How do people feel everyday?

I was just wondering how my fellow lupies felt on a daily basis.  I sometimes have trouble telling the difference between a flare and just feeling crummy because of lupus.  I know I was in a flare after the holidays and thankfully I am feeling better than I was a month ago. Right now I'm not as sick as I was right after the holidays, but I don't feel as good as I did before the holidays either.  I just don't know what is an "acceptable" level of pain and fatigue and what people with lupus should tollerate on a daily basis.  I really don't think I'm in an active flare right now, but I feel crummy.  I've been able to be up and around and can do a few things around the house and take care of the kids, but my body wants to be in bed resting and doing nothing, but I despise being in bed.  My fatigue on a scale of 1-10 is between a 4 and 7.  My pain has been ranging from a 4-6.  Like I said, I can be up and around and doing things, I just feel crummy.  I'd like to know if this is normal and how most others with lupus feel everyday. 

Generally I can tell within the first 2 hours of the day what the day will be like. Some days the whole day is shot, and even a warm shower & clean clothes don't get me going. Those are the days I have pain (2-3 of 10) that ibuprofen doesn't handle (I don't have any pain meds) and I cancel some of my plans for the day, substituting w/naps & laziness. I usually have at least one day like this each week. Other days I feel better, but I still limit myself to only 1 trip out to do something each day, and I try not to schedule more than 3 successive days of out-of-the-house errands, lunches, or other events. Too many strung together wipes me out for a couple of days...just massive fatigue, eye strain, and neuropathy, not pain. I'm just now feeling well enough to schedule things around the house -- I have house cleaners once a month, but am trying to get regular days set for groceries, general pickup/trash, and laundry. I've picked M,W,F for these, so they aren't all crammed together either. Definitely taking meds at regular times helps, as does a regular sleep schedule. Then some days my mind and my energy say "You're just slacking, get back to work, earn money!".... Cheers,

Hi Hippi,

 

It's interesting reading how others manage their days.  I think you brought up a great topic.

 

My days usually start around 8am.  I try to get at least 10 hour of sleep at night.  Like Lynnwood, I can usually tell in the first couple of hours what my day will be like.

 

For pain.  I would rate myself on a scale of 4-6 out of 10.  The only pain I have is my neck arthritis and shoulder tendonitis.  Otherwise, pain is not an issue for me.  I know, it's weird.  So on the really bad neck days, the pain can be 8 or 9.  I'm a walking zombie those days.  Headaches, muscle pain, total immobility to move my head.  It's a mess.  Days like that happen about 5 times a month. I do nothing those days, unless it's a very important medical appointment.  Or I have a wedding to shoot! Then I have to suck it up and just do it.  Not fun.

 

I split my days up.  I do one major thing in tha a.m., then one or two major things in the afternoons, then one major thing in the evening (sometimes).  That's when I'm really busy with work, doctor's appointments,etc.  If I can get 3 or 4 things accomplished in one day, I've done really well!  On my slow days, I take advantage of just staying home.  Sleeping in.  Maybe doing a little house cleaning or a load of laundry.  But nothing major at all.  I try to get on the illiptical for a bit, or do some pilates.  But I enjoy crapping out on the couch with a mug of tea and the t.v. remote, or a good book.  And my cat on my lap of course!

 

Another thing I like to do that is relaxing, is take my camera and do some landscape photography.  I'm only a half hour from the mountains, and the drive is peaceful.  So if I have an afternoon with nothing to do, I might do that.

 

I pretty much keep my evenings open for relaxing with my hubby, or having meetings with clients.  We're not big socializers.  So that helps balance my day by knowing that my evenings are quiet.

 

Trying to balance my life right now is hard.  I had 15 doctor/medical related appointments in January alone.  Plus my work, home, etc.  It was a hellish month. Not the norm.  Balance will return soon I hope! 

 

From what you described as your normal kind of day, pain, etc, I think you fall into the same category as all of us.  I know I'm flaring when that butterfly rash appears, and I feel like I have the flu all the time..... If you can hit the flare hard and fast, it can be short-lived.  It's recognizing a flare from your normal daily way of feeling.  Do you get your blood tested every month?  CBC, ESR, GGT, ALT, Alk Phos, ALT, urine?  I get that done at the beginning of every month.  It's a great way to catch a change in your disease activity before it gets out of hand.  I think that is one of the reasons why I can keep my lupus fairly quiet all the time. 

Have a good day Hippi, prayers are with you,

Ginny  

 

Ginny

Lately whatever is in my spine is flaring really bad. I am miserable from it. With so many different issues I never know for sure if it is lupus or something else. I can say I usually have good days and bad.

Reading everyone's responses I just keep thinking how bad I feel that we all have to go through this andnever know from day to day how we are going to feel. I think I need to get better about accepting the ups and downs of this whole thing and try to flow with it a little better. Today was actually a pretty good day although I'm worn out now. Redroase, I hope you get some relief from the back pain. I'm like you and sometimes can't figure out if some symptoms are lupus related or if it's something else or if maybe I have the flu, etc. Audrey Ann I give you so much credit for continuing to work. When you describe having no energy by the time you get home and by the weekend, you described exactly how I felt when I was working. I felt like I spent all my time away from work resting so I could have the energy to go back to work. I also know what you mean about it being hard to give in - I struggled with it for so long. The only thing I can say is that I think you will know when or if it gets to the point where you will need to retire. I struggled on and off for almost 2 years about quitting and then the month before I put in my notice, several things happened and I knew I just couldn't keep working. It was still a very hard decision.

