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.

I’m resting today because I’m volunteering for a church maintenance day tomorrow and meeting my adult DCs Sunday. I try not to put things on adjacent days but it’s unusual to get a time when both DCs are off work the same day.

That sounds so rough, how is he doing now?

Evening all. Very tired here today. Done as little as possible but wish I could have done less.

@didntlikethisThere are some long Covid clinics in South Wales. Curious about the provision in other parts of Wales.

Quiet weekend for me. Going to a nearby retail park to pop into M&S for an easy dinner then into hotel chocolat cafe for a treat.

Hi to new posters 👋 Glad your here but sorry you have to be ❤️

@SunSay Also early 60s and feeling old!

Morning all and hi to new posters.
Fed puppies and dogs, cleared up kitchen and sorted out MIL. Tried to update my budgeting spreadsheet for the month but for some reason all my online logins have reverted to passcodes which of course I've forgotten. Seems to be a delay once reset too so that's going to have to be done another day.
Wet and muddy outside with heavy rain warning.
Got to help DH sort and restack garage and move stuff around downstairs later but that should at least clear space so I can actually attempt to clean.
Whole place needs a thorough declutter and clean up. So difficult to get things done with MIL needing constant supervision when she's up.
Actually feeling a little more ok in myself, still on 1ml LDN and the venlafaxine is kicking in. Been getting MIL to bed earlier so I can get to bed too and am going to sleep rather than being on my phone.
Hope everyone has a good day

LDN helped me a lot for about a year. I still suffered with the fatigue but muscle pain seemed to reduce quite a lot. However, it seems to have worn off the last few months, and the pain is back 😞. So I’m taking a break from it. I might start up again in a few weeks, see if the break has helped.

@SunSay yes I started LDN months ago and was told to increase every 2 weeks. Started feeling great then increased again and felt bad, couldn't remember the dose I felt good on so stopped altogether. Now I've started again and taking it slow. Think I increased too quickly and didn't keep track of how I felt on each dose. Also it really does lose effectiveness after being open for a while.

@Stressybetty yes I went up fairly slowly. I ended up on about 3.5 mg which seemed OK for me and did help. Some people might even need more eg 4, 5, 7 mg. A few people are very sensitive and take tiny doses. It was hard to figure out dosage since ME/CFS is a fluctuating condition as well! The overall effectiveness seemed to go down after about a year - but I used fresh medication every month so it wasn't the medication being old etc. I hope it works for you.

@SunSay thanks that's helpful, I'm not expecting it to be the answer but no harm in trying. Hope it works for you if you restart.

Morning everyone!
I've had a slow morning this morning
I've been dealing with my sibling's micromanagement of probate documentation ( from her holiday in the sunny med!), renewing home insurance and I've actually done a bit of tidying and dusting in the living room. Only 15 minutes worth - I'm having to break down physical tasks into 15 mins blocks at the moment.
I've also injected my first dose of Wegovy this morning. No idea how I will get on but some people with fibromyalgia find it helps with pain and energy levels. I'm not primarily taking it for that reason though. I'm obese and pre-diabetic with high blood pressure and cholesterol and decided I needed to take some kind of action as the weight keeps creeping up despite me telling myself I can get it under control.
Hope everyone else's day is going well.

Oooh. My day:

As usual very late start - sleeping 10 hours - only woken by postman at 11 am.

Short walk to the Post Office (thrill!). But noticed some lovely berries out in a hedge along the way. I wish I lived in the countryside!

For once, I don’t feel like I’ve got a (small) to-do list that I half finish - as today my flat is already tidy and some washing done yesterday so only a few little chores today.

A ciabatta sandwich for brunch (no cooking/ washing up, hurrah!). However I’m tempted to make some chocolate chip cookies as they didn’t have one in the shop which would have been better <sigh>.

Maybe I’ll do some reading and watch a film later. Good luck with the Wegovy @EducatingArti.

Just finished work until Monday and fighting a sleep attack. I need to go to the local feed store before it shuts so my sleep will have to wait.

Could you have Vasovagal Syncopy? I have, diagnosed by TTT after months of feeling so dizzy, weak and sick that I couldn’t work or drive or even walk in a straight line. Passed out a minute into the test, HR dropped to 22 beats per minute. I also have v low BP.
Plus point is my cardiologist then prescribed midodrine and it has been life changing. I am now back to “normal” and can do everything I used to do, with no side effects. I know about it if I forget to take it (symptoms instantly return) but with it I’m grand. Could be worth a try if it sounds like you?

