What are you up to today if you have a chronic illness? Thread 7

[MewithME]

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https://www.mumsnet.com/talk/_chat/5490534-thread-6-good-griefwhat-are-you-up-to-today-if-you-have-chronic-illness

Fill up last one first 😁

Sorry @FuzzyPuffling . It's really hard sometimes.You can only rest and do what you can

Can you get prescription delivered? My mum has this and it's brilliant. Might help a bit?

Thank you.

DH has his prescriptions delivered but hit the buffers when he once needed a one off. For some reason it had to go to the online dispenser, and took 5 days to be delivered, which wasn't good. If you need medicine, you need it ASAP. Hence I stick with the one down the road.

How is everyone this Tuesday? The sun is shining which is nice to see but at least it isn’t too warm, I don’t like warm weather

Doing Ok here, just having some coffee in bed (as usual!) have aqua aerobics at lunchtime so going to gear myself up for that. It is quite gentle.

In the afternoon the GP will ring about a referral to see someone about the gallstones next week. Will see how that goes.

Hoping for a good day for you all

@Gettingbysomehow so sorry to hear about the ex what a womble. It does play on my mind that DH may leave me when my cancer progresses. Although he has a chronic illness himself and I've had to pull up my socks when he has been hospitalised or whatever. I think it's made us stronger but you just don't know.

@bedfrog its OK to have all the feels and to let it out where you feel safe to do so. Pre cancer it took 5 years and a few losses to get DD. Whilst I'm not in your situation I do know how much it hurts watching everyone around you seem to just conceive.

@FuzzyPuffling that fatigue sounds so hard, hoping it lifts soon and you can be more youself.

Think I'm resolving myself to the fact that I'm going to need to give up work soon. I just can't seem to retain facts and now I'm without a laptop this week as it's had to go to I.T as I've done something to it. All whilst my workload keeps building after leave and two 4 day weeks. I just can't seem to cope with any change in plans and can't make decisions on the go. I've applied for a PIP form and the process of that will give me enough time to get back on top of work in the coming weeks and then I think ill have to re-evaluate. I feel sick however even thinking about giving up work.

Sorry the fatigue is so bad @FuzzyPuffling, it's so frustrating.

And sorry you're having to make that decision @Oioiqueen, it's a big change.

Just had my Long COVID clinic appointment (just over an hour, am exhausted!) - they were very thorough and friendly, and very clued-up in the nervous system side of things. You can only be put on one pathway to start with so I'm going with the mental health support one, as that felt with the most useful thing for now, so will get triage with the psychologist at some point soon. I can then do the other things (mindfulness, fatigue course, online then in person exercise) later. I am being given a shower seat though, after I mentioned I was sometimes sitting down on the floor of the shower.

Lovely sunny day here, going to do one of my regular online gentle yoga/ mindfulness sessions then get into the garden I think.

Thats amazing service and range of options.
I wish the same could be said of the rheumatology service...one 10 min appt every 16 months, and nothing to offer. I've been told that its my age or the weather. The lack of support makes me sadder than anything- I'm glad it's not so for everyone.

Morning all. Lovely & sunny here. Currently googling hand rails for the back door. I want to be able to get into my garden. Fed up of being stuck indoors on lovely days.

@Oioiqueen when you get your form, look for Charlie Anderson on Youtube. She's really clued up on filling them out & there may be a video which helps.

@FuzzyPuffling Sorry your fatigue is so bad. Your Rheumatology dept sounds useless.

@Orangesandlemons77 Can't beat a coffee in bed!

Its a large teaching hospital. You think it would be ok.

( I do have all the symptoms and very high biomarkers so they can't just dismiss me completely!)

It's absurd how different services are in different areas. A friend went to the Long COVID clinic in the neighbouring NHS area (they live 20 mins drive from me, but fall into the next region) and all they got was a series of appointments where someone read out PowerPoint slides to them and suggested they rest more.

Have just ordered a delivery from Pret as a small treat - had a huge craving for a (decaf, oat milk) iced latte!

I've just made a fruit and nut tea loaf. Full of apple, sunflower seeds, walnuts, almonds and raisins. It's good for when you can't be bothered to cook- better for me than chocolate!

Glad the appointment went well @martha79 Enjoy your latte!

Sorry things are tough just now @FuzzyPuffling lack of support is after a long wait is incredibly frustrating

@Oioiqueen sounds like a tough decision to make. It took me a long time and multiple failed returns to accept I wouldn't return to work but I still remember how hard accepting that decision was.

Enjoy aqua aerobics @Orangesandlemons77

Glad the sun is shining @JewelleryCat

@CoffeeBeansGalore rails sound a good plan and hope you can sort it very soon. Getting into the garden makes a huge difference I find.

Bit rubbish here. Fatigue is bad today. Got a 1 on visible and feeling it. I didn’t feel great yesterday but walked to the postbox as needed to send a card. I checked and it was exactly 800 steps in total but it was obviously too much.

Not helped either by noise from diggers on the field by my house. They look to be making a path which may be helpful long term (if it’s scooter friendly!) but dippy dog is a bit unsettled and keeps barking at the noise! So not exactly restful. DH has taken her out so hopefully she’ll be tired and settle soon!

@TodayIsatrickyone thank you. I used to love being out for a bit.

@martha79 ask for a shower stool with integral handles if possible. It's steadier when you get up.

@FuzzyPuffling that sounds delicious.

