21,689 members17,186 posts

Insomnia :(

It is 4:41 am and after a truely exhausting day @ hospital I had expected to be sleeping soundly when my head hit the pillow! Instead I lie here fretful about how I am going to cope today! My one year old will be up within the hour, my 3 year old is sick & i'll need to get my 5 yr old to school - through the snow! I want to hide in a deep dark cave! No strength or energy and my poor hubbys tolerence of our uninvited Lupus guest is wearing thin. We argue alot now and I know he loves me deeply and does far more than any other hubby but he just doesnt understand ...

And now the first cries of a hungry toddler ...feeling hopeless!

Sorry for negative post but I hope letting this out will give me strenth for today

Ellie xXx

8 Replies


Hope you got the littlies sorted.

Nighttime can be horrible

Tired, but often unable to sleep, and not feeling much better even when you have slept.

Sometimes, it is the meds we're on - steroids keep you edgy!

Sometimes it is just the lupus.

Over the years I have tried to get something from it. Try not to fight it, so that at least your body is getting some rest. I have tried meditation, to relax a bit. Sounds a bit high faulting at times, but it can help. Even thinking of something pleasant can get you out of the cycle of anxiety - playing on a beach with the kids, instead of how you will cope in the morning.

All the best for the days ahead



Morning Ellie,

a midwife once told me that rest can be just as good as sleep.

I too have many nights where I am soo exhausted but just can't sleep. Whittling about it just makes it worse. I either put some music on quietly in the back ground, or put an old dvd on, one that you know so you are not concentrating too hard, and just try to relax as much as possible. Luckily my other half sleeps through anything so he is not bothered if i have the tv on until 4 in the morning.

just pace yourself today and rest where you can



Good morning Ellie, I really feel for you, my sister has lupus and two young children to cope with. I'm not sure if u would be interested but I introduced her to forever living aloe drinking gel and its made a big difference to her, particularly on energy levels. I understand many patients with lupus take this and feel great. Let me know what u think?

Hope your day isn't too bad.



Its not a negative post ......its an honest post and i feel for you ,i too suffer terrible insomnia,why when a body is so exhausted and in pain cant it shut down to repair,i read more and more on sleep problems ,try drinking valarian tea before bed ,it tastes vile but helps ,take care ,bravex


Hi Ellie

I can empathise entirely with how you feel, I have had bouts of insomnia for years BUT since Lupus hit it has been much worse (enter prednisolone!) which means that generally I am anxious, irritable, have gained lots of weight (hell, I don't even recognise myself in the mirror these days!) and day time is difficult but night time is by far the worst time...

Being wide awake, whether through illness, pain, stress or any other of the myriad of reasons we Lupies can quote for being awake in the early hours, is an absolute pain in the ass! For me the usual reason is pain (I now take a strong pain med at bedtime, as well as the other not so strong ones!) otherwise I am 'prowling' around the house (as my hubby calls it) for hours on end when I should be sleeping like a baby!

There are a couple of things you could try to help, just suggestions, but they have helped me immensely :) Firstly, if you have one, try to take a bath before you go to bed. I'm not able to do this any more as only have a shower, but for me, its one way of the most relaxing ways to spend half an hour before bed, especially if you bring a glass of wine and some candles into the equation ;) My other way of coping is, if I am up in the night because of stress/anxiety, I make myself a hot water bottle and a cup of hot chocolate, wrap up in a blanket and write down in a special notebook exactly how I am feeling, good or bad, whatever the issue. Once it is out of my head I feel more able to go back to sleep, usually more peacefully :)

The final suggestion I have is to get your hubby to read the following

May just help him to understand better the situation you find yourself in, after all, its not like you asked to be a Lupie ;) xx


Hi Ellie,

I have just seen your post and my heart went out to you. It is hard enough to deal with this as it is without having three children under 5 to care for. Bless you. Are you able to ask for support. Do you have any family nearby that could help you a little bit. If not don;t be fearful about talking to your health visitor to see what services that could be around to help you locally. Are there any Sure Start programmes in your area or could a nursery have the three year old and 1 year old a few times a week so that you get a breather. You must be just managing to get through the day at the moment and there is no shame in reaching out for a little bit of help if you need it.

There will also be some volunteer groups in your area that you will be able to approach too. You may also want to have an assessment of need in your own right too from Social Services so that they can liaise with other agencies and co-ordinate a package of care for you so that you are getting some time to yourself to manage this condition. It may be that they can request some family support for you from Social Services.

I don;t know what your local area will offer but your own GP or health visitor could be a good starting point to tell you what is available locally for you.

With regards to your husband it might be worth him contacting a local group in your area for carers. This will give him the opportunity to be able to express how he feels with people who will be going through similar situations.

I hope for all of you that things take a turn for the better. Please reach out for some support though as it sounds as though you really need it. Take care Love Marion x


Thank you all so much for your heartfelt reply's ... u've all spurred me on today! Amazingly not a walking zombie but sure i'll crash very soon. 2 out of 3 kids in bed ... time 4 a much needed soak in the bath! Will reply to you all properly soon when I have more energy!

Thank you again today did not feel alone in it xXx


Bless you Ellie and I hope you have a fab nights sleep tonight x