What are you up to today if you have a Chronic Illness? Thread🧵12... The clocks have gone back!

[MewithME]

Here we are again...

Link to last one https://www.mumsnet.com/talk/_chat/5569411-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-11-last-of-the-summer

19 posts left on the last one, shall we fill it up first like the good chatterboxes we are?

Gosh that must have been quite traumatic. Very nasty. I'm glad you were properly looked at. 💐

@TeaAndStrumpets Thank you. I had a fantastic neurologist. Now mainly under rheumatology. Not quite as good but basically have a direct line if something urgent happens. So pretty well looked after when needed.

Oh and a nice day for it too. Hope the sunshine did you good!

I am under rheumatology for my osteoporosis and I was taken aback at how nice the consultant was! The clinic is a bit basic - portacabin but quite good parking 😀

Nothing like good parking!

I am so annoyed today. Had paid for a private consultant appt several months ago after over 2 years of being ignored and symptoms seperated by GP so not seeing the full picture. Cobsultant v shocked at care and req'd urgent referrals for MRIs and biopsies as suspects chronic illness. 3 months later and just had an appointment made with a GP in the next town sent on NHS app. I called to find out if this was for the urgent biopsy he recommended 3 months ago. Apparently no, it is another GP just having a first assessment appt and no physical test will take place. I don't understand why a GP is needed, again to check the globally reknowned consultant made the right call? I thought I was saving NHS money going privately? Anyone had similar experiences? Is it just better to go private for all ugent scans and biopsies? I cant really affors it but I am so paranoid they will dismiss me again as my own GP has done so many times.

Hi everyone.
Today i have just laid in bed all day feeling terrible. This time of year hits me so hard

That's pretty awful. Hope you get something sorted soon. You'd hope for a joined up service but even within the NHS the hospital and GP don't seem to communicate too well.

Sorry you feel bad. It's very disheartening when you realise this is probably not going to get better. For me (cfs/me) it's down to managing day to day and finding different things to hope for. So tedious!

Thank you Tea. It is the push pull of it all, chasing and pushing then getting something so minimal just to keep you dangling rather than moving forwards. Exhausting. I have had 2 years of having everything looked at seperately and not being able to work, having to sleep in the days, sometimes barely able to get out of bed and just fed up of it.

Today dd wants to find a doll in a charity shop and we have a lot of boxes to go to the tip. Dog needs walking. Was up sick in the night so hoping I can keep going until lunch at least!

Oh that's a miserable start to the day if you wake up feeling queasy. Hopefully the perfect doll is out there waiting for DD then you can get home and chill out.

I do find a diagnosis from a consultant is helpful because once it's in your notes the GP stops questioning it, even if they don't help much.

Morning all,
A quiet one here as got the osteopath later and need to rest around it. Not great timing having 2 appointments on consecutive days but I wasn’t going to turn down the scan appointment yesterday as would have been weeks at the main hospital. It confirmed inflammation in the tendons which is helpful I guess but they also felt I would benefit from a neck scan but goodness knows how long it will take to see the specialist to ask about that as the shoulder took 6 months of ongoing pain before a referral. Frustrating they can’t do both at the same time as it’s obviously connected but yes I agree the NHS doesn’t seem very joined up at times. I can’t really afford the MRI privately and also worry that they wouldnt accept it anyway so I may just need to wait and hope the pain eventually passes, probably by the time I get to see the specialist!

Im sorry to hear you’re having such a hard time @HisStericalTestes and hope you can get some clarity with your upcoming tests.

It’s a hard time of year for sure @IncompleteSenten (clever user name!) and frustrating when we are resting and resting but not feeling any benefits. Like tea I’ve had ME/CFS over 20 years now and I do find winter generally harder though the very hot weather this summer didn't do me any favours either. I’ve been better lately with the autumn sunshine though.

Hope you can get an emergency osteopath appointment' soon @TeaAndStrumpets and get a little bit of relief. Hope the scan and tests don’t take too long to come through for you.

I got a cancellation for this morning, lucky because the osteopath is about to go on holiday. I slept on my "bad" side so now my hand's gone numb again...hope he can sort that! A bit of help for my sciatica wouldn't come amiss either.

I read on google that nerve entrapment can heal itself and I hope this is true in my case because it comes and goes. I can understand you could do with a scan though because it sounds much worse than mine 😒

My neck scan will probably be at our new local diagnostics centre. It's funded by a consortium of local GPs and so they can refer direct. It is 100x better than being sent to the county hospital.

