lifestyle with lupus

Taking 7 meds for lupus, pericarditis, rheumatoid arthitis, digestive problems, etc, and slowing down from active lifestyle has put me in a depressed place, my husband treats me like a patient, and I can't walk too well, he doesn't seem to think I should drive because of meds,just lost the last of my father's family, mother died before I was one, so my support system and best friends aren't around. need a life outside my home, but I really think I am developing acraphobia from being in the house. My husband and I seem to have reversed roles since he retired, so I am losing my independence, and the lupus seems to be taking my life away, I fight it every day and make the best of it,but it has taken the life out of me, happiness and energy, any suggestions, I have gone to counseling for a while, but nothing is working. I don't feel of any use anymore.

Posted Jan 30 2010, 03:30 AM by nanaboo

Comments

Contact

Kanah wrote re: lifestyle with lupus

on 01-31-2010 5:38 PM

Hang in there. I too am taking many medications for lupus, rheumatoid arthritis and fibromyalgia. I have been going through a debilitating flare since 12/23/09 (chronic pain, fatigue, etc.).

I had a 27 year career in commercial real estate until 07/09/09. I have been pretty ill during the months since. I loved my career. I had the respect of my peers and the love and dedication of my employees. I am very slowly accepting the fact that I will not be able to work again. I miss my coworkers so very much. We stayed in contact at first but as time has passed the communications have lessened.

Now, I am at home in bed surviving day-to-day... waiting for these diseases to recede so I can do more for myself. I totally understand your feelings of unhappiness and despair. My rheumatologist says it is perfectly normal for those with long term illnesses. I have had many periods of remission where the disease recedes allowing me to enjoy life, and I make the most of that time. Just focus on the good times to come. I made a list today of things I want to do when the disease backs off. It keeps me focused and positive.

How long have you had lupus?

Kanah

Contact

nanaboo wrote re: lifestyle with lupus

on 01-31-2010 7:28 PM

Hi Kanah,

You are right, I can relate to you, except I am in kind of a

remission, still can't walk for long, but get out, if I can get

up, I don't sleep well, so my schedule doesn't fit in with

anyone I know, I start the day late, by that time my husband is doing errands or picking up and driving ou grandaughter to

and from school programs. That is part of my problem.

I don't care how normal the experts say depression, etc. is

it still interferes with what life I have now. We don't need this

on top of everything,

I try to help out someone, usually some small way, like sending

a greeting, or listening or reading about someone else's

problems, seems to help some, and trying to keep my mind

active (suggested) reading crosswords, crafts, et, or something

that will help .

I have had lupus for about 13 yra, not officially until the fateful september ll (that very day) I started being diagnosed with

lupus.

I thought I was a hypocondriac, and thought

my dr felt the same, but after being hospitalized with a pulmonary embolism (clot through my lungs) some on the

symptons showed up during my stay, and a couple of

Drs checked out the fact that I had been having test results

"borderline ana" retested, and with a myriad of other symptons

now being seen first hand, the diagnosis finally came, I was

re;ieved and scared at the same time, and since then my

life has done a 360 turn. will write later .

Sorry you are going through this desase, but maybe relating

to each other, and coming up with solution re: all the feelings

that are dominant we can help and others, and all reach out.

I have to stop having the "poor me's" things could be so much

worse, and they are all around us.

Thanks for your time,

nanaboo

Contact

Kanah wrote re: lifestyle with lupus

on 02-04-2010 9:53 AM

I am so glad you wrote back. I enjoyed reading your mail.

I believe we are justified in having "pity parties" from time to time. I have quit berating myself when I do. However, I have found that being upset and crying does seem to make my illness a lot worse, so I try not to do it too often. LOL

Yes, depression can interfere with our lives. I was hospitalized for it for two weeks once. If you want or need to talk about being depresseed, just let me know. I am here and willing to discuss my experience if it can be helpful to you.

I know what you mean about feeling like a hypochondriac! The list of symptoms and pains with this crazy disease seem so disjointed! Fortunately, my rheumatologist has yet to look at me like I am crazy, but I certainly feel that way when reporting them to him.

Have to run for now. I honestly enjoyed receiving your mail. Please write again when you are able.

Kanah

Contact

nanaboo wrote re: lifestyle with lupus

on 02-04-2010 5:51 PM

THANKS FOR WRITING HANNAH, I AM TRYING A NEW APPROACH TO THIS CRAZY DESEASE, I JOINED A GROUP AT THE HOSP. SUGGESTED BY MY DR., I AM A GOOD AT STARTING TO REACH A

GOAL, BUT DON'T ALWAYS FINISH. I JUST NEED TO SHOW UP, AND LEAVE THE HOUSE, TO MEET NEW PEOPLE, AND DO NEW THINGS. WITH THE HELP OF GOD, I WILL CARRY THROUGH, AND NOT PLAN MY LIFE WAITING TO SEE WHAT HAPPENS TOMORROW, BEFORE I MAKE A COMMITMENT, I AM TRYING. IT IS STARTING MONDAY FOR EASY EXCERCISES AND WEDNESDAY FOR A MOVIE

AND LUNCH, I AM SLOW (IN PAIN, OR DIDN'T SLEEP) IN THE MORNING,. THIS DESEASE IS RUNNING MY LIFE AND MAKING ME FEEL OLD AND USELESS, I NEED TO START A NEW LIFE, AND STOP WORRYING ABOUT MY FAMILY SO MUCH AND GETTING DEPRESSED, HOPE THIS HELPS ME AND ANYONE ELSE TO GET MOTIVATED , AND IF I CAN MAKE MY LIFE BETTER MAYBE I CAN FEEL LIKE A NEW PERSON (NOT THE YOUNG ONE I WANT TO BE) BUT THE PERSON I WANT TO BE FOR MY FAMILY AND MYSELF. HOPE I CARRY THROUGH. GOD HELP ME, AND GIVE ME STRENGTH.

GOOD TO HEAR FROM YOU, HOPE YOU ARE FEELING BETTER TODAY, AND PRAY THE DEPRESSION DOESN;T TAKE OVER ALL OF

US, WE ARE ALL IN THE SAME BOAT, EVEN IF DIFFERENT SYMPTONS, AND NEED HELP FROM EACH OTHER. THANKS. NANABOO

lifestyle with lupus

Comments

Add a Comment