WHAT DO WE LUPIS CONSIDER A 'NORMAL' DAY?

Like all member of this forum, I read, digest and learn from all folk here, but not always remember!! So sometimes read again. It's a great forum and some folk are so knowledgeable, though sadly not me, I simply try and blank off the memory of a bad few days and try to say to myself tomorrow will be better come hell or high water, though this is not always the case. I would like to reply to some questions just to support the member of the forum but feel reluctant to do so, as I don't have sufficient knowledge to help.

It's got me wondering though, what is the normal day for us here on this forum?

For me, it's breathing problems; general pain; painful feet; joints that don't work and hurt; brain that refuses to work and the most embarrassing of all, memory or lack of it!! Amongst other things too numerous to mention without whinging.

So, what's your average day like?

20 Replies

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  • Hi KathinAryshire

    Interesting question you have asked. My average day is like yours, hot, painful feet , nerve and joint pain and loads of tiredness. If only there was a solution to the fatigue!. Don't put yourself down about not being able to help others on this Forum. W e all have experiences we can share that can help others!. X

  • Hi! My day starts with taking my medication whilst looking at the forums, latest news. As I'm off sick from work at the moment due to lupus I tend to 'potter', doing what I can when I can. I've learned to appreciate the simple things in life and not take for granted. If I can I go out on my mobility scooter to walk the dogs I am a happy lady. Keeping positive is difficult but with great family and friends to talk with makes it a little easier, and of course chatting on here gives reassurance. Today is going to be sunny, so although I will stay indoors for most of it, it will be nice to look out the windows watching my husband mowing the lawn ;)

  • On a bad day I get up, hobble downstairs. Wait for my back to go straight and the headache to kick in. Listen to my knees creak & groan at the effort of walking

    Take my meds

    Get me & the kids ready

    Do school run

    Come home & sleep till 1

    Get up repeat from hobble

    Have something to eat

    Pick up kids

    Play with them in a game that's sitting down or watch them play

    Kids bath & bed time at 6.30

    They're in bed at 7.30

    I'm in bed at 8

    On a good day.... Less hobbling & groaning in the morning

    Food shopping, tidy kitchen, bit of laundry between school runs

    A quick nap from 1-2

    Take kids to after school activities

    My bed time gets pushed till 9. Rock & roll lifestyle!

  • On a bad day, i just want to hide away from the World and cry, but unfortunately with 2children this is not possible, i have returned to work part time which has given me motivation, i am in chronic pain all the time, as for fatigue in tired being tired, get your vitamin d checked, i joined this site a few months ago and it is great for tips and sharing experiences.

  • I have been off work sick since Christmas with a flare so my average day starts with dragging myself into the shower and considering whether to cut my hair again because it takes too long to dry. Then take the first of my meds, breakfast then remaining meds and slump in the chair. Then watch Homes under the Hammer while I decide on which of the chair bound hobbies to undertake - mainly origami flowers as it keeps my hands moving because they stiffen up with arthritis. After that I usually go through a range of activities which include crying my eyes out because I'm house bound and bored, then convince my self I'm about to self combust because I'm so hot, then run to the loo because the Azathioprine has been increased again then I'm worn out have a cry at something on TV. Hubby pops in when he can throughout the day but I can't remember anything I was going to tell him, then daughter comes home and tells me off for clearly doing too much during the day! :)

  • I know how you mean by going short thing. I did and now I would like it long again but drying it has my arms aching and me tired.

  • When it comes to hair men have it so easy

  • I did cut my hair and stopped dyeing it too. The color at 67 surprised me. I love it and love not fussing with it. It's quick and easy and I can blow dry it quickly!!

  • I don't know if I'm brave enough for that

  • -:)

  • Hi Kath,

    I consider myself to be very mild and very lucky as far as Lupus is concerned. Like you I'm not very knowledgeable, definitely not when i here what people are going through. My main problems are fatigue, memory loss and a word problem where some days I just can't speak. ( I just try to laugh it off, especially at work). I get varied pain problems but again I am lucky - I do wake without pain some days. I always struggle to wake up, and I'm stiff. Usually it takes 2 hours to wake properly and move better. Originally I was having an achy pain in my finger joints and sore knees but that improved for a little while. My knees are sore again on and off but my feet now hurt and that causes problems. I do, unlike many on here though, manage to walk for an hour before I have to stop through pain. In fact longer on a good day. I adapted the type of shoes I wear and that helped. I get the heels out occasionally but refuse to move lolx.

