Everytime I go out I end up ill for the following week may just be a cold sometimes it ends up with a lupus flare. Everyone who knows me when I mention a night out they sigh and tell me I will be ill. I love going out but feeling so rough the next week is off putting. Anyone else experience this?
Just wondering if anyone else always ends up ill ... - LUPUS UK
Oh dear.... sorry to be negative, but I've almost given up going out in the evenings because it makes me ill. The mildest knock-on effect is being too tired to function for several days, and the worst can be a flare.
I hate it - it drives me mad, but I have come to accept that going out requires a lot of planning and 'preparation' - ie., I need to be able to have a quiet day beforehand, get a nap in the afternoon, and not have much on the next day, so that I can recover. this has nothing to do with drinking alcohol, for me. It is just (I think) the extra effort that isn't a big deal for the normals but for people with lupus can be enough to push us over that boundary....
Yes, me too. I always plan it carefully, rest during the day, no alcohol, leave at a reasonable time. But feel awful afterwards. Sooo frustrating, but I keep trying though!
orr yer i now how u feel ,i used to go out every fri sat sunday ,up 2 ,8 yrs ago and now i cant manage 1 nite out a month and when i do try to have a couple at home with the husband and the son watching the football i only end up aveing 2 or 3 pints and thats enought and takes me a week to get over that so the only time i go out now is special events now am always tired with out aving a drink so just cant funtion if ad a nite out takes me a week or maybe longer ,,,,
Yes me too. I'm actually planning a night out tomorrow and I'm feeling nervous about it because I feel under the weather (bit of a flare up)at the mo. I've planned nothing but rest on the day and the next day too, but even so I hope it doesn't make this flare any worse! I am determined to go out though, as missing it would be too depressing!
yes, me too ;( cant drink cause of meds i need to take to help me sleep, and takes me a couple of days usually to recover x
Me too! I go out once a month with friends only to the pub, but it requires careful preparation - the week before, I start to delay bedtime by 10mins extra (ish) each night , dont drink alcohol. Its so nice to feel normal for the night & catch up with friends!! I still suffer for that night out and yes, sometimes preparing to go out proves too much & I dont get there!!
Most of my friends are on facebook & they know I have lupus though I cant imagine they have delved into what it is - thats why I shared the daily facts during lupus awareness month, in the hope they read them!
Am I the only one who has become a hermit though because of lupus??
Nauuk - no, you're not. I find it easier to just look after myself without having to manage other people's expectations of what I should be able to do. Often I plan to go out but don't make it - I worry that my friends (the ones I have left) think I am a total waster of time, when they invite me, I say yes, and then have to phone at the last minute and say I can't go.
Luckily - we have the internet, and being so short of 'useful' time means that I am rarely bored. I'm either asleep, or catching up on stuff I didn't get done because I was asleep!
Aahhhh - isn't having lupus just the BEST fun?
Agree with the other replies. but if I'm completely honest I don't really enjoy "nights out" so perhaps my body and mind is really telling me something. Used to make excuses, don't bother any more, just say honestly THANKS, but NO THaNKS. Those who know me understand, I'm sure others think I'm just a miserable sod. Old enough now to say what I feel, but do TRY to be tactful;!! Just do what suits and don't let it be a problem
Like many of you the lupus affects me quite badly at times and I take plenty of meds, the frustrating part of the lupus is the fluctuating aspect of it. Recently, after having been very isolated I have decided that I need to enjoy my life more and that I want to socialise more with my friends, but this has come at a price. I do go out at weekends and I do enjoy myself but I always suffer as a result. Sometimes I need to sleep the whole of the next day and can feel the ramifications for a few days after that. Is it worth it you may wonder. Well I don't have any dependents and I don't have a partner currently so it is only me who is suffering. Perhaps I do need more balance in my life but I am loving the fact that I am seeing my friends and am out in the real world. It is a very difficult choice to make. I do agree with those of you who say that others don't always understand. If you are out they think you are perfectly fine, but people don't realise the sacrifices you are making before and after going out in order to go out..... Anyway this is just my current position.
I pay for it every time.
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