hEDS and Sjogren's Syndrome - not the best combo in this heat!

Immiscibility

I'm really struggling in this heat in terms of fatigue and effects of dehydration, mostly. I have ADHD and initial/middle stage insomnia as well, so trying to recover lost energy feels like a Sisyphean task...

I'm finding the joint pain from the EDS is worse at night, and can't get into a comfortable position, because I normally surround myself with pillows for support but it's too hot atm!

I'm also drinking a lot of water because the Sjogren's makes my mouth so dry at the best of times, but then I'm running to the loo all the time! I've also ordered the mouth moisturising spray I normally use but my pharmacy is having trouble sourcing it.

I'm not sure what this post is about (mostly moaning, I think *lol*) but if anyone has any suggestions on improving sleep/regaining energy/keeping hydrated please share your wisdom!!

Sandy_123

Hi @Immiscibility moan away lol, I don't really have much wisdom about it, other then to do as little as possible, hopefully your pharmacy will get your spray in soon. I will  tag @chiarieds as she may be able to advice you better.

chiarieds

Hi @Immiscibility - (& thank you for the tag @Sandy_123 ) - I think we're all struggling in this heat! I also have hEDS + neurological problems & have had a bad 2 weeks anyway, which hasn't helped.

You're doing the right thing keeping hydrated, even if it does mean more trips to the loo. My son brought me a fan around, which certainly helps; I don't know if you have one. I've lost my appetite recently, but try to ensure I have one meal later on when it's cooled down. I think the heat saps your energy anyway, & today being so hot, I've got the windows open, but the blinds closed. My joints like the warmer weather, but the rest of me is finding it way too hot. Hope you manage to cope.

Immiscibility

chiarieds said:

Hi @Immiscibility - (& thank you for the tag @Sandy_123 ) - I think we're all struggling in this heat! I also have hEDS + neurological problems & have had a bad 2 weeks anyway, which hasn't helped.

You're doing the right thing keeping hydrated, even if it does mean more trips to the loo. My son brought me a fan around, which certainly helps; I don't know if you have one. I've lost my appetite recently, but try to ensure I have one meal later on when it's cooled down. I think the heat saps your energy anyway, & today being so hot, I've got the windows open, but the blinds closed. My joints like the warmer weather, but the rest of me is finding it way too hot. Hope you manage to cope.

I'm really lucky to be at my mum's because she has a little aircon unit that's the perfect size for one room (and is small enough to run off the energy produced by the solar panels!) I

Definitely with you on the appetite thing. I've been having a protein shake for breakfast then picking at fruit until about 8pm when I suddenly feel ravenous, and woe betide anyone who stands inbetween me and the fridge! *lol*

Immiscibility

Biblioklept said:

If you're drinking lots of water be sure to eat regularly too if you can, even if it is just snacking on sweet or savoury things to keep up your salt and sugar levels!  
I have ADHD too @Immiscibility and I've found setting myself silly challenges on how much I need to eat / drink really helps me remember to!

I'm trying so hard to eat a little when I remember - I've got lots of fruit around, and had some cheese and crackers earlier which was a nice change!

It's definitely hard to keep enthusiasm going to eat a balanced diet when it's hot and ADHD brain is screaming "NEED MORE FUN FOODS!"    

Karen7788

Hi @Immiscibility
I have Sjogrens alongside RA, so I know where you’re  coming from. Chewing sugar free gum helps me, plus drops for my eyes. There seems to be a lot of difficulty getting some medications lately, I’ve had issues with a couple of items that have been prescribed. 

Immiscibility

Karen7788 said:

Hi @Immiscibility
I have Sjogrens alongside RA, so I know where you’re  coming from. Chewing sugar free gum helps me, plus drops for my eyes. There seems to be a lot of difficulty getting some medications lately, I’ve had issues with a couple of items that have been prescribed. 

Thankfully my eye drops and eye gel are available, but it seems the spray I use has supply issues (I use the A S Saliva Orthana one).
I'm also experiencing issues getting one of my ADHD medications which is rather worrying.

I've been lying with an ice pack over my eyes - so nice!