How do y'all handle outings/vacations with family?

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Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 451
   Posted 12/30/2016 10:44 PM (GMT -6)   
We brought my son, his wife and our 1 year old grandson to the Gaylord Texan Resort for what was suppose to be time to rejuvenate for a few days after Christmas, oh my it has been totally exhausting and not so relaxing. We have had a really great time at the ICE exhibits here and at the Dallas World Aquarium but I told my husband I'd really like to cut our trip short a day and take my sore aching body out of the hustle and bustle of this huge city, go back to my small West Texas town with less traffic and fewer people! My body has not been this exhausted in quite some time, I am truly hoping that this does not send me into a flare, the nerve pain has gotten so bad that my entire right side of my body is numb; literally from the top of my head to my shin on my right leg.

This is our first grandchild and I want so badly to be able to do activities and vacations with him and future grands. This is our first attempt at an out of town excursion. My son also has lupus, so he's totally understanding and always asks "mom are you okay? Is there anything you need?" He also makes sure we get plenty of rest,etc. that said, I don't like to be the one to hold the family back so I tend to push myself to hard and then realize at the end of the day when we slow down "oh, maybe I don't feel as good as I thought I did!"

Anyway, thank y'all for letting me share this here, I don't want to vent this to my family.


Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 12/31/2016 1:53 AM (GMT -6)   
I hate it when my body can't handle a trip.
The stress of a trip always adds to my pains.
I always try to have some quiet down time. If my body says stop I try to listen and not push through.

I hope you feel better.
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 12/31/2016 8:17 AM (GMT -6)   
Naps. Plenty of naps. Long restful nights. And pacing - very important to pace yourself. And make wise choices.

For instance, use the airport-supplied wheelchair when flying, save your energy for the baby! At exhibits and aquariums, do the same. Energy used walking could better be applied elsewhere. DO NOT be too bashful to do this!!

about 3 years after my diagnosis, when I had no idea if I'd ever get better and every expectation I'd get worse, I went on my dream sailing vacation to the Galapagos. There were 3 site-seeing trips a day, and the middle one I skipped in favor of a nap - even if it was just a restful quiet time with a book. People stayed up late playing cards, I chose an earlier bedtime.

Even now, with a whole-house carpet replacement project -- before Lupus I'd easily get everything back together in a few days. Now I'm purposely taking my time (first time to deep clean some areas in years), discarding, cleaning, and repairing as I go. As long as I can get to my bed, bathroom, and kitchen it's going to be okay. I am fully prepared to take till April to do this. And hopefully because I've mentally prepared, the intermediate mess won't make me depressed like it usually would.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 451
   Posted 12/31/2016 9:23 AM (GMT -6)   
Thanks ladies, your input and support really help. These are things I know in the back of my mind after having this horrid disease and the many ups and downs that come with it for all these years, yet being a grandmother is new and for some reason I have the need to want give Simon all I can knowing full well my body can't. It breaks my heart that his daddy and I both have lupus and he will may always be told we can't do something because of our disease. My children grew up knowing that hurt, my daughter was 8 and my son 6 when I was diagnosed, my son has handled it well, done well in life achieved greatly in education etc in spit of his disease and mine. But my daughter has had anxiety since age 10, doctors say it's because she's feared losing me and she started using prescription drugs to cope as a young adult. Now she's 29 and in rehab as we speak for a second time. I just worry so badly, I go too far sometimes not to complain that I'm hurting or need to rest I know.

I know my son will do a wonderful job with with his children and they will know how to find a healthy balance with our disease. I've just got to find a happy medium somewhere and stop carrying the guilt of my daughter.
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs
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