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 😁

@Dozymoo42 It's definitely hard but so necessary. When I look back I can see how much I bent over backwards for others but when I needed support they were no one to be seen.

@Swanhilde your days always sound amazing. I feel such joy reading what you are up to.

@TeaAndStrumpets absolutely. I just keep thinking of the joy and accomplishment I will feel when it's done. She really needs it.

Yes it is surprising what drains the energy. Stairs do take a lot of energy, and when you clean them you're bending, lifting AND climbing all at once!

Stairs get me every time.

struggling to grate cheese without a rest today.

DD looking forward to travelling 4 hours by train to see her gran this weekend but not sure I can do it in my current state and if I do I will be pushing through illness. She hasn’t seen her in years. Argh.

@Dozymoo42 short answer, no. Walking more won't make you improve. Read up on the scandal of graded exercise therapy and MEcfs and why it was removed from guidance after making people worse.

It doesn't mean you won't improve though. You may do. You will have good days and not so good days, in any case.

It's hard to get your head around fluctuations. Some days I can do a walk. Some days I can't. Some days I can do a walk and feel ok after (no PEM). Some days I think I am ok and it hits me after.

With visible, the stability score probably won't mean too much until you have built up a few days of data. It took some tweaking for my heart rate zones too.

With work, I find stress shows up on my data but mental effort doesn't. I can WFH which helps but I can still get very fatigued from a lot of concentration and that's harder to see in the pacing. There's some short lessons in the app on each type of exertion.

Stairs are my biggest one and cleaning (oops). Sometimes I do what I call micro pacing...pause after a couple of steps and rest a moment before going again. It's better than going up in one go and spiking my HR.

Anyway, I think I may take another day at home before my journey. I was just a bit hopeful of avoiding the traffic on good Friday.

Four hours is a long time but what would you be doing if you stayed at home? Hopefully someone else will be cooking, so that spares you three meals per day. It can be quite nice sitting on a train watching the world go by, Your DD must be very excited! I hope you can get a lie down at the other end - don't feel you have to be energetic. Have a nice time with your family.

Take noise cancelling earbuds and an eye mask if you do go @TheChicSnail , if that's poss.

Actually was coming back to say that!

I've been wide awake since 3 am. An hour or so out of bed then back with a hot water bottle should do the trick. I have a few things I browse on eBay that are quite calming, just looking at the pictures. My fall back is unused vintage linens. I do sometimes find a bargain but really don't need any more tea towels! I do like 100% linen, you can find some lovely prints. It's harmless!

That’s a lovely diversion. Funny what we find soothing. Will you catch up on rest today?

Thanks for tips and @MewithME as well. Will order the headphones today. It’s not my own mum so won’t quite be as relaxing but they aren’t very active themselves so no pressure that way.

do most people try to carry on through flares or what’s the general best thing to do?

@TheChicSnail the best thing to do with an MEcfs flare/crash is to rest as much as possible. Sometimes you don't have a choice. Your body just can't carry on.

If it's PEM rather than a full blown crash, then you should still rest if you can but I will often go to work anyway and just rest as much as possible around it.

To that end, I'm not driving today. Going to go tomorrow after all. I'm a bit frustrated but just too tired. I'll plod through packing today.

Yes I got back in bed at 5.30 and dropped off straight away, up at 7.30 so not too bad. I have spent weeks/months researching bathroom fittings online, but that is SO stressful it's nice to have a non threatening thing to look at!

Normally with PEM (and mine can go on for months) i would rest as much as humanly possible but I know that life doesn't co operate! I can sympathise with you wanting to be there for your DD and not disappoint anyone. I've had slight relapses after various outings but it has never set me right back to the beginning, just added a few days to the PEM. I rest as much as I can before and after, then when I think I've got away with it rest a bit more to be certain! Sometimes when I feel a little bit better I get full of optimism, so don't go mad.

Hope you have a nice break!

@MewithME a nice relaxed day is a good idea to set you up for a busy few days. Your Mum will be so happy to see you!

bathroom fittings sounds slightly less soothing! I’ve been researching comfortable recliner sofas and found myself visualising sofas as I was falling asleep

Yeah I’m very reluctant to completely recluse and stop doing everything. I’m happy to do lots of rest around and in between in order to have some quality of life. It is good to know others do the same. Definitely had the ‘burst’ of optimism, gone for a swim, and then crashed!

Hope everyone has a lovely Easter weekend 🥚

I get so frustrated looking at furniture online but the thought of traipsing round furniture showrooms for hours fills me with dread. I need a body double to send out in my place! Somebody with short legs and a bad back....

Is anyone else struggling with the time change? It’s the third day I think I’ve woken up at 10am and I never usually sleep until then

Yes my body isn't convinced yet!

Yes! I never really have before but I think because I'm in a flare it's affecting me more.

Having an ibs flare too so I'll be attached to my heat pad today. Going to try and knit a stash-busting ugly cardigan to wear around the house. Dh is off this week so it's nice to have a bit of company around him playing his sport.

@bedfrog amd @MewithME I’m glad it’s not just me! I’ve also been having PEM but still never sleep this long and I went to bed quite early last nignt

I’m sorry to hear about your IBS flare too @bedfrog. A heat pad sounds a good idea, do you also use a heated blanket? I love my heated blanket and do show us your knitting when it’s finished. I can’t knit but I like seeing other peoples creations

How’s all the packing going @MewithME?

@JewelleryCat slowly 😁

Gosh that body double sounds like me 😂

You must have needed a bit more sleep then! I'm sure it will even out eventually though, I feel it usually does. Just in time for them to change again!

I don't have a heated blanket unfortunately, a friend bought me one once and I think I wore it out because it broke after a few years!! I usually get into bed with my heat pad if I'm cold but we have a new house that's really well insulated and I keep it at 21 degrees so I'm usually pretty warm. It's been so much better for my health (and dh's Raynauds) compared to the chilly rental we used to live in.

I'll attach a picture of my emotional support chicken here, and will show the ugly cardigan BUT only if it's not too ugly, haha

Hehe I love the chicken!

I'm a bit out of sync with the clock change too, although it does mean I'm waking at 6 instead of 5. Didn't have a great sleep last night and back to work today so feeling a bit rough. But work is fairly quiet at least!

Loving the chicken as well.

I have a cone CT scan thing later this afternoon for the odd mouth thing. Not really looking forward to it but the hospital is close by so that is OK. Starting to feel grateful living close to it in a way.

Does anyone else find if they have an appt even a phone call it disrupts the whole day?

@bedfrog I also love the chicken, it’s so cute! If you’d like another heated blanket, I recommend to get one from Lakeland. Mine is still going strong from there

Afternoon all.
Love the chicken!

Hope it goes OK at the hospital it's good they're being thorough.