Thread 6? Good grief..what are you up to today if you have chronic illness?

[MewithME]

Link to last thread. https://www.mumsnet.com/talk/_chat/5475947-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-5

Hello to my chatty poorly friends and welcome to New ones....

Dough blade, not hook!

Haha! I didn't even notice any problem with what you said. Made sense to me.

I like the sound of the buckwheat recipe and do report back on the the other recipe. I'm willing to try anything new when able. the easier the better.

How lovely of your DH to make them up for you.

I am awaiting our takeaway tonight. I have just got some chips though and will cook myself an omelette or something to go with it. Im hoping it doesn't make me unwell.

For those of you with ME/Long Covid how do you deal with the fear around post exertional malaise?

I spent 4 years pushing past my limits. 1 year putting my all into pacing and now I can do more I constantly live in fear of making myself worse. The visible band only helps so much.

"For those of you with ME/Long Covid how do you deal with the fear around post exertional malaise?" @Tiredandwired2

I've had lots of therapy - ACT was the most effective for me. Acceptance is hard going but helps if you can get there. Sometimes it's worth risking the PEM for a little bit of normality.

I'll be spending the weekend in bed because I know that the travelling tomorrow will trigger my PEM if I don't and I'm back at work on Monday so need to be rested for that. But if I didn't travel I would never go anywhere. It's a balancing act.

Oh, and antidepressants 😕

Sorry to moan guys but can’t think of anyone else who would understand.

Newly diagnosed and finding my way , the feelings I’m having especially the fatigue are not new by any stretch of the imagination been ongoing for quite a while but today seem to have sideswiped me.
I am still working and hoping to keep it that way, WFH yesterday thought that I was being good taking things slower woke up this morning like I had been hit by a bus didn’t even have the energy shower and change pj’s. Managed to work up to around 2-30 when I needed to lie on the bed and rest for an hour my heart was racing ,face bright red and hot, aching everywhere etc I think what’s hitting me more is previously I’ve just lumped everything under one umbrella of just feeling “crappy” and coming down with something but today I actually separated the feelings out and realised what my body was saying - does that make sense?

sorry for waffling and moaning I guess I just need get it off my chest!
Anyways about to try a nice hot shower clean PJ’s and some nice tv in bed - tomorrow is another day.

@Oioiqueen I hope you feel better soon!

@Tiredandwired2 you are the 2nd person I have heard mention the visible band - how does it work and does it help with the pacing side of things? I am desperately wanting to work out what works best for me to allow me to enjoy life but still look after my health.

@Tiredandwired2 you have done so well. You should give yourself credit for pulling yourself back from the cliff edge. It is really difficult to do, and no wonder the fear of slipping back is always there. All I tell myself if I have a major crash is, I've pulled myself up once and I can do it again. The absolute worst thing is the guilt, because I know I've done it to myself by being too active. But sometimes shit happens, and you have to move past it. You have all the tricks up your sleeve now, and know the warning signs!

I just factor it in to my plans. My "spoon limit" per day is pathetically low - I'm not able to work at all and even a shower requires a nap afterwards.

If I plan a fun outing like the cinema or a concert or a family party then I make sure I have no appointments or other tasks required for a couple of days afterwards so I can just sleep as much as I need and chill out with a simple video game.

I visit my family every Sunday so never plan anything on Mondays as that's recovery day.

Luckily my doctor is quite on the ball when it comes to pain relief and I get enough morphine to cover a couple of days out + my weekend visits so that the pain doesn't stop me from being social. It's just the tiredness I have to power through.

I refuse to make myself feel awful for something I won't actually enjoy though. If I'm invited to an event I'm not interested in then I'll turn it down. Feeling that the pain was "worth it" makes a big difference to my mood on the bad days and helps me get through it.

EDIT: it took me a long time to learn my limits and I made a lot of mistakes along the way, treat them as new data points to work with and don't beat yourself up. It's mostly guesswork to start with and there is no point punishing yourself for not being able to guess the unknowable. I've been dealing with fibromyalgia since I was 17 and I'm now mid thirties so I've had almost 20 years to reframe things.

@Dozymoo42 you are so right, tomorrow is another day. Happy to hear any moaning ! Perfectly understandable!

@Swanhilde you have an admirable grip on pacing, and it's such good sense to schedule it in. And cups of tea!!

@DoAWheelie that is great advice and really I think the only sensible way to go on. You are basically doing a risk assessment for everything you consider doing but if you save a few spoons that is so worth it.

Took me a good year of booming and busting @TeaAndStrumpets to work it out. But when I finally discovered what PEM was and that it wasn't just another cold, with the help of my LC clinic I started to pace myself and get on top of things. H1 and H2 antihistamines help hugely with the fatigue too ❤️

@TeaAndStrumpets@DoAWheelie Thank you for the advice and the listening ear it’s really appreciated.

going to remind myself the most important thing I need to remember is time, time to rest and to give myself time to work stuff out .

@Swanhilde ACT is a good shout. I think i have accepted it at times but then I panic about doing too much and causing PEM. I think its not the PEM itself as I can accept that I need to rest. Its the fact I worry I will make myself worse longer term. I was listening to a doctor on a podcast the other day saying PEM is not neutral and you damage the mitochondria. I couldn't fully understand it but It panicked me a bit.

@Dozymoo42 Visible tracks your heart rate mainly but you can also use it to track other symptoms. It can be used to set a heart rate limit and you can see when your in a resting heart rate, exertion or over exertion. Its useful to see the things that use most energy. You can pacing points to work within each day but its a bit difficult to work out as I find you need to do this yourself. I have found it useful to see the impact activities have on me and to validate my dips in energy.

