Anyone Feeling Me?

Anyone else here have this problem? (I want to see all hands up!) 🙋🏻‍♀️

[Hidden]

🙌🏻👾🙋‍♀️😊

[Hidden in reply to Hidden]

Ha, ha. I’m surprised I’m not seeing every bodies hands. I know we all feel like this. 😊

[NeuronerdDoaty]

Perfectly said.

[Hidden in reply to NeuronerdDoaty]

😄

[Freckle1000]

🖐 and 🖖

I dream of a luxurious spa bath. I have to lie down after taking a shower.

[Hidden in reply to Freckle1000]

And then, a nap. (I have a large jacuzzi tub. I like soaking in Epsom salt. But even that can drain me).

[Freckle1000 in reply to Hidden]

😁. Yes - you have to try and climb out if the things without breaking you're neck. Mind you - happy to take the risk.

[Hidden in reply to Freckle1000]

😊

[MEGS53]

Yes, that's me every day. Very true, unfortunately.

[Hidden in reply to MEGS53]

Meg, I definitely think we can all relate. I know that others, not going through this, have a difficult time understanding. But it seems to use up a lot of energy just to bath and groom ourselves most days🤷🏻‍♀️

[Wendy39]

I have really had this this week.

Fatigue but lethargy too - where I know I have stuff to do but just can’t pull myself together to get up and do anything.

It’s by far the worst and frustrating symptom. And doctors - even lupus experts - in my opinion really do not understand the extent of this.

Even on maximum immune suppressants Hydroxychloroquine Mepacrine etc the fatigue is a nightmare.

Enough moaning. I know we all get it. Just a shame others don’t.

[Hidden in reply to Wendy39]

Wendy, I’m feeling exactly the same today. Sometimes I feel super fatigued physically, but sometimes I just feel like a shell. Like I have not much in me to get up and do. I’ve always been a doer. A go getter. It’s such a hard mental adjustment.

[Cas70]

🖐 If we could only take steroids long term ! Have misplaced my positive nature at present 😿

[KayHimm in reply to Cas70]

My sentiments exactly! Hope your positive nature re-emerges.

[Hidden in reply to KayHimm]

Ah thanks Kay! Have a great weekend!

[Hidden in reply to Cas70]

For some reason steroids have not ever helped, even at high dosages.

[Hidden in reply to Cas70]

Cas, I hope you get it back. We get down at times, but we lift ourselves back up when we can. 🙏

[Spotty-ewe]

🙋‍♀️🙋‍♀️🙋‍♀️Definitely know the feeling!! 🖐🖐🖐 I have trouble getting myself to bed some nights too. But judging from the walk last week it seems steroids do help me. 😉 BUT I only have 2 to go so am feeling drained already. 😞 Sadly due to recurring UTIs I haven’t enjoy hot tubs or baths for years. Hope to try out my new waterproof swim shorts soon (once the rash has completely gone) with added protection of incontinence pants underneath so might hopefully get back to the pool and jacuzzi. 🙏🏻🤞😁 Thanks for the fun but meaningful post Brook 🤗🥰

[EOLHPC in reply to Spotty-ewe]

👍 Me too. Finally had to give up bathing altogether due to lichen sclerosus in the early 2000s. I dream about swimming ...and also soaking in the tub 🙄😆🤷🏼‍♀️❤️🍀

[Spotty-ewe in reply to EOLHPC]

Hi Coco, I’ve had that dream! 😉 I don’t know what lichen sclerosis is, but it sounds awful - poor you. 🤗 I’m hoping to try out the waterproof shorts this coming Friday. 🤞 I’ll report back on how I get on.

Hugs 🤗 Spotty 😘

[EOLHPC in reply to Spotty-ewe]

😊💐❤️🍀

[Cas70 in reply to Spotty-ewe]

Hi Ewe - I am sole carer for a poorly husband. He was having the most awful recurring UTI’s and then a friend recommended D-Mannose - he has never looked back. My sister who is much older takes it and a couple of people in our support group, to great effect. All it is, is the kernel of Cranberry but it destroys bacteria that gathers in the bottom of our bladders. Look it up, Holland and Barrett sell it - go for the capsules as the pills are ridiculously big. Best of luck x

[Spotty-ewe in reply to Cas70]

Hi Cas,

Yes, I’ve used D-Mannose too and although it delays symptoms going into a full UTI it doesn’t prevent it completely because my underlying problem is an atrophying kidney. The prophylactic antibiotic I take daily (changed every 6 months to avoid resistance) keeps it at bay unless I use the pool or jacuzzi. 🥴 But it might be an idea to take it before I go into the pool and again that evening just in case. Thanks for the reminder, and so pleased it is working so well for your hubby. 👍🏻 Best wishes to you both,🤗 Spotty.💕

[Cas70 in reply to Spotty-ewe]

That seems a good idea. My husband doses up when he needs to as well. Good luck

[EOLHPC]

👍Yep...for ages...and syncope in shower too, especially during flares....being more adequately medicated for my ‘everything’ does reduce this a bit, but it’s always a prob....especially as i get older...finally got a shower stool earlier this year: 😄does help, so am now feeling a bit safer..but getting up in the morning, washing + all my prescrip topical treatment plan routines + getting clothes on + Gastro Bowel Retraining Clinic stuff etc = as much as 4 hours of SLOG...it’s EXHAUSTING 🤷🏼‍♀️

❤️🍀❤️🍀❤️🍀 Coco

[strawberryshortcake]

Yes . I’ve got Cmt which causes my fatigue. Takes me ages to get dressed in the morning.

[CecilyParsley]

👋🏻 Absolutely. Today even breathing is exhausting. I find myself holding my breath quite spontaneously and to shallow breathe. It is like walking through mud.

[Hidden in reply to CecilyParsley]

Cecile, I’m so sorry. It definitely isn’t something I’d wish on anyone.

[Hidden in reply to Hidden]

Ugh! Cecily! Autocorrect hits me again. I’m so sorry.

[CecilyParsley in reply to Hidden]

No worries Cecily is a user name from Beatrix Potter. My real name is Julia xx

[Hidden in reply to CecilyParsley]

Thank you! Julia!

[Sixy6]

My hands are in the air I'm tired just thinking at the moment

[Hidden in reply to Sixy6]

Oh boy, Sixty6. Ain’t that the truth, showers, standing, thinking... it’s all so exhausting. I decided that for Halloween I’m going as a zombie because I can just go as myself🤦🏻‍♀️

[Sixy6 in reply to Hidden]

I have to laugh at that as it's important to be yourself

[Hidden in reply to Sixy6]

It really is. 🧟‍♀️ and who is the (barely) walking dead if not us?🤣