What entails a "good day" and a "bad day" for you????

I have had lupus for 20 years and I feel like a heel asking this question... however, I have always powered through times where I feel exhausted. What does a good day look like to you? and what does a bad day look like to you? It has only been since I am on a medical leave from work that I can see how some days I'm so tired and some days I feel great and it often depends on how much I did the day before.... is this what a normal person feels... I have no idea the difference that a non lupus sufferer experiences and what we experience!!!! I DON'T KNOW NORMAL!!! WHAT IS IT??? HELP PLEASE!!!!

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  • I always feel reasonably okay in the mornings, but by late afternoon and evening i'm shuffling about like an elderly person. I've had lupus for roughly 12 years so it's hard to remember what normal is like. I did have a flare a couple of years ago and was put on high dose steroids. All my aches and pains disappeared and i had bags of energy. When we pulled up outside a supermarket, i flew out the car. I even had a dispute with some woman who was querying my blue badge. I gave her short shrift. Unfortunately as i reduced the steroids my aches and pains and stiffness returned. Thats about as normal as i can remember since having lupus.

  • Since getting Lupus I have had to reset all my expectations for what I can do in my life and I've found a new level of 'normal'.

    A good day for me is feeling like I have some energy to spend and I can do something enjoyable -like gardening or swimming- without completely 'wiping out'. I am never pain free but some days the pain is much less and I can ignore it and pretend I'm a normal person. I still have to rest though even on a good day.

    A bad day for me is struggling to get out of bed -perhaps it might take 2-3 hours, then all I can do is feed myself and do a bit of reading at most, husband has to cook and organise the kids. The pain might be much more intense (I get joint, muscle, nerve and tendon pain) and I have to rest before and after doing anything.

    I have not been able to work very much, I am a self employed artist and garden designer, and this year has been a real struggle to meet any deadlines and I've had to give up and put most of it on hold.

  • You have posed a really interesting question. I have had some form of autoimmune problem since I was 16 (I'm now 46) and so I don't actually know what it means to feel 'normal'. I have often wondered if I am just being a lazy person or if I am actually a hypochondriac as unlike many people with lupus, I don't often get swollen, inflamed joints . . . it's more a case of my arms or legs ache but there's nothing to actually see (very different from in my teens when I was using a wheelchair and had to be carried upstairs by my parents). I get absolutely exhausted from very little exertion . . . but maybe that's what my body has become used to? So through force of habit I tend not to attempt too much: vacuuming the house would wipe me out so I leave it until my husband gets fed up and does it himself (a bit of dust doesn't bother me anyway) - ergo: lazy or lupus fatigue? BTW I used to be a teacher but I couldn't cope with it - I've always suffered badly with panic attacks since my 20s and teaching just drove me over the edge (again - lupus neurological problems or just the way I am?)

    Sorry - I cannot actually answer your original question but I thought I would add my thoughts to your thread.

  • I try to classify my tiredness into lupus tired & normal tired. Which helps describe how I feel to my hubby.

    Good day- no tiredness, go to work, home & make dinner, maybe even visit friends/do gardening n go to bed after 10!!

    Bad day- need help getting up n down stairs, limbs are 'floppy' n can't sit upright for long. Can't do anything around the house, have to cancel meeting friends n not go to work!!!

    Most of my days are in-between my definitions, n a normal day is going to work, a bit of a rest on couch, help make dinner, relaxing or a short time (30 mins) of gardening, housework. But then I'm a bit wiped out!!

    I'm stubborn n don't like to give in to it!! xx

  • It really depends on how much I do during the day, and how I pace myself. If I overdo it then I will pay for it the next day by having inflammation of my joints and extreme fatigue. If I pace myself, do some things, rest, do some more then rest and go to sleep by 9 the latest 10 then I am ok the next day. For example, I am a teacher and I will work from 7:40 to 1:40 (not in the livng in the UK), eat lunch have a nap then do some work in the afternoon and cook dinner and go to bed around nine...I will feel ok and be fine the next day. I think the key is pace yourself, once you feel a bit tired, rest before it gets worse. I know you are on medical leave, but while you were at work did you get any type of accomodation..such no break duties, or substitutions???

  • Thanks all! Very helpful!!! No, i don't have any accomodations... at all, never have. I didn't think it would be well received... didn't think I would even be able to since our contract is all about x number of minutes of duty, x minutes of prep time, x minutes of breaks/recess, etc. Didn't think it would be negotiable. so, monpe, do you work part time then??

    My days are usually out of the house at 7:30, work by 8, kids come in at 9, day ends at 3:30 (running around all day, very little sit time), then sometimes coaching 3:30-5, home at 5:30, dead on the couch for 2 hours, up to make dinner, eat, then bed at 11. ... till the weekend.... then if there are tournaments or report cards, i'm poached and just can never get caught up... except on holidays. then by may and june I am running on nothing... not sure how I function.. lots of fuzz in the brain to do end of year trip and grade 8 graduation. I have no patience left for the kids, that's for sure!!!

    and that's my life for the last 8 years until this very fortunate event where a kid put a picture of a very inappropriate body part onto MY device which was lent to them to do a project. this picture was from the internet and my board pulled me out and put me under investigation by the police and childrens aid. so, I had a mental breakdown from teh injustice... tried to get back to work, went further down hill and am off on medical leave which is in hindsight a real blessing!!!

    b/c I have actually realized that i may be different from normal teachers becase of this lupus thing and I'm trying to explore that... so I really appreciate all your answers and replies!!!

    so, while I'm off, I have noticed that when I have a busy day with lots of manual labour, I am toast and in bed/couch the whole next day... is this normal or lupus tired??? I have no clue. intense exercise makes me feel horrible and all I want to do is sleep after it. I don't think I ever get joint pain, and want to figure out if I get fatigue.

    :)

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