@TeaAndStrumpets Thank you. Your right about the fear of going back into a worse place but I guess I would be starting from a place of knowing what to do which will help. Thats really helpful.

@DoAWheelie Thats great advice. I love the idea of set backs as data points.

Thanks all for taking time to reply.
I think I pace really well but I just can't find where my edges are and I think I need to experiment sensibly and slowly.

I have tried listening to some long covid podcasts now I am feeling a bit better but a lot are about recovery and usually about brain retraining being the thing that healed that. I find them quite unsettling and hard to relate to.

@Tiredandwired2 I think the fear of PEM is a tricky one. I was diagnosed a long time ago and have been moderate/ mild/ severe then moderate again in that time. I’m always terrified of going back to the severe scale.
However I’ve learned it’s a very unpredictable illness, sometimes it’s nothing you’ve done or havent done, it just happens sometimes with no rhyme or reason.
I agree re acceptance, sometimes I know I’ll get PEM but it’s worth it to have a nice memory of a meal out or trip somewhere. Also accepting the PEM, this is a day of rest, giving my body the rest it needs to recharge the batteries. In longer flares my DH often says, you’ve been here before, it passed, it will pass again which helps calm myself and accept where I am.

Im sorry it’s been a difficult day @Dozymoo42 it can be so hard to navigate and work out what has used up your batteries! Your description of being hit by a bus sums up exactly how it feels. I use the same description!
I agree with others re the visible band. I just use the visible app to record symptoms and give me a daily score (1-5) to show how my body is doing but I think the band would be a useful tool especially for someone newly diagnosed.

Ive been so slow typing sorry if I’ve probably repeated what’s already been said!

Thank you @TodayIsatrickyone I might look into getting by the visible strap from what I have read it might be helpful to getting a handle on my pacing.

How are your feet now? It sounds awful!

Thank goodness it's Friday tomorrow.

Thanks they are healing very well. Those gel dressings are amazing, they take all the heat out. Absolute must for the medicine cabinet.

Glad this week is over!

Oh that's great, I've not heard of those gel dressings, will definitely look that up, can never have too many items in the medical cupboard here!

Just gotta get through today (school run, taking son for haircut which with ASD is not an easy task) and that will be me done for the following 42hrs - yes I counted haha!

Morning all!

Miserable here, I've given up hope of any nice weather. Very bad sleep last night so planning a zero effort day. DH out today so it will be just me with Kirstie and Phil and a pot of tea!

I find property programmes low effort and mildly fascinating, I'm
not up to watching anything challenging! Last night we watched the new George Clarke Building Home episode. We refer to him as Crying George because he turns on the waterworks at the drop of a hat. I am also starting to call him Groping George because he hugs everyone. Kevin McCloud would never do that!

Hope everyone has a good day.

Morning. Very dull here. Dh had an early start so the alarm woke us at 6am.
Dd2 will be round later with her dd. 14 months. Cute as a button. Obviously biased grandmother here!

Morning all! Miserable day here also giving serious consideration to ask hubby to start building an Ark!

@TeaAndStrumpets Funnily enough I watching Kirstie and Phil last night big fan of renovation shows the only problem is it makes me want lots of stuff done to my own house when I have neither the time , energy or the money 🤣

@Realisation14 enjoy your 42 hours hope it is peaceful!

@CoffeeBeansGalore snap! My DGD was one last month. They live some distance away so I rely on photos and phone calls to keep up. She had her MMR+ Chickenpox vaccine this week and is feeling very sorry for herself. Poor little girl. DD and her DH have each taken days off work to look after her. It's horrible when they're ill but it gets it over with. I've worried about her catching measles at nursery but hopefully she'll be safe now.

Glad you're healing up well @TeaAndStrumpets - I was interested to hear they burst the blisters. I burned my hand a couple of months ago (on some hot sugar from making mince pies, of all the ridiculous seasonal accidents) and everything I read said not to burst then blister. I did use gel plasters though and it's healed well except for occasionally still feeling a bit itchy around where the blister was.

I've got my landlord coming round shortly, then no other plans for the day. Tomorrow I'm attempting to run a rehearsal (my second 'job' is a variety of musical things) which I'm sort of regretting having decided to go ahead with - but I know the group well and quite an informal thing so I've told them it may be a case of me handing them music and sitting in a corner. It'll be nice to see them anyway and I'm also considering it a test of where I'm at with everything. Sunday will be spent in bed.

The George Clarke one was ridiculous, they had no idea about budget and had a massive glass extension stuck on the back of a standard house. We are in the throes of house building so a lot of their decisions just made us wince!

@martha79 yes the gel plasters are amazing, although I've now graduated to dry dressings. I had the blisters cut off on my left foot, they were in a cluster. I only had one flattish blister on my right foot and the nurse left that. It's now sunk down and healing underneath. I wonder if it's to do with how puffed up the blister is, or how many.

How lovely to be part of a welcoming community. I think it's a nice thing to do, and surely does you good!

Morning! Rain most the day here too. Dog walk postponed to later this evening when its hopefully a bit drier. Other than that its going to be a slow day, just see what the day brings.

Not a great nights sleep. Takeaway made my tachy all night. I forgot to take my visible band off and it recorded that i was in exertion mode until about 3am. Think I may have to stop that particular takeaway. It wasn't really worth it.

@martha79 That sounds good and I think it will be good for your soul, even if you do have to rest lots afterwards.