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

[MewithME]

Last thread 🧵

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 😁

Newbie to this thread. Fibromyalgia sufferer with two dc age 7and 5.
Yesterday was our anniversary so feeling a bit sore after some ehm celebrating 😳 but worth it!

Done some gardening with DC today, I bought the plants and just let them plant them where they like. We'll soon find out if a viola will grow next to a broccoli but that's what dd wanted and I love seeing her be creative.
I know I'll be paying for my active day tomorrow and monday but the sun lifted my mood and it's worth it to see them enjoying themselves in the garden

Thank you! I do prefer cotton. Very useful tip.

@Adhdmum2 welcome! Come take a pew and the kettle will be on shortly courtesy of @TeaAndStrumpets

Violas next to broccoli sound interesting but I bet your daughter had lots of fun

Fibromyalgia is rotten @Adhdmum2 , glad the sunshine cheered you up! It's lovely to get children growing things and enjoying the fresh air. Hope your broccoli and violas both flourish!

Welcome @Adhdmum2, I hope you're not too sore today. Your veg and flower mixed garden sounds lovely.

@MewithME it's so hard with friendships, isn't it? I used to see a lot of people through activities (e.g. I went to choir rehearsal every Monday, I was out at something three or four nights a week) but obviously that's all dropped off. I feel a lot more 'disposable' to people - if we'd organised a day trip in the past they'd be unlikely to cancel unless they really needed to, but it seems like a short trip out to a local park/ cafe is a lot less of a 'thing' to them (whereas it's the equivalent of a day out to me at the moment). I also have quite a few friends who tell me how much they love alone time and assume I'm the same. The funny thing being that they are the ones who've never lived alone - have lived with their parents throughout their lives or went straight from uni accommodation to a flatshare to living with partner. I'm fairly quiet/ a bit shy, but if an extrovert is someone who gets their energy from interacting with other people, I'm actually more that!

Anyway, trying to be positive, I'll think of today as a bonus resting day - this week at work is going to be full-on so that could be useful.

Morning all! Another beautiful day here.

I woke up a couple of times during the night with pounding heart, obviously the adrenaline is rampant . Heartrate slowly coming down., oxygen slowly coming up.

Weighing up hairwash now and do nothing else today versus hairwash itomorrow morning AND appointment tomorrow afternoon. I think fewer spoons used if I wash it today, but then again my oxygen is low at the moment and climbing upstairs to the shower will push up my heart rate. I'll probably risk today. An ME crash does wonders for my mental arithmetic!

@martha79 the time will go quickly I hope! We are all here if you get bored!

Gorgeous morning here too. I have been out for a potter around the garden and cooked another apple and blackberry crumble for lunch with my DB and SiL. We are going to their's so that will be lovely ☀️

Yesterday was fab catching up with old friends, one of whom I probably haven't seen for around 15 years! But the conversation flowed like old times. We decided that we are all much the same only greyer 😂

And we have resolved to meet up again later in the year and not leave it til our kids are in their 30s 😳

Have a restful Sunday all 💕

Good morning all

I have only just been diagnosed with chronic fatigue, one year after having pneumonia. Today I am taking my daughter to cinema as low key/low energy activity.

Getting her ready- just putting her hair in a pony tail leaves my arms exhausted.

As an aside does anyone find that with this condition they find it harder to get over colds and flus? I’ve heard some people say the opposite it for me a cold can take me down for about a month.

@Swanhilde sounds very wholesome and lovely. Mmm crumble 😋 Good friends are ones you just click back in with.

@TeaAndStrumpets can you just leave it to dry without doing anything else to it? I have made hair which is like some sort of birdsnest but I usually just let it dry naturally and then pile it up and just straighten my fringe but if I have to be seen in public.

I'm still very wobbly and feeling daunted about work this week plus exh is sending ridiculous messages..off his rocker. I've muted the chat now. It's intolerable. So slow day here. Book in the garden for a little while at some point.

@martha79 it is hard but I count myself lucky. My friends at least text me plenty and will make an effort to see me when they can. In some ways, I've been used to being the daytime/coffee friend as they all have partners and I don't so haven't had evenings out much anyway, as single mum. We've all had health issues too.

Welcome @Adhdmum2 too 😊

@TheChicSnail yes, takes me a long time to get back to baseline though weirdly if I actually catch something, it's like those symptoms take over and the MEcfs takes a back seat for a bit.

Lifting your arms up is something that will use a lot of energy. I struggle doing my own hair when very fatigued. Cinema sounds nice though. I am hoping to take my son at some point but I'm too exhausted today.

