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.

Back from work, exhausted. I must stop walking up stairs! It's on my RAs to use the lift but I can't be bothered to wait when it's on the fifth floor. Just think one flight won't hurt and then I end up like this - in pain and done in ...

In bed now with a cuppa, DH cooking tea. Will take more painkillers later.

Back from hydro and picked the kids up from clubs. DH will have to make dinner, I’m utterly broken now.

Pain meds are a pain in the arse, I give up on them after a while. I’ve stopped gabapentin as it scared me. Still take naproxen and co codamol daily and oramorph when things are really bad. I’m trying to learn more about the psychology of pain but it’s hard to get my head into it.

regarding prescriptions, I can’t manage the pharmacy as it makes me so stressed and I can’t stand and wait. I use pharmacy to u and it has my pre payment on there. Very easy and it reminds me when I need a repeat. It’s just posted through the letterbox.

Glad we've got the flowers @Swanhilde and @FurForksSake . It must be so difficult to continue through the pain.

Oh, I'm loving the 💐 Thank you @TeaAndStrumpets 💕

Hi all, really struggling to remember everyone's posts but loved reading what I could. I am having trouble reading and processing at the moment. I have typed and deleted many times over the last couple of days because it was too hard to form sentences.

I'm on day 4 of ivabradine and it's amazing for my heart rate. My mood and appetite is shocking. Not hungry at all and feed extremely low. Maybe it's a side effect of the medication. If so I hope it passes.

Spending this evening trying to rest but I really have many adminy things to do which have piled up over the last 2 years. Many of you are inspiring me to just get into bed with a cup of tea!

Having a rubbish week unfortunately. Had my hair cut (at home) this morning then went for a swim. Came home feeling shaky and sick, been in bed all afternoon. Head is really sore and my face is seizing up (one of my symptoms, seems to get worse when I am tired).

I am supposed to be in the office tomorrow. Got a couple of nice face to face meetings which are supposed to be part of creating a support network. Sods law that I am feeling so low. Not sure whether to cancel or just tough it out and take the consequences. It's a really busy/stressful month and i can't really afford to take any time off (I know I might have to but ideally I'd rather pace my way through it)

Sorry I haven't really caught up with the recent posts but I will try to. Hope everyone is hanging in there.

Hi @Tiredandwired2 it is the perfect remedy!

We need teams of old school NHS tea ladies calling in with their trolleys...

I would vote for that!

I think it can be hard to keep up when there are lots of posts so nobody needs to feel bad about it. We get it. We're the tired, brain foggy friends so we can relax with each other I reckon.

It's nice having lots to catch up on though. Ups and downs.

I need to go have an Epsom salt bath. In pain just now. My knees are shocking. I must chase up my x ray results!

ECG 24 hour is next week now and they clarified I can take it off myself if it itches so I am feeling better about it.

Have a good sleep all. 😴 Or as good as we can manage at least.

@FurForksSake does cbt help with fatigue? Willing to give anything a go 🙏

At dad's again, coping with the insanity of Alzheimers.

@Greenvases I would also love a bungalow! If I'm trying to get to sleep, I fantasise about my dream bungalow 😂

@Orangesandlemons77 I have a buprenorphine patch (related to morphine) and GP seems happy to prescribe it for the last 3 years.

@TeaAndStrumpetsOmg yes! That would be amazing!

The cbt is specifically for anxiety and depression, today it was talking about mastery of motivation. Next week it’s behavioural activation. It’s hard because the reason I don’t do much is because of pain and fatigue but that then leads to low mood and anxiety.

Im hoping it will help me start doing more of the little things and appreciating that while some things might leave me in pain and tired they may be worth it, modifiable or I need to forgive myself for not doing it. Today I painted a crap picture. It took five minutes, I feel a bit better for having done it.

Behavioural activation is about breaking the low mood cycle, doing things even though you don’t feel like it.