@TodayIsatrickyone thank you for your kind words re infertility. It's more lifestyle for us, all our families live in different countries to us and each other, my health condition, money etc. I need a lot of support and whilst DH does the vast majority on a regular basis, I wouldn't want to put more on him and risk him resenting me if I can't look after my own child. I can barely look after myself some days and Covid left me housebound for 4 months. My life isn't really set up for kids in any way. It's a shame and I'm still looking for ways around it - coming up empty though!! Diggers sound awful, sometimes if it's loud I'll double up earplugs and noise-cancelling headphones with birdsong or classical music playing through them. Rest up today!

@Gettingbysomehow what a disgusting man you were unfortunately married to - I'm so glad you're free of him now but so sorry you had to go through that

@FuzzyPuffling can relate about the fatigue. I'm ready for bed by lunchtime and nothing seems to work to alleviate it. I'm still off sick from work, no idea when I'll get back (and I wfh!!). Does it help if you don't walk places? I'm much better for that but then my mental health tanks as my favourite thing to do is walk in nature. BTW - have you got the recipe for that tea loaf? It sounds amazing.

@Oioiqueen thank you, and I'm sorry you had a rough time but so glad you have your DD now! I hope your PIP application goes well - I had CAB help with mine (ADP in Scotland) and they were fantastic, if you need assistance it's worth looking into them?

@martha79 I laughed at the Long Covid powerpoint! Imagine them treating any other illness like that?! It's madness.

Phew! What a catch-up.
I've been today for my migraine botox which ironically usually causes me a lot of pain while it settles. I had an awful night last night and managed 5.5h of sleep and I'm feeling wrecked today. My fitbit is yelling at me I've been 'training too hard' (you have to laugh, I walked around the block last night and that's the only thing I got out of bed to do) and to take it easy. Think I'll just go back to bed!!

Have a lovely Tuesday everyone, hope we're all being gentle on ourselves (as boring as that is) 💚🐸

@bedfrog
Tea loaf...its a bit make it up as you go along...

Cream together 3 oz of butter ( or buttery stuff, I used Benecol for the anti cholesterol effects) and 3 oz sugar.

Beat in 1 egg.

Add 8oz SR flour and a pinch of bicarb.

Add fruit and nuts. I just sling in what I've got or what I fancy...today it was a good handful of sunflower seeds, a chopped apple ( with skin) about 3 tbsp of halved almonds and quartered walnuts and a couple of tbsps of dried fruit, soaked in hot water.

Stir it all up, ( Add a little hot water if its too stiff) slap it in a greased and libed 2lb loaf tin.

In the oven at 180° for 35mins ish.

Eat. With butter on. And a cup of tea.

That sounds delicious @FuzzyPuffling I’ve just switched to benecol so good to hear it’s okay to use! I shall try that as soon as we get a working oven!

@bedfrog it’s still okay to feel sad that you don’t see kids in your future whatever the reasons for that. It sounds imminently sensible given your situation.
I already had my DS when ME/ CFS hit and had DD a few years later but I absolutely couldn’t have done it without a lot of support from DH, who was medically retired so at least home full time with my mum and in laws nearby. Even with the support network we had I look back at those years and wonder how on earth we did it sometimes!

I am home from work and aching all over, nose running and head pounding. I really need a good night's sleep 😔

Anyway I'm resting in bed with a cuppa and some smelly cheese and fruit 😋

DH is cooking fried eggs, chips and beans for tea and then it will be another early night 🥱

Take it easy everyone 💕

@FuzzyPufflingthanks! I will try it and hope it works with gluten free flour. Yum

@TodayIsatrickyoneyes I hear a lot that you can only really do it with a robust support network which i unfortunately don't have. It sounds like it was incredibly difficult for you but so nice to think you're out the other side now and can enjoy them!

@Swanhildei do hope you aren't coming down with something! I did laugh about the smelly cheese. It's a risky food to eat in bed hope you feel better after a good night's sleep!

@CoffeeBeansGalore thabks for the suggestion, I've made a note to check it out.

@bedfrog sorry I assumed it was intertility. However it's still OK for life to not be how you wanted it to be. In regards to PIP I saw my secondary nurse today and they can refer to Macmillan for help. I think I should be OK hopefully. I've been writing stuff down as and when it's come into my head and making a note of how many days it affects me and the what's it's like on the worst days. Fingers crossed.

Keeping my fingers crossed for you!

Morning all, hope everyone managed to sleep and can have a peaceful day.
Still in bed here but going to be a noisy one I think as diggers have started already on the field and at some point probably today looks like they will be right outside my bedroom window! We do have an option to go and camp out at MILs house as she’s away so can always do that if needs be as it’s quiet and peaceful there and she won’t mind. Otherwise as someone suggested it will be earplugs with headphones on top!
Still very sore, tired and achy today so will be mostly resting ( if noise allows!) reading or listening to an audio book. Currently listening to Sense and Sensibility after deciding to revisit some classics for the first time since A level English lit 40 years ago! It’s strangely soothing to listen to.

Morning all. Back to work today so of course I slept terribly last night - maybe there's a connection. Should be a reasonable sort of day though, not too hectic.

Typical @martha79 hope your day goes okay.

Blimey the diggers have reached us already, they're certainly cracking on with it! Luckily dippy dog isn’t reacting today, just giving dirty looks at having her morning snooze disturbed but not barking so as long as we keep her in til they’ve moved on, should be okay!

@TodayIsatrickyone have you tried loop earplugs? They don’t block the noise which is what you’re perhaps wanting but they do lessen the noise to make it more manageable