Thread 6? Good grief..what are you up to today if you have chronic illness?

[MewithME]

Link to last thread. https://www.mumsnet.com/talk/_chat/5475947-what-are-you-up-to-today-if-you-have-a-chronic-illness-thread-5

Hello to my chatty poorly friends and welcome to New ones....

Is there anyone here with auto immune conditions, like me?

Hi @FuzzyPuffling I have Sjogrens.

<waves>
I have a bit of Sjogrens, a bit of lupus, a bit of aps and Reynauds!

How do you manage your Sjogrens?

Currently on Prednisolone steroids. Just had part one of Rituximab infusion. Part 2 will be a week on Monday.

I had steroids & infusion within 6 months of diagnosis. Then went 2.5 years not needing anything. Major relapse last year so back on steroids atm & hence Rutuximab again.

Now getting specialist physio which is brilliant & helping my mobility & strength.

I will be honest @Dozymoo42 ...social life and hobbies when you are having to keep a job, will need to change a lot. It doesn't mean you won't have friends or joy, but I have radically adjusted expectations. I think acceptance is a bit part of living well with MEcfs.

I made a fairly early and I think wise/informed decision, not to spend all my 'spare' energy chasing miracle cures. I read about the lightning process and some specialist massage thing I forgot the name of and LDN... Some of these things (apart from the lightning process which is a cutlish con) may help some people but chasing them desperately isn't the way.

Anyway, despite a busy week...I am taking my son out for lunch and then to buy some Pokémon cards. We will buy some easy dinner bits while we're out and I will be spending a good chunk of time watching telly in bed later. (I say telly...I mean my phone with Netflix etc).

I have Graves disease, although thankfully it's currently in remission 🤞

Quiet and slow day here post travelling. Have put a load of washing on and had a (decaf) coffee ☕

Will spend it mostly in bed, takeaway for tea 😋

I find my rheumatologist is very disinterested in me! The specialist physio and OT were a lot more helpful.

@FuzzyPuffling that's a shame. I'd have thought with your "collection" you would be an interesting case.

Thanks lovely, I think my plan is be gentle with myself, plan well for social stuff so get to still have enjoyment- the positive thing is I’m more a homebody anyway so it’s not like life has come to a screeching halt . The hardest bit for me is going to be pacing and putting me first - being an eldest daughter then having children quite young I have gotten all the way to 45 before I’ve had to even think about it but I need to listen to what my body is telling me!

have a lovely afternoon everyone we currently (touch wood!) have no rain in the north west so far long may it continue 😊

Morning all.
To add to the PEM CFS/ME topic as with @MewithMEits very difficult to socialise and plan other activities when you work. I've had CFS/me for around 16 years. Years of mild symptoms pretending I was ok and battling on as normal, looking for answers, cures etc. Told by GP early on that there was no cure and just to get on with it.
Having to face it as I got worse. Still not calm and accepting.
Lots of trauma, life changes, stress.
I find pacing pretty impossible. I work full-time albeit from home since last summer.

I care for MIL with late stage dementia who lives with us, I have a DH who does all the cooking bless him but little else domestic unless we plan and do it together although he is amazing at other things.
We have dogs and occasional puppies.
So each day is a struggle with things that have to get done and others that are not.
House is a mess!
That's about it!

I'm in awe at some of these posts. You manage to do so much! Kudos ladies 💐

Nah...Im just a mix of rubbishness with an ANA of 1:640 ( I'm quite proud of that- it feels like " proof")

@FuzzyPuffling if you don't mind, what symptoms do you deal with day to day? I've only met one other person with Sjogren's & you wouldn't have known she had any diagnosis.

Fatigue and fog.
Dry everything, especially eyes and mouth, kept at bay with eye drops and mouth pastilles.
Joint pain and stiffness.
Acid reflux and dry cough.
Reynauds, especially hands, improved with lercanidipine.
Various odd rashes and flushes.
Intolerance to drugs/vaccines due to overreaction of my immune system.

