What are you up to today if you have a chronic illness? Thread 🧵 9 Summer's Coming

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5524497-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-8-plodding-on-gently

You know the rules...let's be tidy and fill number 8 up first 😁

Home from work (bit later than usual) and in bed with a cuppa and toasted fruit loaf. Although you've made my mouth water with your malt loaf talk @TeaAndStrumpets - good to know it's v low calorie 😆

End of my working week and I'm v glad. Slept much better last night so feeling slightly better today. Have been thinking that maybe 3 (!) pieces of delicious homemade flapjack at our shared lunch on Monday may have been just a bit too much sugar ... 🤤

DH is cooking pasta for tea and then I will try and stay awake for the England match ⚽

Have a restful evening all 💕

Grieving my old active hyper-independent life has been huge. I constantly forget that I can’t do everything, and the therapy I’ve had (just CBT) has really helped me to start feeling less angry with my current life.

My GP told me it was post-sepsis syndrome, (there’s info about it on the sepsis trust website) but from what I can gather it’s basically ME/CFS. I had no idea that sepsis could result in this, I left hospital and expected to get back to normal and got so frustrated that it wasn’t working. I’ve had to drastically reduce my work hours, and now have taken semi-retirement slightly early (one of the few ‘perks’ of working for the NHS for 25 years!)

I do have to be careful with my afternoon rest/nap, if I sleep for too long it makes it hard to fall asleep that night. I’m trialing magnesium at bedtime to see if that will help, I’ve tried CBD oil, but I don’t think it made a huge difference to how easily or how well I slept. I wake in the night due to joint pain and muscle spasms, so it doesn’t seem to matter what I do I never get a decent sleep and I’m always shattered.

Oh lm sorry to hear how stressful it’s been for DGS. He’s done so well to just sit the exams. I hope he can relax and wind down now they're over.
Did GP take bloods at all? My DD had something similar in the winter with palpitations that we thought was stress/ anxiety or maybe a panic attack as it first happened after a uni open day and then again around mocks. GP thought the same but after doing bloods It turned out she was severely anaemic.

Good luck to your daughter with the scales after the fruit loaf! 😊 I could eat a piece or two right now!

Spent two hours waiting for him to tell me I need to go back through my GP. USELESS

Thanks that is interesting. I'm not sure about bloods, although he looks white as a sheet maybe that's been thought about. Tummy ache too. I just felt so sorry for him drooping on my sofa all I could do was give him a big hug. I do wonder if it's like when you get a migraine once the stress has been removed?

Yes obviously DD1 will turn into a sylph after her cake based diet!! She's always lived on cake with no ill effects but she's getting middle aged now....

This sounds bad. What can you do next?

I’ll have to contact the GP

Walk in Dr said it’s X or Y

It’s definitely not X or Y as I’ve had both but he read my NHS app and thinks he knows better

I need an exam basically but due to my disability it’s very challenging for me even to have a smear. I don’t know what will happen next to be honest

It does make sense @TeaAndStrumpets Even pre illness I always used to cope with stressful events in the moment and then be unwell afterwards! Poor lad, at least he’s finished now.

Oh no @ValleyClouds how incredibly frustrating. 😕

How frustrating @ValleyClouds I hope someone can help. 💐

Random off topic announcement but I TRULY recommend you all the Pink Lemonade Magnums, delicious and summery, found them in Tesco last week

Not possible to be off topic on here. This is the kind of newsflash I appreciate 😁

Sorry you had a bit of a rough day though.

I have watched a LOT of tv today but have just been good and rung my Mum.

@ValleyClouds Sorry Dr was useless.

Pink lemonade magnums sound interesting. DD2 might be doing a Tesco run on Friday so I'll mention them 😊.

Morning all!

I had worrying news first thing this morning. 16 yo DGS continued to feel ill last night so DD1 drove him to A & E and he has been admitted. They're testing for various things but think it's Type 1 Diabetes. He's had some insulin and is feeling a lot better. Rather a shock. He looked so pale and wan yesterday. DD1 is feeling awful that she was fobbed off by the GP, but thank god her Mum instinct kicked in.

Off for a shower to calm down!

