What are you up to today if you have a chronic illness Thread 8.. plodding on gently...

[MewithME]

Linky to last thread 🧵 https://www.mumsnet.com/talk/_chat/5506529-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-7

Let's be good and use those last posts up first. Nice to be tidy here if not in my house! 😉

I had some symptoms yesterday and was wondering if it’s yet another thing of CFS. I felt off like a bit unwell, hormonal (it could be this), a bit of a high temperature and I had anxiety on and off all day, some hot flushes on and off too but it has been cold and I still have a coal fire going until the temperature warms up but I do prefer colder weather. Today, I feel absolutely fine

Anyone have an idea of what it could be?

Sorry to hear this @JewelleryCat Its so difficult to tell sometimes isn’t it? That doesn’t sound like my personal experience of CFS ( temp) but that doesn’t necessarily mean it isn’t for someone else.
It does sound like it could possibly be hormonal. Or maybe it was your body fighting a virus or something off? The temp, hot/ cold/ unwell feeling would fit. I find I put everything down to CFS and sometimes it’s something else entirely. Glad today feels more normal but take it easy just in case.

Just having my coffee and in bed as usual!

Had a phone call from a friend who wants to plan a get together as we all turn 50 this year but I am not sure I will be up to it, so hard to know what to say isn't it when something like that might wipe you out afterwards.

It is a long way off anyway so I will have time to think about it.

Hoping for a peaceful day for all

@Orangesandlemons77 I found it hard to celebrate my own fiftieth! It was nice but I found it hard. I felt like I did it for my friends rather than what works for me. The idea of celebrating with chronic illness is really difficult I think. All the normal things are no good. Alcohol, noise, food, dancing, trips away...v difficult.

@JewelleryCat that sounds more like peri/hormonal than CFS. I go cold sometime with MEcfs or else I can generally struggle to regulate my temperature. I'm freezing today because I'm not well.

I'm so worried about this week. I am really not good and a big event which I have nobody else to cover for me. It's wrong but I'm just hoping I will get through in adrenaline without hurting myself from over doing it.

Hope you can get through @MewithME - it's horrible when you don't have an option.

Talking therapies assessment was frustrating. I'm sure they do work through a script, but the guy seemed really thrown by anything that didn't fit the script/ tick the right boxes. Meant to be the chronic illness specialist service but didn't seem to understand that LC can cause what feel like physical anxiety symptoms and it's really difficult to untangle from mental anxiety. I scored super-high on the anxiety scale, but who wouldn't when their body is sending out "danger" signals all the time. Asked me what I wanted and then said they didn't offer that... I've been sent some CBT stuff on anxiety and he's going to speak to his supervisor about counselling - but the counselling is specifically for depression, and I would qualify around 'loss', i.e. big change of lifestyle. Which may be useful, but almost seems the opposite to the LC clinic's emphasis on improvement and rehabilitation. I might just have a look round and pay for some counselling myself.

I really struggle with regulating my temp. My legs have been permanently purple since I was a child

Boring kind of day today. Admin mostly

Thank you @TodayIsatrickyone and @MewithME. I’ll keep an eye on it, it was probably more hormonal than CFS but like @TodayIsatrickyone says, we just think it’s CFS and not something else. Very weird though

That’s frustrating @martha79 We wait so long for these things too. The therapist through the stroke team gas referred me elsewhere ( another waiting list) due the CFS/ ME even though I’ve stressed the anxiety is stroke related. My physio got me to fill in a questionnaire and is taking it back to them. I think she agrees with me I need to see someone but we’ll see.

That sounds a tough situation @MewithME It’s horrible when we've no choice. Any ways you can make the week easier in other ways? Ready meals or something?

Ive hit the jackpot with my physio. I was thinking I’d need to book the osteopath to try and sort this painful shoulder but she massaged it today in an attempt to loosen the muscle. Hoping in combination with the muscle relaxant we’ll finally get somewhere. Increasing activity and decreasing pain relief was not a good plan but I’ve learned that lesson. I’m just desperate to get back to some kind of baseline.