    I also have possible myositis and this effects my muscles. I find walking up stairs very difficult. I can't walk at the same rate as others on an incline. Again I'm lucky , it's mild, and I haven't any muscle wastage. At home we have 2 flights aof stairs and I'm ok most days on the first one but by the second I'm using the banister to pull me up. Luckily my arms aren't too bad, they just ache. Other than all theses aches and pains I get rib ache. It comes if I'm tired, stressed or I've slept badly. It niggles on and on with none if the first line pain killers being very effective, but when I read what people put up with on here, I'm lucky.

    I work and I vary in my ability to do it well. As I say the beginning of the day is hard and I go to bed after the 7.5 hrs for a sleep as soon as I get in. I'm lucky that my kids are happy to have a go at cooking. Although the house always looks like a bomb has hit it. I used to be constantly doing housework! I feel for the kids as mum is often shattered but she gets up to taxi most times. I get down and I have terrible days but as you say I know there will be better days. I am thinking after reading posts and advice I have been given to reduce my hours but I've got to work that out in my head. I can't cope with the hours my husband puts in now. In my mind I'm supposed to be helping.

    Oops that was long winded , sorry

    Take care x

  • Your post sounds just like me. I too have a word issues and I too laugh it off at work, usually say "oh you now what I mean", that sort of thing. I thought I was going mad at one point until I researched more into Lupus as I am also not very clued up and frankly neither is my GP. If it wasn't for this website I'd be lost. My main problem is also fatigue. I drag myself up in the mornings and cross fingers my back will co-operate, I tend to be stiff on most of my joints. Then I get dressed, take meds and start trek to bus stop to get to work. I find on the way home worse as by then I am drained and the muscle pains in my legs are so bad that I tend to drag feet rather than walk properly as every step is torture. I am spending a fortune on cabs per week to get me from bus stop to my home as going up the hill is beyond me. I am in negotiations with work at present to reduce my hours. Was sent to Occupational Health this week who were very supportive and am just awaiting works decision. Cross fingers!

  • This is when I am lucky I drive. It tires me but work is less than 30 min away by car, half that on a good day. I don't know how you manage after work. Bet you look totally fine to everyone tho and no one lets you have their seat etc x

  • Hi I crawl out of bed , to look after my 2dogs and cat ,let them out ,feed them make my the one coffee I aloe myself ,sit in the chair for about an hour , read the post on healthunlocked ,make my self some toast and tea and then crawl back upstairs and get washed and dressed it's usually 11 by then .then it's a decision time am I feeling like I can get the dogs in the car to take them for a walk or leave them for the dog walker (if he turns up he's very good but he has bad days to , ) then its another sit down , then it's another decision can I do a job round the house if I am lucky it will be yes ,then it's sit and rest and try not to fall asleep , then it's decision time again can I cook or is it something on toast ,then it's ring my children the highlight of my day then it's back to tv then is bed. When you see your day in front of you like this it make you think what it used to be like , the sun is shining and it should of read well up at 8 off to the beach which is 50 miles away be there for 10 have a sandwich fly kites ,have a dip , go for a walk have a nap , fly kite again a least an hour , have another dip ,drive home , go to cinema have a drink and bed that was a normal Sunday for me when the sun was shinning 4 years ago :-(

  • Hmmmmmmmmm,

    just about sums it all up. But even though those pesky memories keep entering my mind, I do try and think of them as been there, done that and have a pile of Tshirts in the corner! I find this helps (sometimes) !!

    Upwards and onwards, you are not alone xxx

  • I no longer go to work so can get up at 7.30am instead of 5am. Knees, feet and back all creak first thing in morning. Take painkillers to try and head off pain that will come during day. Wash, dress. Feed cats and chickens. Feed me. Watch TV until 9am. Do housework. If we have to go shopping, my husband drives as I have lost all confidence in driving. Nearest "town" to us is 25 miles away. After journey I am stiff and aching. Knackered after only an hour of going round supermarket. Try and get out in garden to potter a bit, but have found if I'm out in strong sun for too long I will feel awful next day. On top of usual day to day chores I am joint carer with my husband for very aged mother in law who lives with us. She is forever down the doctors with various problems - all of them so far have been imaginary, yet she gets told how good she is for her age (89). She never, ever stops complaining. I keep well clear of doctors. By this time my legs will be aching .End of day I am exhausted and wondering if I am going to get cramps in feet/legs in bed. I feel so much older than I actually am. However - my first grandchild is due to be born any day now, and I am looking forward to that a lot.

