Lupus Lifestyle???

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puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 10/12/2008 12:49 PM (GMT -7)   
Well, here's another thread I hope to get lots of response on.  I've found that my "Lupus Lifestyle" seems to consist of having a day I feel good enough to go to the grocery store and maybe one other stop and then one to two days of recovery time.  After my son's party it took me tree days to recover enough to go grocery shopping, then I had to rest the rest of that day and all of the next.  Back when I was seeing my Rheumy(idiot), he seemed so positive that would be able to return to some sort of a normal life, but now I'm not so sure.  My hands are aching with just this little bit of typing.  I just have trouble accepting that my life will be reduced to what I can accomplish in one day while having to recouperate the next.  It's like I want to battle something.  They talk about the courage of cancer patients, battlling their disease to regain a healthy life and I want to battle for my life back.  The only thing is that it seems with Lupus, the more you do, the more you set yourself back.  How have the rest of you been "living with Lupus"?  I've read that section on the Lupus.org site and didn't really find any pertinent solutions there.  Thank you for the support.

Jennifer

PCP DX Lupus and Fibro, Taking plaquenil, Cymbalta, Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Darvocet.  Homeschooling Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/12/2008 1:42 PM (GMT -7)   
You nailed it.

Pulling out of flare requires a really delicate balance of limited activity and rest.

I've posted before that, at times, I've resigned to do 5 minutes per hour. Then boosting it bit by bit. But I make sure to do what I can w/o making things worse. Slipping in a few minutes at a time is safer, for me, than having a day of activity followed by rest. BUT . . . when I'm recovering from flare mode, I just start all over.

When I'm starting to recover, I can walk for a few minutes 2 or 2 times a day . . . but I can't walk 15 minutes once a day. So, for me, I can fit in more activity if it is very carefully timed. You'll need to see how your body reacts.

I hope that makes some sense.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 10/12/2008 3:29 PM (GMT -7)   
Thanks Rosie, I guess I just keep waiting to hear something like, "just wait until your meds get right and then you can go back to your life".  That's something that I'm realizing now that I'm just not going to hear.  It's so hard not to get depressed over something like that, but I know it's something everyone here knows all too well.  I'm emotionally fighting the whole issue that my life will never be the same again.  I guess if it was there wouldn't be such a need for this forum.  I keep trying to give my friends and family hope, telling that someday I'll be better, but in giving them false hope I give myself false hope and that helps no one.  God bless you and everyone here for the constant support and kind words.
 
By the Way,  ROSIE, here's a song for you that's a blast from my childhood.  smilewinkgrin  
 
http://www.youtube.com/watch?v=dhVTgDKs3l4

Jennifer

PCP DX Lupus and Fibro, Taking plaquenil,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Homeschooling Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/12/2008 5:03 PM (GMT -7)   
Awe . . . thanks Jennifer.

Well . . . that song is a perfect example of how we each ACT our way through life sometimes. Ha haaa!! How appropriate. I have such a hard time asking for help. I will stand on my head to do things myself before I'll ask. Sometimes I think God is giving me lessons on asking others for help!!

Yes . . . its hard to imagine that life will always be so difficult. But after going through the grieving process (of losing your old, health self) its important to enjoy each day just as it is. Its hard sometimes, but it actually gives you more energy.

You'll figure out the "dance" that keeps you at your best. It just takes some trial and error.

Thanks again for the song!! That was really sweet of you!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


oldhippyrebel
Regular Member


Date Joined May 2008
Total Posts : 58
   Posted 10/12/2008 7:56 PM (GMT -7)   
Jennifer
It all depends on if your in a flare or not. When I am, sometimes I can only work for 5 min at a time on something around the house., If I'm doing better then yes I can go all day maybe even 2 days before I'm down.

But it isn't like it use to be going 24/7. but I feel like I maybe starting to come out of a 2 1/2 yr long flare. It has been the worst ever. But I'm getting more done. before I have to go down. I'm 57, I was a single parent. I had just got to where I was living my life for me. It was an exciting time. I don't think I'll ever get that back, but I am hoping and looking at things are getting better. I've never had a flare that has lasted this long or been this bad.