That's off the top of my head. "General weirdness" should cover it!

How about you?

"Normal" Sjogrens symptoms very little. No problem with eyes. Slightly dry mouth but keep water to hand which is enough. Some joint pain but more aches than actual pain.
My immune system attacked my nervous system, mainly my cauda equina nerve endings. Stopped my legs working properly. Was in a wheelchair for a while which was horrible. My whole body went weak.
I can now walk round the house with a stick on good days, need a zimmer frame on bad. Use a mobility scooter outside on the few occasions I get out.

Oh that's proper rotten, I'm so sorry. I feel very fortunate in comparison.

I'm fine. Honestly. I feel a lot luckier than some. I'm not on my own. My family are lovely.
The physio is helping massively. I just wish I'd been referred a few years ago. But hey, I've got it now.
Wirh any luck I'll be able to drive again within the next few years & that will be amazing 😊

Afternoon. Thanks for the info on the Visible app - I downloaded it yesterday. Will see how I get on with the free version for a while.

I made it through my rehearsal this morning - actually think the anticipation beforehand was worse - felt dreadful first thing. But I managed to do minimal playing - handed out music, counted them in, helped out when they got lost and made (possibly) helpful suggestions. And made the tea. I did have to wander off for a fresh air/ cold water to the face break a few times, and push through a bit of wobbliness.

Back on the sofa for the rest of the day now. The sun's come out a bit but I'm ignoring any temptation to go for a walk.

Evening all. Had a decent day today. Short dog walk. A visit to chat up with my mum and sister. Then made homemade burger and chips to sit down and watch Gladiators and then Michael mycintires big show.

@MewithME That is where I seem to be with it. Terrified I will make myself worse because I have once and lost my job. Lots of grief I think. It's useful to hear how other people manage.
Well done on your deadline. I hope you can rest now.

We're very quiet this weekend. I'll be spending another day resting as much as possible ready to return to work tomorrow 🛏️☕

Hope you're okay @FurForksSake and not too anxious 💕

Morning all and thanks @Tiredandwired2 . I was a bit silly yesterday and did too much but DS was v sweet and said he'd had a lovely day. We had a nice lunch out and then just did some silly errands really but think he enjoyed just messing about and being out. I haven't slept well at all.

I feel ok all things considered but I will be sensible today. The sun is shining. I might take something outside to sit on and have some air in a bit.

I can hear the birds. Feels like spring is so nearly here now.

I might book a holiday today! I've been dithering so might have missed the boat on the place. We've been before and it's great.. I just was hesitating because it's wonderful to go new places but I feel somewhere I know takes a lot of stress out of it ! They don't advertise directly anymore. Do you think it's safe doing it direct with owners ? I've only been through companies before with guarantees.

Morning all

Glad you and DS had a good day @MewithME

I didn't sleep well - seems to be a pattern after a busier day that I'm restless and wake up a lot. Beautifully sunny here so I'm admiring it from bed. Might go and sit in the garden when it warms up a bit more.

Feeling a bit down about a conversation with a friend yesterday - lots of people in her life have health problems at the moment and as a result she's not doing a lot of the normal things she would do (e.g. we used to go to cinema, gigs, long walks regularly). I don't feel guilty exactly but sad about the knock-on effect on other people.

It's raining again here. Day 50+ of rain. Everywhere is damp and gloomy. It's threatened to clear up later, so fingers crossed.

The sun is out here! ☀️

I am tempted to go and potter in the garden as I don't know when I'll get another chance 🥾🥾🤔

Yes, the sun is out here as well. For something that might cheer people up and bring spring into their homes, some cut daffodils. They’re only a pound or so and they really do cheer me up when I see them

Another thing that has pleased me is a scented hand wash and it’s a beautiful fragrance, very subtle. I’m very easily pleased lol