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.