So I am working on an ethnography paper for my comp. class and so I am wondering what is a normal day for you all? What do you do? How do you use your "spoons"? What do you use to help you get through the day? Or anything you would like to add. Thanks so much for your help!!! :D
I try to vary what few activities I can still do at full speed, so each day might be a little different. Because I am an insomniac, I generally wake up very early and cannot usually return to sleep. To pass the time, I watch the early television news. Later I will read a little bit of a novel and eat a little breakfast. If my dizziness is at a minimum and breathing is not too difficult, I will head out to the grocery or some such place around 11 a,m, or noon. I often take a good nap in afternoon, especially after bad insomnia nights.
The rest of the day might be spent at doctors' appointments or watching TV. Super exciting, right? Hah!!
Thomas Franklin
I use the spoons sparingly so I always have some in reserve for unplanned activities I discovered many years ago that the world doesn't come to an end because the kitchen isn't mopped or the laundry not done - instead of exhausting myself because I'm afraid of what others might think I spend that time doing things with more value- like going to school as in your instance I also learned with this illness that you may get awfully tired but won't die from fatigue and don't let that become an excuse to not do things You only have one life- there are no reruns or do-overs so you gotta do the best you can with what you got.
Up until a couple of weeks ago, I had been working part-time and I literally had to do NOTHING on work days in order to have enough energy to get through work. On days off I would try to do "big" things like go to the grocery store...
Now that I'm not working, its easier. During the week that we have my granddaughter I get her ready and take her to school and pick her up after school. While she's at school I try to do a little housework (the dishes at least) and seem to spend a lot of time on the computer trying to manage my finances. (getting disability, getting loan modifications, paying bills etc), healthcare (insurance changes, doctors appts, med refills). After school I take her to swimming or ballet, whatever might be on her schedule that day and help her with her homework. On some nights I make dinner for the family. I'm spent by 8:30 PM and pass out from exhaustion.
On the weeks we don't have my granddaughter I sleep my 12-16 hours and have tried to organize things into 1 major outing a day only. Things like going to the grocery store now wear me out completely and I have to rest and ice my legs when I get home. The day goes by pretty fast when you're only awake 8 hours.... sometimes I take a nap in the afternoon. I sleep wayyyy too much, but that's just the way it is. I watch a little tv, do crossword puzzles on line with friends, nothing very exciting.
Wow! You live an active life. You don't have time to think about Lupus. Maybe that's my problem I think about this disease too much. You set a great example for people living with Lupus, Lone Wolf. Your reply has encouraged me to choose life.
lone wolf said:
My day is usually beautiful. I teach many classes a week in Qigong, Chinese Moving Medicine. I lecture at a state University and have many speaking engagements during the month. I walk, 3-5 miles every day, taking one day off to recoup. I write, as I am in the middle of two books that will be helpful to the general population; one on teenage addiction, and the other on Alzhiemer. I take opera classes once a week, learning about opera in every aspect. I get together with friends for lunch when time permits, or just to have tea and share stories. I go dancing with my husband, and country line dancing by myself every so often. I meditate, concentrate, and re-iterate to myself that I am not this dis-ease. I always look for natural methods of treatment, and I stay away form the Dr. as much as possible. This is just a snapshot of a person with CNS lupus, and many other lupus related issues...but I choose Life, and push thru the tough time to not waste a minute of this precious journey...I wish you all the fortitude to LIVE with lupus...Be Well...lone wolf
I wake up about 6:30 every morning and my day depends on how I feel. What is routine is I take my med that's suppose to be taken on an empty stomach. Then I check my blood pressure and sugar,(because I am also a diabetic), cook me a breakfast (usually grits, one egg, one turkey sausage). Then I take the 14 different medicines I'm prescribed for Lupus, Chronic kidney disease stage 3, hypertension, hyperlipidemia, hypothyroidism, allergic rhinitis, GERD, Bipolar disorder, anxiety, chronic otitis externa, Anemia and other side illnesses due to side affects of the medication, like joint problems, hair loss, flares etc.. I eat lunch before I take a nap.Some of the meds make me drowsy so I take a nap about 1pm if not sooner, but I check my computer and phone messages first. When I wake up I take mid-day meds, watch the news and TV, maybe sit on the front porch. I eat dinner about 5:30pm. I have Doctor appointments with 5 different specialist once every month or two but I see my Rheumy and mental health professional every 3 months( I just started that routine thank goodness). The rest of the day is a given. I'm usually taking another nap at 8pm I wake up about 10pm take night meds, take a shower and get ready for bed only I've been sleeping all day so I get on the computer or watch TV or both. I'm looking for an exercise program to join. I checked into Zumba. I have a lot of time on my hands. I'm on disability and want to work but I'm not able to.