You just have to learn when you have to say no to doing stuff, that was the hardest part for me. I was on so many different non-profit boards, I had worked hard all my life, I was laid off after 27 years when they moved the work out of state. I was working on helping others and I had gone back to school. The lupus and Fibro I could work thur back then because I loved the work so much. I'm only hoping that things are looking up

The hardest part for me has been learning to say no, I don't think I can do that or harder yet having to ask for help to get something done. But then a year ago, I would fall down and I could NOT get up. I couldn't even get up off the sofa without help. I wasn't able to drive and when someone drove me to the Dr. they had to get me a wheelchair to get me into the building. But I'm driving myself again granted I'm not going far at a time, and I use a cane when I'm outside but I think I can safely say things do get better. But I've also started working out in the flowerbeds this summer, something I've never done before but it was so go to be able to go outside, granted I had a chair was was sitting in while I worked. but it was great to see what I was getting done.

So after all that I just want to say things will get better, it may take time but learn to rest when you need to, that is one of the most important things you have to learn. Good Luck. yeah
Lynn


Fibro since 97, Lupus since 99, neuropathy and other nerve damage.
On to many Meds to list, Finally got a date for SSA of July 1 after to many years of fighting for a hearing.

Post Edited (oldhippyrebel) : 10/12/2008 9:04:47 PM (GMT-6)


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 10/12/2008 8:11 PM (GMT -7)   
Hi Jennifer, Rosie and Lynn give you good advice. It took me a few years to come to trems with losing my healthy self, too. Lupus just knocks the "c***" right out of you and it is unforgiving. It was a slow process, but I think I am getting back some of my extra energy. I am certainly not as fatigued on the weekends after working all week. Last year at this time I thought I was going to have to retire early. Who knows what is in the future, though? I just decided to live each day to the fullest and, if that means some days are fully enjoyed in bed, resting, then, oh well.

Keep talking and researching and learning about your disease and learn what your body needs. I am trying to "pretend" I don't have fibromyalgia even though my rhuemy now suspects this, too. I won't get away with that too long, though, because I know I have to take care of myself and not allow anything, any symptom, to go unaddressed by me or by the doctors on my team.

Good luck to you, Jennifer, and my prayers are with you!
Prayers,
Audrey Ann
 
Lupus, RA, and (Maybe) Fibromyalgia and LOTS of Medications!
 


 


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 10/13/2008 8:48 AM (GMT -7)   
Thank you all so very much. It's such a fine line to walk between educating yourself about your disease and obsessing about it. I have an uncle with depression and that's all he ever talks about. I understand now how hard it is not to talk about something that has such a strong hold on your life. I can't pretend anymore that it's anything else and that there is a magic cure out there. I'm a planner and this was something I just didn't see coming. Thanks again for all your support.

Jennifer

PCP DX Lupus and Fibro, Taking plaquenil,  Flexeril,Claritin, Zantac,Ambien,vitamin B-12, multi- vitamin, Lortab.  Homeschooling Mom of 2 boys 1 and 6.  Symptoms: Fatigue, joint pain, heat/sun sensitivity, mouth and nose sores, malar rash, migranes, awful hives, positive ANA, and RF.

 

 


Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 10/14/2008 9:09 AM (GMT -7)   
Hi Jennifer. I've been thinking about this thread. I don't consider myself as a rent-a-bummer, but I still have issues and battle depression. I continue the medication shuffle. I fall about once a month (if I can't get up, I crawl on my hands & knees to grab a sturdy object and pull myself). Outside I must always use my cane or walker. I don't tell my family that I'll be well someday. I tell them that there will be times I'm extremely sick, but I won't die- my docs will take good care of me. I regularly battle for my old life, get slammed and try again (I hate having to start over). I always do too much- haven't figured out the dance yet- but I'm working on it. I used to be a fiercely independent single mom, so God is teaching me to ask for help. Interestingly, I don't pray for remission. I pray for strength to get me thru each day and thank God for the good days. Lupus is unforgiving and gets old really fast, but I now find myself enjoying the things I can do and missing the old life less and less.
(((Hugs Jennifer))) Love, Butterflake
Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea, hypertension, IBS Tx: CellCept, plaquenil, prednisone, lisinopril, actos, lipitor, nexeum, prozac, seroquel, celebrex, actonel
prn: arthritis tylenol, neurontin, promethazine, ambien, flexeril, multi vit, C, flaxseed oil, acupuncture
Donna
 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 10/14/2008 4:41 PM (GMT -7)   
Jennifer, I think you bring up another topic that so many of us can relate to. This is one of the things I hate the most about lupus and I still fight it tooth and nail. I hate that it takes all my energy to get the kids to school and then pick them up and to any activities. Anything else that I have to do like groceries or cleaning or projects at home goes beyond my energy reserves and it does take a few days to recover. Often times I push myself beyond this and I pay dearly for it. I'm going through this right now and am in the middle of a crazy busy time with my kids and my husband is working crazy long hours at work. It's interesting that you bring this up now because this whole situation is really getting to me right now. On the more hopeful side of things, I have had a few chunks of time when I was able to do more than usual and not have to play catch up as often. This spring and summer I had about 5 months of not having to rest everyday and being able to do more than usual, but as usual, I pushed myself too hard for too long. Sometimes I'm still in denial about my limitations.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 10/15/2008 4:44 AM (GMT -7)   
Hear hear Hippi!! Isn't it crazy that we know if we over do it, we will pay, yet we are still in denial?  I sometimes wonder if I'm the only one doing the denial thing. I do think of my old life less and less (running, swimming, lots of outdoor activities), but I try to do too much housework, errands, etc. I think, "I can do this" and convince myself that I will be fine. Doh!!  Love, Butterflake

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea, hypertension, IBS Tx: CellCept, plaquenil, prednisone, lisinopril, actos, lipitor, nexeum, prozac, seroquel, celebrex, actonel
prn: arthritis tylenol, neurontin, promethazine, ambien, flexeril, multi vit, C, flaxseed oil, acupuncture
Donna
 


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 10/15/2008 9:48 AM (GMT -7)   
This thread has been really helpful to me.  It is a "dance" and an exhausting one at that.  The denial thing is so true and so strong.  My husband is amazed (and really annoyed sometimes) that I will "forget" and continue to work or do things that are clearly going to come back to haunt me with pain and a variety of other problems.  It's like the body has a memory of it's own sometimes - or should I say amnesia?   I wish there was an alarm we could install somewhere on our bodies that would go off when we have crossed the line.  Or just before we cross the line!  Sometimes it feels like it's way out there in the distance - and then before I know it, I've run right smack into it - headlong.
 
I'm still mourning the loss of the old me - but it helps to know I'm not alone in that - that others understand and are dealing with the same feelings while working on finding the even keel.  There's not much point in talking about it with folks who really don't understand it - so thanks everyone - for contributing your "two cents" - it feels like substantially MORE$!
 
Lucy
 
 
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/15/2008 10:25 AM (GMT -7)   

I forget sometimes that those who encourage the most, to the rest of us, are still battling the desire to do more than we are capable of doing.  It makes so much sense to stop doing too much just because we are not deathly sick one day out of seven.

Also it was surprising to me that we might have an actual good day even though we are still in a major flare.  I too have those days when it is really hard just to get out of bed, when it seems like I  have physically forgotten how to get out of bed, or up out of a chair, or off the sofa.

I cleaned the kitchen and mopped the floor.  I need to maybe rest the rest of the day.  It was just so dirty.  I have been doing things for my children, and letting my kitchen go unattended.  I need to tell my grandson and my housemate, who live here, that the days I have to do things for my kids, that I cannot do anything else that day.  they will have to wash thier own dishes those days.

