What are you up to today if you have a Chronic Illness. Thread 11 🧵Last of the Summer

[MewithME]

Link to last one https://www.mumsnet.com/talk/_chat/5556429-what-are-you-up-to-today-if-you-have-a-chronic-illness-10-summer-edition

Thank you for being here, friends old and new and sharing our gentle chat, trials and tribulations.

You know the rules though...let's be good and fill up the last one 😊

Glad you persuaded DH to go @restinginpjs and hope the sleep did you good.

That’s a spot on summary of our little corner @Oioiqueen 😬

Hope you get to see your mum @MewithME

lovely to have DD home and telling me all about her week. Dippy dog ( my shadow) is currently curled up in her room instead of in my room so she must have missed her too!

I’m stressing a bit about having to phone the GP tomorrow but my pain has been just awful over the weekend and I’m desperate for someone to work out whats going on and give me pain relief that actually works. The change of medication the GP suggested has done nothing. I’m just anxious about getting through the receptionist to even get an appointment as they were just so awful when I was having stroke symptoms initially and wouldn't see me so now I get rather anxious if I need to call. Last time I did an online consult but that took days so I need to brave tje phone first thing.

Good luck with your GP @TodayIsabetterone . Attempting to contact HCPs is one of life's Very Big Stressors, I think.

I have such a phobia about contacting GPs . The trust went when I was with a very odd one who made me feel like a nuisance.

One tip I find has worked for me is not to be myself on phone calls etc. I was fascinated to observe when DH was away for 10 days and left me to do any emails etc for business I found myself writing exactly like he would. None of this, hope you don't mind, thank you that's very kind, malarkey. Just please do this, thank you. Straight to the point. I have a dear friend who is unapologetically business like and quite bossy. I don't think she's ever had a moment of self doubt in her life. On occasion when I'm feeling worried about contacting people I think "Just pretend to be Friend C" and it really does help!

Hi, I’m new here, 34, married, no kids yet, long Covid for 4 years but trying to figure out exactly what is wrong with me as all my symptoms are getting worse. Was originally on an ME/CFS diagnosis pathway but my bloods have thrown up some autoimmune markers, so Joe having great fun going back and forth with the GP and the new advice & guidance protocol.

Sick of being tired and in pain all the time and not able to do half of what I want to, or paying for it if I try. Also DH and I are trying for our first baby and I’m terrified that my health is going to prevent that.

Amongst all of this, my dad was recently diagnosed with terminal lung cancer. The hospital are doing everything they can to prolong his life, but it means I can’t really talk to my mum about my health issues as she has so much else going on. And there’s only so much you can discuss with friends before you’re a burden (at least that’s how it feels sometimes! I’m hyper independent so it’s not a great combo for my personality)

sorry that was a hell of a lot for an introduction! 😅 Hi again!

Hi @B242 and welcome tbough I’m sorry you find yourself here! It sounds like there’s a lot going on for you just now so feel free to offload, or just join in our random chats 😊

I’m very sorry to hear about your dad @B242 and welcome. You can moan here as often or as little as you want, we understand

Morning all
Good advice @TeaAndStrumpets about channelling someone assertive! I put aside my ‘I’d like’ and took DH’s more blunt approach of ‘I need’ to see a doctor!
Result being a face to face appointment later this morning. Such a relief. Now to get across what I need to and not just cry in pain and frustration of 4 months of this. DH will come in with me so is there as back up at least. Just hope they can suggest something that helps.

Hello @B242 and welcome. I'm sorry you're having such a tough time of it.
I was originally thought to have ME but much later got diagnosed with a variety of AI conditions. Still plodding on!

That's the ticket...strategy! It sounds like an excellent plan and your DH will be useful at least for remembering what is said during the consultation. Hope it gets results.

@B242 welcome and hope you get some answers soon. I think there are others on here with Long Covid.

So sorry about your Dad. Mine died many years ago now of the same. There was barely any treatment in those days so at least your Dad will get a lot of help I hope.

It's very thoughtful of you to keep everything buttoned up for the sake of your Mum. I have adult daughters and they often do this to me and I sometimes wish they'd share a bit more! You know your Mum though.

Welcome! So sorry about your Dad. You have a lot going on. In my experience, family are not the best at understanding anyway. People 'get it' with some illnesses but MEcfs or autoimmune...you look ok ...so they don't! Even good friends who are kind and caring...don't really get it.

Glad you have found our corner. We definitely do get it! It's not a club you want to be in exactly but feel free to chat and moan here 😊

Morning all, well done on getting your appointment @TodayIsabetterone, I hope it's helpful.

Welcome @B242 - I also have Long COVID, but similarly my GP didn't think it was the whole story. I'm also hyper independent - very useful at times and definitely not at others.

Sleep was all over the place last night and I've woken up with a bit of a sore throat and itchy ears so trying to fend off potential germs with hot lemon, ginger and honey. I've got a fairly quiet day at work, and a counselling appointment later (where we will no doubt cover the hyper independence thing, again!).

@martha79 do you know, it's interesting, nobody ever mentioned long covid to me at the doctor's. It was covid that triggered my Mecfs and I don't doubt my diagnosis but I'm not totally sure what makes LC different to be honest? Is it the breathing issues?

