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 😊

Morning all!

Awake at 3am again, couldn't get back to sleep, finally got up at 4.15. I'll just be zombified today!

Hope you all have a good day.

Morning all.
I've been reading you all, and am catching up.
Christmas- can't think about that until all the October birthdays are over. It's fairly low key here, presents wise. As all-ywsd-roubd Christians the faith aspect is really important to us, and yes, we do presents, food and family, but not to excess. Agree with the bemusement around Christmas Eve boxes, That Bloody Elf, expensive Advent calendars etc.

We actually do Advent as a season of spiritual preparation (which sounds nobby!), about reflection and quiet.

Anyway, today DH has two hospital appointments, including an x ray guided steroid injection ( the one in the other side worked!) . I shall make some soup!

Glad the first injection worked for your DH, that sounds hopeful.

Yes it's soup weather!

Sorry my typing is super-awful today. I managed to cut my typing finger and now I can only do Gibberish.

Day at home today. Am trying something new I saw on Instagram, bit of kitchen chemistry meets art! Need sunshine too, which I have at the moment, it's a beautiful morning ☀️

Wish me luck - should have tried it during the heatwave 🤣

Kettle's on ...

I'm SO disappointed - I thought you had founded a new religion!

Tried to have a shower but by the time I'd climbed the stairs I felt awful and I just came down again. Back to the endless pacing!

@MewithME are you transferable between industries at all? Sometimes that can make a difference in terms of mental load.

@TeaAndStrumpets gosh that would do my head in having constant flashing lights. Luckily we face side onto two neighbours houses so it's not like our lights (the small amount we have) bothers anyone.

I've had an issue with my toe locking up on one of my feet. It only does it when I've not moved for a while. Last night was particularly bad and painful I ended up going up the stairs on my bum laughing, crying and trying not to wake the kids up. Have to say I'm not sure whether DH was concerned or bemused. I think it's immunotherapy related, it hasn't done it for a couple of weeks. Next time it does it I'll try heat, cold and/or movement and see if that helps. I probably should mention it but I'm terrified of my treatment changing. I need to put my big girl pants on really. I have a scan end of October and next results in November, I want to hold on for that really but guess if it gets worse I'll have to sort it.

That's annoying. Is it like a cramp where the toe pushes straight out and won't bend? I get that when I'm shattered and it really hurts. All I can do is pull it backwards or push down on the floor. I once had it during a reflexology session - I think sometimes the foot objects to being put in certain positions. Maybe it's worth some magnesium spray?

Morning everyone, I've changed my user name slightly because my old account seems to have fallen off the mumsnet database. So after a fruitless 30 minutes trying to get it back, I thought sod it, and made a new account.

Sciatica is slightly better, but my shoulder has decided to join in now. Its all fun and games. Ddog is on guarding mum duty, which is lovely, except he is a bloody great trip hazard. I don't know what I have done to deserve such devotion.

We are off on a short break on Friday, so I am hoping the nice Autumn carries on a while longer.

@danglethedingle you have come up for me, also @danglythedingle so maybe you can be both? A short break sounds very nice!

Yesterday I realised I was wearing odd socks. Today I am deliberately wearing the other odd socks, tomorrow I should be back on track!

I was browsing youtube and found an Australian guy who has made a lot of videos about ME/cfs. He recommends resting during PEM, may take a month (or more for me!) then if you feel better, after a week of "normal" life you should rest again for another month etc etc. This gives the nervous system a chance to calm down and reset.

So basically pacing while you feel well. I can sort of see the logic, but how feasible it is in normal life I don't know. He says if our nervous system is calm then the energy will appear eventually. Interesting.

One thing that struck me looking at his whiteboard of things that hinder recovery he notes perfectionism. This is me all over, and often drives me into a crash when I am hell bent on doing something right ....I will carry on until I feel ill.

Food for thought. Recently I've had so much to plan and decide and it's really used a lot of mental energy. So it's not always the physical stuff.

@TeaAndStrumpets Yes similar symptoms to that but I have to be careful what I take or use. I'll speak with them at some point. I'm just hoping that they'll say it's a form of arthritis due to the swelling of joints caused by immunotherapy. It doesn't affect my balance or mobility. It's been a bit sore today but I only notice it when I'm not in footwear.

Morning, Just caught up with you all.

