How often would you say you have ‘good’ days? - LUPUS UK

LUPUS UK

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How often would you say you have ‘good’ days?

TeaandToast94 profile image
TeaandToast94

During the week I felt absolutely terrible, I’m sure we can all relate to the bizarre flu like symptoms or just ‘not feeling well’ even though I know there was actually nothing wrong with me, the exhaustion (needing to nap on my days off and on work days coming home and falling asleep on the sofa) and the aches and pains to joints etc...

However today I woke up not feeling too bad. Was a bit lethargic and achy after doing the big shop, then my husband decided he wanted to sort the garden out. So I was even doing some weeding and trimming back the hedges. Very achy and tired after this, but now I feel pretty good again in comparison to how I have been feeling!

I’m pretty certain I won’t be good tomorrow after that work and being out in the sun, but it was nice to make the most of the day! How often would you say you have good days?

And if you’re going through a flare right now, sending soothing, restful thoughts your way

28 Replies

hard to say. fatigue can just hit me like walking into wall. one moment i'm ok and the next i'm just wiped out. can hit me right after waking up or at the end of the day

Absolutely know what you mean, sometimes I’m fatigued a lot earlier or later than I would usually be with sometimes now pattern to it. The fatigue is one of the worst bits I think for that reason

if I could get rid of either fatigue or pain I'd choose to get rid of fatigue. with pain you can choose whether something you want to do is worth the pain but fatigue just wipes me out.

Absolutely. I can usually do something about the pain, drugs-wise. But fatigue? Well, very little - other than rest.

No pattern at all .....if I do too much on a good day it will wipe me out for several afterwards.i think one of the hardest things is pacing a good day so you dont have several bad ones afterwards.i also think you cant always tell the one thing youve done on a good day that sends you crashing into the wall that is fatigue.....did you hoover 1 room too many,did you weed too much ,did you walk 10 mins too far ( guilty of that 1 lol ) .other factors come into too like the weather ....these warm days will take their toll just like the cold or the wind. Xx

This is exactly how I feel x

I going to meet up with my daughter and grandchildren on thurs for the first time since August. I know it will wipe me out so need to do as little as possible beforehand and be prepared for 2 sleep days afterwards .people who dont walk In our shoes havent got a clue how much it impacts on us...if they did theyd never complain they were "tired" again lol xx

I am living with it and learning about the disease from people here. It’s difficult for others to understand. It’s been over a year since it got worse, only few good days over the last year. I kept doing all the wrong things. Now I know that I just have to be careful...

Yes absolutely!

Active social interaction with relatives and children can be most exhausting but what gets me is this,

“You look so well, how can you be tired 🥱?” particularly from adult relatives who know I’ve got lupus.

And worse still “it’s such a lovely, hot sunny day, come out in the sun and stop sitting in the shade!”

Hopeless advice.😫😭😰

Oh this so resonates with me, my neice stayed over Sunday night which means I have her the next day. It exhausts me literally, I feel guilty because she loves to stay and wants to come again because its half term.

I feel like a total lightweight!...jx

Absolutely! I really agree. I certainly try to pace myself as like you said one additional thing can just tip it over the edge. And I often have to ‘prepare’ for events too and then pay for it with rest time afterward too. Really hoping you enjoy time with family this week! X

Thanks ...its my birthday too .I had my 50th in lockdown last year unable to see anyone so its extra extra special.xx

Have a great birthday with your loved ones !

Thank you very much April xx

Yes, this is me, too. Not just fatigue but overall malaise following over exertion i.e. dusting, etc!

This is a super interesting question. I think most days I'm tired and things feel like an effort. But if I'm able to recharge (do nothing) I'll get one good day a week. Eg Saturday is my recharge day and Sunday I'm usually feeling better for it.

Yes energy is definitely a currency in our world isn’t it. I find after shifts the next day I’m paying for the energy used and can’t push myself to do anything more than rest

70%

The unpredictability really winds me up ! And when I have these days I try to reason....have I picked up a bug?have I picked up a cold ? Is it hay-fever? I still don't know half the time. The only time I can be sure is when its a long flare. The short 24- 7 days episodes are still a mystery. Because of cause we do pick these everyday illnesses too( I work in a primary school) so its part of the job. All very confusing x

stillsdisease profile image
stillsdisease in reply to BonnyB

I agree, not knowing what the day will be like makes it hard to plan. When I wake up I decide where I hurt most and plan accordingly.Wrists, knees and hips are usually worst so rock n rolling for me 😆

TeaandToast94 profile image
TeaandToast94 in reply to BonnyB

Absolutely, I work in healthcare so I always think “great another cold!” And of course Covid is on my mind too... but I’d feel fine otherwise so I assume they must be flares. I definitely try to rationalise it in my mind x

It’s great when you feel well enough to do normal things isn’t it and I’m glad you enjoyed the day. Hopefully whatever’s giving the relief lasts today too.In answer to how often / for me it’s 75% bad days v 25% ok days but then there’s bad days snd very bad days. I try and track these via food reactions, stress etc but can find no pattern. On a good day like yours yesterday I would just make the most of it and if that means resting the next day then so be it.

Make hay while the sun shines 😎

Interesting about tracking possible causes! I try to make links too and have made changes to my diet etc as I know there are certainly some things that make me feel awful! Definitely agree about making the most of it. If I feel ok then I definitely push myself which as we know isn’t always ideal.

Very achy today and have rashes that feel like they’re on fire but glad I enjoyed the day yesterday!

Tomatoes and grapefruit are really bad for my joints which is a pity as I love both!

Best wishes for better days.It is not easy. Find strength in knowing that there are others with worst situations. God bless you

That depends on what you term a good day. Do you work out what a good day is by comparing it to your current bad days? Or do you stick with a good day being what used to be normal for you? As I deteriorate my definition of a good day to me is different to that of 10 or 20 years ago. A good day now is similar to a bad day back then to a large extent. So I cannot say how often I have a good day, it changes all the time. X

I definitely see my good days in comparison to my bad days. So if fatigue hits later than on a bad day, that’s ok to me.. or if I’m not in awful pain with my joints then that’s good too. Although I then really over do it which I’ve done the past couple of days.It’s definitely something fluid which changes all the time isn’t it x

I try not to spend too much time dwelling on thinking about whether it is a good or bad day. This can create more stress, kind of like trying to think about exactly where your feet are every moment of a dance.. or taking your temperature every few minutes wanting the fever to go away and upset when it isn't.

Instead focus on how you are feeling and what to do about it. Have skills in your toolbox to feel confident you can deal with whatever crops up.

Feeling tired today? Go lie now for a few minutes and relax rather than telling yourself you're having a bad day.

Feeling more energetic today? Go do a task that you've wanted to do. Don't have the energy? Take it easier and wait until you do.

So see life as waves you are surfing rather than focusing on hurdles you must count and climb. Try to float when your symptoms are bad, and paddle forward when you feel better.

No good or bad days.. just surfing your way thru life.. sometimes it's more fun than others, sometimes easier, sometimes harder. Don't put yourself into the good day/bad day boxes.. that makes it feel harder a.d more discouraging. Practice self care and pacing yourself.

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