Thanks for your response and insight. I hope you get a pocket of energy sometime for your cinema trip.

The arm lifting thing is very exhausting indeed.

Should say @TheChicSnail chronic fatigue is not the same condition as MEcfs. Hoping you have the former and not the latter and you will be better in time. 💐

@MewithME yes! I am sitting here dripping slightly and letting my hair dry naturally. I could get it blow dried very quickly but holding up the hair dryer is too tiring.

@TheChicSnail a warm welcome and snap with the arm lifting thing! I don't think I'll be hanging washing on the line any time soon.

If anything I have a very active immune system, so if DH has a cold I seldom catch it. I really struggled every time I got covid, though, the recovery was worse than the illness. Sorry you've had pneumonia, my adult DD got it a few months ago and it's been a slow recovery. Thank goodness for the better weather - hope you are on the mend soon.

@Swanhilde it's so nice to keep up with old friends. Mine are all MUCH greyer than me 😄although they have loads more energy!

@TeaAndStrumpets Ahh yes I had read that some people don’t get as many colds etc. Sorry about your daughter and may she recover well.

@MewithME I did not know there was a difference. I have been referred to the ME/cfs clinic in my area so maybe I will ask them or my GP when I next see her. It would be great to recover. I actually had a few months where it felt like I was recovering. Was able to walk 40 mins at a time etc. Decided to then try a 15 minute swim and that seems to put me back to square one again with the severe muscle fatigue.

I guess using arms is exhausting, however you do it!

Yes thanks doing OK but been ridiculously tired. She's had loads of antibiotics and now being investigated for asthma due to oxygen levels staying low. I wonder if's fatigue though. These things knock you sideways.

I had a sudden memory of my mum putting my hair in rags when I was about 5. She despaired of my hair and tried everything to make it curly! I had waist length hair and she wanted long curls. They never lasted long!

Really tired today. Not surprised really as visible score was 1 yesterday but I still pushed through as we had guests.

Went to bed early which must have helped a bit as scored 2 this morning. It's hard because I tasted a bit of life again and now I'm back on the sofa.

Just feeling a bit sorry for myself today, I'll snap out of it soon.

I also didn't know that there's a difference between me/cfs and chronic fatigue (mine's fibromyalgia).

Do other people find their PEM is worse in the afternoon/evening than the morning? I’m in PEM and I’m finding that it’s worse than in the morning even though I’m permanently exhausted all the time right now from when I wake up

@BerfyTigot it's so tiring chatting! It's lovely to see people but there seems to be a price to pay. I know what you mean about that glimpse of a normal life being snatched away. Sometimes I feel like the child with her nose pressed to the sweetshop window.

@JewelleryCat do you think you are doing too much in the mornings?

My first few months post pneumonia were a write off. Was signed off from work and bed bound for most of it.

It is much better than it was then but took at least 6 months. Amitriptyline helped a bit with body pain and sleep issues.

There is hope/light at the end of the tunnel.

You are right about the arms!

@TeaAndStrumpets I don’t think so, just my normal stuff which isn’t that much. I try not to do too much anyway when I’m like this because I know anything can make it worse. Even doing some self care which I desperately need can make it worse, I need to vacuum but I haven’t found enough energy for that yet

Morning! I hope there are lots of opportunities for rest.

I took the children to see my mother in law, she’s very close to the end. It was awful, just awful. Dh is still there and will be till the end I think now.

there were lots of relatives and so I had to be very on.

we are home now and won’t be leaving the sofa much.

I think this is likely a GP using the wrong terminology thing. My GP calls mine a "chronic fatigue fibroy type of thing" 🙈 I have to correct her and tell her I have MEcfs and not fibromyalgia.

Chronic fatigue is a symptom really of something else. Chronic fatigue syndrome (M.E.) is a distinct illness often triggered by a virus or something else but is a condition in itself. I do hope it's the former. It's possible you have either.

That's good news you have a clinic. I've never been seen at one. I was referred back to it but heard nothing in years. I can't be bothered to chase it up because they're based a fifty minute drive from here and are not going to tell me anything I don't know by now.

The diagnostic for MEcfs is non refreshing sleep, sleep disturbance, sometimes they consider alcohol intolerance and the key feature is PEM ( post exertional malaise).

It's all a bit of a learning journey but we're here to chat to anytime x It has been my greatest support having people on FB support groups and here with wisdom that has helped.

I am definitely better in the mornings. I find afternoon meetings at work killer and they are always afternoon!