What are you up to today if you have chronic illness part 2?

[MewithME]

Thread 1 here
https://www.mumsnet.com/talk/_chat/5332156-what-are-you-up-to-today-if-you-have-chronic-illness

Come join us for our ups and down and daily natter.

Off to hospital to see one of my numerous consultants. She is my favourite and has been my doctor for about 15 years now.

My friend is taking me because I can’t drive anymore and we will have lunch out afterwards which is a big treat because I am mostly stuck at home.

It will exhaust me and ironically a sleepless night will follow as nerve pain will be off the scale after this small level of activity.

Worth it though.

Just back from nursery and school runs, and now have 6 hours of work before the return school run. D H is ill this week so the majority is falling to me.

Waiting in for the shopping delivery and DH's meds. Need to clean the kitchen and fridge, and the boring other jobs like the laundry.

Cancelled the pilates class as seemed a bit much and didn't know when the delivery is coming. I really like that class as well.

Oh well, just one of those things. Woke up feeling like I have been run over by a truck so might be good to have another rest day.

I got the pack of workbooks for my ME / CFS course through, maybe I can educate DH in it who seems to think it is all a nonsense (helpful) MIL said "Oh well at least it will get you out of the house"

Another rest day ahead as I really overdid things last week. I will never learn. Thankfully no house viewings upcoming so no need to be tidy. @Orangesandlemons77 you're very good cleaning the fridge, mine isn't too bad but the freezer section is another story, it's got more ice than food in at the moment! I also have a big freezer which is autodefrost which is like a miracle.

It is frustrating when people don't "get" it but I think nobody can unless they've walked a mile in your shoes.

Shouldn't read other threads but saw one about one sided friendships and thought, story of my life with ME. People don't bother with you if you can't go shopping , I find!

Thanks for the new thread OP, I know I didn't contribute much on the first one but I think a thread like this is a really affirming thing to have.

I've been quite drained all week after a very fun but exhausting weekend away with friends last weekend. I'm grateful for being able to do these things, but it seems to get harder to recover from them the older I get. It didn't help that my sleep disorder was playing up, by Sunday night I had to go to bed about 9.30 or I'd have just crumpled. It's a good thing I wfh (actually on a really bad day it's wfb - work from bed #sheepish😄), but I've been too sedentary this week and I really want to get back to doing my short daily walks. I know there are times when it's best not to push though.

So true @ruethewhirl it's so frustrating being good! Also grateful for the thread.

I have been on the sofa all week trying to recharge my batteries - I overdid things and scared myself with how ill I felt.

Another calm day I hope. Buying some things online for grandson who will be 16 next week. His mum said he would like some new pants so I have been bemused by the choice, styles etc. Have sent an emergency text to DD asking for guidance! Boys' fashions are a complete mystery to me!

I have a 16 yr old boy TeaAndStrumpets I know what you mean. Mine tend to like the ones with some kind of logo on them - hope DD can advise!

I have the dental hygienist later this morning then back home, luckily she is just around the corner. Have just woken up, feeling pretty rough (as usual) will have a coffee and try and prepare.

@Orangesandlemons77 Yes don't want to make fashion faux pas! DD has just sent me pic of black m&s short type things so that helps. Already bought him some nice slippers and vouchers but it didn't seem much to unwrap.

I also have a dentist just up the road, it really is convenient. We have to pay for cleaning but NHS everything else. Younger DD has to come "home" to see the NHS dentist as there is nothing for adults in the city where she lives.

I managed to get rid of my bad neuro issues post covid in 10 to 12 months but it was a hard slog, everyday felt like 3 - what helped me personally were getting my Vit D and Vit B really high, magnesium spray when my legs were buzzing and chronic pins and needles in feet , half an hour a day religiously of wim hof breathing on the bed and lots of gentle stretching exercises - the beta blockers reduced my back of head and neck agony and the burning forehead too and at the advice of the neurologist I did 10 months gluten free as she said it can help bring down nervous inflammation in some people. I do think the breathing in particular and lack of gluten really helped , how I don’t know , but the neuro was correct . I can see compared to others I was lucky , it has left me with dry eyes and a bit of arthritis in neck but at 63 it’s possible they were ‘incoming’ anyway - I’ve also lost 3 stone

Sympathies to @Orangesandlemons77 it's really hard being around people who don't get it.

And commiserations to @TeaAndStrumpets, I'm on the sofa now after pushing myself too much this morning and now feeling nauseous. I don't learn either!