Sorry if I've asked before...I'm getting badly forgetful.🙈

Signing in, late as usual!!!
My parents are visiting for a few days. I'm missing out on today's activity because I'm exhausted. It's so disappointing.

My understanding is that there's lots of overlap, but you can be diagnosed with LC without meeting all of the criteria for ME, as long as they know/ strongly suspect it was triggered by Covid and you have a certain number or type of symptoms. You don't have to have breathing issues to have LC - although I've recently done a breathing course, they don't reckon I have any structural lung damage, but some people seem to and are really wheezy/ have long lasting coughs.

Morning.

Keep forgetting about the thread. Sorry!

Hypermobility syndrome disorder. (And the usual handful of stuff that goes with it. )
Autistic

Probably in autistic burnout after a few difficult years.

Used up this month's spoons on a holiday.

Had a back spasm yesterday so need to be careful today physically. (No putting the holiday stuff back under the stairs, not that it is ready yet. )

Main task today will be dealing with the frustration of brain thinking my body can do more than it can.

Morning @BlackeyedSusan ..no need to apologise. We're here when you remember 😊

I think that frustration you describe is just my life now tbh! I have to be grateful for smaller experiences. I'll be back at work soon listening to colleague talk about amazing travels and DIY projects and all sorts. I will smile inanely as usual 🙈

Waves to @BlackeyedSusan your brain is TOO helpful. Ignore it! Mine often thinks I'm in a much younger fitter body, then I get over confident and knacker myself. Glad you had a nice holiday, hope the rest did you good.

Hi @bedfrog it's awful when you want to see someone but it wears you out. Glad you had some time together though.

@martha79 I'd had mecfs for a very long time but Covid totally did for me as regards energy. My spoons are permanently tinier than other spoons (coffee? Mustard?)

Oh @MewithME the world and his wife seem to have exciting energetic lives but you are also playing a role by letting them tell you about it 🙄 Your smile is more mysterious than inane. They probably daren't ask where you've been/what you'd done because if you told them you'd have to kill them 😳

Well I have been spared visitors for several days running. Had to cancel dd2 and family due to infectious toddler. They now have norovirus so I'm glad they aren't here! They have been on holiday so are working out how to safely travel 80 miles back up the motorway. Oh dear.

This afternoon we are doing a dummy run for DGS who's got a college audition tomorrow. We will listen to him play his guitar and applaud! Don't suppose that is actually what happens 😄

Haha love it ....yeah .. all enigmatic me....keep em guessing 😂

So glad you've swerved norovirus. My friend got covid yet again on the flight to her holiday and felt awful while she was there. It does actually make me happy about my humble cottage holidays in UK. 😁

Hope the audition goes well. My friend's son is mad on music. Just been listening to his first Spotify release. It's genuinely brilliant. I think I know a future rock star ⭐

Yes there is so much on offer post gcse for someone who didn't cope well with school. DGS taught himself guitar and can play piano by ear, so I hope this will help him succeed at something.

@TeaAndStrumpets did you or your DGS watch The Piano? There was an autistic teen on there who taught himself to play the piano by ear

No but I can well believe it! We gave our old piano to DGS this year and he soon started playing. He says piano chords are just like guitar chords (?) and he can play what's in his head.

https://meassociation.org.uk/literature/items/long-covid-and-me-cfs-are-they-the-same-condition/

Here's what the ME Association thinks about ME and Long Covid.

I understand that a defining characteristic of ME is post exertion malaise/symptom exacerbation.

I think they are saying that if your Long Covid doesn't really improve over time and you get PEM then maybe it's worth considering if you fit ME picture?

I saw an interesting article in Nature saying Covid is particularly good at reactivating old viruses laying dormant in some people.

Sorry if that's too much info

Thanks for that.
When I was first diagnosed with ME the consultant said it was possibly a reactivation of glandular fever from years before. (This was pre Covid)

Well back from GP who was lovely and actually examined the shoulder/,arm before announcing he thought it was damaged tendons rather than being stroke related! All very confusing but he’s given me different painkillers to try until I see the physio in a couple of weeks and again, to come back if they don’t help to try something else. Apparently I’m not to lift my arms above my head if it’s hurts which is exactly the new exercise the physio gave me! Bit frustrating I wasn’t seen face to face 2 weeks ago and had the right diagnosis ( I think 🤔) then.
Im absolutely shattered now but I have a plan at least. A plan helps.

Fingers crossed for DGS and his music course @TeaAndStrumpets
I wrote a long reply yesterday about my brother hating school and failing every exam ( except woodwork!) and eventually taking a similar route via a music access course which then led to a place in a decent music college and an eventual career in sound production and TV in another country. Being vague as it’s quite outing but he found his niche eventually!

My DS is a part time rock star 😂 I’m actually not joking. He has a full time job but plays guitar in a band and is using his holiday allowance shortly to go on tour. 😬
Luckily his manager is supportive! Anything they earn goes straight back into paying for a recording studio so it’s a hobby not a career but they’re certainly having fun with it!

I wish I could do that sometimes (I’m autistic) but sadly don’t have that talent. I’m sure your DGS will go on to great things