What are you up to today if you have a chronic illness? Thread 7

[MewithME]

Last thread 🧵

https://www.mumsnet.com/talk/_chat/5490534-thread-6-good-griefwhat-are-you-up-to-today-if-you-have-chronic-illness

Fill up last one first 😁

Thanks @JewelleryCat I do use loop earplugs and find them helpful. Typical I’ve misplaced them today and need to hunt for them but just using my headphones to listen to my book for now so that’s good.

Looks nice and sunny out. Hope all have a good day.

Waiting on a call from the GP about something, they must get fed up with me!

Also doing the online food shopping order as it is due tomorrow and listening to music.

Feeling the impact of the aqua class yesterday aching all over today! I liked it though. Sometimes it is a difficult balance between doing stuff and over doing it.

Afternoon/evening. Loving the tea loaf recipe- might give it a go. Good to hear what everyone is up to- such a nice thread.

Having a few days respite from severe symptoms thankfully . Had a lovely massage Saturday which seems to have helped with pain . Might just need to do it more often!

Home from work and in bed with a cuppa, cake and smelly cheese! Need it and thank goodness that's my working week over 🥳

Couldn't come soon enough - I am exhausted and my legs are so painful. Have taken multiple painkillers and have my heating pack on. Watch says I slept better last night, so that's at least something 😴

Baked potatoes for tea and another early night. Oh, and I've just heard the rumble of thunder 😲

Have a peaceful evening all 💕

Your daily smelly cheese is making me smile @Swanhilde

Made it through the day - mostly analysing lots of data/ feedback today which I can easily hyperfocus on... until I stop then I absolutely cannot get back into it!

The weather has been so weird - had my lunch outside then next thing it was dark and pouring with rain. Definitely an early night here too.

Hello all. Just checking in and will catch up properly this evening. I got suckered into another thread about MEcfs so have neglected this one as I am.....tired!

Had a huge meeting yesterday but all went successfully and I am v happy with the outcome. I am WFH today and will take it very easy.

I knew I would exceed my visible points and I did, so I am not going to do much today.

Hope you are all ok as you can be. Will read your news later.

The midweek klaxon! Thanks @Swanhilde . We had a spectacular storm yesterday just as my meeting was reaching it's conclusion and findings!

Well done on your successful meeting @MewithME

Felt very weird overnight - kept swapping between shivery and boiling hot. Not sure if this is a LC thing, or a perimenopause thing (I was on HRT for a few months last year but progesterone made me feel awful so stopped it). Anyway, don't feel too bad this morning, just tired.

Fairly steady day at work today, with a break to do the online singing group later this morning.

Morning everyone!

@MewithMEive noticed loads of threads about ME/cfs lately, is it just me or have there been more around?

@martha79shivery and hot sounds horrible, sometimes when my nerve pain is bad I get goosebumpy and shivery, otherwise I'm terrible at regulating my temp but it's not so extreme. Glad you havent woken up with a bug or anything though!

Another quiet day today. I had my migraine botox Tuesday which always makes my neck flare up so I'm taking it easy and trying to not look down or lift anything (!). I cooked dinner last night and ran out of energy halfway through. Felt all faint and my heart was racing. Had to keep sitting on the bin.

Morning all, I'm sitting up today which is progress! I was fine for a few days after my cataract surgery then the PEM hit which I should have expected. However I then got an awful attack of vertigo which lasted a couple of days. I just felt seasick whenever I moved my head, or tried to read. Apparently my brain is struggling to reconcile the different images from my eyes and has gone a bit doolally. It felt better this morning but I'm getting back on the sofa after breakfast!! I'm avoiding screens for a few days and hope it will ease off gradually. Once eye no 2 is done next month it should settle.

Much needed slow-ish day for me today. Have an acupuncture session in a bit then I am meeting a friend for coffee ☕

This afternoon will be dedicated to active resting 😴

Have a recuperative day all 💕

@bedfrog would a perching stool help you when you start to feel like that?

Slow day for me here as well. I haven’t the energy for much which sucks a bit

Morning all, glad the meeting went well @MewithME

@Marthado hope it’s not a bug or something and enjoy your singing!

@bedfrog that’s horrible when fatigue kicks in mid cooking.

@Swanhilde hope acupuncture helps a bit

@JewelleryCat take it easy today if you can

@TeaAndStrumpets good to hear from you and glad there’s some progress today though PEM and vertigo sounds an awful combo. Does make sense that your brain is adjusting though and good plan to have a screen free few days.

Not a good night here, early morning wake up and worrying about things! Things that havent even happened yet that Im worried about how I’ll cope. Things we need to deal with and just finding too overwhelming to sort out. I can put it all into perspective in the day time but at 4 am I think I was verging on a panic attack. Ended up focussed on breathing and listening to a meditation and eventually went to back to a fitful sleep.

Resting this morning and then DH and I are going back to the woodland dog park this afternoon. Hoping it stays dry! Going to grab a takeaway coffee en route so I can sit in the forest with it and listen to the birds while dippy dog sniffs and mooches around. So relaxing last week we re booked! Given this mornings episode it’s perhaps needed today.

