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 😁

Morning all!

24.5° in my sitting room, I've even put a thin dressing gown on!

Not much happening today. I'm still waiting a response about my missing DPD delivery, although I have a case number now! Their online update system seems to be a work of fiction. The sender has been away but back now to prod them at his end. I hate waiting in for deliveries when it's hot, I can't stay in my nighty all day!

Morning

just having brekkie

Morning All, waiting for the postman to pick up an Amazon return. Its very convenient, I must say I really like it. Saves me going to the Co Op to drop it off, and so also saves me money because I am bound to buy something as well. Probably chocolate.

Its all quite serene in the dingle household, DH is pottering in the garden, Ddog is on guard duty in the kitchen door way, keeping an eye on both me and the back door, and I am sipping a second cup of coffee.

No plans other than feeding ourselves, and to keep breathing. I might do a bit of sewing later on.

Hope you all have a peaceful day. xx

Quiet here too. Had a massage yesterday, which was lovely but has completely knocked me out 😴

Nothing planned for today, just preparing for DD's graduation tomorrow. It's going to be a long, hot day of travelling and walking but it will also be amazing. So proud of her ☺️

The temp has dropped to the mid 20s here and I don't like it - I'm back to wearing fleece jumpers. Have realised that I am definitely a reptile 🦎

Morning, I'm working today but it's pretty quiet. Waiting in for deliveries again too - had a very cheerful chap from Argos at 8am! And a bit more packing.

Morning all. Chemo day today, last chemo for now as I'm just staying on the immunotherapy for the foreseeable. Still have to go to the chemo unit for it but my case has been taken to management to see if I can get the injection version which will be quicker and less frequent. Sooo I'm pottering this morning and hoping my GP surgery are quick at doing my sick note so I can get it sent to work and switch off for however long I get it for.

We've also ordered a new fridge freezer after all our talk here last week. No idea when it'll be delivered so trying to eat down everything. I need to order a delivery food shop and no idea what to put on it. I'm pretty good at making pasta sauce from scratch or lentil dahl kind of thing. Any ideas that aren't beans and toast we can live off that don't involve taking up much space in the fridge or freezer are welcomed haha! Whilst we have a few cool boxes the less I have to move on the day is ideal.

@Oioiqueen all I can think of is baked potatoes! A few cans of chickpeas or similar could be handy. Things like cheese and salad can sit in a cardboard box wrapped in a duvet if your coolbox is small.
I'm glad you are getting more flexibility with your treatment, and hope there isn't any hassle with your sick note. 💐

A bit cooler for packing, thank goodness!

@swanhilde Congrats to your daughter, you will have a super day. I think having to talk while having a treatment is more tiring than anything, but a massage sounds lovely.

@danglethedingle It was a revelation when I discovered the Amazon pick up service! I know they are evil but they have very good customer service!

@TeaAndStrumpets baked potatoes isn't a bad shout thank you. They've since messaged saying it'll be delivered Friday. No idea how long these things have to sit switched on before you can use them though.

I was told four hours.

I think it's just to allow the coolant to settle after being disturbed.

Quiet day here too, resting this morning as I have a follow up call with the CFS clinic this afternoon. DS had to go in to have some tests on the bowel so DH took him this morning, poor thing. Hope he manages OK.

Not sure what to say to the clinic lady really. I'll see what she asks me. I have found some of the course helpful but it hasn't improved things really. Although it was more about managing / pacing and acceptance really.

Oh I'm my own worst enemy. I still say "I'm fine" when asked, because I only meet people when I'm actually able to leave the house! I almost downplay it to avoid awkwardness, don't share the toll taken by my using up spoons, want to prevent pity/embarrassment/unhelpful suggestions. I mention it to medics of course. Presumably you can be frank with the clinic lady!

Hope your DS gets on OK today, good he has moral support.

@Orangesandlemons77 I think in a medical/pastoral setting actually be honest.
I'm similar to @TeaAndStrumpets . I rarely get out but on the phone just say yes, fine thank you. Or if it's someone I know a bit better I'll say up and down but ok. There's very few people who actually want to know the full truth, that I can have a whinge and then a laugh with. That it's bloody hard and life is pretty boring. And I desperately want to get out & have some fun. I don't want to be pitied. I can say it here as it's anonymous. But in real life, honestly most people don't need or want to know.

I feel bad when old friends get 'worse' illnesses, like I'm better off in my own shoes and shouldn't grumble. I don't tell my friend how I'm feeling because she's had three different cancers and 5 years of horrible treatment. I'm delighted that she can pick herself up and get out and enjoy life, but sad that I can't see her as often as I would like because it's too far to travel. Lots of emails and photos are a help of course, but I always turn down invitations.

I suppose we all learn to get on with things.

Sorry having a rant now! Feel free to ignore.

Another loss with cfs is not having the energy to go shopping, not just for fun but for important things. I'm trying to choose flooring and tiles for our new house, and every sample I've sent for is more unsuitable than the last! I just don't have any flair for it. So it's been weeks of back and forth, finding something that looks nice online, thinking I've cracked it, then the samples arrive and they are just wrong. I really need to go to a tile showroom and walk round for a couple of hours, but I just can't do it.

I could put this in the Decorating topic but I doubt anyone would understand where I'm coming from! (Don't get me started on curtains...maybe some sheets at the windows for a few months 🤔)

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Sorry. Overshared & possibly outing. Edited to delete.

@TeaAndStrumpets okay, possibly daft suggestion. Is there any company that would come out to you with a good range of samples?

"D"h hasn't been very supportive recently, tired & snappy. He's "fatigued". No kidding matey. Try living in my body.
At first he was brilliant. Couldn't ask for more. Now I think he's fed up having a wife with health issues.
An appt last wk I was told my condition is more complex & unusual than originally diagnosed. So my mobility is unlikely to improve as much as we'd hoped.
None of us know the future but this has made mine even more uncertain.
There was no sympathy, empathy. Almost dismissive. I don't want OTT oh my god you poor thing!!!!
But a bit of compassion and an uplifting chat on the way home would have been nice. It was mainly silence.
I'm floundering as he's never been like this.
There's stress with a (self inflicted by mate) situation and he's spending a lot of time with him. It should resolve one way or another over the next month. But as I can't stand mate, don't offer sympathy & don't mention it I'm in the dog house.
I just hope he gets over it & back to normal soon.

Not sure really, I think I'm OK for flooring as luckily the first sample was quite nice. It's just the bathroom tiles that I'm struggling with. Maybe if I take a stool with me I can sit down to look at things. Take a daughter maybe. DH is less than useless. He is very quick to say what he doesn't like! I just feel we are spending all our money on a nice house and I don't want to spoil it.

Thanks for listening to my rant!

Oh god I'm forever over-sharing and having to delete!

@TeaAndStrumpets Another suggestion. Some shopping centres/retail parks have mobility scooters you can hire by the hour. Would that be an option?

Not a bad idea thank you.

PS sorry your DH is being a bit off. I sometimes honestly think the male is a different lifeform. If he's generally a good egg he'll return to form. Badly timed though! Make sure your doghouse is comfy and luxurious 😉

@TeaAndStrumpets Thank you.