When will I learn?

[Susieliz39]

It’s ten years now since my lupus diagnosis and for the most part I ‘bob along’ with my symptoms. But from nowhere again, fatigue has floored me for two days. I’ve been awake to eat a bowl of cereal and then back sleeping!

It creeps up on me and I neither anticipated or welcomed its arrival! I don’t feel like I’ve done anything different to my norm but clearly something has triggered the need for me to sleep and sleep.......and sleep!

I just wondered if anyone can update me on their experiences with fatigue? Warning signs? Reasons? Ways of dealing with?

Hopefully, I’ll feel ‘more with it’ tomorrow and may be able to at least empty the dishwasher! Who knows?!

Thanks all!

Sue x

[Spanielmadlady]

Hi Sue....I often get bouts of fatigue and they still catch me out.sometimes I know the things that will wipe me out for a few days ....like travelling to visit family or a drop in steroids.sometimes there is no apparent cause .signs for me are lead legs ,no energy and heavy eyes as in i cant keep them open.ive learnt there is no point fighting it so i accept it and sleep there is also no point me tackling anything like a project or forms I've just got to put everything to one side.i also say no to things and people.

I dont beat up myself over it either I used to feel guilty but the world hasnt ended yet because I havent washed the pots or dusted.your body is telling you you need rest

[EOLHPC]

🤔 an infection just beginning to get going always does this to me...often I just think fatigue is flaring for days before the infection properly declares itself...

take care ❤️🍀 Coco

[svfarmer]

Hi Sue I’ve learnt the hard way that when I’m feeling really exhausted I have to rest and do nothing - I used to push myself in the beginning but as I say I’ve found out the hard way and have accepted that I just cannot live my life how I used to before the Lupus - I listen to my body now. The fatigue sometimes is just awful and never know from one day to another how I’m going to be on that particular day so just go with the flow xx

[Susieliz39]

Thanks ladies for your replies and wise advice. Fatigue is an inevitable part of this illness I suppose but just so frustrating when it comes to visit. For the most part, I’m able to go with the flow but there are times, especially when it interferes with plans, that it is so annoying!

Just want to say ‘thank you’ for all your posts too, I have learned so much from reading them. Lung function test next for me and appt with rheumatologist and respiratory consultant. Need to tackle my ‘reflux’ and constant coughing as well but can only cope with two referrals at once!

Take care all, Sue x

[HelenL75]

Sue - like Svf said I tried to push myself and get through bouts at the start but learnt to listen to the body and just sleep

Sometimes I can tell it’s coming as stress at work or travelling sets me off sometimes not done anything at all and 💤

[Susieliz39]

Thanks Helen for your reply. I was like that too, keep going, keep going but sleep rules in the end!

Well, today is a new day, so hopefully may see more of it than just an hour or so!

Have a good day x

[Hamptons]

Most of mine come from nowhere. However, if I have been busy I get a weird feeling in my chest, like liquid and then the next day I am useless.

[Susieliz39 in reply to Hamptons]

it’s the unpredictability that is so frustrating I think. You can make plans, even have plan a and b but then you have to resort to plan c, that wasn’t even in your plans at all! 🤔😩😂

Thanks for your reply Hamptons, expect you are on summer break now, like me. Just hoping I don’t sleep through it all!

[Hamptons in reply to Susieliz39]

That’d be nice, still going getting Sept stuff and School Covid ready. Nearly there.

Use your energy to have a lovely break.

[CecilyParsley]

Hi Susie, I seem to always have a level of fatigue. I never feel refreshed or full of energy but there are times when I just get a severe bout out of the blue. I have had to be wheelchaired out of supermarkets as I could do nothing but hang over the trolley. I feel as if the breath is knocked out of me and someone has taken my battery out. I too have tried to fight it but that is when I tend to fall, bump into things, drop things, cut myself. I am a walking disaster zone at these times. I also agree with Barnclown that it is very bad before an infection. At that time my body refuses to sleep, agitated, hot, cold, itchy, jerky so I go days without any sleep and afterwards sleep for days. I hope it eases for you soon xx

[Susieliz39]

Thank you for your reply CecilyParsley. That level of fatigue must be really quite worrying for you when it happens. I hope it doesn’t happen too often for you.

I don’t trust myself to do things Either when I feel really fatigued (well, that’s my excuse anyhow!) but fortunately it usually passes in a few days and then I carryon .......until the next time! 🙄

[SurferGuy]

Oh gosh! I remember when I was first diagnosed and how I would literally fight the disease. I'm one helluva competitive so-and-so. When I was feeling down, I'd fight it even more just to try and prove that I can beat it. I'm stronger than it. It will not win. No matter what...... Then I'd be down and out a few days later for couple of weeks!!!!!!

I do still do this sometimes. But then give in to the beast!

[Susieliz39]

hi surfer guy

That sounds very familiar! I’m so competitive too and don’t like to lose. Unfortunately, Lucy Lupus always wins the medal eventually!! 🙄😂