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

Just popping in to say there's a nice new podcast called Get Birding with Sean Bean. I know it sounds like an Alan Partridge joke, but seems nice. I'm going to add it to my bedtime snooze list.

Night night all. Sleep tight.

Morning all!

So dismal here, glad I got out yesterday.

Today I need to take the scissors to DH so he's not a disgrace at the funeral this week. Ever since he retired he has got scruffier and scruffier! Years of wearing smart suits to work has put him right off. It's just one extreme to another.

It's a friend's dad who died. He made it to 90 with fairly good health so that's pretty good going.

It’s raining here too which is a shame. I was liking the dry days

@TeaAndStrumpets 90 is a very good age. All the best for the funeral

Thanks I think at that age it's more of a celebration.

Morning everyone, hope you all have a good day.

I have been to the opticians and now getting my car serviced. The dealership service centre here is very posh, so I have 1.5 hours to drink tea and read plus I can even get a complimentary neck and shoulder massage. Almost feels like a treat!

Was pretty wobbly yesterday after a tough weekend but I feel almost normal today. Reminds me of what life used to feel like.

That does sound indulgent, enjoy!

Another grey day here. Just having coffee sat with my hot eater bottle as usual.

Going to try and get DS to have some lunch soon. Am still a bit worried about him, we have not heard further from the doctors after his hospital admission a couple of weeks ago.

Maybe we will try and get in touch with them and find out a plan.

Hope everyone has a good day

Really struggling here. Not sure if it’s PEM or something else entirely but feeling dreadful so still in bed.
Had a scary episode last night. Watching TV with DH and got up to get my meds when the room started to spin, I actually told him I was going to faint at which point he jumped up and helped me lie down. I was aware of him talking to me, lying me down etc so didn’t fully black out but just felt really out of it. It didn’t feel like usual ME symptoms.
I recovered enough to get to bed and I’m still here. It does more feels more PEM like today. DH was out and about yesterday and I felt okay so just carried on cleaning/ tidying. When I look at my Fitbit I was a lot more active than usual so maybe it was that. Just hard to know sometimes if it’s a seek medical advice situation or ‘just’ ME. I do have a GP tel appointment tomorrow ( re HRT) so could mention it.

@TodayIsatrickyone I would certainly mention it. If you got up quickly, it could be a sudden blood pressure change. Do you have a monitor? Would be a good idea though get it checked.

Do you have a HR monitor too? ( I sound like a right croc don't I?). My HR always spikes when I stand up. I suspect I have POTS as well as MEcfs.

I go through spells of weird symptoms. I often have palpitations but can go days with nothing then have it worse for a bit.

I always say I'm not sure if I am usual ill level or extra ill when I'm coming down with something. I sometimes get an ohhhhhh moment when I realise I have a virus or something.

Take it easy today

Thanks @MewithME It’s definitely hard to know sometimes what’s ‘ usual ill’ and what isn’t!

DH has been rummaging in our medicine cupboard and came up earlier wirh various monitors ( crocs here too 😂) so I’ve checked HR, blood oxygen and blood pressure! Blood pressure is high so I think you could be right there and will mention it tomorrow if they don’t tell me we can only discuss one issue! HR is a bit high but not too bad and blood oxygen a tad low but that often happens in a crash.

I have a heart murmur too so I think I was panicking it could be heart related but I actually have a cardiologist appointment in April so I’m in the system there at least. Tbough they seem to keep cancelling and remaking the appointment, its the fourth date I’ve had which is frustrating.

Sods law too that DH is due to go away for the weekend on Thursday! Hopefully I’ll pick up by then 🤞

That sounds horrible @TodayIsatrickyone I hope you get sorted out. Could it be Labrynthitis? I get dizzy when my neck is stiff but yours sounds much worse. I hope you get some medical advice soon.

I just cut DH hair so lots of white curls on the kitchen floor! The bonus of curly hair is that my very amateur cutting is disguised. I put a hairdressing cape over his shoulders and I wear a nylon cagoule so I don't get whiskers on my clothes!

Still so grey outside. I looked at the weather forecast and wished I hadn't bothered. No end in sight.

It was pretty scary tbh @TeaAndStrumpets but no further episodes today, just the woozy feeling I often get in a crash. I’m still in.

I’m loving the picture you're painting of you cutting your DH’s curly hair in the kitchen wearing a cagoule! 😊 You are right though , hair gets everywhere! Well on on helping him be a bit more presentable for the funeral.

I would make an appt with the GPs and / or get bit checked urgently, maybe they can speed up your cardiology referral, I looked up the heart murmur and it came back with this (see, fainting) sorry hope not to worry you but just text to get it checked out. Kind thoughts

Key Aspects of Heart Murmurs (NHS/BHF Guidance):

• Innocent Murmurs: Very common in newborns, children, and young adults. They are harmless, often temporary, and do not require treatment.
• Abnormal Murmurs: Rare in children, but can indicate heart valve problems, infections, or congenital issues in adults.
• Symptoms: Many people have no symptoms. If symptoms occur, they may include shortness of breath, dizziness, fainting, chest pain, or swelling in the ankles/feet.
• Diagnosis & Treatment: GPs use stethoscopes to detect them. Further tests like ECGs (electrical trace) or echocardiograms (ultrasound) check for structural issues. Treatment depends entirely on the underlying cause, if one is found.