Stayed in bed till about lunchtime then took MIL out for coffee in the afternoon and for her to get some shopping in the co-op nearby.

Went OK but a bit tired now. Ds's both out with girlfriends (!) so lots of showering and getting ready going on!

I had such a rest day today until 5pm which was great. Lay in bed with my son all morning watching a Disney film and reading to him. Then he ditched me to go hang with his friend from down the street so I put on those moisturizing foot mask booty things and read my own book. At 5pm we went out for dinner to celebrate my son being one year Gluten free today after a coeliacs diagnosis last year (can't believe we've actually got here already, this time last year we felt so scared and lost with how sick he was)
After dinner we went on a little park walk that was across the street. Now back home in pyjamas lying down with my ambience lighting and wax burner lit. A very successful Saturday in my eyes.

Is anyone losing a lot of hair? My hair is so thin now. I can’t decide whether to try and treat it as I read that minoxidil stops working the minute you stop putting it on your head. Don’t want to take any more pills but wondered if this was anything affecting anyone else.

@EducatingArti will be interested to hear whether your fibromyalgia improves with Wegovy. I'm microdosing mounjaro 0.05mg every other day. I had terrible diarrhoea and vomiting when I took the full dose. But my inflammatory markers (CRP) have been slowly improving. I'm considering swapping to wegovy when my mounjaro supply runs out. I'd like to lose some weight but I'll settle for feeling a bit better.

Today I'm having a quiet day. Feeling tired and a bit low because of needing to rest so much. I have some winter bedding to plant if I have the energy 🤞

Anyone with MECFS have POTS like symptoms, but not always? Also worse at some times of the month?

Anything that helps? Already have beta blocker and Xanax.

Yes I do. Beta blockers help when worse, plus avoiding foods thst trigger and large meals as they worsen pots. Obviously over exertion and stress are best avoided too. Not standing up too quickly. Not taking baths or showers that are too hot.

Hello all. I just caught up on your posts. Some nice days yesterday. @Realisation14 great to read your post.

It was torrential rain here. Took DS out for a pub lunch which wasn't brilliant....it was nice being out and stuff but we seem to have a lack of decent pub food round us these days. My fave was taken over and now they have a stupid menu full of burgers and wings. It's not British pub food! I want a nice lasagne 😩😁

I managed to do a few chores too and get some rest.

Today was going to be as much rest as I can manage but DS has announced he needs his mum taxi this afternoon. I'm happy he's seeing his friends though.

I'm still in bed. Will get on with it after I post this.

Laundry, lunch, mum taxi, ring my mum.... Somewhere in there I need to rest.

Sorry you feel low @BerfyTigot I had a fat cry the other night which was pure exhaustion and feeling exasperated that I had to keep going even though my body was screaming for rest.

@Orangesandlemons77 haha, how sweet. My time is yet to come with DS.

@SunSay did you see a film? I fancy one later. Not sure which though. Crazy long watch list as always.

@BerfyTigot
I had my CRP measured last year and it was 4mg/l I'm not sure whether this is good or bad!
So far so good with Wegovy. I felt good this morning. Slightly nauseous and v tired this afternoon but that isn't unusual with fibromyalgia anyway.

Thank you @Idontknowhatnametochoose Breathing exercises and a cold drink slowed it down or it just came down on its own. Was actually in a hot shower when it started. Usually not a trigger for me.

@EducatingArti that's good! Different labs have slightly different ranges but as long as it's single figures you're doing ok 😁. Mine has been all over the place but has come down from 48 to 20 in the last couple of months on MJ

Hi @jkELG . I'm a bit PoTsy but not diagnosed yet. Doctor has ordered 24 hour ECG which I postponed so it's due again. Dreading it 😞

I have a heart monitor I wear all the time so don't know what it'll do beyond what I have already to be honest. Sigh

Anyway.... someone mentioned electrolytes to me. Lots taste gross but I either grab luxoade sport on a meal deal if I am at work or I'm trialling some electrolyte gummies. Not sure if they do much.... think they might help.

I definitely get bad heart palpitations after food...some worse than others. Tomato soup v bad, jacket potato pretty bad....

What on earth....why did my reply get hidden? 😮