Just so tired

[Sara_A]

I'm really struggling with feeling so tired at the moment!!!

I can't sleep in the day as I've got 2 young kids and I literally wait all day for my partner to get home at 6.30pm so that I can go to bed. I often have to leave my partner to deal with our 22 month old daughter (as she won't go to bed) once we've got our 5 yr old to bed.

I feel really guilty but the last 2 nights I've literally been so exhausted I've fallen asleep on the bed trying to get little one off and he's had to take her back downstairs. I'm just sooo tired. I sleep from 7.30pm til 6 ish and by 9-10am I could go back to bed.

I really wish I could experience what it feels like to be 'normal' not tired all the time!! My life revolves around when I can next go to bed, even tho I never feels any benefit from sleep but I just can't stay awake have to go to sleep.

It's another 3.5hrs til he gets home and I've been struggling to keep my eyes open for last 4 hrs!

I just hate this feeling it's the most awful part of all this x

[Lupiknits]

You poor thing! I can remember how exhausting it was to have two tots under two, but I had no health problems then. All I can do it send a hug, and wish I was close enough to be able to occupy them while you catch some shut eye x

[Treetop33]

Total sympathies here. You have two kids at that exhausting age. I hope you can pull in help from relatives and childcare to make sure you get the rest you need.

With my own 7 year old I often use the analogy of the airplane that gets in to trouble, where you are told to put the breathing apparatus on yourself before you put it on your dependents. The point being that you are more likely to save others (put their mask on) if you look after yourself (put yours on first). Counterintuitive for parents!

But self care is important for Lupus etc. That way you know you'll be with them for the long haul xx

[Sara_A]

I just feel so guilty when I have to go to bed and leave dad to deal with the little one!

I think he does understand tho, he's in the med profession and knows all about meds so he knows I'm not on 22 tablets a day for nothing!!

I just hate feeling like this it's not fair on him x

[Chanpreet_Walia LUPUS UK]

Hi Sara_A,

Almost 90% of people with lupus report experiencing fatigue, making it one of the most common symptoms. We published an article on our blog about managing fatigue which you can read here: lupusuk.org.uk/managing-fat...

It is suggested that if you are showing signs of fatigue when your lupus is controlled, you should ask your doctor to check you for other health complications like anaemia or fibromyalgia.

[Sara_A in reply to Chanpreet_Walia]

I’ve read all the fatigue tips and advice but just don’t think it’s possible for me to put it into practice with 2 small children unfortunately!

As for lupus and aps being controlled I’m never sure if it is or not??!!! I had my daughter 22months ago now and haven’t been great since then. I’m now up to the full dose of mycophenolate for the last 2 months and would say I still have more bad days than good and want to sleep.

I see my lupus specialist in 10 days so will see again what’s said! Don’t think there is much more can be done tho😢