LUPUS UK
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Just want to sleep... but doesn’t even help! ☹️😢

All I want to do at the moment is sleep! I go to bed most nights at 7pm!! When the kids go. It’s new yrs day and by 10am I’m shattered again so have a 3 hr sleep but don’t feel any better for it!

It’s just ridiculous, maybe I’m just lazy????!!! I’m just so fed up of this it’s just the same everyday! I’m could just sleep alllll day! And just never feel any better. I know it just the way sle and aps is but I can’t cope like this it’s driving me mad and my poor partner! He spends most evenings by himself as I’ve had to go to bed x

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No your not lazy fatigue is awful I can just go all of a sudden I’ll be ok then bam I’ve got to lie down trying to explain it to someone who’s not got it is difficult get your head down if you fight it it only gets worse in my experience

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You are certainly not lazy ! Fatigue affects all of us Lupies - & some of us don't have children to deal with ! You're found the right thing by giving in to when you can. Stay strong - we can't let this thing beat us !! Good luck & Happy New Year xx

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No you are not lazy. Sometimes I have been so tired that it's all I can do to eat something. One thing that should be checked though, is that you are not anaemic. Low iron levels can make you very tired and a simple blood test by your Gp should check this. Good luck

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Yesterday i mustered up the energy to go up for a shower with high hopes that I might get something done afterwards! Nope!!!!!

I came back downstairs and felt like I’d run a marathon! And that was it I was back in bed at lunchtime.

I admit I’ve not been eating proper meals for about 4-5 wks now as I just have no appetite and when I do try to eat a meal my stomach hurts and burns despite omeprazole. All I’ve been eating is croissants and biscuits. So that’s prob not helping the situation.

I’m just so fed up of feeling tired like this it’s neber ending and not fair on my family.

A friend invited us to a big soft play place today but I had to say no cos apart from my tiredness my lower back is very bad today and my 22 month old will want to run and climb and I just can’t manage it sometimes. I feel bad they are missing out cos of me x

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Hello Sara, sadly this fatigue is a part of autoimmune diseases.I have 2 on in the lupus, vasculitis, sjorgens area, with no name but on treatment and an autoimmune disease of the liver.I thought I was going mad before I was diagnosed at its worst I have crawled to the coffee table to tired to even stand up.I recently had a steroid injection and for a time was back to normal, sadly it's not a long term solution but shows its the autoimmune process causing the fatigue.Be kind to yourself get help paid if need be if you can, it's hard with these diseases.I got my family to read this it helped them understand so they would help more.it's about my liver disease but the fatigue is associated with all autoimmune diseases.

bmj.com/content/345/bmj.e7004

and it helped me realise it was the disease not me.Best wishes Jane

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That’s very interesting thanku. I don’t tell my parents too much about how my illness affects me as I don’t want them to worry. (I’m 38 yrs old with 2 kids 5y and 22month old!)

They don’t know I have to take slow release morphine or that I take 22 tablets a day! I just don’t want to upset them and last time I said something my dad felt guilty as if it was something they’d given me!

Luckily my partner is a pharmacist so understands it but I still feel bad that our life pretty much revolves around my fatigue and sleep!

I have sle and aps and my main issues are my hands/joints and lower back and hips and this fatigue!!!!

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Hello again, I understand about your parents my mother had rheumatoid arthritis and her great fear was that I would get it too.Your children are both very young and that must be hard things will at least get better as they get older.I hope you can get some improvement in your condition it is difficult to live with these symptoms.Jane

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Hi Sara. A couple of suggestions that may make you feel better. Firstly really try to cut out the poor eating and start to eat regular meals. Yoghurt beans on toast and salad with cottage cheese are all easy to make and will all help your GI tract to improve and will give you more energy. Secondly if you can reduce the morphine as soon as possible that would most likely help. Morphine is a real knock out for most people. Thirdly I suggest you see your GP to have your iron levels and anti ds DNA levels checked. For most people lupus waxes and wanes so don't lose sight of the fact that you should at some point feel better than this and be able to do more with your kids etc. Perhaps some of your friends can take the kids out occasionally?? People are often very happy to be of use but simply need us to explain how. Hope you improve soon.

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Yeah I know, I’ve just totally lost my appetite which is not like me at all! Will really try. Just the thought of eating a meal or even cooking one makes me feel sick.

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