I read the government full advice on emergency readiness and told my husband the details. Because he'd paid zero attention to all my previous conversations on the subject he is aghast! I would very much like it to not happen before January (or at all!) The new house has a septic tank and there are several wells nearby, but this house is a different kettle of fish! Like many I'm sure.

Great news that you got a cancellation @TeaAndStrumpets and I hope it helps. The local centre sounds excellent.
My ultrasound yesterday was at a nearby chiropractic college that I’d been looking into for a private one in case the GP wouldn't refer me. Apparently they are taking some NHS patients to help with waiting lists. It was so much easier than my usual hospital ME wise for me. DH literally parked by the door, the receptionist was so lovely and helpful, the waiting room seats comfortable and quiet and seen dead on time. So a very positive experience!

I probably should read the advice. I’ve taken in some of it in and began to get in a few extras like bottled water and UHT milk but probably guilty of sticking my head in the sand a little as I don’t watch daily news anymore as it sends my anxiety spiralling!

That sounds so nice! I must admit I wasn't sorry to have private cataract surgery. The NHS sends patients all over 2 counties to the private centres but there's no choice where to go or how long to wait. Too tiring!

I have been asked to do yet another home BP trial. The first 4 days results were a bit high last time because I was in a crash and really anxious. The last 3 days I was getting low readings. I had hoped they'd average them but no such luck!

Oh heck, that’s frustrating about the BP. Though good in a way the surgery want to keep an eye on it I guess. Fingers crossed for a calm few days 🤞

Yesterday was a (lovely but) very people-y day so I've had a quiet morning. Off for my massage shortly, which my legs are crying out for, and then more rest ☕

No plans for tomorrow thankfully ☺️

Yes I'm going to have to be be unflurried for 7 days in a row😳I was so proud of getting it down to 109/77 too.

The osteopath said the same as you about the surgery, it is their job.

Hope you survived your appointment. It is very intense. The worst bit is all the chatting, I could barely string a sentence together afterwards, a sure sign of fatigue. Sometimes I'l have to edit MN posts multiple times due to writing gibberish and typos! I get it with migraines too.

That will do you good @Swanhilde !

Sorry to hear so many struggling at the moment

I’m just off very shortly. I’ve literally just made the connection whilst lying flat before going that if I can get a morning appointment, rather than late afternoon I have less PEM! But yes as you say the chatting is tiring in itself so hard to know if it’s the treatment or just getting there and interacting that causes the increased fatigue afterwards. A combination I expect!

I’m glad in a way I’m not the only one who edits frequently for typos! I’m terrible for it and then still notice errors once I’ve posted!

Quiet day today, in bed with a cuppa ☕

Kettle's on if anyone wants a brew? Have a peaceful day all 💕

Rest well @Swanhilde and I’d appreciate a decaf please. ☕️

Up and organised as the oven repair man came first thing though I’ll likely be on bed rest this afternoon. Oven fixed finally so we may celebrate with a shepherds pie for dinner! 😄 I may suggest DD makes some scones over the weekend too, we’ve all be craving them since our afternoon tea this week.
Thinking of a short walk to my bench with dippy dog while it’s mild and dry. Surprisingly I don’t feel too bad after yesterday’s treatment and pain feels manageable.

Hope you’re not suffering too much today @TeaAndStrumpets and everything feels a bit looser after being stretched and moved around at the osteopath yesterday.

Have a peaceful day all and @MewithME its very nearly Friday at least!

Yes a peppermint tea will hit the spot! Many thanks.

I am feeling very sore after my osteopath treatment yesterday. Arm and neck still tingling and buzzing, and face is feeling rubbery. I had a lot of very deep massage on my hips and they feel a bit looser. I know I'll feel rubbish today so trying to relax. It's difficult when everything is sending little twinges of protest.

I've bought a 2027 desk diary and filled a few days in just now, dentist appointments etc. I put a few entries on the wrong days (of course!) so it's not very presentable. The trouble is I'm supposed to rest today so I am looking for small useful things to do, but to be honest my brain is actually in a fog! Lesson there.

Glad you survived! I had such a long tale of woe for my ostepath he treated my stiff neck and sciatica in the same session.

A walk sounds nice! Enjoy the sunshine.

@TodayIsabetterone What luxury to have an oven again. All ready for some hearty winter foods. We had to have our oven mended after the house sale (grudgingly) and a nice little chap came and was very reasonably priced. We rarely use it but had put it on the fixtures and fittings list.