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 😁

Thanks @CoffeeBeansGalore

Well I'm now rooting for Spain for the win, on the basis that a million years ago there was a very sweet Spanish boy on my A level course that I was quite taken with. So come on lads, win it for Andreas!!

Its very strange to think that he's probably a grandad by now.

Very late start in the Dingle house, we both slept right through to till 10, only woken up by DDog informing us that there was an imminent threat to home security from the postman.

Anyway, enough wittering, I am going to watch some rubbish on TV while I tackle a bit of ironing.

Morning all 😊 late one for me today only woke up at 10-30.

Gutted we lost but hey go it will be the euros soon!

Finally got my appointment at the chronic fatigue clinic yesterday. Met my consultant who is lovely and so understanding, they gently confirmed what I already knew which is I’m nowhere near ready for back to work and won’t be for a while and that I am pushing myself to hard to get back and will end up in a bad crash if I return before I am ready.

They are starting some education classes soon that I can attend with family and hopefully with the right support I can start to create a new life for myself.

@Dozymoo42 sounds positive. Glad consultant was nice.

It is such a lottery. I don't have a consultant or a clinic. I just have a GP who is vaguely useful if I need a letter. That's about it.

@Dozymoo42 I do hope it helps you and I'm glad it sound like they're giving good advice. It is hard to keep going and risky. What are the classes in? Sounds good.

I know I am very lucky even the clinic that we have they advise is so underfunded which is why they are going to do eduction classes so they can help more people as they do not have enough staff for 1-1 appointments. The consultant is the only one that covers the entire Greater Manchester area and I doubt I will see him often now but that’s fine I’m willing g to take whatever support I can get.

The classes are going to be on things like pacing etc it will be nice to meet up with other people who understand what it is like aswell.

I’m so sorry your area doesn’t have anything like this that can help you 😢

Hope the clinic classes are useful @Dozymoo42

I always forget to have a notebook by my bed - I do note things in my phone, but of course that means looking at my phone!

I'm now done with work until August.. just the small matter of moving house to get done. Have a friend coming tomorrow with a car to transport some bits, another friend visiting on Saturday (no car) to help pack, Sunday I'll be at the new place awaiting bed delivery, Monday I have booked the waste collection for the mountain of crap from here (why do I have two dead printers?), Tuesday yet another friend coming with car and to help build the bed.

@martha79 sounds like you are cracking on a treat!
When arr you hoping to be totally in?

Thank you lovely! Hope the big move runs smoothly 😊

I've got until the end of the month, and I suspect it's going to take that long!

Actually slept ok last night, but awake about 5am of course. Got my first session of the ENO Breathe programme today, then a friend coming over for a couple of car trips. She's hurt her back so we're not doing anything heavy - I've got a load of small boxes and bags packed, and then I think a supermarket trip to stock up the cupboards.

It will be so luxurious to get your new home unpacked and everything arranged the way you want it. Whenever we've moved we've spent weeks unpacking boxes! Definitely nice to have an overlap. Your friends sound lovely.

I keep getting texts and emails from DPD reminding me to collect my parcel from Argos and saying it will be returned to sender after tomorrow. (Actually collected a week ago!) I wonder if when the deadline passes the system will assume the phantom parcel has been returned, and maybe I'll get a refund? One can but hope.
DPD actually lost another delivery of mine last week, it sat in their depot for a week until the sender made a tremendous fuss and they found it. On a pallet, so hardly inconspicuous! Their website for inquiries is very confusing, I sent a query and I got sent a reply in Dutch with a case number, promising they'd get back to me. The delivery arrived two days ago, then yesterday I got a nice email in English saying terribly sorry they don't deal with UK inquiries. So why is their help button on the UK web site?? I'm sure it was the UK one because it was all in English with a Birmingham phone number. Baffling.

Anyway for whatever reason my stress levels are sky high, I'm just a wobbly twitchy mess. IBS terrible, glands sore, all my cfs/me symptoms coming out to play. Sometimes it does just happen, and if I've barely done much for ages due to the heat it seems bloody unfair! A very wise poster several threads back said I should remember that it's a fluctuating illness and that is so true. I forget, then get surprised when it comes back.

Anyway, hope you all have a lovely day! The weather is just gorgeous here, a very pleasant summer's day and not too hot.

DPD keeps spamming me with texts and I accidentally replied to one in error, hope they ignore but I bet they don't get many texts ending xxx

You might make their day sending kisses @TeaAndStrumpets

the weather today is lovely finally not too hot ! Just lied on the bed with doggo relaxing and I fear I feel a nap coming on 😊

have a lovely peaceful day everyone

Indeed! Good job it was a non embarrassing text too 😊

Too warm for me to today. A little gutted in a way that I've been off work all week and got nothing done because it's just too warm. Going to have to be determined and get the kids to help me next week. Always easier when they are in school though.

However the new fridge freezer was delivered today. Looking forward to moving everything back over into this evening. Thankfully we have an electric cool box for the fridge stuff and a big insulated one with millions of blocks in it for the frozen stuff.

Hope you all are having a pleasant day

Hooray for the new fridge freezer @Oioiqueen

I've started stocking mine up...

Morning all!

Delightfully cool here. My IBS pain is so bad this morning I just need my hot water bottle, so that is something. Nothing planned, yesterday I kept having to lie flat so today I intend to rest a lot.

Morning.
Oh dear @TeaAndStrumpets thar doesn't sound good. Hope it eases off for you soon.

Thanks I have been dismissing it and carrying on regardless but it is a sure sign of a crash, along with feeling faint if I stand for long. I sometimes think amnesia is a major symptom of cfs/me because every time I am stupidly surprised when I get in a crash. I mean, I could understand if I'd run a marathon or something but it's just little every day things that keep draining my battery until eventually it goes flat.

Morning all. I'm still blinking into awakeness but can't quite face getting up to fetch coffee yet.

@TeaAndStrumpets MEcfs is silly illness. There are so many symptoms and I have phases where I'll be troubled by one thing especially...and then not so much for a while so when it's back, I wonder what I'm doing differently. It's like a very bad orchestra with everything happening and random solos going off!

I have stomach pain at a low level most days but then I get IBS type symptoms off and on.

I think the single biggest factor that makes my symptoms worse is stress. I've been better the last couple of weeks once I got a big pile of work stress resolved.

I am finally on annual leave. It'll take my body a while to realise and relax I think. In a bit of pain this morning, ...it's quite ridiculous when I actually acknowledge what I'm feeling at any given moment.... headache, tinnitus, joint pain, buzzing, stomach pain, fatigue, muscle weakness.... That's just right now and I think I feel relatively ok this morning 😂

The trouble is the symptoms seem to travel around quite randomly. Sore eyes, joints, glands, toothache that moves around to different teeth! After a bad bout of IBS I get bladder pain but it's 'just' general inflammation and only lasts about 24 hours. I can put up with aches and pains but it's the faintness that stops me in my tracks. One major and embarrassing symptom is whole body jerking like a marionette on dropped strings, only when I am truly knackered and I've been getting that all week. So I should have realised.

Sounds rough just now @TeaAndStrumpets rest for you today! X

I just had a random nerve twitching in my buttock for the last 15 minutes. 🙈 What fun.

It's the gift that keeps on giving 😉