What are you up to today if you have chronic illness part 2?

[MewithME]

Thread 1 here
https://www.mumsnet.com/talk/_chat/5332156-what-are-you-up-to-today-if-you-have-chronic-illness

Come join us for our ups and down and daily natter.

Thanks @TeaAndStrumpets

Yes it has been a huge amount to deal with. It isn't the Ritz! 😂

I'd say it is a budget hotel but at the higher end of the budget range.
The insurance are paying for the room, breakfast and car parking and they have said they'll cover incidental expenses like having laundry done too! I've yet to sound them out on whether there is an allowance for other meals, but I'm reckoning if I have a good breakfast each day then I can manage with snacks etc if needed.
It is near a nice park and quite close to some friends that I visit each week anyway.
I can use the swimming pool/ jacuzzi/sauna for £5 a day which is good value. There's also a gym and exercise classes but I'm unlikely to use those ( unless the do yoga for the chronically fatigued.)

I've emailed the reception to ask if it would be possible to have a room in a quiet spot away from the bar and the function rooms!

I am feeling pretty overwhelmed and wobbly about it all really. I'm trying to frame it as a bit of a "retreat" where I can manage with fewer things and maybe have a bit of a simpler life for a few weeks, but I'm guessing that keeping an eye on what is happening at my flat and dealing with insurance company/contractors and the @#!%? management company for my flats who caused the problems by doing an inadequate repair years ago will add complexity.

I'm struggling to think about what I need to do before Tuesday and feeling really knocked back by it, hence the lying down and making lists!

@EducatingArti I hope it won’t take too long to settle. Strip the bed of hotel bedding and make it up with your stuff. I’m sorry you re having to navigate all this.

@MewithMEhope the ECG goes well

I WFH today which was lovely but I have to be in the office Weds/Thurs and I usually struggle with 2 days in a row. I’m already looking forward to Friday and getting to the weekend. I actually like this time of year as it feels more reasonable spending loads of time in bed when it’s autumn/winter than the summer if that makes sense!

@EducatingArtithat sounds enormously stressful, take care!

@BerfyTigotI can just about do 20 mins too and was also pondering a perching stool or a stick or something! I’ve been mapping out benches in my mind but still not sure I could manage much longer distances yet.

@MewithME @FurForksSake
Thank you for your thoughts and encouragement. I'm feeling a bit calmer now having spent some time randomly scrolling

@BerfyTigot Mine is a folding stick with seat from Amazon. There are lots of variations if you search that but I’ll try and add a pic. ( I’m not very technical so may not work 😂) I can just about get to a nearby bench but I’ve been caught out by people sitting on it sometimes and then I’m stuffed so it’s definitely helpful.

@EducatingArti Gosh that does sound stressful, I think it’s totally understandable you’ll be anxious about needing to move out especially with short notice but I think the build up will perhaps be the hard bit and hopefully once you’re in and settled, it will be a bit easier.

Another sofa day.

It's a beautiful bright day here, not a good day to look in a mirror! I have just pulled out a few chunky dark whiskers from my upper lip. I'll swear they weren't there the other day.

Apart from my high end beauty routine there is nothing to report!

Morning!

I have just filled my supplement and medication box for the week we are away. DH is getting sick of the lounge looking like a pharmacy so I’ve bought a big dosette box and will fill it weekly.

I will try to fill the bird feeders today, that will do me!

@FurForksSake they are so handy! I have terrible short term memory so knowing I have really done the thing I meant to do is very reassuring. I still forget the odd one but I reckon that's better than taking an extra tablet in error.

I hope the birds enjoy the treats. We have all sorts of wildlife visiting our garden, squirrels, lots of foxes and the odd muntjac deer. We have had a litter of fox cubs every year from the same pair, but I think one is missing this year so we'll see if they find a new mate. I know foxes are vermin but the baby foxes are very cute to watch.

Morning! Big event here in that I drove myself to the hairdressers today which I’m rather chuffed about. I don’t go very often and if I do DH drops me off but I’ve been feeling a bit like I’m losing my confidence to go to places under my own steam a bit so I pushed myself today as I woke feeling okay so that feels good and hair feels better!
Home and resting but managed to get a telephone appointment with my surgery today so I can discuss the HRT medication that I think has been causing issues. Hoping they phone soon then I can fully rest but I’m relieved I don’t need to wait another month which was the original appointment! I know they’ll say the medication is just the same but a different brand but the last 2 weeks I’ve halved the dose and things have been much better. I’ve also been strict with my diet for a few weeks ( no carbs/ sugar/ gluten) and that always makes a difference so may be that. 🤔

I use those little med boxes too and find it really helpful to see if I’ve taken them or not!