I make myself get up at 6:30 or 7:00, have coffee watch the morning news shows. I shower or bathe and am ready by 10 or 11 if I have to run errands. I am busy with my dogs and cats in between. I will go out to lunch with friends, chiropractor or accupuncture once in awhile. Some weeks I just stay home and try to do cleaning and de-cluttering projects! Then I will take naps with my animals...my favorite time of day! I am aware that I need to conserve my spoons, but I do overdue often. When I need to cook dinner for my husband it is usually hard because I am at my lowest energy level.
I am very lucky that I can still go out with my family and friends. Like Thomas I read a lot and watch TV.
I would like to do more creative things too. I have a friend who is going to teach me to crochet a baby blanket as I will be a first time grandmother in April. I am really looking forward to that happy change in our lives. Hope this helps you!
LupusRRJ said:
I wake up about 6:30 every morning and my day depends on how I feel. What is routine is I take my med that's suppose to be taken on an empty stomach. Then I check my sugar because I am also a diabetic, cook me a breakfast (usually grits, one egg, one turkey sausage). Then I take the 14 different medicines I'm prescribed for Lupus, Chronic kidney disease stage 3, hypertension, hyperlipidemia, hypothyroidism, allergic rhinitis, GERD, depression, anxiety, chronic otitis externa, Anemia and other side illnesses due to side affects of the medication, like joint problems, hair loss, flares etc.. I eat lunch before I take a nap.Some of the meds make me drowsy so I take a nap about 1pm if not sooner, but I check my computer and phone messages first. When I wake up I take mid-day meds, watch the news and TV, maybe sit on the front porch. I have Doctor appointments with 5 different specialist once every month or two but I see my Rheumy and mental health professional every 3 months( I just started that routine thank goodness). The rest of the day is a given. I'm usually taking another nap at 8pm wake up about 10pm take night meds. I'm looking for an exercise program to join. I checked into Zumba. I have a lot of time on my hands. I'm on disability and want to work but I'm not able to. I'm determined to fight this illness.
Hi
My days are almost always the same. I am awake by 5:30 (can't sleep) Make coffee and hubbys lunch. Watch TV for an hour and decided which 2 chores I will make myself do. such sweep and mopp the kitchen floor and living floor, or change the bed. Do one load of laundry every other day. If I have to food shop I can walk only half the grocery store in a day. Weak and tired just doing just that. If we are going out to dinner with friends I have to rest all afternoon. if not I will start getting dinner at 2. Set the table, rest, peel potatoes, rest, you get the picture. I too have 7 specialists, although I am not REAL sick, (yet). My pulmonogist wants me to exercise and I just laugh. I'm lucky I make it up and down the stairs. I try to stay awake til 11 but that doesn't happen often. I have insomnia. I'm tired just reading what some of you accomplish in a day. I'm not a lazy person, I worked full time till I was 68 and then I retired. Biggest mistake I ever made. I bot a small shop where I did bridal alterations(which I did my whole like), til I had to give up one year ago. I've tried to push myself but it doesn't work.
I wake up with my husband at 4am. I have usually slept about 2-2 1/2 hr at that time. I am working on sleeping upto 3 hours at a time. I take my 19 am meds and try to lie still and like freightliner figure what 1or 2 things I can tackle in the day.
Although I don’t have the balance or sure-footedness to shower with no one else in the house I have found the foam no rinse cleansers from CVS and such a lifesaver for staying clean. I try to take 1day a week and make several different g-f meal starters for the rest of the week. I.e. boil 5 lbs of red potatoes and they can be used dozens of different ways through the week.
Because I have been told I can’t work anymore, I research other TX options such as vitamins and diet options.
Of course I am napping throughout the day ( no more than 2 hrs of course).
I have a wonderful husband and try to do something nice for him anytime I have any extra energy. Dinner ready when he gets home or on really good days a nice dessert. 
