Bad lupus fatigue : Are there times when you don't... - LUPUS UK

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Bad lupus fatigue

jensen_lynne profile image
jensen_lynne

Are there times when you don't want to get get out of bed but you have to force yourself to get out of bed?

10 Replies

Hello, I am reading your message after having a sleep on my sofa between 4 - 5pm on my day off work. Honestly, YES....there are many times I don't want to get out of bed, and many times I force myself to get out of bed, but there are also times where I am compassionate with myself and allow myself to rest and heal.

Do rest, do heal, but we must also carry on too.

Bright blessings

TTxx

I feel this very often! Sometimes I have a full night's sleep and yet when I wake I feel that I've just climbed Snowden and could do with another night's sleep. I call this my 'ill' tired as oppose to 'normal' tired. I also need to sleep most afternoons otherwise I can't function at all.

As Tripitaka says, you have to be compassionate with yourself and if your body is telling you to rest, then snuggle in and don't feel guilty about it. If you acknowledge that exhaustion is part of the illness that you have, let yourself go with it and get the rest you need.

Take care

Hx

ALMOST EVERY DAY AND WHEN I DO DRAG MYSELF OUT OF BED I USUALLY END UP GOING BACK TO BED LATER IN THE DAY

Every single day. Day in Day out. I hate it. For me, it is THE most frustrating symptom of all. It makes me grieve for what I used to be like. I am constantly tired. I can't remember when I last got out of bed with a spring in my step. I struggle to do the basics every day. I don't work any more. I look after my family and that is more than enough for me to deal with. Fatigue has stolen my life. I am coming out of a flare right now. So I have been taking the children to school, coming home, put washing machine on, make a cup of tea, do some tidying up, back in bed by 10/11am and dozing/sleeping in bed until my alarm goes off at 3 to collect the children from school. I go to bed around 10.30/11pm and sleep. But then the whole cycle starts again. I have to get up by 6.50am to get my 3 ready for the school bus and drive the younger one, I drag myself out every day and by 10am I can barely keep my eyes open. Recently it's been so bad I haven't even had the energy to shower every day, it's been every other day - which is actually really good for my dry, itchy skin but not good for how I feel about myself. But even showering takes some effort. At the weekend I rest after my shower. So I can feel your pain. I wish there was a magic pill for it, but there isn't. It's the lupus.

jensen_lynne profile image
jensen_lynne in reply to Wendy39

ya when I sleep 12 hrs I'm still tired and I yawn, I should feel well rested but I don't, i fell asleep everyday

I noticed this in the past year or so with me too. I didnt know it was lupus. I have so much trouble getting up when I never use to. I get up at 6 to feed my girls breakfast. Get one on the bus, and the other I drive to school. I use to work part time and run off to work. And back to pick the girls up from school. I lost my job in January, and I dont even have the energy or mindset to get another job.

I try very hard every day to motivate myself to do something besides household chores. It is very difficult, and takes effort everyday to get out of the house.

My girls keep me going. They will be off to college in a couple of years. Dont know if i will ever get out of bed again. Ugh....

jensen_lynne profile image
jensen_lynne in reply to Natura

Even 9 hrs asleep I'm still very tired

Hi Jensen, I feel like this most days. I've even cried a few mornings at the thought of getting of bed. I know that we should be resting, but sadly life sometimes gets in the way. I have to get up to get children to school etc. I think we need to be as kind as possible to ourselves and rest when we can. Hope you feel better soon x

Getting out of bed - I am tired if I do, and I'm tired if I don't. With this in mind I usually choose DO as facing the day is psychologically more healthy and empowering, but sometimes I have a duvet day to heal.

We have to stick together, we have to keep getting out of bed and facing the day otherwise it's grim. Life is tough for most people with illness and without.

Bright blessings

TTxx

I too, have this problem. The pain and stiffness in the morning is bad enough but I'm also just still so very exhausted every morning. I sleep until the very last moment. I go to work and everyone says you just look so tired all the time. I was having a flare a few weeks ago and dr put me on steroids, about 3/4 days in I started feeling soooooo good. I felt more normal than I have in so very long. So at the end I ask my dr to extend the prescription and this round has been very different unless something else is going on? I'm typically a very outgoing person. Usually the one that volunteers to head things up, manage it all and still be home to handle life and all that goes with it. Now, I'm barely getting to work and while there I'm overwhelmed and under productive. Don't even mention how my home life had deteriorated. I'm a totally different person and as someone above said I morn for my old self. ❤

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