@BendyAndTired its hard having to grieve the live that you enjoyed and can no longer do. My therapist has been very good at getting me to try and work through reminiscing on the wonderful active things I've done, not focus on the further decline I'll have in the future but to focus on what I can do now. To take enjoyment in doing things but with adaptations. It's a very hard mindset going from someone who did half marathons to now with stage 4 cancer and fatigue. However sat here with aching thighs from doing squats the day before yesterday so still doing some things.

@TeaAndStrumpets gosh what a catalogue of events for him. It usually manifests a lot earlier than 16 so he's probably had it brewing for a while bless him. I don't think any of us would be mums if we didn't feel guilt from time to time. I accidentally gave DD peanut after a peanut allergy diagnosis. I was so upset with myself for so long afterwards.

Thanks I suspect you are right. He has been depressed and lethargic but he is an autistic teenager being chivvied through his gcses so you could see it as a stress thing. He's feeling much better in hospital, making sure his mum takes a photo showing his three drips and two cannulas!

Hey if you are in hospital you've got to milk the sympathy haha! Bless him hopefully he'll be right as rain soon and managing his condition as best as he can.

@TeaAndStrumpets gosh that must be a shock for all of you. I think it can be hard when teenagers have health issues in that way as they’re not always communicative or realise that something is off and as a mum, it’s hard to know what’s going on! Plus exams are incredibly stressful. Glad he’s in the right place though and hopefully he’ll start to feel a lot better.

I’m pretty wiped out today. Weve got an online shop that I’ll help sort but otherwise a quiet day.

Oh what would we do without online shopping! Is it just me or does it come round more quickly these days? Only seems like yesterday that I wrote the last list! It's changed our life so much. DH used to enjoy going to Lidl to look at their odds and ends like fake dremel tool accessories though, not the food.

I'm off to get tested for glasses tomorrow...usually I take weeks to decide on frames but with my limited energy I have resolved to be bold and decisive! I won't need them much really so it doesn't seem so crucial to make the right choice!

Envying @Oioiqueen 's buns of steel!

I think this loss of ‘living’ is a really difficult thing to explain to able bodied people. Especially as they see us on our good days and think we are always like that. I’m still
suffereng with the aches from
Tuesdays reformer Pilates. The irony that the exercise helps give my hypermobile joints an element of stability, whilst also causing soreness and fatigue. It’s a delicate balance.

@TeaAndStrumpets online shopping is a life saver isn’t it! Though I haven’t done one for a while as not really had the concentration so another goal ticked off the list. I did warn DH I was bound to forget something ( I did!) but he will often pop out to Lidl anyway. I used Ocado as I particularly wanted one M & S salad I liked and it wasn’t available 🙄 DD is a bit picky food wise so we often have the same menu or she’ll cook for herself. I saw a quiche I used to love so bought it for a change but she’s already mooching around the kitchen grumbling that she hates quiche 😂 so probably another day of 2 different dinners!

Good luck with choosing your frames tomorrow. It must make such a difference not needing them full time.

Busy morning here. DH has gone to collect DD from uni so I'm having an unusual solo day 😊

Starting by taking a coffee and going and feeding DS's cat as they are away. Then onto the opticians, which I thought would be a quick yearly check, but has turned into another appointment on Tuesday morning. He wanted to put drops in my eyes but I had driven and had no-one to collect me and the car! Oh well, DH can be my taxi on Tuesday 🚕

Anyway, I then dropped some things off at the charity shop, collected my prescription and mooched in the book shop. I haven't been into town for months so it was nice to be able do that ❤️

Back home now and in bed with a cuppa. No idea what time to expect DD and DH back so will have a peaceful afternoon ☕

Take it easy all 💕

Afternoon all, hope DGS feels much better now they know what's going on @TeaAndStrumpets

I'm off work and had planned my day around a house viewing this afternoon, but had it cancelled as the current tenant has "refused access" (which they are within their rights to do, but annoying it was on the day of...). Been doing a bit of clearing out of clothes instead and even embarked on Vinted for some stuff I think might sell.

Going to make myself a (decaf oat milk) iced coffee shortly and sit down to more house hunting 🙄

I'll try to avoid the Edna Everage look @TodayIsatrickyone !

That sounds like a pleasant day @Swanhilde

Annoying about the house viewing @martha79 either a) they've been too busy to tidy up or b) the house is so lovely they don't want to leave 😃