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....

Oh how annoying… Is there any way of sewing a bit of cotton over the exposed elastic @TeaAndStrumpets? I def wouldn't want to pay £80 either.
Think I’m lucky in that I don’t often get allergies though certain metals irritate my skin but they’re easier to avoid than a fabric!

Finally managed to drag myself out of bed - Sunday is my busy social day so I always sleep in on Monday mornings. However at 9am someone started drilling in the flat above me. It went on for hours too, I think they were having a fitted wardrobe installed or something.

This block of flats is usually soundproof, I never hear footsteps etc even when there was 3 kids living in there a few years ago but it seems that doesn't extend to building work! There has been a lot lately as it recently sold after being rented for over a decade so the new family is doing a full renovation.

My cats are not best pleased at the noise and are being extra clingy, but it does mean I get compensation cuddles

I'm going to experiment!

I managed my three hours. Well 2.5, my new supervisor (I’ve worked with her in a different team for years, so we know each other a little), had enough of me by then. Back in Wednesday morning and then wfh Friday morning. I’ve got rid of my supervisor for the time being, which is probably best for both of us and has made me laugh. We do not see eye to eye so I’m sure she has engineered it for the both of us to have a clean slate. We get on well enough personally but the relationship wasn’t great. I do feel better now it’s done but it was exhausting and sat in an uncomfortable chair didn’t help. So I’m resting now.

Well done @FurForksSake you made it. Rest, rest, rest. The stress/ emotion of it all will be extra draining this week so be kind to yourself. Any way of making you more comfortable re the chair? A cushion or something?

Oh no @DoAWheelie ongoing noise when you’re trying to rest is awful, especially drilling! Poor cats too!

Today we were in a pod at the campus, I should be in my base school in my chair on Wednesday… shall see how that goes. I’ve got physio and gynae tomorrow so I’ll be knackered 😴

Hello and newcomer here. I have fibromyalgia which flares or subsides dependant on what I do physically day to day.
I have one specific symptom that when it flares feel so destructive in that I can't breathe or move without intense pain. I've learned that to treat that symptom I have to go in all guns blazing with medication, otherwise I'm debilitated for weeks. Yesterday was one such symptom flare, so I took the meds needed which cause me to sleep heavily, be dizzy, but blessedly be free of the knifing pain.
18 hours later I'm feeling like I've landed back on planet earth, am a bit wobbly, but thankfully that science has created these ( to me) life saving drugs, as without them I couldn't, wouldn't want to, exist any more.
This is the first time I've ever spoken this out loud.
Thankyou, and love to all of you dealing with your awful situations too

@FurForksSake well done on surviving the day! Best of luck for the rest of the week.

@OdddSox big welcome and hope you feel happy hanging out with us!

Oddsox hi, yes I know what you mean about pain meds. Also heat I find helpful. Glad something helps

Not a great day here as had the dentist for a £275 filling this morning - he gave me an extra mini bonus filling apparently to the one next door, I must look after my teeth better. I hear those water pik things are good.

A lasy from the council rang about an OT assessment form I sent in yesterday, that was quick. Am scared now because she said she was from social services and was I struggling at home? I had to go to the dentist so she is ringing back tomorrow.

I have rested the rest of the day and tried to do the yoga Nidra thing. Have physio tomorrow which is for a sciatica type pain but have told them probably can't do much, we'll see. The SS lady seemed interested in that and asked which one it was. Now feeling a bit paranoid.

Home from work and in bed with a cuppa. Shattered, legs not happy with all the walking around! ☕

@FurForksSake first day's always the worst. Well done for getting through it ❤️

@Orangesandlemons77 when OT called me they left a message saying it was Adult Social Care so I assumed it was a wrong number! It was only when they called back I realised what they did 🤣 They were very efficient I have to say, I received my equipment quickly.

Leftover soup for tea - have a restful evening all 💕

Hi all, another day plodding along. Finally getting round to life stuff thats built up over the last couple of years. I think I am also a bit stuck in freeze mode because its so overwhelming.

@FurForksSake Sounds like a full on week. Hope you manage to get some time to rest and look after yourself. Easier said than done.

@OdddSox Hello and glad today is a better day for you

@Orangesandlemons77 Im an OT and nothing to worry about. The OT just works in the same team as social services. A day to get back to you sounds very good. Hope you get what you need

Hello @OdddSox 👋

Well done on getting through the first day @FurForksSake

Work done and grocery delivery put away here. I'm really achy this afternoon - my hypermobility does better with more movement than my energy levels are allowing right now.

In bed about to put on a meditation/ hypnosis thing to listen to.