I think I have to find ways of managing without it destroying my mental health. My hyper mobility syndrome / ehlers danlos means I’m always tired and in pain. The current hip injury is going to be fixed, but it won’t fix everything else. Work exhausts me, I’m so worried about going back at the end of December / January. Even with a phased return and hopefully going part time. I’ll try and plod on for the next few years but I can’t see me working beyond another few years.

Thanks for the info @FurForksSake hope it works for you

Woke up early so I've taken my once-a-month osteoporosis medication which I always do about the 14th or 15th of the month. It's a huge pill and I take several glasses of water with it. I hate taking big tablets...there's just that fear it will get stuck and eat through my upper GI tract (never happened!) Anyway sitting upright for an hour now so free to ramble!
Hope you are all OK today. My covid vax aches have subsided apart from sore ribs one side but that could be from something else. I have probably lifted something then forgotten, or slept funny.
We watched The Newsreader on iPlayer last night. It fascinates me how all the 80s costumes are now historical detail! I bet shoulderpads and big hair will be back some day, but I won't be joining in ;-)

Oh that's wonderful that he's walking home independently, how did it go??

Morning all, not TOO terrible of a sleep last night. Feeling sooo nervous today as we have a foster placement coming to us this afternoon, just 2 weeks of respite so a short one but we've not had a placement for 4 months so everyone send good vibes and crossed fingers our way please!

Morning all, @TeaAndStrumpets we were having very similar conversations about that show! And imagining someone in the 80s buying up all the props and putting them in a warehouse!

it’s a heat pad, feet up and pain killers day. I tidied the kitchen and got the dishwasher on. Kids are at school till 4.30, but eldest has a violin lesson I need to take him to after. Dh is not getting home till well after bed time. It’ll be a noodles and toast dinner!

ive taken half my supplements, moisturised my feet and face and brushed my hair, so that’s positive.

the cat is purring in my lap, always nice.

@Realisation14 all the positivity and vibes heading your way.

Thanks so much!

@FurForksSake You've already done loads if the kids are successfully out the door to school, the kitchen is tidied and the dishwasher loaded, moisturizer on and dinner planned! ❤️

@Realisation14 sending good vibes for your foster placement today.

Didn't have a good sleep at all here, awake at 4am and felt like I’d just nodded off when the alarm went off. I did go back to bed once DD was at school but the doggy needed to go outside so taken painkillers and relocated to the sofa. Very achy today too which might be due to flu jab yesterday or just the result of a rubbish night. Hard to tell sometimes! I deliberately didn’t do Covid jab at the same time so I wouldn’t react but may try and get it in a few weeks. Definitely not very productive here today but I had a wash, brushed hair and teeth and put a load of laundry in so go me!

Fingers crossed for you. Hope it goes well!

Actually, I'm now wondering if flu jab side effects are why I've been feeling a bit shit this week. I've been getting enough sleep on paper (just about), but have felt like a wet dishrag all week so far. Tbh though that's such a common occurrence it's hard to tell!

@ruethewhirl its incredibly hard to tell what the cause is sometimes isn’t it! I’ve actually finally had a couple of better days over the weekend, then today woke up feeling like I’d been hit by a bus!
I may just have overdone it whilst feeling a tad better, it could be a recent meditation change or it could be the flu jab!! Who knows?!
I did an online consult to get advice re the medication change as I think the brand change isn’t suiting me…. I’ve been given an appointment for 5 weeks time which very nearly made me cry tbh as it seems a long time to put up with awful side effects.

That does feel like a long time to put up with side effects :(

I’ve just had to pick up ds1 from school and cancel his violin lesson. Very tearful and sore after his procedure ten days ago. He is also hyper mobile and so I suspect his wound is going to be painful and slow to heal annoyingly. He’s got his giant hoodie blanket on and is eating noodles.

I bought some fluffy socks in the next sale and they arrived. I live in soft clothes / pyjamas and fluffy socks and these feel really nice and not too irritating. I hate seams and labels so clothing can be a pain!