What are you up to today if you have chronic illness? Thread 3

[MewithME]

Link to last thread.

https://www.mumsnet.com/talk/_chat/5406424-what-are-you-up-to-today-if-you-have-chronic-illness-part-2

Can't believe we filled another one.

May i ask, does everyone here have MEcfs? I don't.

I have a combination of auto immune connective tissue disorders, with associated kidney and heart problems.

@FuzzyPuffling I have hypermobility and arthritis (and I’ve just had a third hip reconstruction). My connective tissue issues leave me in daily pain, fatigue, brain fog, severe IBS, anxiety, POTS type symptoms and I find it hard to regulate my body temp and react to the air it seems some days (hello sore eyebrows, weird itchy rashes from no where, scars that go weird and wounds that don’t heal).

We are a broad church here! The connection is the chronic illness part, so I’m sorry to say it sounds like you found the right place 🤭🥰 Welcome!

No @FuzzyPuffling there's a mix of things. When I started the thread I didn't want to be too prescriptive. I think chronic illness has challenges that we have in common even if our conditions are different.

Thanks both. I was just interested.

I do so agree we have more in common than not...dealing with daily fatigue and pain is certainly not restricted to one condition. And unless you're dealing with it, you won't get it.

I hear what you're saying, to be honest it was me suggested the exercise and they did say to take it easy, maybe just try five minutes first. The other people had simple things like putting up some Christmas decorations or making food for Christmas, and then they showed us a wheel with restorative activities which was things like resting, taking a bath, having a hot drink etc, all peaceful things really.

The goals could be anything really like having more rest for example. We have these sheets to fill in with restful / restorative in green, medium activities in orange and high intensity like socialising in red. They did sy walking would be a red activity and would be good to take that into account by doing green activities around it.

So I'll see how it goes. We also talked about self talk and not beating ourselves up over not going to the gym or whatever.

I hope you get a bit of rest this weekend, I know what you mean about Christmas and cards etc. I might send a couple with that moon pig service online. which sends it for you. Bit embarrassed it might look impersonal though and it is more expensive.

I'm NC with my mum, she has mental health problems and has delusions about me, Christmas can be quite hard here too, particularly with MIL staying on the sofa (she hoards stuff so we can't go to her)

In a way I just want it over and am not keen on the build up this year in particular. Maybe when you get to 49 it starts to feel a bit repetitive, maybe every 3 years would be a better idea.

self talk is definitely something I have to fight. I need to start reading my ACT book again.

it sounds like they are taking quite a sensible approach with thinking about the restful and restorative activities you can do. It’s so easy to do nothing or very minimal but actually finding tiny things that don’t make you flare and that boost serotonin are good.

For me I do globle, cemantle, one word search and Wordle and Duolingo everyday. I tick them off on my finch app and I get the buzz of achieving things. I also take my supplements and feel I’ve nourished myself. Little tiny things, but they help me feel a bit positive. I’ve found the bits of painting positive too; and I’ve done some Lego on a tray on my lap.

On the conditions, I have recently been diagnosed with ME / CFS, I also have had lots of bowel surgery in the past and have adhesions from that causing pain, PTSD, depression and anxiety. I think it's all linked really and flares up together, the PTSD is from the emergency surgeries.

We did some colouring in the group today and have this book of Restorative activities which looks useful, sensory things and the like. They said something about there being videos of yoga suitable for CFS online so might take a look at that. Gentle yoga I suppose.

That sounds better than I feared @Orangesandlemons77

It's audiobook time and sleep for me. Night night all, sleep tight x

I have Post Covid-19 syndrome (Long Covid). Breathlessness, fatigue, brain fog, pain and PEM are my main symptoms. Pacing and self-care are my antidotes, along with a load of pills and supplements. Positive self-talk is one I often forget 💕

Off for another walk this morning, rain seems to be holding off. Legs are sore but nothing a couple of ibuprofen can't sort.

Will be back later with tea and famous gingerbread 😄

And here's yesterday's tree ...

@Swanhilde that is a beautiful sight.

