What are you up to today if you have chronic illness? Thread 4

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5438353-what-are-you-up-to-today-if-you-have-chronic-illness-thread-3

This is the bumper Christmas issue with the added challenge of all the work Xmas brings and feelings it might bring up...but we're here. Highs and lows. 🌲🌲😴🤕🤗

Hi everyone

I was a bit of a newbie on the last thread but stopped posting as I was just feeling really sad and tired and didn't want to drag the thread down without being able to give anything back. I will try to keep up a bit more, even just reading what you are all doing helps me to feel like I am in the company of friends.

Things are a bit tough here. DH is my main support in day-to-day life but he has been mostly away from home as his dad is seriously ill. I know many of you live without a partner and I know how lucky I am normally to be able to lean on him (even if his cooking leaves a lot to be desired)

I don't have a fatigue diagnosis but after me struggling with it for 18 months and hoping it might get better (it hasn't), the GP has referred me to a fatigue support service. They have sent me a questionnaire to see whether I am suitable for their support. I am terrified of "failing" and being told they can't do anything for me. I know they can't fix it but just to have some advice and support would be huge. Please keep your fingers crossed for me!

@VikingNorthUtsire I hope the fatigue support people can help you. I don't think your GP would have referred you if he thought you didn't need it so you should look on it as an opportunity to ask for help. I think having to fill in a questionnaire is stressful and demoralising in itself but it's not a pass/fail situation, rather pointing them towards what help you DO need. They are there to help you, they are actually being paid to help you, so let them!

Anyway it's so nice to have you back with us. There are several new people on the thread and I feel bad that I haven't talked to everyone but I do remember you.

Your husband sounds great and you must be extra stressed on his behalf.

Home from work and in bed with a cuppa ☕

DS and GF are coming over when they finish as the annual Christmas tractor parade comes through our town tonight 🚜🚜🚜

DH has cooked a big pot of chilli so that will be lovely. Unfortunately, the nearest to our house the tractors come is too far for me to walk so I'll stay home in the warm. I have seen it in previous years and it's very pretty, and very long 🤣

Have a peaceful evening everyone 💕

Laid on my daughters sofa.. scrolling and watching Only fools and horses.
We ordered sandwiches from the local deli.
Im hoping for my new hip surgery in new year.. then when recovered will have my cervical spondylosis stenosis spine surgery.. suffering with osteoarthritis and Fibromyalgia will make recovery harder.. im also urge bladder incontinence with a prolapse.. so got that surgery to have too.. will come home from both first surgeries with a catheter.
Just felt really down today with pain insomnia... so came to daughters.
Luckily she has 3 toilets and one down stairs.
Wishing you all in pain a peaceful night with gentle hugs and healing thoughts.

I stupidly did some gardening - about an hour total. I now feel like I’ve run a marathon and in bed for an early night.

Hey @VikingNorthUtsire I remember you too and nice to see you back. I agree with tea& strummets I think it’s a positive that you’ve been referred to the fatigue clinic and I don’t think I’ve ever heard of anyone being turned away so try not to worry on that score. The questionnaire is just to give them a guide how best to support you. Sorry things are difficult right now and it must be difficult wirh your DH away and going through a tough time too.

@TeaAndStrumpets Glad your little granddaughter is on the mend, so horrible when they're little and unwell.

Awful night here last night, just could not sleep and realised at 3 am I’d forgotten the melatonin I usually take. Took it then but felt exhausted all day.
Trying to rest and let DH get on with sorting out our spare room ( DS & GF arrive Thurs) but he’s driving me slightly nuts tbh as it’s taking him ages!
He seems to have put a lot of stuff in it as he often sleeps there if we disturb each other so I’m rather annoyed it’s so messy when it’s not long since son visited. He keeps telling me to rest and leave him to it but not easy when I can hear him pottering about ( and sighing loudly!) Plus I’m frustrated I’m not up to helping I guess so that’s making me a bit snappy. Ah well, he’ll get there eventually!

Thanks @TeaAndStrumpets and @TodayIsatrickyone. Good to hear that you haven't heard of anyone getting turned away. I think I am just a bit desperate after being turned away by other medical professionals. I think I need to advocate for myself better in this coming year!