@TeaAndStrumpets gosh the wildlife in your garden sounds fabulous! Especially the deer! We get plenty of birds, squirrels and an occasional hedgehog. We have had foxes but I haven’t seen them for a while. I once looked out to see what had set the security light off very late one evening as it kept going on and off. It was a whole family of foxes playing in the garden and jumping on and off the wall. So lovely to watch them 😊

@Hotbeverageplease wow well done on your expedition to the hairdresser!

I have really lost confidence driving because it is so tiring. I made myself drive round the block a few months ago just to make sure I still could! Hope springs eternal that I will get back into it one day.

Yes we have a rather large overgrown garden, lots of brambly corners for fox burrows. The deer I think come from the woods a couple of miles away, they presumably have a little trail through people's back gardens.

When we first moved here we had hedgehogs but haven't seen any for years, so that is very sad.

It’s so rare for me to drive too, if I’ve an appointment its just easier for DH to drop me so I’m not having to park, walk far etc or worry about feeling too unwell to drive home but I just felt like I might manage it today so super chuffed I did as it was nice to feel a bit more independent! Pretty whacked now but hoping for a sleep.

Our garden is a bit wild and brambly too which sometimes stresses me out as DH does his best but is medically retired so has limitations too and there are always parts that need work. The ‘to do list’ is long! However I do appreciate the space and the upside of the wild bits are that it’s popular with wildlife and the neighbours cats who like to snooze in various spots. Well they did until we got the dippy Daschund and now they just give me ‘ what did you do?!’ looks from on top of the wall or shed! 😊

I messed up this morning and slept through and missed my medication monitoring and ECG booked for this morning at the GP surgery. Feel really bad about it, have apologised and re-booked. It was at 11am so not that early either.

I am getting a flare up with pain and fatigue, it has been quite a stressful week with a few things and it is catching up on me I think.

I cancelled meeting MIL for lunch, she has other people she knows there anyway.

Trying to be kind to myself but feeling like a bit of a mess. I also ran out of my meds to soon and had to ask for more and admit I have been taking extra - I thought they would think badly of that but a pharmacist got in touch and increased the dose and issued another prescription.

It's a big city centre GP practice and they seem helpful, I was a bit wary after having not a very good GPs in the past.

I've never missed an appt there before, anyway it is re-booked now for a few weeks time (not urgent just a yearly review)

I binged watched the rest of Riot Women, is pretty good. The thing I didn't like is all the men are portrayed badly, I don't think all men are like that. Not ones I know anyway, although I have certainly met some like the ones portrayed in the show.

Hope everyone is doing OK, I have just been catching up. Kind thoughts.

@Orangesandlemons77 we all do it! I missed the first part of my online cbt yesterday as I simply forgot. I’m sure I’ve missed something today but that’ll have to be dealt with when I remember.

definitely try to be kind to yourself, anything else won’t help and just leaves you feeling worse.

i watched the Essex witches today with rylan and Alice Roberts, I enjoyed it!

im now waiting to pick up ds1, choir was cancelled. Then we have to go home for 90 minutes, pick up ds2 and then drive to ds1’s violin lesson. All a bit mad. Dh is at a leaving do.

@Orangesandlemons77 it is perfectly understandable being too tired to get in for your ECG, sort of emphasises the point that you are under the weather! I'm glad you have a decent GP now; I had an awful one for years and just avoided seeing her. A friend of mine lived near her and apparently she was awful to all the neighbours too! I still hate going even to my new GP, my BP shoots up and I have to do readings at home.

@EducatingArti just wanted to send you some moral support. Hopefully it'll be a nice cosy room, and you can leave day to day worries behind for a bit then go back to a lovely sorted-out home. There are some good ideas online for healthy things you can eat in a hotel room, mostly from people who travel a lot with work.

I have a GP appt this afternoon to discuss ongoing fatigue, after the specialist ruled out my underlying health condition as the likely cause. Wish me luck

Hope you get some answers @VikingNorthUtsire

Good morning! I managed to get the kids up and out of the house and to school and I had a shower with my new espa shower gel. I have physio later so no option!

