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.

@MewithME i see there is a dramatisation of Cemetery Road on soon, Mick Herron's private eye series. I loved the books, but they've cast Emma Thompson as the lead character which is so WRONG. I don't particularly like her as an actor, but I hope she proves me wrong! That's the trouble when you have an image of a fictional character in your head. Gary Oldman is so amazing in Slow Horses, so perfectly cast. Even the buildings look like the descriptions in the books.

Ah... I came to the books from the TV show. They've done a lovely job with the audiobooks too.

I saw the Cemetery Road trailer and thought it looked good. Didn't know it was Mick Herron. Emma T is someone who I have really liked in the past but I've got really irritated by recently. She's in a new thriller..Dead Winter and got good reviews I think so maybe it'll be fun 🤞🏻

Just having a sit after bagging X3 ikea bags of laundry. Where does it all come from? There's only two of us!

Yes two of us and mountains of laundry...it is never ending.

Morning all, hope you all ok.
First puppy visit later today and one tomorrow. Am useless at these as I can never remember anything! Brain goes blank with questions! DH is much more confident and capable. Have fed dogs, pups, changed MIL and put back to bed. Still to finish cleaning downstairs and puppies to bath. Then viewing pen set up, guest towel in downstairs loo etc. Arrgh. Can't believe how little stamina and energy I have, has taken 3 days to clean hall, utility, bathroom and other room downstairs.

@Stressybetty That sounds like a mountain of work! Well done, hope you find some lovely new families for the puppies.

Aw @Stressybetty ..I get it. I had an overnight guest in the summer which is very rare now and it took me all week to get ready. You have a lot on your plate.
Hope it's not too hard to say goodbye to pups!

I can only really cope with people 1:1 and then at lunchtimes, have a couple of old friends who understand that, recently had to cancel going to a family get together though they they (DH's family) didn't really get that, unfortunately but you can't please everyone.

It can be isolating can't it. I am grateful for being to chat online to those who do get it.

Been to the hospital this morning for ENT check up, they got rid of a lot of ear wax did a hearing test and told me the usual thing about tinnitus, (not a cure, not much can be done etc) but they are sending me for some kind of counselling or re-training about it and it was useful to get rid of the ear wax! (local GPs no longer do that and needs getting done privately)

It was a bit odd being at the hospital on a Sunday apparently they are doing more weekend clinics to get through the waiting list.

I have a bit of PTSD from times at the hospital so it was a bit stressful but I used it as a kind of way or confronting that in a less stressful situation that in the past.

Came back to find DS (16) has had crisps for breakfast and all the washing is still in the machine waiting to be hung out and dishes in the sink...no change there then.

Can I join you all please?

I have a serious diagnosed condition with various symptoms but have also been struck down by fatigue and brain fog in the last year. Been told it isn't a symptom of my condition and both the GP and the consultant say the other is best placed to help me. So no real idea what is causing this or what is the best approach to managing it.

This year has been such a steep learning curve. I take my hat off to anyone who has been living with chronic illness for a long time because I definitely had no idea just how bloody hard it is.

Trying to work things out for myself re pacing, diet, rest and all the rest. I've read both threads and there's so much here that sounds familiar!

Hey @VikingNorthUtsire . Sorry you're struggling with something on top of something that is already hard to deal with, but you're most welcome here..

@MewithME do you have any recommendations for your telescopic stool? I’ve been thinking of getting one!

Hello, can I join you? I have arthritis, hyper mobility, a damaged hip and degenerative disc disease. I’m constantly knackered and sore. I’m currently on long term sick leave waiting for an operation and hoping to get back to work in the new year. Work exhausts me, but it is what it is.

Today I’ve watched the gp and very little else, it’s been a high fatigue and very high pain day. I’ve managed two out of three of my physio exercises. I’ll plug myself into my tens machine after dinner, I am using it every evening at the moment. Not sure how good that is, but it’s where I am.

Tomorrkw my son is having a hospital procedure, so he’ll be at home with me for a couple of days to recover after. I’m hoping we can do some gentle crafting. I can’t sit in a chair for long so everything has to be fairly sofa based with my legs propped up.

@Orangesandlemons77 The times I have been most ill have all been caused by trying to be obliging to other people. Embarrassment, not wanting people to think I'm being anti social, reluctance to explain in case people think I am exaggerating my symptoms. My immediate family understands, that is the main thing for me.

I also have a fear of medical settings, a history of being fobbed off with debilitating gynae symptoms. I have to take my BP at home because it shoots up at the GP surgery.

Yes tinnitus here, you do get used to it. Sometimes mine sounds like a brass band in the distance, but I mostly tune it out. I've got NHS hearing aids but unfortunately they make my tinnitus seem worse so they sit in a drawer. I must get some more eventually.

Crisps for breakfast...your boy is living the dream!

