What are you up to today if you have a chronic illness? Thread 🧵 9 Summer's Coming

[MewithME]

Link to last thread 🧵 https://www.mumsnet.com/talk/_chat/5524497-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-8-plodding-on-gently

You know the rules...let's be tidy and fill number 8 up first 😁

Morning all, bit of a rough night here with not much sleep. Increased my antidepressant after seeing GP the other day as been struggling with increased anxiety since the stroke but side effects are really kicking in and making me feel awful.
I think I’m going back to low dose tonight as I’d forgotten it can take time to adjust and really don’t want to be adding extra symptoms to deal with on our upcoming holiday. I’ll judge how my mood/ anxiety is in another month or two and if I still feel I need it, can always try again!

Totally understandable to feel that way @TeaAndStrumpets and need a bit of time just to process everything. How is DGS feeling now? Quite a lot for all of you to get your head around.

Hope DIY neighbour soon finishes @ValleyClouds

Glad the appointment was helpful @martha79

Sorry you are struggling with your meds. There is a lot going on healthwise and it's so hard to keep on top of what effects you are getting. A holiday could be the best medicine of all!

I think DGS was going to be in for at least 48 hours so maybe out today. It's a good thing really as they are testing for coeliac and various auto immune disease while he's in. The results are weeks and months coming back but he's definitely perked up on insulin. The consultant and his team are very nice.

BTW in my research I discovered there is a huge rise in young adults with T1 diabetes post Covid. Bugger that awful disease.

Well I have been DECISIVE! I was a bit early at the optometrist so looked at the displays. I found some nice sunglasses which I am having made to my prescription, plus some normal frames which are very comfy and not too big for my face. First ones I tried on, which never happens!

Excellent @TeaAndStrumpets Im so glad you were able to be decisive! Well done 👍
Hope DGS can get home today and great he’s perked up. Good they are being thorough. Blimey Covid really does have a lot to answer for 😕

I did have the discussion re side effects and waiting another month or two to see if anxiety settles naturally with the GP but didn’t remember having any side effects when I was on this dose before so thought I’d try before the holiday but they’ve really hit this time especially feeling wide awake at night when I was actually sleeping reasonably okay!
On a more positive note despite not feeling the best, I’ve just managed a short dog walk with DH on my mobility scooter. Didn’t go far at all but was good to be able to do that again for the first time in months! Plus it was one of my post stroke goals so nice to see progress 😊 I’ll need to use the scooter on the cruise as the ships are massive so needed to test out I was fine using it and I was! 👍

Afternoon all

@TeaAndStrumpets glad DGS is getting brighter. And hope you are happy with your new glasses.

@ValleyClouds some people are just inconsiderate. Sorry your neighbour is one of them.

@TodayIsatrickyone your cruise sounds lovely. Glad you are able to go.

😭 Urgh. That's the worst.

Our neighbour was a builder and used to bring rubbish home to burn. That was a bad time. Just totally inconsiderate. Somebody else shopped him in the end.

That sounds pretty similar. My GP didn't mention about post sepsis syndrome but I had looked it up and think that's what mine is too as it started then.

After having sepsis I started having these nasty bouts of shingles starting straight after so I reckon the lowered immune system fighting the sepsis triggered that and both in turn started the CFS symptoms.

I was also low in iron stores and vitamin D so getting those things better helped a bit, then I got another nasty shingles episode on the face / ear and things have been worse since then, also had covid quite badly at the start of the pandemic before the vaccines came out, so it is a right mixture really.

I also have been diagnosed with PTSD (from the sepsis / ops) and have been offered some CBT for that but it is intense CBT and I am just too tired for that right now so I have put it off for now. they said that is fine I can pick it up whenever I feel up to it.

I'm on a cocktail of meds, fluoxetine, olanzapine, gabapentin, co-codomol, all of which help a bit but not a lot.

I am waiting on an appt with the pain clinic (I have adhesions post surgery also causing pain) and that has just come through in a couple of weeks, so will see what they have to say.

I have been on a course with the local CFS clinic and they took all sorts of people with fatigue so that might be an option for you too, if there is anything like that nearby.

Best of luck with it and I hope things improve for us both. My worst fear is getting sepsis again (I had delirium which was really scary)

Been to work today for some training. I've done it before so I knew what to expect. Even so, I had to sit on a chair for the physical bits, which I am quite proud of myself for doing and not standing up like everyone else ⭐

Home now and in bed with a cuppa, an apple and some smoked cheese. Thanks to toil I now only have Monday left at work before breaking up for the summer 🥳

And DH is making homemade pizza for tea 🍕

Have a relaxing Friday evening all 💕

Excellent re physical bits and using a chair! Little adjustments like that can make or break an activity. When I was young I was a fainter so always sat down in church....no thunderbolts!

