What are you up to today if you have a chronic illness? Thread 5

[MewithME]

Here we are again. 😊

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5458553-what-are-you-up-to-today-if-you-have-chronic-illness-thread-4

Yep 👍🏻 I think I have MCAS too.

This was me earlier in the week.

Evening all. Well, I "pulled a sickie" today because.. well long story...but I'm up to my eyes on a deadline and I am being constantly pestered by others so I wanted to get on in peace and not have to answer calls or emails.

I made good progress and will do the same tomorrow only I realised....I actually probably need to be actually off sick as I feel horrendous 😭

Had a really full on day yesterday. Does anyone with MEcfs do visible app or the spoon theory? Well, I blew my energy budget. So no surprise I feel all thumpy headed, dizzy, in pain, headache, sore throat...the whole lovely list.

@Swanhilde and @FuzzyPuffling enjoying your creative endeavours 😊 I was an artist in a former life.... My work is just art adjacent now really. Maybe I'll potter about if I have any energy when I retire in another decade or so 😭

The news is depressing. Wish I hadn't ventured out of our little corner into the main MN. Read the Epstein thread which is so awful. I was on another thread about something else though on a different username and everyone is getting all shouty. It's rough out there. Not going to bother again fora while.i can't cope with all the nastiness. I work with some nasty people, I commute a few days and drivers are super aggressive and then....urgh ..the news. Going to hide with something lighter on telly!

Love to you all @Stressybetty and @TeaAndStrumpets and @Orangesandlemons77 and @BerfyTigot and @JewelleryCat and all you lovely lot. You bring me some happy and I am grateful x

Btw... I don't think there's a link with ADHD or ASD and MEcfs necessarily but I do wonder whether there may be a bit of a something there. Lots of people with MEcfs have had chronic stress or trauma as well as the viral trigger. ADHD often has a trauma overlap. And then there's the kind of people who push themselves and do too much and ignore illness etc. So maybe there's something in it but not the way we think?

Love to you too @MewithME . Please pace yourself. There's more to life than work and you deserve the best of it.

Missed my evening class ( again) and am in bed with hot water bottle

@MewithME be really kind to yourself and do have a sick day if you need one.

Aw. I misread that for a second as in bed with a bottle. Fleetingly imagined some sort of decadence 😁

I am in bed too now.

I keep picturing you as an artist I vaguely know who is also a Hedge witch 🧹

Sorry you are so stressed @MewithME another day off sounds like a good plan.

I try to be selective reading the news but humanity is a big disappointment as a whole. I'm sure there have always been evil men but there don't seem to be many consequences these days. If I ruled the world there'd be more protection for women and children.

Oh bliss! My hot water bottle is my very best friend.

Absolutely @TeaAndStrumpets I don't spend much time with men these days but I do know a few good ones. Shame I didn't marry a good one though. Sigh.

Well my sickie involved 6 hours of writing documents today so I didn't actually do a sickie... just enough of a sickie to tell people I'm not available to avoid extra stress. It was quite nice but I am knackered and need proper rest.

@MewithME agree, I took a days leave last minute today and just rested. Felt guilty but needed the sleep.
The rest of Mumsnet moves so fast, sometimes I see a thread I could comment on but whats the point if it's already pages long.
Just not worth the energy.

Yes it's the mental energy, and some posters are obtuse/downright nasty. I once went into a thread and got viciously attacked by a couple of posters who objected to my opinions. They went on and on and on at me, I gave them a good run for their money though. In the end i was still standing and they were still ranting. It really was like being back at school.

You do get to recognise some posters and just avoid any thread they're on.

I'm another one who thinks they have MCAS. I started getting rashes and hives as well as facial swelling almost every day around 10 years ago. Once my lips swelled up so much the skin split. An allergy test showed up as me being allergic to almost everything they tested.

But I can be exposed to something I'm meant to be allergic too several times and only react one in 3 or 4 times. I also have allergic reactions to overheating and things the test came back as not allergic too.

I never bothered pushing for a diagnosis as I looked up the treatments available and it's just meds my GP already has me on so it seemed a bit pointless.

In other news, I had dental surgery under sedation yesterday morning and just woke up after sleeping it off. A bit sore and headachy but in surprisingly little pain from the surgery site this time (my third of 4 treatments).

Still quite groggy so I think I'm going to pick a simple easy video game and spend the day relaxing.

Much sympathy @DoAWheelie I have so many food allergies which all came on after I got seriously anaemic in my 40s. I think my body was just so stressed. Mostly throat swelling which is scary, and what you would class as intolerances ie give me the runs. I get contact rashes eg elastic and sometimes a few scattered itchy spots. Wool gives me urticaria.

My main problem at the moment is eczema round my eyelids which I'm struggling to treat because creams etc round my eyes make my throat swell!

Morning!