Had a blood test first which was fine, then took some washing to large machines so had about 30 mins just sitting in car after loading both machines.

Then called in at our local farm shop to get some bread for lunch and had a bit of a mooch around. Started feeling ill while queuing for tills and struggled getting back to car.

So disappointed as I really thought that I was getting so much better. I was only out of the house for 2.5 hours. I had been feeling so pleased with myself as I don't usually do more than one activity at a time (eg I'd go for a blood test and then come home to rest).

How normal is this? How much can you all do before needing to rest?

@BerfyTigot huge sympathies. It's always like this for me. I get carried away, and I try to add in a few extra things for efficiency. If only we had something like a radiation badge to show the danger!

BE WARNED, VERY LONG ANECDOTE!

Just to add, I was once hospitalised with exhaustion because I felt I couldn't stop going. Ended up on a drip and nearly missed DD1s wedding.

I had been rushing around like a mad thing, agreeing flowers etc. got a bad bout of IBS (stress of course) lost loads of weight. Just kept going. My wedding outfit hung on me and so I went to have it taken in. It then looked AWFUL so I had a mad dash round the shops trying to get something to replace it. Petite size needed which was the main problem, ended up getting a boring Viyella suit after I'd visited every shop/boutique in town. Went to bed with the full body twitches and DH called the GP who got a pulse reading of 160 + and had me admitted to hospital. I was in an isolation room because of my dodgy gut and I just lay there for two days. Got out the day before the wedding, missed my hair appointment. On the day I just sat on the sidelines watching the celebrations, couldn't eat the lovely meal they'd made just for me (allergies), crawled home and lay on the sofa for weeks.

And they ended up divorced!

Yesterday was our belated anniversary treat. We went to our local National Trust house and spent the morning pottering around the grounds, followed by lunch in the tearooms. On the way home, we called into the garden centre to pick up some compost and more violas. Tea was a boiled egg and then we caught up with The Traitors. We will always be one day behind as 9pm is too late for me!

Today I went to my local community allotment this morning for our Friday session. Followed by a post-lunch nap and cuppa in bed. DH is cooking tea and then it will be more Traitors.

Wishing everyone a restful weekend 💕

That sounds lovely @Swanhilde

It does sound utterly lovely, just my sort of thing.

DH has gone to scout camp, without our scout. I’m hoping I’ll be able to drop Ds1 to camp for the day after I drop ds2 to music centre.

the food shop comes tomorrow, normally dh puts it away, but ds2 will have to help me. He’s 10 and a very good boy.

Sunday ds2 wants to make a chocolate cake so he can take some in to school for his teacher on Monday.

I am feeling sad that I can’t manage to go out and enjoy an autumn walk, so contemplating taking ds2 for an autumn drive tomorrow. It’s all about working out what I can manage.

GP signed me off till 9th December, which is 3 weeks short of what I asked (surgery plus six weeks), but at least I don’t have to think about it for a while.

I’ve decided I am going to ask to drop to four days. I did it previously and then increased back to full time last summer. I’ve been knackered since. It wasn’t my choice, but was always supposed to be temporary, so shouldn’t be a big deal. I’ll take the Wednesday as my non working day, I find that works well for us and means I have a rest day.

@FurForksSake that sounds like a good plan. A midweek rest day makes so much sense. The chocolate cake also sounds like a good plan!

It took me a while to accept that I couldn't work my FT hours @FurForksSake And then my employer took it out of my hands completely by making me redundant!

But I have to say that my new job being three days is the best thing for me and gives me plenty of time to do things for myself and to rest too. I'm so much better all around ☺️

I’m still in my run of bad sleep which tends to come in waves. I’m averaging around 5 hours a night which isn’t enough and naps have gone out the window. I feel a bit more philosophical about it now as I seem to go through phases of weeks like this and then I revert to weeks where it’s ok but this has been an unusually long spell of crap sleep.

I still work though I wish I didn’t have to - I get quite grumpy probably because I’m tired - and I’m sure I’ll be fired at some point!

poor you @TeaAndStrumpets, I can just envisage that wedding situation!