Might be a plan. I have the similar kind of problem and had the CBT appt like you and then have not taken them up on it.

It was supposed to be something called intensive CBT one hr a week for six weeks and I just got bad vibes about it.

I don't think I'm really having thoughts that are out of proportion to what I am facing to be honest and not sure it would work- and I have a CBT book so know what it is about.

the truth is it is not an easy situation and requires a lot of adjustment and I don't want them minimising it etc and not understanding,. It can be frustrating talking about health conditions they don't understand.

I think it would be better if the ME clinic did more counselling really as they were quite good. I liked the way they said they are 'prescribing rest' for us and talked about restorative activities which were easy and not stressful and talked about the grief cycle as well.

I'm starting the realise that all this dealing with other people who don't get it is also taking up a lot of energy but I don't want to lose them from my life as well.

It's a difficult situation to be in, and I don't think people get it really unless they have been there.

Home from work and in bed with a cuppa and homemade salty popcorn 🍿☕

Feeling exhausted but only two more days to go til the holidays 🥳

@martha79 I had ACT through my LC clinic. It was really useful for me, don't know if yours offers it but it might be worth asking? It's acceptance and commitment therapy.

Egg salad for tea, Chelsea flower show and then bed 🥱

Have a restful evening all 💕

I'm wary of the CBT too @Orangesandlemons77 - I think it can work well for anxiety, but like you say, a lot of our thoughts aren't actually out of proportion.

I can't see ACT through the local NHS anywhere here @Swanhilde but I'll have a look around.

Just realised I was very polite to the guy on the phone when he asked if the call had been helpful - why did I say yes? 😂(mumbles something about people pleasing).

@martha79 the idiot that did my OH assessment originally asked me about fatigue and scored me high for depression. I mean...my fatigue might have a bit to do with the MEcfs rather than depression...? 🤦🏻🤦🏻🤦🏻

God yes..."My leg's hanging off but I don't want to be any trouble"

🤣 Exactly! "I'm going through the worst time in my life, but yes, those worksheets were lovely" 🙄🤣

@MewithME yep - going through the depression and anxiety lists and saying "yes, but that's also a long COVID symptom..."

Just said to a friend that I feel like my brain is sometimes unhelpful in all of this, and definitely affected by it, but it's not responsible for it.

Anyway, onwards... I've little walk in the rain and sun at the same time, had a lovely avocado pasta thing for tea, and a shower with Lush Sticky Dates shower gel and I smell like pudding. Back in my own bed tonight too.

I’ve had CBT. Wasn’t very useful because I’ve got FND and I was hoping it would help improve my practical anxiety around mobility but it didn’t. The girl was nice but it was a one size fits all formulaic course which didn’t meet my needs at all

Hi everyone. Went to an open garden yesterday and bought some Scented leaf pelargoniums. I love them. Today I've done f* all (yet again) plus had a nap. I'm going to make a loaf of (gf) bread in a minute and find something for dinner.

Going tomorrow for a b12 shot. Had anyone else had one and did it help at all?

Sorry, I've been awol. DH has been unwell so I've been looking after him. He has an emergency appointment with a consultant this week...please, if you are so inclined, pray for him. We're worried.

I will pray for you

Thank you @ValleyClouds .

I'm even more tired than usual.

Keeping my fingers crossed for you and dh 🤞

@JewelleryCat Those symptoms are usually the first sign my thyroid is a bit out of balance and my meds need adjusting.

Thanks everyone. Hopefully I don’t feel anymore weird stuff and it was just a one off

Sorry to hear about your DH @FuzzyPuffling 💐

So sorry Fuzzy that is very concerning. I hope the consultant can move things forward. Sending hopeful thoughts. 💐xx

Thank you, lovely people.

Oh heck Fuzzy I’m so so sorry to hear this, how worrying for you both. I was thinking I hadn’t seen your name. Keeping everything crossed that the consultant appointment goes the way you need it to. Look after yourself as well as DH. 💐