Welcome to the forum klstalks. At this time my fatique has been bad, it is very hard for me to stand up. I am afraid that my job maybe at risk. I work 10 hrs plus per day, 5 - 6 days aweek. On top of that my wife and I are trying very hard to close our house, so we can move to our new home. Taking care of our children that is still at home and grandchildren, plus her mom and dad needs help.

I am sorry for your pain, you are not lazy...

I also work full time and spend my evenings and weekends recovering from the week and resting up for the week to come of course some days are better than others. Luckily I have a desk job and work with great people and have a wonderful boss. My hubby does most of the grocery shopping and helps me around the house. I usually try to straighten things up during the week and do the rest of the cleaning on the weekends. Like the others I can do a little here and there and have to rest in between. It's such a pain to have to stop when I'm the middle of something. Like last weekend me, hubby and daughter went shopping and I had to cut it short because I was exhausted. there was once a time when I could have shopped for hours without slowing down a bit.... not anymore.

Day to day I struggle with joint pain (hands, feet, hip and lower back) more than anything, on a scale from 1-10 I'm usually a 6-7. I try to get at least 9 hours of sleep at night and usually sleep in on Sat morning.

I can tell I am flaring by my level of fatigue, mouth sores and GI problems (intestinal and nausea).

May we all have a pain free peaceful sleep tonight!!! Take care all

Stacie... I swear we must be clones. Anytime you post, I feel as if we experience the exact same issues. I can always tell a flare from the GI symptoms and mouth sores, as well as the spinal symptoms. My pain scale on any given day is 4-6 like the others. I work full time up to ten hours a day 5-6 days a week as well. My coworkers are not supportive, unfortunately. Im in a fast paced IT environment and it tends to be dog eat dog here. On top of the fact that Im getting older (36 in the IT world is over the hill)... I may try to change fields soon. I feel so for PhDoc.... hes the provider for his family and doesnt have a choice in the hours he works. I feel the same way. There are days when I honestly think that this must be what death feels like... and then there are days when its not so bad. Thanks Hippi, for starting this topic.

Blessings,

Victoria, I certainly hope that "36 in the IT world is over the hill" is NOT true, as I'm 49 and still working (when lupus lets me) on leading edge research and development!!! LOL. I certainly admit that keeping up with computer hardware and software is much more challenging than many other industries where methods, techniques, etc are more stable. (Like how much does accounting change from year to year??) Our constantly changing environment is certainly not friendly to Lupus -- hard to think effectively w/lupus fatigue and cognitive impairments!! I had to take a (longish) break from the stress, and am looking forward to my return! You'll know when your body needs more attention than your mind -- it was very obvious in my case. Cheers,

I too know first thing what kinda day I am going to be heading into.
Getting up is Murder and I only get four hours sleep. I stagger, crash into things, mouth is a mess, I feel sick, in pain and the head is BUZZING. When the head buzzes (!) either in the evening or morning, I know for sure I am doing too much.
When I wake, I get up, the pain, the dystonia/chorea jigs and jerks make me.
I tidy and feed the dogs (ONe as from today RIP), and get in the car for college. Driving IS a distraction.
I then collapse in the car on arriving most days as I realise how awful I feel, I may have a weep or a short walk with stick and head into the building.
I want to stay til 3 pm but never do. I leave at lunch time.
I still havent quite grasped the enormity of my 'decline' into severe bad health probs. I still think I can be 'superwoman' and am 16 again.
And I act that way, as for instance I was sawing wood yesterday straight after bringing a friend to two shops a good distance away.
I have 'ants in my pants" I have to keep moving.
Rest/ relaxation/sleep are alien to me. Sleep once was reasonable but not now.
I feel so bad most days I am incredulous.
Sometimes, for psychological reasons I sleep on the sofa wrapped up in soft trows cos bed reminds me of 'sickie'
I prefer being in a room which is not the 'sickie' room and I actually feel better in my mind that way.
I am trying to devise the 'right' programme of activity for the level of illness, and I am trying to take breaks etc and learn to do nothing.
Its all a bit of a struggle.
Pain goes off the richter scale after too much activity, nerve pain.
vision is also poor when very tired.
The posts really helped me understand various peoples attitudes and management plans .
I need to take a leaf outa others books.
Xann

Hi there Canuckgirl!
What is LDN therapy? scuse ignorence, I am in Holy Ireland and things are different here!
xxAnn

Ann, It's low dose naltrexone therapy. It's actually HUGE in Ireland with multiple Doctor's using it. If you do an internet search you will likely locate something on it.

Thanks for the topic and all the tips in the replies. I am pretty much homebound. I don't plan activities for 2 days in a row. I usually take a trip to see a movie or to a coffeeshop once a week. I find that when I do too much around the house my fever goes up. Does anyone else have this symptom? Thanks for the timer idea Rosie. That might keep me from overdoing it. I try to take a shower every other day, do some laundry, vacuuming, load or unload the dishwasher, just do small things around the house and rest in bed inbetween. Thanks for the naltrexone tip Canuckgirl. I will check that out . . . and Ann Ireland, you are a superwoman! We all are. It takes a lot of courage, determination, every ounce of such limited energy, patience, and fortitude for us to make it through each and every day. Compared to how some healthy people breeze through their days -- we are all superwomen and supermen.