  • My days have been pretty bad lately. Been having a flare since I had a colon resection last October. I had a friend staying for a few days and the stress and fatigue knocked me out for days. Slept most of the days and nights.

    Headaches every day, nausea, itching, aching legs, memory like a sieve, rashes, feeling overwhelmed by the state of the house and garden.

    Managed to go out for a meal and a few drinks at the weekend, then woke at 3.30am feeling as sick as a dog.

    Planning on going to college in September....not sure how I am going to cope. Got another surgery coming up soon too.

    Live on my own and constantly worry about future and finance. Cry at everything sad on TV. After seeing my mother die from auto immune disease and my cat and dog die from old age...think about death more often than I should.

    Feel like some kind of weird alien on bad days, and something like human on good.

    When I go shopping, I mostly can't even empty shopping bags lately, and too tired to cook...need to lie down and usually sleep for hours.

    I have auto immune hepatitis, renal problems Sjogrens and fibromyalgia as well, so not sure what symptoms are from what illness....

  • Hi there, not put much on here since joining a few weeks ago, but thought I would reply with what my day consists of. I have to drag myself out of bed most days. One week my husband works a day shift starting at 6am to 2pm, so I get up at 7am, get our little boy ready for nursery and have breakfast, take son to nursery, come home and never feel like doing a lot as I always feel tired and fatigued. Maybe wash pots, washing and small pile of ironing, don't do any cleaning as such. I know if I wash floors etc I wouldn't be able to move for weeks. Collect son from nursery at lunch time then have lunch, hubby home, so when it's nice he'll take son to the park and I do tea. Have tea, wash up, hubby sees to son getting ready for bed, then he dries pots. In bed fro about 9pm.

    The following week hubby is on an afternoon shift 2pm to 10pm so he gets up with son while I have a lay in, but still find it hard to drag myself out of bed, but I do sometimes get that look when I arrive downstairs from hubby as if to say where have you been. I feel he doesn't appear to understand the full extent of the fatigue and aching we lupus sufferers go through.

    We have both been married before and have 2 grown up children each. Both his live in their own places and my daughter who has moderate learning difficulties lives in supported living, but my son lives with us for 1 week and his girl friends another. He is usually here when hubby is on the afternoon shift, so arrives home after work about 7pm. Although I try to prepare meals for them it is getting to the stage that I can't any longer, I'm usually 9 times out of 10 left with a pile of washing up after them and if I say anything they think I'm getting at them. I feel they certainly don't understand the problems faced with lupus. My daughter, bless her does visit and will help with some of the small tasks, she is a little more understanding.

    My sister lives some 200 miles away and she phones me often. Her daughter in law has just been diagnosed with fibro myalgia, so she understands how I feel and would help if she lived nearer.

    One of the things I am now having problems with is the memory and it's like a fog sometimes. I feel I can't go out anywhere especially shopping without some one is with me. I am in a daze walking round a supermarket and my hubby asks what planet I'm on (not funny when I feel like I do). I do get lots of headaches too.

    I think I'm on the same medication as a lot of you are on (hydroxychloquine). It has helped a little.

    I know I've waffled, but felt I had to tell you all how I feel and hope it helps others too.

  • Hi I understand that look from your husband. I decided today that I didn't care. It's nearly 10pm and he isn't home and I feel really guilty but I have dropped my hours. He may work loads of hours, he works for himself, he doesn't have to . He must enjoy his job or no one would stay out that long. I like mine but I tend to be home and in bed straight after. I then get up to feed my kids, if I haven't persuaded them to do their own. I'm not due to retire. I can't see me getting any disability money so I'm cutting down and stuff the look or even a huff!

  • I have had short hair and started growing it in november but the pain in my hands and arms is awful when drying it I thot it was just me good to no others have this problem mayb time to go short again :)

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