When to See a GP:
Consult a GP if you experience persistent dizziness, palpitations, chest pain, or, for parents, if a child shows signs of breathlessness, extreme tiredness, or poor feeding.
Emergency Symptoms:
Call 999 or go to A&E immediately if you have:

• Severe, sudden chest pain.
• Severe shortness of breath or inability to speak.
• Fainting.

Thanks @Orangesandlemons77 that’s why I was worried really but If I get another episode today I’ll def call someone but things seem to be settling.

And luckily I’m speaking to a GP tomorrow anyway so will see what they say about bringing cardiology appointment forward.
My murmur is a heart valve issue I was born with that’s monitored every 2 years and been stable at every check up. Had an ECG in Nov when I saw GP due to fatigue/ raised HR but it was fine. I’ve had no shortness of breath, chest pain etc which I’ve been told to look out for. Just the room spinning/ ‘almost not quite faint’ last night but yes I need to get it checked with my history.

I think it could possibly be blood pressure related as it happened when I stood up quickly. When I started HRT in Nov my blood pressure was ok. A tad high so she told me to monitor it but it slipped my mind after the first few weeks when the readings at home were okay. It could well be related to that. Have just taken patch off for now in case that’s causing my blood pressure to be high.

Just tricky sometimes working out what’s causing what.

Home from work and in bed with a cuppa ☕

Even more knackered today! I slept like the dead for 10 hours last night, and almost through my alarm thanks to my dodgy ear, but still I feel like I've been to an all-night rave - I wish ...

Caffeine is the third, but mildest of my food nemeses @BerfyTigot The odd cup here and there is okay but everything else is decaf or herbal ☕

Eggs, chips and beans for tea courtesy of DH. Then back to bed 😴

Have restful evening all 💕

Cor @Swanhilde egg, chips and beans sounds good.

I'm doing X2 dinners as usual. How did I end up in this pickle? Autistic carnivore with a veggie mum 🙈

Having a rest before anything though. Been hard graft work wise as usual but at home at least.

Aw he sounds like a sheep with his white curls being lopped off. Very professional with your tabard and nylon cover. Sounds quite sweet. This is what marriage is about! 😊 My ex partner once asked me to shave his head. I did not like it! Was too soon for that kind of thing. We hadn't been together long.

Sorry.. cagoule not tabard! I think visually... That is what my brain pictured 😂

I have always reacted badly to hormones btw @TodayIsatrickyone . Couldn't take the pill without it giving me high BP. Ended up with high BP during pregnancy and preeclampsia. Been on meds since. I was told HRT wouldn't affect my BP and it did. It went scary high for me and I stopped it. Scared to try again.

Stinking cold to add to fibro flare and grey,rainy skies.In bed,as usual. So sick of this pointless existence.
DH is disabled and on benefits and everything is about his health issues and medical appointments. I know its not an illness competition but .....I can't see a way forward anymore for us.

Oh @Hedjwitch that sounds so hard.
Sending good vibes xx

So sorry @Hedjwitch that sounds difficult. Of course it's not a competition but you've got to have some support for yourself too.

Oh dont be nice,you'll set me off! sniff.
Its just that poor DH's health problems are so visible...heart failure,failing mobility etc. He now gets ESA and can't work. So I keep working,full time and look well if tired and a bit stiff. But I'm exhausted and sick of the endless pain and being told to just " man up" ( the irony!). We are in our 60s and had hopes of maybe being able to save for our retirement and travel etc. But that's gone up in smoke.

Gosh...I am having a pity party! Sorry.

@Hedjwitchso sorry, days like that when reality hits are tough, you need prioritising too.
Raining yet again here and cold.
MIL flat out still so I'm back in bed after work.
Had a shower last night but still couldn't drop off until 3am ish.
Still need to rebook hair cut, smear and MOT.
Feels like a lot is going on from all sides atm and itwould be far easier to manage if I'd slept.
Will try again tonight. Love to all

Giving myself over to chocolate and the Winter Olympics this evening. I like it more than the summer ones, all those snowy peaks and very niche wintery endeavours!
Hope everyone is coping this evening. Love and kind thoughts to those struggling.
Had a hospital appointment I was dreading yesterday. It went okay, given my almost phobic horror of ‘medicine’ (the irony, given my multiple conditions) but had a bit of shaky fallout today.
I was diagnosed with osteoporosis last year, a few months after finding out I had leukaemia. Had to see a consultant about that. Anyone here on bone drugs and how do you manage? Because of my cancer there are few I can take but the prospect of taking any freaks me out.

I'm having a pity party too now. Fatigue has whacked me. I'm in a lot of pain today.
DS has been hard work with his autism too since pick-up. Not that he means to but sometimes I am not a saint and cannot be endlessly cheerful when he won't allow me to say something I need to ask or gets snappy with me or unleashes a monologue when I have brain fog and I'm struggling to concentrate on the bad drivers on the school run.

I feel like a big ball of unmet needs. I literally don't have anyone to pick up any slack. I STILL haven't got the Xmas decorations put back in the loft.

I had to put a load of laundry in the dryer...and it was all tangled up. I just didn't have the strength to shake the duvet cover and unravel it all. I sat in the garage and had a little cry. There's just no point though because it doesn't change anything. I just have to get on with it. I can't stop and rest properly.

I feel like lots of people rely on me or take from me and I don't have any support at all really. I mean friends send messages which is nice but there's nobody who will actually physically help me.

Right moan over. Sorry. I know I shouldn't moan. Some of you have it a lot worse. Just got to zero tonight.

@Hedjwitch I hear you. It is hard to accept the life we've got and not the one we hoped for x