@Swanhilde All sounds good. Love home made pizza 😊

Well done @Swanhilde on sitting not standing and fab news there’s only one day left to work before you break up for Summer 👏

Not much going on in the Dingle household, I still feel rough after my d&v bug. DH is feeling run down, and looking tired. DDog is also looking hot, and just lying on his cooling mat, sighing now and again. Hope everyone is ok.

Oh it's all too much isn't it! They should do big cooling mats for adults.

I think being too hot when you're still a bit wobbly is the worst. At least in cold weather you can cuddle a hot water bottle to your poor tum.

Oh gosh this fatigue is taking me out sideways with this heat. Worried that I might not actually be able to work next week. Along with my Hayfever being so bad despite being on medication I just feel absolutely wiped.

I would definitely be up for a human sized cooling mat. My fan arrived and it helps a bit but I'm very floppy with the heat and dreading next week.

Did a bit more decluttering and then got hit by tiredness so have napped, had food and am just heading back to bed.

Both DDs have checked in with heat updates 😎 Only 24 in Jersey at the moment but 27 on Monday which would be too much for me! Nice to get to paddle though.
DGS in hospital still and it's VERY hot, he's now been moved from resus to the adult male observation ward and maybe home tomorrow. A lot of demented old men but he's got curtains drawn and headphones in.... DGS is quite worried but Mum is on guard! The staff are lovely though and have been very kind.

Driving into town this morning I should have had an I-Spy book for British Summer Clothing. I'd have scored high for hairy legs! You do see some sights.
DH hates wearing shorts and T shirts. When we went to Portugal he often got mistaken for a native...very dark hair, full length trousers and shirt sleeves rolled right down to ward off the sun!

I think the hayfever has been particularly bad this year. Hope it calms down.

Have you tried cold flannels on neck and wrists? Supposed to be cooling. I suppose you could assess your rental viewings with hot weather in mind?

I've got loads of ice packs which get stuck in various places on me 😄

That's funny, I was just thinking that - I don't want to do viewings in the heat, but at least I'll get to know what places are like and whether there's a nice cool shady room or garden!

Exactly! Then it would be a bonus.

Mind how you go with the ice packs....

20 ⁰c here today. Mainly cloudy & muggy. We may reach 25⁰c next week.
Both living room & our bedroom are north facing so don't get silly hot. We have a mobile evaporative cooling unit for ddog. Thick coated so doesn't enjoy the heat.

Oh poor dog! Must be a lot of panting going on.

Friends have just discovered that their chihuahua puppy can swim. She took a flying leap into their large pond and swam in circles for a while, then had to be fished out because her little legs couldn't manage the side. I think they'll be making a sort of jetty for her 😁

I’ve sneezed twice today and my shoulder muscle popped right out again! Strange as it has been improving but guess it’s sudden movements! Had a Referral to local hospital physio dept and was warned it could be about a 20 week wait but got an appointment through for next week which was unexpected. Not sure what else they can suggest really as I’m still doing daily physio exercises but we’ll see. Does mean another week with consecutive day appointments but needs must.

@TeaAndStrumpets I do feel for DGS as it’s difficult in hospital at any age but harder for a teen. I’m in my 50s but I still had curtains drawn and headphones on during my recent stay! Fingers crossed he can get home tomorrow.

Sorry to all those struggling with the heat. Not too bad here today, around 21 so pleasant but 28/29 forecast from Sunday so I’m trying to get a bit of pottering/ organising done today/ tomorrow before the heat/ appointments wipe me out again next week!

Oh how funny the chihuahua went for an impromptu swim! Ours is short haired and has a shallow doggy pool that she loves so she’s easy to keep cool. She particularly likes chasing the hosepipe around the garden too… DD filled it to the top to see if she could swim and she sort of did! I think our old dogs just thought it was a giant water bowl!

Mine is horrendous. My usual antihistamine that I've used for years isn't hitting the sides. I can't use anything with steroids or decongestants in it due to my immunotherapy which rules most things out. I was debating an e-consult but when I had sinistis they couldn't recommend anything for me after I'd finished the antibiotics. I just feel miserable and useless with the fatigue ramping up the last couple of days.