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Razzleberry
06-20-2006, 12:54 PM
I've been steadily improving since my hospitalization and diagnosis of Lupus ...on prednisone and plaquenil ....but today I'm just not doing well. I'm sooo tired and achey and sore and headachey and just miserable ....and yesterday AM I was so good! I had energy; I even gardened a bit. Last evening I went with my hubby for a bit of a car ride/dinner and I think I might have over done it. My question: Is this what will happen? I assumed that once I started to improve it'd be a steady upward climb back to good health. I didn't anticipate this really bad day. And now ....will I be starting from here again or do you think my good days will come back tomorrow. Looking for all your expertise and experience here. I'm still new to all this.
Thanks, Sharon

ButterflyRN
06-20-2006, 02:31 PM
You'll have good days and bad days. I've experienced those days where I've had one good day and the next isn't so good. You'll learn what your body can handle and can't handle. I learned that with work. I'm only 27 but I only work part time to save my health. Working full time is really hard for me. I know it's hard but have patience and you will find what is best for you. ~Butterfly

Saysusie
06-21-2006, 11:34 AM
One of the most insidious features of Lupus is the Relapse/Remission syndrome. Lupus is characterized by periods when the disease activity is minimal or absent (remission) and when it is active (relapse or flare). What's worse is the fact that we can never truly predict when we will relapse or when we will be in remission.,
Remission, like the disease, is different for each one of us. It can last for only a day or for years. The same is true for relapse (flares).
There are a lot of suggestions for avoiding relapse/flares and most of them talk about "not over doing" on those days when you feel good and have energy (remission). Here are some of the most common suggestions for avoiding flares or relapse:
Regular exercise.
Education about lupus and self-care.
Not smoking.
Eating a healthful, balanced diet.
Developing a support system of family, friends, and health professionals.
Avoiding the sun. If you must be in the sun, cover your arms and legs, wear a hat, and apply broad-spectrum sunscreen (covering both UVA and UVB rays) with a high sun protection factor (40 SPF or higher) to protect your skin.
Applying corticosteroid cream for rashes.
Taking nonsteroidal anti-inflammatory drugs (NSAIDs) and getting plenty of rest for mild joint pain and fever.
Taking antimalarial medications to treat fatigue, joint pain, skin rashes, and lung inflammation.
Taking low-dose corticosteroids if NSAIDs aren't effective in controlling your symptoms.

Peace and Blessings
Saysusie

Razzleberry
06-21-2006, 01:21 PM
I seem to do all those things you suggest Suzie ....I guess I just need to learn to take it easy even when I do feel good. Hard to get used to that tho :-) Today I feel much better and so maybe I didn't put my recovery back by too many days afterall. Thanks for all your valuable advice.
Sharon

Saysusie
06-23-2006, 09:28 AM
Yes, when we feel good and have those bursts of energy, it is hard for us to reign ourselves in. I get SOOOO excited when I have a day virtually free of pain and filled with energy. I want to do all of those things that I couldn't do when I was in pain and so tired. I run around vacuuming (sp?), polishing furniture, mopping floors, washing windows, working in the yard.......and then I get yelled at by my husband who tells me to "cut it out and get your @#!!! in this house and sit down!!"
We generally have a good laugh (only if I haven't made myself sick, then I get a lecture) and I rest for the remainder of the day.
We've agreed that I must regulate myself on my good days and my bad days! Only then can I pretty much stave off too many bad days in a row!

Oh, what we must do to try to maintain some semblance of health (lol)
Peace and Blessings
Saysusie

pinkjmf
06-23-2006, 09:46 AM
I understand completely.A friend called to see if I could go shopping I really would like to but I know that we usually spend all day and with 2 kids in tow,I better wait.I really miss the times going to the park and running with my son and spending the day bargin hunting.
I take my day one day at a time and we make up new games we can play now indoors.Life is so precious and I am going to enjoy every moment that I can to it's fullest.God has blessed me with a great family.
I hope that when my son grows up he sees that life is a joy not all pain.St. James was so right and sometimes you need a someone else to tell you .It seems so simple after you hear someone else tell you.Thank you St.James for your honesty.
God bless you

Mitch
06-24-2006, 08:39 PM
Mrs.Murdena! Hi! I can completely relate - I seem to be going thru the same thing now, too. The good day/bad day roller coaster seems to come to me in spurts. I might go about 2 months where I absolutely must sit and rest/close my eyes for at least 1/2 hr each day, just to make it to the end of the day. Then there are months where I make it without having the 'nap' in the middle of the day. I am beginning to deal w/it in this way. Each day I make a list (a much shorter one than I used to make). I will try to tackle one fairly big project a day (ie. clean the bathrooms, or do a few loads of laundry, or food-shop), and then throw in a couple of smaller things (running an errand). I have come to the conclusion that I must no longer clean the entire house in one day. I guess to sum it up - 'baby steps'. If I at least accomplish what I set out to do, I feel I accomplished something. Warm weather seems to make it worse for me. The fatigue can be overwhelming. It's easy to become disguested, I know. I am the kind of person who can't sit down. It makes me crazy when I 'have' to. Hopefully, it's just a phase, and will soon pass. It just takes time to establish a 'new normal' and begin to understand your limits. We're all guilty of overdoing it, and then we pay!

Hang in there!

Mitch

ALLoWeyo
06-25-2006, 09:35 AM
I had 2 hours for the first time in 6 months where I had no pain so I cleaned the entire house. It was spotless. Everyone yelled at me.... but I was sooooooooooo happy just to sit (in pain) in the clean house. It was worth it. I have a 6 month old puppy and I walk him many times a day. I refuse to let anyone else walk him even if I feel horrible because one of my greatest pleasures in life is walking with my little chihuahua beside me smiling.

Mitch
06-25-2006, 10:28 AM
AlloWeyo, I guess I'm not the ONLY one hobbling around walking my dog at least twice a day whether I want to or not! LOL! I do the same thing. I have a 2-1/2 y/o high energy dog who I have a real 'thing' for. I love him to death, even though he exhausts me! Yeah...that 'smile's' a killer!

I can certainly appreciate how sitting in the clean house feels, too. Makes you feel great mentally, physically's another story!

Mitch