@TodayIsatrickyone 4am is the worst time for worrying about things!

Hope your seasick feeling calms down quickly @TeaAndStrumpets

That's me done with work for this week - today has involved deleting a lot of old files which was quite therapeutic. Only did half of the singing session as it felt quite hard work. Have done a few bits in the garden and had a short walk, and am now settling on the sofa for the evening.

Cracking storm yesterday. Was quite happy minding my own business until the sky went black. Unusual for a storm so early into April. Can't say I've seen one pass over quite so quickly either. It was all over in 5 minutes, my husband works outside in a garden shed and said he felt terrified and he's not normally a wuss.

This week has been a bit all over the shop after I locked myself out of my laptop at the beginning of the week so I'm having to rear end it all tomorrow and hopefully some of the weekend. I wouldn't normally but I'm so far behind. So doing a small amount this evening too as I don't seem to have chemo fatigue this week.

In other news I've had sinusitis symptoms for ages and just put it down to chemo and thyroid issues. I have been prescribed antibiotics so fingers crossed I stop feeling like I have a permanent cold and start feeling normal again, well as normal as I can do really.

Morning all.
Dull & damp here.
Have a good Friday 😊

@Oioiqueen I hope your sinuses feel better soon, it's an awful feeling.

Restless night again for me, although at least my temperature was mostly OK this time. Planning a quiet day with just bits of housework and gardening.

My shower seat is due to arrive in the next few days, but I've got to wait a few weeks for the rehab therapist to be able to visit and make sure it's set up safely. Also got a text recently saying they've referred me to the talking therapies service so waiting to hear from them about a first appointment. I am slightly worried about how long that might be as I know their waiting lists are huge - I was referred about 8 years ago when I had a spell of bad anxiety, and never actually heard back. I'm not sure if I missed a letter when I moved house, or if I got taken off the list because I didn't respond when I was invited to an 'anxiety group'. Anyway, I feel like the therapy would be really useful at this point - my brain is churning out all sorts of past unresolved nonsense, which would be good to deal with.

Bit of a grey day here today. Got a phone call this morning about a sleep study and then blood tests at the GPs this afternoon. Not very exciting but there we go.

Have asked the GPs about some liver function tests as I am seeing the surgeon Monday about the gallstones and they haven't done them. The GPs will be getting fed up with me!

Apart from that just need to do a couple of housework things and encourage DS(17) to do his homework and go for his second Men B vaccine later on.

I expect others find this too but with things like fatigue the mental load / responsibilities can be hard.

I try and delegate what I can / leave them to got on with things as much as possible, and have an old fashioned Filofax which helps a bit.

Somehow find it easier that you can flip through it rather than it being on the computer, but I know a lot of people have online diaries these days.

Anyway hope you all have a good day

My acupuncturist 'dyno-rodded' my sinuses yesterday and my head feels much clearer today ☺️

Sleep is improving so I'm off to the allotment this morning 🌱

Have a good day all 💕

Morning, didn't make it to the forest yesterday. Had another sudden scary dizzy/ sudden unwell episode that this time later developed migraine type symptoms so ended up in bed trying to sleep it off. Still feel awful today so staying in bed. Not sure if it’s an ME crash or migraine or something else but utterly fed up right now.

Have finally got cardiologist next week so good timing re the sudden dizziness again I guess but thought/ hoped it was a one off.

Feel very teary today, this week marks 21 years since a routine op followed by infection was the trigger that eventually led to ME diagnosis. I don’t know what to say really, just never thought it would be such a long haul.

Sorry I’m all doom and gloom today.
Hope you can all have a peaceful day.

Oh @TodayIsatrickyone that is such a tough anniversary, I'm sorry.

@TodayIsatrickyone Sorry you aren't feeling great. It's hard when you want to do nice things & your body lets you down. Tough anniversary too. Can you have something nice later? Film night with goodies?

At work today feeling positive but my tens machine is on the highest setting.
Im wondering if my patients can feel the vibrations through my hands 😂im a podiatrist.
My latest surgery was cancelled because .y anaemia is back so Im off to do the yearly battle with my GP to get an iron transfusion.
And trust me its a battle I just dont have the energy for.
Last time I got the CQC involved.
I do not absorb iron pills. Ive been on 3 a day for 2 years and they have made not one jot of difference to my levels. My GP does not believe me.
Fighting the system is worse than the disease quite honestly.

Morning everyone

@Swanhildewell done with the dyno-rodding! Must be a relief!

@TodayIsatrickyonewhat a horrible anniversary. It's just so awful that one thing can happen to us and our whole life changes suddenly. I hope you're being gentle on yourself and that you're feeling a bit better soon

@Gettingbysomehowlaughing thinking about you making people's feet vibrate with your TENS!! Good luck with the transfusion.

Managed some housework and a short walk last night and slept like a log. Woke up at 9.45!!! I've got some seedlings to pot up today and need dh to move some pots around for me. I've got a massive green bruise on my forehead from the botox too, thank god for my fringe feeling a little more positive today so trying to make the most of that.

Thank you lovely people. It will pass at some point.