My youngest daughter is a single mom raising her three sons without a husband or partner.  I am all she has when emergencies arise.  I have to pick up her kids sometimes.  Just the way it is.  and have to sit in the sun at the middle school.  So that will be all I do that day.

Many thanks to all of you in so many ways.  Knowing this forum is here is all I need sometimes.  I can just read other people's posts, and it reflects what I am experiencing myself.

Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/15/2008 1:12 PM (GMT -7)   
Lucy . . . set a timer . . . really! When you've had a few days where a certain amount of time has been safe, then you can add more time or rest less time in between. I can now go for 45 minutes and rest for 15. Or, I can got for a couple hours and rest for 1/2 to 1 hour. It does build over time . . . but it is still a dance and we often go backwards as well. I just know that I get way more active time when I time it and then rest.


Hester!! Be in charge of your household! With so many in one house, you should NOT be picking up the pieces for everyone all the time. You are NOT doing them a favor . . . you are crippling them. If you assign a chore to the grands and they don't do it . . . DON'T drive them to the next activity. No arguing ... no bargaining . . . just stick to your guns. You don't have to be mean or nasty . . . just explain that order in the house will make things better for everyone. DON't be a doormat. My daughter is raising two kids on her own as well . . . and its really hard sometimes to let them struggle thru some things . . . but that struggle helps them grow.

Hester . . . read this story . . . it has helped me let my kids/grands go thru some growing pains.  The Story of the Boy and the Butterfly

I hope it blesses you.


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 10/15/2008 5:02 PM (GMT -7)   
Rosie, do you know how wonderfully blessed  you are with common sense!?  And how beautifully you share it?  yeah Thanks, yet again - Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; CEBV 2005; UCTD (dx limbo) 2007
meds:  occasional low dose xanax for sleep, artificial tears w/ ointment at night, ibuprophin (none of which manages the problems very well!)
 
We cannot avoid the birds of sadness flying over our heads, but we need not let them make nests in our hair. 
       ~~ Chinese saying as quoted by Helen Nearing


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/15/2008 5:19 PM (GMT -7)   
blush

Glad my blunders through life can help others.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 10/16/2008 7:12 AM (GMT -7)   
Hester!! Be in charge of your household! With so many in one house, you should NOT be picking up the pieces for everyone all the time.
 
Hey Rosie,
 
I apologize for not being clear enough in my post.  My youngest daughter who is a single mom, lives in her own house, not mine.  I don't have to pick the kids up everyday, but some days I do.  the oldest of my daughter's boys also works, and works overtime when he can.  So those days, which isn't many, when he works overtime, I pick up the kids from school.
 
Living with me is my oldest grandson, who is the oldest child of my son.  He also works and pays his share of household expenses.  I basically rented a bedroom to this man, my housemate,  who was looking for a place to live.  He pays half the utilities and I pay half.  the amount he pays each month I use for groceries.
 
Now it is true that neither of these two boys wish to do anything in the house or outside of it, and this is ok with me.  My grandson keeps the livingroom clean and vacuums anytime I ask him to do.  It is also true that I over protect in many ways.
 
My son who is also a single dad, and still has one dependent child.  I do things for him when he needs it.  In return he keeps my car in running condition.  Last year it took him two full days of working to change a transmission out of my car.  A car he traded some stuff  for and gave it to me for Christmas a few years ago.
 
but the butterfly does have wisdom in it, and I have read this before.  But I think we all need to be reminded sometimes, when we are doing too much for our kids.  Please keep reminding me.
 
It is also true that the kids do not talk much about Lupus.  My youngest daughter does have an office mate, who was recently diagnosed with Lupus.  Tammy now talks to me about these things of Lupus.   They do seem to be in denial though and I can understand this.  Don't talk about it and maybe it will go away kind of thinking.
 
And it is true that sometimes I do not let them beat thier wings enough.  But I am learning. 
 
Thank you for your response.
Hester
Lupus diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

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