Morning and hope everyone can have a restful weekend.
I had a sudden realisation yesterday that one of my HRT meds was changed to a different brand recently and wondered if that might be why my mood, anxiety and headaches have been so much worse for the last few weeks. I’ve filled in an online consult so will see if I can change that back and if that makes a difference. 🤞

I’m home alone this weekend as DH & DD at a uni open day. I was dreading it practically because DH has been cooking, walking the dog ect as I’ve been pretty much bed/ sofa bound lately. However I actually feel a tad better today, my efforts wirh diet for the last week might be helping but whatever it is I’ll take it!
I’m going to try and tidy my kitchen/ diner in stages today. It’s become very cluttered whilst I’ve been so rubbish so if I can just re set a bit I’ll feel better. I use a timer for short spells so I do a bit, rest a bit.
Also planning to get outside with the dog if I can even if we just play fetch from my chair in the garden. DH set my scooter up outside so may attempt to scoot over to the field with her later if I’m up to it.
Downloaded a new book on Kindle and looking forward to Strictly later so those are my sparks of joy to look forward to.
Currently still resting in bed with dippy dog resting on me which is a nice chilled start to the day 😊

Hello my lovely friends. It's the best day of the week again 🎉

I need to check in daily or I struggle to reply to everyone and get jumbled up (brain fog).

It's been such a busy week again with work. Had a rough day or two with stupid people being unpleasant...sooooo draining but the good people have made it better. I teams messaged one just to check in and she called me for a long chat because she said she could tell I wasn't ok. So so kind. I feel really grateful for the good people in my world.

My son is with his Dad so I had a nice lazy tea (treated myself to Waitrose bits) and early bed. Woke early (I seem to instantly switch on and it's awful. Like adrenaline or something) so I dozed with my audiobook for a while. Lost my place again now!

I just had a coffee and a pain au chocolate I will regret, in bed.

Need to do X3 huge bags of laundry. But my lovely friend is popping over to see me later. I've bought cake! I will rest after that.

I have so many things to watch, I can't get through it all! Celebrity Traitors brought me great joy this week.

DS has his gorgeous friend (girl but not girlfriend) coming for lunch and gaming tomorrow which will be lovely. She's a brilliant kid.

So that's my self centered bulletin.

I will re-read your posts now. Because want to see how you are doing.

Oh yes...and I e just treated myself to Mumsnet premium! If you have any sort of sensory issues, it's wonderful. No ads. Much calmer. Well worth it. 😊

That is my kind of celebration! How lovely.

Morning all, dogs and pups fed, washing up done. Having a cuppa. 2 puppy visits this afternoon but they were all bathed for yesterday's visit so hopefully can get away with a good wipe down! Difficult few days with MIL having no 2 accidents in bed and ran out of clean bedding. Going to have a look online and order more. More washing to do. Still need to dye hair, have a good inch of grey framing my face which looks ridiculous. I bought some of those rehab my hair oils but haven't even opened the box. No time or energy to do anything.
Glad more people are joining the thread, it's lovely to have a space for us. Have a good day everyone.

@BerfyTigot queuing is one of the worst things for me. I used visible so I know how much it uses. I bumped into a dear friend at the chemist who I haven't seen for a long time. It was wonderful to see her but I knew it would use a big chunk of my daily energy allowance (and it did ..I blew the budget). This was after a day at work too.

I think it really depends on the day, how much you can cope with but also pacing is not just a one day active, one day rest thing. If you can try and pace while doing stuff . It really does help. So out the house, I don't go out shopping very often at all but I always stop before doing that one last shop. I try and have a sit in a cafe half way through or a bench. If I go for a walk, I try and pick places with benches and stop frequently.

When I have had a very bad day ..pacing has involved stopping every 3 steps going upstairs and..the one I can laugh about but it's very sad .. I had to stop and rest peeling a satsuma one day. Couldn't manage it in one go!

Ohhh and in the spirit of small joys.... I'm just having a five min rest after trying to tidy up.... Got Alexa to play music I like and The Cult, She s
Sells Sanctuary has just come on. BANGER 🤘🏻

@Swanhilde we're watching Traitors a day late too, for the same reason! Nice to think someone else is watching at the same time 😁

Anyone else craving chocolate cake now? Love Mary Berry's chocolate fudge cake 😋

@Hotbeverageplease I also use a timer for chores - did it even before I got ill. Sometimes I just empty half a shelf of the dishwasher and then have a rest and do a bit more later. Helps me feel productive. Hope you're doing ok without your husband.

@MewithME I seem to spend ages trying to find my place in audiobooks that I've dozed off in! Don't worry about self-centered bulletins, I love hearing about what people are up to 😜