Saturday, 18 February 2012

Lupus and Relationships

While we were still together, I'd complained to Mr Wonderful that I didn't want our whole relationship to be about lupus - and he replied that whether we liked it or not, lupus was a part of our relationship.

I'd love to hear from other people with lupus who have successful marriages/relationships, who can tell me how to make things work.

Here are some of the things that I've found can complicate a relationship:

  • Medication. I can't do anything on impulse. I always have to plan, make sure I have the pills I need. If I'm out for lunch - I have to go home before dinner time if I didn't think to take my dinner time pills "just in case". I also have limitations on when I can eat - one of my pills has to be half an hour before meals.
  • Fatigue. This gets better and worse depending on whether my lupus is flaring. But going away on a holiday is complicated, if planning every day's activities has to revolve around my afternoon nap. Even when I'm well, I have to allow for nap time in my day, just in case that proves to be the day I stop feeling well.
  • Food. I'm gluten and lactose intolerant. I know a lot of lupies are. That limits where I can eat. 
  • Pain. I'm no fun whatsoever when I'm in pain. Like fatigue, pain limits what I can do.  Planning ahead can be difficult, when there is no way of knowing ahead of time what my pain level will be on any given day.
  • Brain fog.  Try having an in-depth conversation with someone who's barely on the planet. It just doesn't work. It takes a lot of patience to put up with someone who is usually quite intelligent not even being able to work out what day of the week it is.
  • Depression/anxiety. Emotional issues just come with being sick. It's hard to be sick and keep up a positive attitude. Sometimes it just all gets too much. 
  • Time. I spend a lot of time doing things just to maintain my health: doctor's visits, physiotherapy, etc. My time for normal life is limited. 
  • Money. Not being able to work full time, being on a part-pension, means I don't have a lot of spare money. That shouldn't make a difference to "love" but it does impact on what I am able to do.
Do I have an answer to the question of how to make a relationship with lupus work? Not really - but I suspect it takes a lot of both commitment and flexibility. I know a lot of reasons I probably wouldn't recommend anyone wanting to be in a relationship with me. 

If you can tell me how to make a relationship work - please leave a comment with your ideas. Maybe one day I'll need to know.

2 comments:

  1. Hello. Am new to your blog and enjoy reading your wonderful writing. I have SLE as well and i must say its not an easy ride, thank you for focusing on relationships because while i seem to have challenges with many other aspects of living with SLE, relationships are definitely my achilles heel. My partner and I struggle to communicate, especially about lupus. He STILL has trouble believing the extent of disability that lupus can bring. He believes i exaggerate so i now no longer mention the word lupus. Last year we separated because of it and although we're together once again, we cant seem to ake much progress on the matter. I have been following a blog "chronic marriage" that seems to help..

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  2. It depends on the person. My previous partner was very understanding, but lupus did get in the way. His job put him overseas and I couldn't go because I was newly diagnosed and flaring really bad. We parted amicably. My partner now is understanding. I think it just depends on the person. I don't make any apologies for my condition...it's just like anything else about me; take it or leave it. I just had faith that I would find someone who accepted all of me. Short, chunky, glasses, lupus, attitude..the whole package. When I was single I focused on making myself stronger and doing things that I enjoy. What attracted my current partner is my zest for life. Love you first and you offer yourself as a whole person.

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