@ItsFridayIminLoveJS that sounds like a challenging prospect although I hope that the surgeries will bring a lot of benefits once you are recovered? It's lovely that you have been able to escape to your daughter's for some sofa and TV time 😊

@TodayIsatrickyone nothing worse than resting and listening to another person make a bit drama out of doing a job that you're not well enough to help with! just a huge old cocktail of annoyance and guilt and all sorts of other things mixed in. I hope DH has got it all sorted now.

@Swanhilde the tractors sound like fun but I think you are better where you are!

@ItsFridayIminLoveJS you have such a lot on your plate, it sounds like a lot of surgery but I hope you will be a new woman at the end of it! It's good that you can relax at your daughter's house, and bonus about the toilets!

@Sparklybutold it's so tempting to just do a bit in the garden! Hope you are soon recovered.

Thanks @TodayIsatrickyone I worry more for being so far away. I do feel helpless and so sorry for DD. Usually her DH is brilliant but he's been really ill too. It's always a concern as he is clinically extremely vulnerable. He had a home visit from the out of hours doctor for an anti emetic injection which seems to have helped. And the ddog is still at death's door!

Roll on Spring!

I've done amazingly well this week and surprised myself. I'm planning a couple of lazy days when DH is away at the weekend.

Today I got into town to have lunch with friends- only arranged yesterday and it was great. I won't be doing anything this evening though!

Sorry to be so bouncy to those who are struggling. Sending you all healing thoughts.

Viking good to see you back.

@FuzzyPuffling it must be all the singing!

I like this thread - can I join in occasionally (I’m not great at keeping up with threads!).

I am mid-50’s. Under active thyroid (around 25 years), pernicious anaemia (around 12 years) and ME/CFS (around 10 years). Pacing is definitely the name of the game here. I miss my old life. And would give anything to have just ONE morning of waking up feeling refreshed and bouncing with energy!

I have a couple of very good friends who are incredibly understanding re my limits for socialising. I’m very lucky to have them.

Great idea for a thread. I, too, love the regular weekend threads, but I feel knackered after reading them. I look forward to dipping in and out of here.

I like this thread - can I join in occasionally (I’m not great at keeping up with threads!).

I am mid-50’s. Under active thyroid (around 25 years), pernicious anaemia (around 12 years) and ME/CFS (around 10 years). Pacing is definitely the name of the game here. I miss my old life. And would give anything to have just ONE morning of waking up feeling refreshed and bouncing with energy!

I have a couple of very good friends who are incredibly understanding re my limits for socialising. I’m very lucky to have them.

Great idea for a thread. I, too, love the regular weekend threads, but I feel knackered after reading them. I look forward to dipping in and out of here.

No idea how that posted twice - great start!

Hoping for a quiet worry - free evening! It's our umpteenth wedding anniversary today so I've got some nice flowers to look at. No cards from DDs, they usually remember but they are both overwhelmed.

The postman called me Sweetheart yesterday, today I've been promoted to My Lovey! Wonder what I'll be tomorrow?

For those that have days where the thought of showering or washing your hair is exhausting, might be worth having a look at this site

https://nilaqua.co.uk

You can get the products from Amazon and Boots (am sure other places do them too). I wouldn’t use all the time, but definitely handy to have when your energy is better partly diverted elsewhere.

@LivingWithMEisPants you are doubly welcome!

Well it is supposed to be very good for you and its the one time of year I get to really get rip!
I might try loud soprano arias at other times. Will feedback...!

Happy anniversary TeaAndStrumpets. 😍

Thanks!

I did an opera breathing course put on by the ENO, referred by my LC clinic. There was singing in that and I learned lots of useful breathing techniques 👍

Here is a Christmas tractor for your pleasure - sent to me by DD 🎄🚜🎄🚜🎄🚜🎄

Love the Christmas tractor!

happy anniversary!

ive ended up in a lot of lot of pain this afternoon. Thankfully dh has finished work until new year so he can run the household.

Hey you. Don't worry about being a Debbie Downer. I've been there moaning to everyone...you've probably seen me!

We're here for you x

Hope no Debbies were offended there 🙈

@LivingWithMEisPants ...my brain fog is real. I read your post. And clocked that it's posted twice and then started reading your duplicate message...but still read it before thinking...oh yeah.... 🙈😆

@Swanhilde love the tractor. I haven't grown out of shouting TRACTOR as if DS is still 3 tears old! We have a Boxing Day tractor run here. Might try and go this year if I'm up to it. It's great fun.