Soooo exhausted still........!!!! Sorry!

[Sara_A]

Hi all,

Need to just do something to try keep myself awake til my partner gets home in 2 1/2 hrs!!!! Feels like a lifetime at the mo! I’ve come over with the awful sudden total exhaustion and I have my 5y old and 2 yr old and I’m so exhausted I could just cry!!! I just don’t know what to do with myself! This part of the illness is just killing me and I really don’t know what else I can do. I’m on so many drugs but I could just scream and cry with this.

I literally cannot wait til partner gets home.

On Sunday I had to take to bed for 3.5 hrs as I just could not stay awake any longer. Then felt ok but next day for work ( which I’ve had to cut down to 2 x 6 hr days!) I was like a wet lettuce just exhausted! Started with ? Flare joint pain about 2-3 wks ago so on increased steroids and felt good but now going down again.

Sorry just need to moan! Oh and maybe a nanny!! Ha x

[HeKe]

Oh Sara, I’ve just posted a right moan about fatigue and then I read about you trying to cope with two little ones. It must be so hard xxx

[Mybe in reply to HeKe]

I know how you feel. Because i to get so very tied. Morring's for me is hard going. Then i get to bed i can't sleep. Then i am up all night. It's like it all the time. Plus i get very bad headaches. And the rash on my face. People look at me and go the other way. Because they do not under stand. Ive lost some friend's. Becase i can't up with any more. They going out and party. I like to stop home. I can't be doing with all the noise.

[Sara_A]

It’s very hard to deal with it esp if it’s new to u too and u are used to being very active. Since age 21 this all started for me (now 39) I’ve struggled and not been at my best (whatever that is ha!)

I know what u mean sometimes I can’t even prepare food for my partner I feel useless!

I’m pretty sure ur son and his wife would rather u stay and just sleep than risk driving anywhere! You can literally pretend u aren’t there and just retire to bed! Then u won’t feel bad not that u should!

I’ve laid on sofa since posting watching tv with kids am on the countdown til Dad gets back!

It’s so blooming hard this fatigue. I go to bed at7-7.30 most nights which is ridiculous x

Get some rest while u can, u don’t have to think about anyone else at the mo so think of urself! God how I would if I could ha xx

[Lisalou19]

Hello Sara

Been meaning to respond to you all day but not got around to it!

I myself have a 4.5 year old. The days when the fatigue kicks in is like a day of hell. I resemble half the person I am on my good days. Not only the tiredness the lack of brain power.

Sitting around does the fatigue no good, it’s almost feeding it. The brain is a very powerful thing and if you get your brain into gear and tell yourself this is not who I am or who I want to be and step outside for some fresh air. If you can take a little walk and if not sit outside. I find sometimes just getting myself out the door really helps, Evan if I have no intention of going any where, I feel like I’m battling the disease and not letting it win!!!

Please give it a try and see if it empowers you just a little.

Xx

[Maureenpearl]

Hi Sara_A, I used to feel like you when my two boys were toddlers. I wasn't diagnosed with lupus but eventually ME.

I paid for someone to come and look after them while I go back to bed during the days or friends would take them out for a few hours to help me because I just could not keep awake during the day no matter how much sleep I had.

If you live in the UK you could ask for help from social services or your local college if they have a child care course they may be students who need a placement to practice with supervision.

Hope you get some rest today and you find help soon.

All the best, praying things will be sorted soon.

Maureen 🌻🛏🙏🏽