I plan slow starts for the morning time to get up get washed and dressed and take all my meds maybe two hours or so. I try if its a reasonably good day to get at least one chore done like grocery shopping or the pharmacy or a load of laundry then lunch and an afternoon nap. I get up make supper and watch a little TV then meds and bed. that's an average day Hope I helped so glad to see you are still working on your classes. God Bless Julie
Just t omake it through for a good day? That's a good question !!!! LOL NoRMAL DAY!!! 1. If the morning starts off without me sitting on the side of the bed thinking how to stand up or are my feet going to hold me up - I know it will be a great day !! 2. Putting on my clothes without help , 3. Opening something without asking for help , 4. Sitting for more than an hour in one spot for more than an hour ( am on a roll then ) , and then 5. if the weather is good (mild temp) . So that's what my good/normal day is , and everything else just go into the day .... Beverly L.
Wow!! Thank you all for the response. I’m really looking forward to this paper and getting to put it all together! Get to share this disease and inform people of a silent disease.
I mostly sleep all day recently. I live with two cats, i have terrible sleep habits, starting a a few years back when my rheumy put me on nuvigil, to give me more energy. It helped, but made it hard to sleep at night. After about a year, I stopped taking it, because my body stopped waking up to an alarm (I was working part time then). It’s been about 2 years, and I still can 't wake up to an alarm. I think the stuff made me use energy I didn’t have, and now I have quit working, had a really bad flare, have been on cellcept and later benlysta, and I have almost no energy at all. That’s the lupus, the meds, and all -wrapped into one crazy package. One of my biggest lupus issues from the beginning has been lack of energy- and I hardly do anything all day but read, sleep and otherwise amuse myself while sitting on the couch. It’s really hard to answer when people say what have you been doing lately? I’m still going out to lunch with a couple of friends here and there, and to the grocery store.
well my mornings start usually with pain, so i gauge it on how much pain i am having,,,,,, that depends on what i can do, having lupus really sucks the life out of you sometimes, i hope you are feeling alright........... purrs..catspaw1955
My days start very early around 4am, watch the news shows, maybe a movie, if I'm having a good day I might do some embroidery, I seldom go out, my lupus is severe and has left me with many health problems, and I need my spoons to just get through the day, its not easy and its no kind of life for anyone, but I've no one to blame but myself I made the choice to quit all my meds, now I find myself going back for treatment after nearly 2 years of what can only be described as a slow and painful descent into a kind of hell I wouldn't wish on my worst enemy.
No Thank You ...you are right this is a silent disease because so many of us do not look sick, Thank you for trying to get the word out. You rock God bless Julie
Louters said:
Wow!! Thank you all for the response. I'm really looking forward to this paper and getting to put it all together! Get to share this disease and inform people of a silent disease.
Dear Lone Wolf... I am interested in the alternative protocols you are speaking about, please send any and all information you might have regarding gi issues, joint pain, eye health, rashes you know the normal for SLE Lupus patients lol Thank you so much God Bless Julie
lone wolf said:
Please keep in mind that there is a world of medicine out there! PLease explore medicine that comes from other countries. The US is not the only place that produces medications and treatments. As you probably read in my response earlier, I live a very active life with lupus, and have always chosen to avail myself of other kinds of treatment. I encourage you to investigate, as I encourage everyone on this site.
Be Well,
lone wolf
hi again hopeful,my days start the same way i wake up at about 4 30 am with pain of course and i just feel what is the use some times, but i pray, and i tell you that has got me through it , more times than i can count so you just hang in there sweetie, and you are in my prayers...purrs..catspaw1955
hopeful said:
My days start very early around 4am, watch the news shows, maybe a movie, if I'm having a good day I might do some embroidery, I seldom go out, my lupus is severe and has left me with many health problems, and I need my spoons to just get through the day, its not easy and its no kind of life for anyone, but I've no one to blame but myself I made the choice to quit all my meds, now I find myself going back for treatment after nearly 2 years of what can only be described as a slow and painful descent into a kind of hell I wouldn't wish on my worst enemy.
catspaw1955
thank you for the kind words and encouragement somedays are just harder than others, I'm so glad I found this site at least here everyone understands the struggle I've with all these years.
catspaw1955 said:
hi again hopeful,my days start the same way i wake up at about 4 30 am with pain of course and i just feel what is the use some times, but i pray, and i tell you that has got me through it , more times than i can count so you just hang in there sweetie, and you are in my prayers...purrs..catspaw1955
hopeful said:My days start very early around 4am, watch the news shows, maybe a movie, if I'm having a good day I might do some embroidery, I seldom go out, my lupus is severe and has left me with many health problems, and I need my spoons to just get through the day, its not easy and its no kind of life for anyone, but I've no one to blame but myself I made the choice to quit all my meds, now I find myself going back for treatment after nearly 2 years of what can only be described as a slow and painful descent into a kind of hell I wouldn't wish on my worst enemy.