiobooks at the moment while DH is out. I am reading one of my favourite Golden Age detective books and what a difference it all is. The heroine spends many pages hiking around the countryside looking for a telephone to call the police, for example. All the characters smoke like chimneys!

The audiobook on YouTube is frequently being interrupted by the same party political broadcast. I am probably being petty but I am really enraged by Wes Streeting harping on about "thecosterliving". I said to DH you'd think a Cambridge graduate would speak more clearly and he suggested it's maybe being done to appear more approachable ?! Not working although he's tbf he's not bad otherwise.

(Rant mode off...)

I did actually share the memes upthread with some people. Hope that doesn't look bad but I think it helps others to understand it.

Not doing much today except drinking coffee as usual and playing music on Spotify. / resting.

Sorry I went AWOL from the earlier threads, it's been a weird few weeks with a string of anniversaries around my late OH.

Spending the day conserving my energy as I'm off out tonight to see Devil Wears Prada 2 but it's not on until 8pm. I'd rather go at a more reasonable time but this is the only showing that has subtitles at a wheelchair friendly cinema (I'm deaf) so it's tonight or wait for streaming.

DWP1 was one of the last films I actually saw with my OH, we did a did a double movie night at home and ordered in a bunch of treats and watched it along with Calendar Girls.

That is very touching and so nice to have memories like that. 💐

@TeaAndStrumpetscrikey you do have some mad dreams dont you? I have some weird ones but never too thrilling. I do get nightmares often but can't really remember them in the morning. I also get sleep paralysis sometimes (terrifying) as well as exploding head!!! Where you hallucinate a loud noise as you fall asleep. It's usually the sound of the front door opening or slamming, or dh saying something. Very creepy and startling.

We can't even get good rest when we're asleep 🥲

@DoAWheelie what a lovely memory of your late other half 🥰 hope the film is good, I'm impressed at you going to the cinema so late!!

I have done a bit of gardening and had dh dig up some plants on his lunch break so I could move them. The gardens are looking marvellous at the moment, ready for everything to bloom (tho my nose runs continuously out there at the moment) 🤧

Knitting and crochet for the rest of the afternoon and listening to Harry Potter audiobook

@bedfrog I don't always remember my dreams but I know I talk in them a lot! It's one long party in my head with old departed friends coming and going and having long conversations. Occasionally I see my Mum but sadly Dad hardly ever (but he was quiet!) I dream about my immediate family a lot of course, they are quite entertaining in real life. DD1 has quite ludicrous dreams so we often compare notes 😂

Ahhh @TeaAndStrumpetsthat's actually lovely, how nice to speak to them again. Hilarious that you and dd compare notes!!

@bedfrog. Oh man you have a lot going on. I completely relate to what you are saying. I have migraines, hives, nerve pain, cfs, hip pain, toe spasms and I find it really hard to accept it’s not something degenerative and progressive. I’m constantly questioning whether I’ve had all the correct blood tests etc. The mental acceptance is the hardest part .

I really hope you have a good day today and enjoy the sun.

im struggling to keep up with all conversations sorry so just trying to dip in where I can.

Today being a long weekend I’ve over done it and not said no to suggestions to just walk the rest of the way etc and now I’m in bed feeling a wee bit of muscle pain. Hopefully PEM is not waiting for me. Dont want my DD to miss out due to my limitations.

Haven't caught up with all your posts but I did something! We made it to the cinema to see Project Hail Mary on the big screen before it finishes. We both loved it.

It made me cry though and I still feel tearful! I love Ryan Gosling. He's fantastic. What a beautiful film 😭 My gorgeous boy is a science nerd and I think the alien had more than a touch of ASD about him .so it really spoke to us both.

Do see it if you get chance. I think it'll be ok n Prime in a few months.

Ahh! Wish I’d gone to see it now.

@MewithME that sounds great, have made a note, thank you.

@MewithME thanks for the recommendation I will look out for it on Prime.

I too have done something today, DH and I took the dog for a walk along the canal. I love that walk, its nice and flat, and I like seeing the ducks. I am a very cheap date nowadays!

Other than that I only did some online shopping and made a salad for lunch. For me that counts as quite a busy day. I will probably need pain meds later, but the walk was worth it.

I also am in awe of those of you who are managing to raise a family and/or work with chronic illness, I really do not know how you do it.

I took early retirement 4 years ago, they said I wasn't ill enough for ill health retirement, so I accepted a huge reduction in my pension and we downsized to finance me not working. I am so grateful we were able to make that decision.

I know I should've challenged the decision about ill health retirement, but I was too exhausted and depressed to have the energy to fight. Ironically.

Glad you enjoyed the film @MewithME and I hope you enjoy your cinema trip @DoAWheelie

I made a start on the cheap paint by numbers kit I bought - the quality isn't great, but then neither are my painting skills 🤣 It was nice to focus on something different for a bit, and not be on my phone, although I did get a bit tense concentrating and had to remind myself not to hold my breath 🙄

@bedfrog I also don't have a TV licence and don't miss it, although I'm a little bit tempted for Celebrity Traitors later this year as it's a good line up.

@MewithME Glad you managed the cinema. Sounds like a lovely time. So happy for you.

@danglethedingle I know what you mean by being too tired to challenge it. I left my work even though what they did was technically constructive dismissal and I could have had a case.

I also need to downsize eventually. In the marital home and going through divorce but looking forward to a smaller space and hoping it will be easier to manage.

We managed the garden centre. I think I was already too tired when I got there. It was super busy too. It was ok but I was glad to get home.

What a lovely memory. Enjoy the film 💕

Morning all!

I slept well but woke with a pounding heart. I know it's PEM but will be glad when it calms down! Hearing about some of you having Visible etc makes me think maybe something like that would help me pace better. I am not over exerting myself physically (that I know of) but I think I'm allowing myself to overthink things.
Hopefully once my eyes are co operating I can lose myself in a book again. Usually I read for hours in the evening and I'm missing that routine. Audiobooks are OK but they are setting off my tinnitus. I need more silence in my life!

Hope you all have a peaceful day.

Morning @TeaAndStrumpets having the Visible has opened my eyes to weird and wonderful ways I was using energy - like working on my computer for work thought that was drain when in reality I can work from home and it not be too bad, so when I’m in the office it must be noise/light and travelling to the office that causes it.

Hope your day gets better 😊

I think you are on to something there, there must be so much extra stimulation just travelling to and from work.

No peace here for weeks - we are having a new gas main put in on our road! The little trench digging machine has been at it all week, coming closer and closer to our house. They will actually reach us early next week. The whole thing will be finished in about 6 weeks. We will have the gas cut off for 12 hours at some point, but luckily only use it for central heating/hot water. If there is a cold snap we would be given electric heaters to use but I doubt we'll perish from a few hours without hot water! It is horribly noisy though.