Still Grieving the loss of my old life.

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sickinterval
Regular Member


Date Joined Sep 2011
Total Posts : 33
   Posted Yesterday 4:23 PM (GMT -6)   
I am trying to keep a positive outlook but it is difficult. I have a great husband and two teenage children that are supportive. I also have a great set of work friends that have made my daily work life easier. I want to have an attitude of gratitude but when I feel like crap on and off through out the day, week after week, going on 6 months now I am having a hard time. I could use any suggestions as I am trying to live the life I now have instead of the life I thought I would have.

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2608
   Posted Yesterday 5:20 PM (GMT -6)   
Please don't give up. I understand how you feel because I felt exactly the same way. For years. I came to realize that I am not lupus. Although I wasn't able to do the things I wanted, and felt that life was passing me by, I sought out emotional help from a good counselor, did my best to stay in a good mood and not burden my family any more than I had to, and I took very good care of myself. I believe that my lupus is now in remission. It can happen to you too.

I believe that those of us who have supportive families are so fortunate. I received so much moral support from this forum because the folks here really understand, and I felt welcome to complain and vent as much as I wanted.

Sending a big hug your way.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin 1200mg, synthroid, spironolactone, actonel, niaspan, simcor, lunesta, cymbalta 90mg, norco 10, vitamin D, Calcium, Multi Vit. Fish Oil, low strength aspirin

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted Yesterday 5:55 PM (GMT -6)   
I'm in the same state you're in. I miss my old life, too.
Lupus is definitely a kink in the road.
Joy

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted Yesterday 8:06 PM (GMT -6)   
Yeah, it takes a while to learn how to enjoy a new life...but it can get better. I was quite sick for about 8 years, but just kept doing the things they told me and "Letting go and letting God". Not only did I become grateful for all the things I could do, somehow my lupus decided to become "quiet". (My Dr says 'remission' isn't an applicable term for auto-immune diseases.)

Hang in there
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

sickinterval
Regular Member


Date Joined Sep 2011
Total Posts : 33
   Posted Today 8:17 PM (GMT -6)   
Thanks, I needed that encouragement. Sometimes I feel strong emotionally and sometimes I feel weak. The worse part is that when I feel weak I get weepy and it is hard to hide it. I want to try and fake it until I can make at work. I have the craziest sick feelings that come and then just go. I feel like I am going to pass out but never do, or throw up but never do. When that is happening it is hard to focus on what is happening in the room. I have lost 25 lbs in 3 months and get this pale look so people can tell something is not right and as soon as they act concerned the weepiness starts. I don't want to be seen as a that sick person. Lupus is so humbling!

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted Today 10:24 PM (GMT -6)   
And some of our meds upset our emotions!!! It sucks, esp. if you are like me and have never had emotions run your life before...hard to learn what to do, but you'll get it!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 9/24/2011 9:14 PM (GMT -6)   
Hi sickinterval. I'm so sorry you're burdened with such a difficult transition. I worked for 5 years feeling like dog poop. A couple of things I've learned is take a bath with epsom salts as soon as you get home from work. That way you will have one less task to do before going to work. Also set out your work clothes. If you can't fix dinner, so be it; they're old enough to be helping you. My routine for five years was awaken for work, eat some breakfast, get dressed and go to work. I had an inflatable mattress and blanket I put under my desk at lunch time and would take naps. Yeah, people who don't know you think you're crazy, but that's just too bad. They don't have your pain and fatigue. Once home I would take the bath and be in bed by 6pm. The whole purpose of all this is to conserve energy. As you become acclimated to your routine, your days get a tiny bit better. You may need to spend your weekends in bed, so write a grocery list and send your family to do the chore. I was an extremely independent woman until Lupus, but I've learned to let my family and friends help me. BTW I quit work in Aug 2008 after exhausting all possible work accommidations. That step looks great on your social security disability. Eventually you'll find that the things you enjoy will change. If being in bed watching TV helps you by all means watch it. I never used to watch TV, but now I do.  I like working cross word puzzles and a few crafts. I know how hard it is right now. Please allow yourself to grieve. It's one of the best things to help your psyche. Love, Butterflake
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