@ChampagneRose I got one like this. Fits in a small rucksack or big handbag! https://amzn.eu/d/4DCAEUQ

Everyone was envious on holiday when the benches were all full!

@FurForksSake good username! Pain is really hard to deal with. My doctor helpfully tells me that pain isn't really an MEcfs thing..but then she also calls it fibro-y-chronic fatigue type of thing 🙄

Welcome @VikingNorthUtsire this a lovely supportive thread, I am so grateful to @MewithME for starting it.

I am sorry you are suffering with fatigue, hopefully you will get better at pacing. It sounds as if you have a good grasp of the principles. Unfortunately it's easy to get a bit cocky when you've had a few good days...you must resist the urge to rush round spring cleaning or whatever, that's a sure way to go back downhill.

I have been busy for three days on the trot, the total activity level would seem hardly anything for a normal person. I am now crashed out on the sofa feeling weak and wobbly. I am terrible at taking my own advice!

Oh this sounds hard @FurForksSake I hope all goes well with your son's op, and of course yours later on. How miserable to be in pain. The tens machine must be a godsend.

Crafting sounds good, Halloween and Christmas aren't far off so you could make some fun things. Hope you have a good week.

@TeaAndStrumpets thank you. I saw someone upthread describing it as stepping on a rake and getting hit in the face, except it hits you about three days later. I'm trying to learn to stop before I feel tired, but it's hard. I am working but trying to negotiate dropping my hours.

@FurForksSake I hope all goes well for your son tomorrow.

Oh wow, this looks amazing. I have spent too many hours recently sitting on filthy pavements or shop floors when I've overestimated my ability to walk around places.

Is it easy to put up and down? My hands are pretty weak ATM.

It's got a bit of a knack to it. I struggle now and again when I can't remember how but it doesn't really take strength. I think it's a twist and pull action or something.

A day of cooking and sleeping. Chutney finally done and a spag bol for tea. DH once again chief chopper.

I have a 'sit stick'. Useful for walking but fab for being able to rest and take the weight off my legs whenever I need to. Bit of a mental shift to accept that I needed to use a walking stick to begin with but now I wouldn't leave home without it

It's called a Flipstick - https://www.walkingsticks.co.uk/flipstick-original-seat-walking-stick-green.html

@FurForksSake I'd love to see some crafting pics if you get any done!

Last few days have been hard with strong pain and fatigue (no shocking sleeps been awful) terrible anxiety. I keep trying I really do.

@Swanhilde I have a similar tripod style one from Amazon that’s handy. I’ve had to accept using a mobility scooter for distances, that def took me several years to accept I needed it but the first time I used it and didn’t crash for a week afterwards, I wished I’d done it sooner!

@Realisation14 sorry you’re struggling. It’s so hard isn’t it, I’m similar to you at the minute. Just had a really rubbish few days and my sleep has been awful too so it just feels like a vicious circle of pain and fatigue. My anxiety is high too, which I’m guessing I’m maybe using adrenaline to get through the basics so it’s all linked.

Been feeling really sorry for myself this weekend, have barely left the house recently apart from a couple of short walks around the corner with the dog which then set me back again and living such a limited life seems to be really getting to me despite it being my 20 th year of ME.

So this morning I’ve woken after another rubbish night determined to focus on what I can change. I’m going to try and eat low carb/ keto again as that has helped my energy somewhat in the past, it’s just difficult to stick to long term. I’m going to try regular meditations to help with this anxiety that’s spring up from nowhere and try and find a small positive each day to somehow lift this low mood.

Hope everyone can have a better week and be kind to yourself today.

Morning @Hotbeverageplease I’m sorry things feel and are so hard. Disability and chronic illness is definitely a long period of grieving. And with grief it can bubble up when we least expect it.

I also had a rubbish night, but I’ve managed a shower which is good (not frequent enough) but I’m now wiped and in pain.

Today son is having a dubious mole removed, he’s 12 and very worried about it. DH will take him as it’s too much for me.

Thanks for the kind words @FurForksSake it definitely bubbles up when we least expect it.
Well done on your shower but sorry you’re wiped out now. I also managed a shower today so that’s my positive for the day and I’m now recovering on the sofa with my little dog who is happy to have cuddles.

I hope it goes smoothly for your son today and he can feel better once the procedure is over with.

On the sofa after a busy few days and too much adrenaline.

I just noticed my Peace Lily has keeled over into a sad limp mess. It looks how I feel, but if I dump it in the sink and run some water through it geneally stands up again. If only something like that worked for me!

I have actually kept it alive since May. I am not a bit green fingered so my DD1 got me some easy plants when our house went on the market. The trick to presenting a house for sale is to pretend nobody lives there, and helping get it clean and tidy well-nigh killed me. I am now hoping for no viewings until after Christmas, it's just too much stress.

Hope you are all coping this week!