Welcome @OdddSox Im glad you’re feeling more human today.

Don’t worry about the OT @Orangesandlemons77It sounds like a positive thing. I remember mine being incredibly helpful and efficient. She suggested various aids like a shower stool and perching stool and an extra handrail on the stairs. That was organised and fitted really quickly and it does make getting upstairs easier having rails on both sides. It wasn’t something I’d have thought of really.

Dark cupboard for two months in autumn.... I can relate these days 😅

@FurForksSake well done you. Hope it gets 'easier'. I say with "" because I know work with chronic illness is never actually easy.

I vibrate most mornings. I try not to think too much about how I feel when I get up. I try and just go on autopilot. Gets me through.

I have seriously over done it today though. More walking about at work than I intended.

@Dozymoo42 I hate hearing any machinery. It really triggers my tinnitus. I just live in my earbuds but not sure that's healthy.

I have heard back from the cottage owners and it is free then week I want so I'm going to go for it. It'll be ok I think though it's not through the agent anymore. It's cheaper now and they w ere the really lovely people who own the big property next door so I don't have any reason to worry I don't think. I have a couple of good friends who live nearby so it'll be nice.

Exactly the same here! It's too hard to resist when we feel relatively normal.

Good news on your holiday cottage @MewithME - sounds like it'll be a good trip.

I've definitely been feeling the vibrating the last few mornings. Have cancelled everything outside of work this week in the hope of having some energy by the end of the week - I've got a day off on Thursday and a friend visiting for part of it, then another friend's birthday at the weekend (probably just a popping round for a cuppa sort of visit).

My current fit note for work (reduced hours/ extra breaks) runs out at the end of the March and I'm trying to figure out what to say to my GP about next steps - I feel like I've plateaued and I'm not sure if I should be doing more, or possibly less, of anything.

Glad you booked your cottage @MewithME it’s good to have things to look forward to.

Rubbish night here, so much pain in my neck and shoulders that kept waking me. Took paracetamol but didn’t do much but reluctant to take codeine GP recently prescribed as it just makes me feel dreadful. I do need to get back to GP to see if there’s something else to try for those type of nights but I just can’t face it right now. Probably tension related, been a lot of things to worry about lately.
Anyway, house is quiet so going to try an Epsom salt Bath and see if it makes any difference and use heat pads today. I’m currently trying out a little massage machine thing I got in desperation from Amazon a while back and it helps a bit!
Sorry I can’t summon the energy to me more cheerful today! This flare just feels never ending.

Morning all!

Lovely day here. Doing a bit of tidying before two house viewings this afternoon. I don't really want more people trooping round, but we have to carry on. I am really out of breath today but have just enough puff to wipe some surfaces. DH is lovely but his idea of cleaning is out of sync with mine!

@TodayIsatrickyone my neck and shoulders seize up when I'm under stress, and it even makes me dizzy. My osteopath is a miracle worker!

Morning all.

Here’s a good listen for anyone with ME - BBC’s Inside Health programme on R4 this morning was all about ME research! It’s so refreshing to hear scientists take us seriously.

https://www.bbc.co.uk/programmes/m002rql7

@Quercus5 thanks! I'll listen to that later.

Same x

I went to see gynae, he did not look at my growth and was not bothered by it. He was very interested in my 30 year history of diabolical periods that have increased to flooding and horror. He believes he can do things to improve them. I doubt that. But I’m going for a scan soon and then he’ll decide what to do with me.

Work again tomorrow. Little and often.

Really hope you can get sorted out. I got so anaemic from periods in my 40s it was hell on earth. They were coming every three weeks and lasting ten days, with excruciating pain after the first few days. The doctors were useless and gave me a complex about anyone medical. I think the painkillers permanently affected my gut, all my food allergies started then. Eventually my blood count was so dangerously low I was put on some medication that stopped my periods and told it would be a 13 month wait for a hysterectomy. At which point I abandoned all my loyalty to the NHS and went to see somebody privately.

Seriously, if I could go back in time I wouldn't have taken all the crap from my GP, I would have gone straight to a consultant. So you are doing EXACTLY the right thing. Xx

@TeaAndStrumpets I have bypassed the nhs and gone straight to insurance. I am still amazed the man said things weren’t ok and k shouldn’t be living with the flooding, pain and everything else. NHS has been total crap and couldn’t care less. I know of this man as I used to work in the same place and had some marginal dealings with him and he’s an excellent consultant. He asked about dizziness and blackouts and I told him I do, but that I also need to rule out pernicious anaemia and pots 🤣