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

[MewithME]

I do like the What are you doing today thread. But as someone with an energy limiting illness, I find myself marvelling at the level of activity that is beyond me.

Sometimes I feel sad about it even after accepting my illness for a few years now.

My week at work has been brutal and I'm feeling very weak and worn down. I am trying to find some inner peace.

This morning I managed a bath and ds helped when shopping arrived. I sat in the garden for a little while but newish neighbours were playing loud music which I found a bit stressful.

I've managed to put a wash on and made some lunch for us. I'm now in bed listening to some music festival in town floating on the breeze. There's sirens going off, so hope nothing bad has happened to anyone.

I'm going to lie down for a couple of hours. Hoping to watch a film with DS later. Pizza for dinner.

I found a nice new podcast called Shedunnit with lots of Agatha Christie in it which is up my street.

I may just lay here and listen to that for a while.

So if you have ME or LC or fibro or anything else that is a flipping funsucker of a thing to deal with, do share your little things. Our world is smaller but we are here.

I will add I know there are those worse off than I am, but not matter what we deal with, chronic illness is hard and it's hard to feel part of the world.

Glad to be of help!

Sorry to hear about your dog. Ours is a newish rescue and our first dog but I wouldn't be without her. Do you think you'll get another!

I’m also relieved that it’s nearly the weekend. It’s been a tough week for me this week and the heat doesn’t help.

because I’m still working I can’t do anything else like read or puzzles as I just don’t have the brain capacity - it gives me PEM so life is pretty boring. Nor can I walk the dog which is one of the biggest things I miss!

looking forward to a quiet restful weekend and I hope you all have the same!

Aw how lovely, they're amazing company and I think more so when you’re stuck at home a lot. We’ve always had dogs but actually lost two in the last year and it’s honestly just been heartbreaking one so quickly after the other. So I feel we all probably just need a bit of time still.

That said we have started to look at rescues recently and I want them all! Im away to visit my eldest in July but once home, it could well feel like the right time to look more seriously by then.

Sorry it’s been a tough week and I can totally understand that work just uses up every single bit of energy, that must be so hard.

I totally understand about missing dog walking too as I’ve been there many times too.

However I could occasionally manage a short potter in better spells but only with a dog as slow as me but boy did I appreciate those moments!
Wishing you a peaceful weekend 😊

Sorry about your dog, @Hotbeverageplease . It can take time to be ready to get another one. In our house, even though I'm probably the biggest dog lover, I'm still not ready to take the plunge, and I actively enjoy not having to get up for walkies at silly o' clock, and spending the rest of the morning trying to catch up with myself. Not sure I want the responsibility any more.

I had a hospital appointment at 0830 this morning. It's a 4-weekly infusion of a bone-strengthening drug. I'm still feeling very run down at the end of a heavy cold so would have loved to have stayed in bed for another hour, but I dragged myself down there, only to be told that the prescription wasn't done. When the nurse still hasn't managed to track down a doctor after 2 hours they finally sent me home, so I need to go back for it next week. Really frustrating.

I came home and went back to bed. I've just got up and had lunch with DH, a quick phone chat with DM and a message from BF to say she's got the job she interviewed for yesterday so I'm thrilled for her. I'm about to list a few things on Vinted and hy the time that's done the DC will be home from school so I'll be spending a bit of time with them, cooking dinner and watching the next episode or 2 of Wednesday.

@BodysBroken thats so frustrating re the hospital! Good news about your friends new job though and enjoy tv time with the kids.

@TheodoraCrumpet I hear you re being ready to take the plunge with another dog. It’s got to be right and for everyone in the house I feel.

God Almighty, @BodysBroken , I'd have been so pissed off with that that the staff might have been subjected to angry snottery tears, and they probably would have had me banned. Kudos for any reaction uphill from that. I don't know how far away your hospital is, but some days getting anywhere by 8:30 is no mean feat. And then to find it was for nothing...

I've got my PIP decision and they want to review me again in a year (well it says 2 yrs but I know they start the year before) and I have written a long (depressing) MR letter thing pointing out their mistakes (lies) and sent it off.

It is very hot outside and humid, not pleasant. mainly been in bed and drinking too much coffee. Feeling cross about PIP and how sneaky they are (they have reduced my points too so if these new rules come in I won't qualify anymore) but tried my best to be polite in the letter. Not easy at times!

@Hotbeveragepleasesorry to hear about your dog. It’s amazing how much of a companion they become to you and leave such a hole when they are gone!

@Orangesandlemons77is the pip decision the one you were hoping for?

I haven’t applied yet but I’m wondering if I should for my physical issues (though I have no one medical that believes me which would be an issue I expect!).

Good morning all.

Well, terrible habit I seem to be getting into on a weekend. Woke at 6am then dozed back off with my audiobook on to tame my silly brain. Woke back up at 10.30.

Now still blinking my way to awake.

