First let me stay I work 45-50 hours on my feet in healthcare. We do not get a lunch break, just stuff some food down when we can. I am almost in tears by end of day with fatigue,chest pain and joint pain. In addition I had a severe ankle fracture 3 years ago that has hurt ever since and swells even with compression socks.
I’ve already gone on a family vacation for 4 days. I did this for the family. When I am off I need to rest. I crash on weekends and do nothing. Traveling wears me out as does the activity the family wants to do. I did it because all my grown children were able to join us as well as my teen. We had a wonderful time but it wore me out and then had to go to work next day. Now two weeks later my husband wants to go on a trip for our anniversary that includes a flight. He is normally very understanding but is having a hard time understanding why I am not ready to go on another trip. (I had just gotten out of hospital when it was our anniversary last year. He actually took me to a follow up appt on our anniversary last year).
Any ideas on how to make him understand or other advice?
We just had our 25th wedding anniversary, my husband was pretty mad when I opted to just go to dinner and movie, he wanted us to take a cruise, or have our kids throw us a party in chicago, 2 problems off the bat, I have lupus and being out in the sun is horrible for me, 2 chicago is 1300 miles away and I'm not allowed to fly anymore because of lung and circulatory problems, I got a lot of grief but finally just said, ok we can do this but understand I will most likely be down for weeks or months again, I appreciated the thought but he understood it was better to keep it simple, we've learned never plan anything you can't cancel, as it turned out he had to have emergency surgery for kidney stones and renal failure a week before our anniversary so thank goodness we opted to stay home. I don't know if this will help you, sometimes you just gotta put your foot down and stick up for yourself and your own health.
Thanks. Our last year anniversary was a milestone too. Thirty years. But since I was so sick and had just gotten out of hospital we didn’t even go out to eat. So he wants to make up for this year.
You are lucky people that their is someone whom cares enough to celebrate life’s millstone with you. People unaffected by lupus don’t understand, ever. I would just know and understand that their efforts are out of love. Try to remain in the moment of love and kindness.
Me I would go- you only live once and you should grasp whatever happiness you can while you can. What is the saying- Life is measured by the moments that take your breath away With lupus you are ALWAYS tired- whether you go on the trip or not so why not be tired for a reason this time and make your husband happy at the same time
Hi I’m the same as you guys but honestly I would go with him as well its our 10th anniversary and going away with family in October I’m in a lot of pain etc etc but just want to spend as much time as I can with my lovely husband and wonderful family go have some fun enjoy yourself while you can xx
I understand that completely. My sister and I both have lupus and it effects us so differently. Sometimes just cleaning my house makes me so tired I cant function properly. I see both sides to this…1. I wouldnt want to go because of the fatigue and if im tired I wont want to enjoy any of it but 2. I would want to make my husband happy since he planned the trip and wanting to spend time with me. My ex husband could barely remember my birthday so a planned trip would be exciting to me.
Fatigue is a debilitating symptomof lupus and a lot of other conditions for sure…I’ve suffer with it too and have missed out on a lot of time with my daughter, family and friends. I’ve gotten so sick and so much worse in such a short period of time I’ve began putting lots of effort into discovering ways to regain a life outside of laying in bed 
Im a huge proponent of B complex , its and amazing natural energy boost! making sure I have proper pain management is absolutely crucial to getting proper sleep and being able to get outta bed in the morning and do anything… I feel my mind set and overall emotional well being is the most important element to continuing to have a “normal” life despite my diseases, disabilities, pain and worsening prognosis. . When I know now that some special , evening event is coming up I try to rest as much as possible in the days before and just be excited there is something to look forward to:) im only 34 years old so I’ve definitely given up what it means to be my age as well as an extremely successful career that I worked very hard for many years to achieve … unfortunately life has no guarantees and sometimes bad things happen to really good people but I always try to remember even though my situation is very serious it could always be worse … at this point in my life im all about living it with my loved ones and trying to create some joy amidst all of my suffering , one day at a time.
My husband understands my limitations and usually will change plans. Tell him how you feel and make some suggestions of things you both can enjoy rather than pushing yourself and ending up in the hospital because of something he wants. There have been times where I tell him to go without me and maybe he will and maybe he won’t. An anniversary is a little different. If you live by a beach you may suggest going to a hotel right off the boardwalk or sand and make it a weekend of relaxation, dinner, a little walk for a sunset and breakfast in bed. There are things we can do sometimes that can make both parties happy with an alternative option you both will enjoy
I'm struggling with a similar problem right now. My husband and I are both from San Diego, and all of our family is down there. We have the only grandchildren, and usually make several trips over the summer to see everyone. My husband and kids are about to make their third trip down south this summer, and once again, I am not going with them. I just can't handle travelling right now.
I would be a total party-pooper - can't hang out in the sun (i.e. no beach trip for me), can't walk for hours (i.e. no Zoo, no Legoland), etc.
This illness has also affected my husband and children in many ways. As stressful as it is for me, it is stressful in other ways for them. They need a break from me. So they're going on a trip and I'm not.
Thanks for sharing everyone. If this had been even two years ago I would do it. That was when I had my “normal” lupus. I had fatigue and joint pain that was bad but I could deal with it. But last year I started having more serious issues involving heart and lungs. I have chronic pericarditis and lung issues. I do work those hours but my family depends on my income. I am the larger income. I push myself through every hour and feel like crying by the end of the day. I collapse when I get home and on the weekends from fatigue and fighting through the pain. I would love to cut back but can’t. Of course there are those times like last year when my body says no more and ended up 10 days in the hospital. I know the schedule is bad for someone with SLE but it is allowing me to provide a living (and 3 college educations) for my family. Every Saturday I am thinking there is no way I can keep doing it because my chest is at its worst, my joints are burning and I sleep most of the day. But I get up again on Monday and start again. But sometimes I get tired of “being strong”. So the thought of a “vacation” doesn’t excite me. I wish things were different. Thanks for “listening”.