Feeling very accomplished but obviously now stuck on the sofa with the heat pad.

ds12 has gone to school for 12 hours, he’s volunteering at open evening for the second year in a row. He’s the kid you want in your class.

parents evening for ds10, I won’t go as I can’t manage the stairs or the chairs. But dh will go and then take him on to karate and then pick up ds on his way back.

I’ve moved the cleaner till tomorrow, I find it exhausting preparing for her to come and then having her here. She’s lovely, but I put a brave face on for people and then crawl on to the sofa.

It was quite windy last night with torrential rain. It's quite soothing to be tucked up snug in bed hearing it pelting on the windows. We've been up early most days this week so slept in for a change. Hope the extra rest will give me a boost but we all know it doesn't work like that!!
Nothing much on today, apart from raiding DH's huge collection of cardboard boxes to give some to DD1. She's started doing Vinted in earnest and getting lots of orders. She's been selling online for years (but good stuff) and has discovered people are happy to buy almost anything if it's cheap enough!

I hope everyone has a nice calm day.

I have just about clawed my way to half term! This week has been work and sleep 😴

But I am finished now and we are going away. Travelling today but I will have a good rest over the weekend and then hopefully some fun things next week.

Don't get blown away! 💨🍃

Looks to be sunny out which is good as rain was forecast, maybe it came in the early hours.

Had a long sleep and feel a bit better today after yesterday. Have the online shopping coming this morning then pilates at lunchtime which I will try and go to as it is such a good and gentle class and the teacher is great.

Even if I just go to that it is worth to for the gym pass I think.

Hoping for a good day for everyone

Have fun @Swanhilde

Enjoy pilates @Orangesandlemons77

Still on the sofa! Heart rate up oxygen way down. I'm just going to have ride it out.

I had similar symptoms last year when I caught covid on top of a CFS/ME crash, I was referred for a chest Xray but nothing showed up. I caught covid (I think) from visiting my DB2 in hospital, the ward was quarantined a few days later. He got covid, then other nasty things and was dead in 2 months. I was barely able to stand for his funeral, and last year was just a write-off. DB1 died on Christmas Eve, too, so had to do probate.

I really thought I was coping well this year so far. Ah well.

Sorry for Massive Moan!

I will be good for a few weeks and hope things get better!

I was having low oxygen too last year and got sent for all sorts of tests, the X ray, spirometry etc but they didn't find anything except the levels of inflammation which is associated with asthma but they don't think it is that either, confusingly. (have never had asthma in the past)

Wonder is this is to do with ME / CFS? I'm a bit new to it all.

Anyway, hope it passes as it sounds difficult, take it easy.

@Orangesandlemons77 yes I have concluded it is related. Such a pain!

It just goes to show how important it is to heed the warning signs. When I wake up on a good day (all relative!) I push myself on, trying to catch up with everything I've let slide, and live on adrenaline for a day or so. Then I crash!

Sofa day here too but I expected it really after getting out to my hair appointment yesterday.
Watched another episode of riot women and did some online Xmas shopping which seems early but have a couple of birthdays around Xmas too so need to pace the Xmas jobs! I’ve been semi productive at least! The lounge is a complete mess around me but it will just have to stay that way today.

@TeaAndStrumpets sounds like you had a really difficult year last year. Do you think you’re fighting something on top of ME/CFS maybe that’s making things worse? I’ve had covid twice on top of ME and it set me back each time and took months to get back to baseline so I understand how frustrating it can be. I do hope things settle soon.

I has an email from the school apologising that they’ve had to go back to online parents Eve in Nov. I’m probably one of the few parents to appreciate it as its always hit and miss if I can get there and if I do, it wipes me out for days. So I’m really pleased about that email as it’s an important year for DD this year.

Hi all,

Busy morning for me this morning. Poor cat has hurt his paw so had to go for the second vet trip this week.

Rang the vets this morning. They offered me a 10.45 appointment which I declined. I then turned up at 10.45 for the wrong appointment! Oh well. Brain fog! They were really good at fitting me in.

POTs symptoms are ramped up today. Felt very dizzy and faint. Still adjusting to the new meds and the side effects seem to be constantly changing. I can still do more than I could before though and my goal to get back to work next spring/summer seems more achievable.

Been to the post office for a parcel and I have managed to wash my hair so that feels like a massive win.

@EducatingArti - I'm sorry that you are feeling stressed about moving out. It is very short notice for you to sort things out. Hope it all goes ok.

@TeaAndStrumpets That sounds like a lot. I know the boom and bust cycle well. You would think as an OT I would be good at it - but no. It's so hard to pace when things build up.