Conditions: CFS/ME, IBS, multiple food and environmental allergies, none of which have treatment except self-management. Osteoporosis which is treated but the medication is not great for my kidneys. I think the CFS/ME is the one I resent the most, as it shuts me away from normal life.

Today I am doing the final Christmas cards. I have a really tight neck so can only do a few at a time. It is really frustrating as I used to like sewing and can't bend my head forward for long. If I won a million pounds I would have a massage every day!

My new heated eye mask is great! I had it on twice yesterday and fell asleep both times. Eyelids haven't de puffed yet but hope to see some progress in time. I suspect some of my problem is seasonal, mould allergy maybe. BTW I am not living in a hovel, it's just a draughty old house with poor insulation!

Morning all. I am intrigued by heated eye masks for puffy eyes. Don't the beauty people tell you to put cold teaspoons on eyes for puffiness? Hot feels counter intuitive. Not sure I'd like it!

I am laying in bed feeling very heavy and buzzy.

I need to get my Xmas on! I am not feeling it at all. I just feel sad about it. It's because I'm so tired probably. Anyway feeling torn between not doing a thing today which would be good for my body and doing the Xmas stuff I need to do before DS gets home which will make me mentally happier probably.

I'll plod and see where I get to.

Maybe an Epsom salt bath to start the day.

@Swanhilde lovely photo. I'm living vicariously through you. Have a fab day 😊

@MewithME omg you've summed up the perpetual dilemma !! Being torn between doing nothing which is good for the body and doing what needs done which is good for the mind. Urgh!!!

I'm staying home today and have done nothing as of yet but I will later, just unsure what, but there is plenty to choose from believe me!

@MewithME i need the heated eye mask because of tiny blocked glands inside my eyelids but quite a few reviews suggest it also calms puffiness due to increased blood flow.

Well hope it works for you @TeaAndStrumpets

Plodding update...I've had a bath so at least I'm less gross. Having a small cry sat on the bed. Christmas bringing up feelings of loss I think but I'm emotional anyway due to the fatigue levels.

I'm a cheerful feckin soul aren't I? Sorry everyone 😂🙈 Don't want to bring anyone down.

I have put something on oven to eat. I will watch some telly. Trying desperately to feel better!

MewithME I'm sorry you're feeling so rubbish, but here i am with a hand hold until you feel up to doing life again.

I recommend hot chocolate, rubbish telly, cheesy book and warm blanket.

Another walk and another nap done. Miles without Stiles rather underplayed the gradient of today's return leg but we took it slowly and it really was good for our souls to be out in the fells. Sun, rain and the most complete rainbow I've ever seen 🌈

Up now, with ginger chai tea and famous gingerbread. Plan for this evening is early dinner in the local pub. It says they do cheese and potato pie on the website so that's me sorted 😋

Take it easy everyone 💕

That sounds fabulous @Swanhilde 🥰

My immune system is suppressed as a consequence of treatment for autoimmune conditions. As a result, I’m regularly picking up viruses that last 24 to 36 hours at least. That means once a week if not more. The current one started last night and I’m feeling wretched today. I’ve not dressed and I’ve mostly been in bed. I

I have a headache and I’m feeling miserable because there’s so much I want to do and I just can’t do it. So the answer to the thread is that I’m scrolling through here partly as a way of coping and partly is a way to avoid worrying about what my future looks like.

Today's rainbow 🌈

I hear you @HoppityBun . I've been very maudlin about the future. Day at a time is a cliche but needs to be our mantra.

@HoppityBun feel for you, that sounds rubbish.
@MewithME gentle hugs and some soft tissues.
Final pups gone today to nice people and feeling strange. Has been a long 6 months worth of stress and work but have enjoyed it.
Dismantled one pen, washing final toys and vet bed to store away. Soaking lino and poo trays in disinfectant. Looking forward to having more time each day.
Now to start slowly deep cleaning the house and sorting our stuff out. Quick tip run tomorrow with excess recycling and rubbish and to buy Christmas cake.
Lidl have a couple we liked but had run out of them last year.

Glad you are here @HoppityBun hope it can distract you a bit xx

@Stressybetty you need a rest now the puppies have left but doesn't sound as if it's happening! Tip runs are very satisfying though.