Ds is with his father. He made me fuming yesterday because he's booked a holiday without any discussion on his next scheduled weekend when I tentatively was hoping to go see my mother. It's a long, long way and if I didn't have Ds, it would be so much more doable. Ds is autistic so I have to not only pack for him but consider all his needs too. He has a school trip on the Monday. I'm so upset about it. I haven't seen my mum for months. 😢 My exh is awful unfortunately.

So I ended up having wine last night with my lovely friend but that meant I didn't sleep too well ...and here I am 11am and haven't moved yet.

I have no ambitions for today at all. I feel totally apathetic.

@ChampagneRose aw thanks for your kind words.

@Orangesandlemons77 PIP is such a stressful process that the thought of starting it all again in just a year must be awful but fingers crossed the MR does the trick and they extend the award.

@MewithME I am sorry to hear about your thoughtless ex changing plans, especially when you had hoped to see your mum. Sounds like the wine was needed though but hope you can pick up a bit soon.

I'm feeling rough. I think I will have to come off the antibiotics after 3 days. I've got bad diarrhea and I'm so sore down there I feel like I'm passing sandpaper. Plus I've got vaginal thrush, an awful taste in my mouth and have completely lost my appetite.

Ear infection not quite gone but better.

@Idontknowhatnametochoose bless you. Is it worth calling GP? Sounds utterly miserable 😣

Thanks- I gave up in the MR in the end as worried they can look at it again and take points away and didn't want the stress of it all, I noticed they added on another year as well so should be 2.5 yrs which is better than 18 months. It's a horrible process really.

I have an appointment on Monday for the mcas....the nurse who prescribed the antibiotics said the doctor will definitely check my ear for me. I think I will stop the antibiotics and see what doctor says. Honestly I'm so sore in several places!

You poor sausage! 😔

Morning all, slow start, gearing up to get dressed and load car for the tip. Dropping that off then food shopping which I've been putting off all week. DH managed to break the old fridge freezer included with our rented house yesterday while de-icing it so we will have to move our own ones upstairs to the kitchen. Not impressed with him! Got all the evidence in for our last house deposit claim which is a relief. MIL back in routine sleepwise last night so that should make today easier, watched 7 brides for 7 brothers with her yesterday (I love this film!) while DH sorted garage, she has an attention span of seconds but sang along with all the songs which was something! 4k film tonight, we're going through pirates of the Caribbean box set then WFH tomorrow.

It's been a ridiculous hard week.

The youngst has an end of year concert with music class. It's been so much work and frustration for her.

16 hours of work this week 2x8 hours completely knocked me out. So tiring that I could cry.

Laundry and cleaning today. Done. We really had to do it.

We ended up not going to church this morning. We're all down with a virus.
Weird enough no one runs fever - the rest of the family have sore throats and colds. I only have insane pain levels as a symptom
I can't control my pain at all. I have had a glass of red wine at dinner.Iwe had a take away. I drink alcohol few times a year but I might sleep a bit now.

Crappy nights sleep. DH is sick with a terrible cough so he's slept on the sofa but I still woke every 20 minutes from 4-6am before giving up. Lying in bed now with a cup of tea and book, children don't need woke for another 25 minutes.

Looks like I can join this thread now. I was diagnosed with MS at the end of May. Today I'm sitting in hospital for 5 hours having my first infusion of rituximab.
I have my phone and my kindle so I'm happy, but kinda need a wee.

@JaaamesBaaaxterrr welcome to the club none of us wanted to join! How are you feeling about your diagnosis?

@Orangesandlemons77 the PIP process is horrible. Glad you don't have to think about it again for a while.

@Idontknowhatnametochoose that sounds tough, how are you feeling now?

Today was a good day. I had a spa day with DH, it was his birthday present from his sister. The massage therapist was really late as her car broke down but they gave us a free afternoon tea to make up for it.

My aches and pains are quite minimal atm. The main thing I'm struggling with is fatigue. So I collapsed straight into bed for 2 hours as soon as we got home. About to venture downstairs to sort some food. DH and I are still full of sandwiches and cakes and fortunately the DC both had big lunches too so I can get away with making something small and quick.

It's been a bit of a whirlwind, so I don't think it's properly sunk in yet! I was expecting to be told I had some weird peri menopause or long covid symptoms. Never expected it to be anything like MS. That feeling when they told me they'd found something on the MRI will stay with me forever.

The treatment went well today, hopefully I won't feel too rough tomorrow cos it's my son's leavers' evening at school and I really want to be there.

Sounds like you had a lovely day @BodysBroken ! Free afternoon tea is a great compensation for having to wait around.

Wishing everyone here a pain-free, restful nights sleep 😴

Hi thanks for asking. My ear is blocked still which is annoying but no longer painful. I had to stop the antibiotics as I felt so unwell plus no appetite at all. I still have no desire to eat and I took the last antibiotic on Saturday.

@bodysbroken I completely understand the fatigue. It's debilitating.

@JaaamesBaaaxterrr sorry for your news. It must have been a shock to get the diagnosis. I hope the treatment helps and enables you stay reasonably active