Yes pacing while you feel well makes absolute sense, I’ve read similar theories and I do I kind of try but I think it’s so difficult to do. Mainly as during a crash, things build up so once I’m feeling a bit better, there’s an element of catch up of things that I didn’t do whilst in a crash. Plus the wanting to do the nicer things like meet a friend or go out for a coffee when I’m able as that boosts my mood but then the PEM kicks in again. Easy to see how we get into a boom/ bust cycle. It’s all about balance I guess but hard when life gets in the way!

Still struggling with pain here but got the steroid injection to try tomorrow at least which has been getting me through.

DH is a bit more mobile after resting his ankle for a few days so that’s a relief. Still hobbling but got a support from Amazon which has helped. He managed to drive yesterday, so we took dippy dog to the dog field for an hour which was relaxing and wore her out after a few days of just garden walks with me! It’s in a forest setting and she just adores it there. Benches for us so we sat with the merlin app for a while and even managed to spot a woodpecker!
Called in on MIL for a cuppa on the way home so I was pretty shattered last night.

So a quiet day today.
I think I might need coffee if the kettle is on @Swanhilde cant quite get going today!

@TodayIsabetterone wow a woodpecker, I'd love to see one in the wild so to hear one is amazing. I walk through a country park on my way to the hospital. I use the app and once it pinged up with a tree creeper, I looked to my side as I saw something out of the corner of my eye. I saw it actually pulling itself up and down the tree, I was in absolute awe of it. I wouldn't have noticed it had I not stopped and was listening to what the app was picking up it was tiny. Everytime I walk past that tree now I try and look for it

That sounds lovely @Oioiqueen i don’t think I’ve ever had a tree creeper ping either!
Same happened with the woodpecker, we could hear it when the app pinged and then kept looking til we spotted it pecking away!

There was some laughter when I spotted it first and was trying to describe where it was. DH is still shaking his head at my description of ‘ it’s on the tall tree over there!’ when we were sitting surrounded by tall trees! Sarcastic so and so replied… ‘ what the brown one?!’ 😂

@Oioiqueen our garden is full of magpies recently for some reason. They travel in a group of six so we haven't reached Seven for a Secret yet! We keep seeing a solitary Jay, too.

@TodayIsabetterone yes it's impossible to rest 100% of the time and there is always a mental to do list building up! I know I am my own worst enemy for this because I do a lot of planning and researching while I'm stuck on the sofa too exhausted to do anything physical. My brain never calms down.

I really hope your injection helps you, so fingers crossed!

😂

Yes I’m absolutely the same @TeaAndStrumpets Brain always whizzing around! I find it difficult not to be doing something useful so make a lot of lists/ plans/ goals which really isn’t resting!
I do use a meditation app sometimes for that very reason but probably should do it more!

Edited to add that we’re the same with magpies recently! They're taking over! Quite noisy too.

Afternoon all.
@TodayIsabetterone good luck with the injection & glad Mr T is slowly improving.

I must look into this Merlin app. I hear a lot of birds & it would be interesting to know what I'm hearing. There is a big wooded area on the edge of the village so plenty of birds.
Does it work indoors if the bird is loud? I can stand at the back door but can't physically get out.

We just saw a squirrel lunge at a magpie walking around. The magpie's two mates came to object and there's a bit of a stand off at the moment!

@CoffeeBeansGalore yes it'll pick up from there. I often hold my phone out of the window which works well too.

I think it might pick them up from the back door if they’re loud @CoffeeBeansGalore especially if it’s early morning or a time they’re particularly vocal!
I’ve placed it on my window sill and left it to record for 5 minutes before now if I’m stuck in bed and can hear the birds through the window and it’s picked up! It’s fascinating to find out what you can hear! Can you tell I’m a Merlin app fan 😂

Oh heck! It’s all kicking off in your garden today! 😂

Bit of bovver.

Hi all.

Treecreepers are brilliant little birds. We used to see them in the park and nuthatches. DS had a little bird book when he was 2-3 years old. He could recognise them and shout their names out. (Early indicator of autistic interest I think!). That little book was always in his hand. So sweet.

We went to the arboretum one day. It's family run and the old man who started the place met DS when he was doing his bird spotting. He was absolutely blown away. Such a sweet memory. This old chap chatted to him for ages.

My mum gets a woodpecker on the telegraph pole next to her garden. They're great to watch.

I saw a red kite and a kestrel just driving home today...right over the dual carriageway!