@DoAWheelie I’m another who also suspects along with a whole bunch other stuff that I have mcas. Apparently it’s getting harder to get a diagnosis in the uk as too many people are presenting with it and it isn’t well understood.

I do wonder how stress, immune system and hormones interact to cause so many illnesses.

Sending love to all those who are swollen, sore, itchy, in pain or just downright exhausted today.

I'm off for a walk in the park with DD1 and her bonkers dog this morning. Takes many spoons, but worth it.

Urgh sympathy to all of you with allergies. I've had allergies all my life. I have also always had problems with reacting to heat. I used to get a heat rash in my teens with baths.

My flare earlier in the week has calmed down a bit but the antihistamines were probably what made me completely knocked out. They're meant to be non drowsy but they've always knocked me out unless I take them daily for months.

I don't know whether to bother mentioning MCAS to the GP. I mean they don't really understand MEcfs so mentioning suspected comorbidities seems pointless. I think I may have Ehds too but it's not that obvious..I believe it is quite varied though.

Although menopause/peri is probably aggravating all of it.

I'm just shrugging these days!

In other news.....IT IS FRIDAY! Klaxon 😂

I suspect I have MCAS too. I have constant rhinitis and take multiple antihistamines everyday along with a steroid nose spray. I've suffered with hay fever all my life but since LC this is now 12 months per year, no let up 🤧

Have binned off the allotment this morning. I am tired and it's too wet and windy. If the weather cheers up there's some tidying to do in my garden so I'll get out later for some fresh air 🌪️

Massage this afternoon, which I'm looking forward to as my legs are sore. We upped my exercises very slightly last time so I'm thinking this might be why. Nothing major, and no pem effects, but worth mentioning. Nothing like the slab rolling! Tried to be more gentle yesterday 🤣

Keep warm everyone. Kettle will be on constantly this morning, so if anyone wants a brew just shout 💕

Yay to the Friday klaxon!
Sorry to all those struggling in whichever way today. Have read posts but too tired yesterday to respond.
Felt okay ish yesterday morning so went over to mums with DH who was trying to sort out a car problem for her. We were there ages while he tried various things which didn’t work and then the heavy rain hit so a bit of a frustrating day which then wiped us both out.
Back to bed this morning after letting the dog out as just feeling sore and shattered.

@MewithME I have memories from childhood of lying on my bed on sweltering summer nights with a saucer of vinegar and a cloth to dab at my itchy lumps! Not to mention the hayfever...I have apparently grown out of that. Same as DH his hayfever was horrendous as a teen but much better in later life.

It does make one wary of ingredients. I've thrown out so much stuff.

Just my usual thanks @Swanhilde! Hope you enjoy the massage. I am still sore after the osteopath on Wednesday, he is working on my sacro iliac joint and it is protesting!

@TodayIsatrickyone it really isn't the weather for standing outside. Bet your mum was pleased to see you but it's so tiring chatting.

Lying in bed listening to birdsong with a hot water bottle. Had some sourdough toast and chocolate and hazelnut spread for breakfast

A cheer up breakfast because DH is in a bad mood. Work stuff. Anyway will try not to let it bother me

Have an exciting trip to the pharmacy in a bit. Hope the rain holds off

Thanks @TeaAndStrumpets Hope the soreness settles soon. I have issues with the sacroiliac joint too and it’s a fine balance isn’t it with the osteopath! I also find it gets worse when I’m forced to rest so much.
Yes I def have a chatting limit of around an hour and I went well over that. Plus the concentration of trying to work out from mum exactly what had happened re car so I could summarise to DH! It takes a while for her to get to the point bless her! If I ever grumble my DD tells me I’ll be the same in a few years and I think she’s not wrong! In a way the rain gave us an out. DH is popping back this afternoon to try one more thing and if that doesn’t work, I’ve told him to admit defeat and call the garage!

Ill take a nice cup of builders tea please @Swanhilde super strong with a dash of milk!

Decaf coffee for me please Swanhilde..
☕️

Lovely .

@TodayIsatrickyone yes too much resting is not good but can't get round it most days. I used to enjoy Pilates but found it exhausting and some of the exercises are not allowed with my osteoporosis.

Also I think I tense up all over when I'm stressed. We've had so many delays with the planning department. They are understaffed and keep extending their decision date. We are lucky our buyers are patient.

The rain here is relentless. At least it's not snow - can you imagine the chaos?!

@Swanhilde now the tea orders are pouring in (ahem) can I recommend the best thing ever? We have a retro tea trolley in anodised aluminium mid century but in nice condition. The frame and wheels are 'gold' and the two tiers are deep pink. I love it! I bought it because of DH's dodgy hip so he never needs to carry a tray. I am home alone today so I have the morning teapot and my lunch plate all stacked on it and will wheel it to the dishwasher at the end of the day. It is so useful!