What is it Like to Love a Lupie?

I'd just like to take a moment and look outside myself. I've been rambling on about my adventures with Lupus for sometime now and I'd like to touch on another perspective. Because, in truth, it's not all about me. I have the disease, to be sure, but Lupus has it's impact on those who love me, who count on me, and who have to do without me or care for me when I'm ill. Among those, it's mainly, it's my Dear Husband who has the lion's share of the impact. It has been an huge adjustment for him and I have to say right now that I am more thankful that I can say for his support and understanding along the way.  Don't worry, he knows this, I tell him daily. 

I think the hardest thing for my Dear Husband to adjust to was the worry that he may lose me. At any time. That the cold, or that rash, or the swollen bump on my neck could be signs of my impending demise. In truth, that worries me too sometimes. But for him, he feels helpless and scared when I'm not OK. And I feel guilty for making him feel this way. 

There is a regular level of stress that comes with having a partner with Lupus that I think most couples don't have to deal with to a large extent. Most spouses may get texts from their partners asking to "pick up milk" "I'll be late there's traffic" or some such.  My Dear Husband gets texts that say "test results say it's not lymphoma" or "I have a referral to the ENT for Wed." or "I have to change my meds again" or "the bill for the MRI came in, don't make any major purchases". Yeah, we do that a lot.

The other part of this is the work load and responsibility shift that had to take place when I got ill. We live on three acres in the woods, with chickens, four cats, a big garden in the summer, lots of mowing in the spring, half a dozen fruit trees, and a small vineyard. All of this has chores involved with the care and upkeep. I used to be an equal partner in these things, or at least I would try, he's not easy to keep up with. These days, it's much more difficult for me to do physical work. The muscle weakness keeps me from lifting or carrying much. The sun sensitivity limits my time out side to early mornings and evenings. Extreme temperatures limit my time outside as well. Oh, and I get tired, really tired very fast. So I'm not doing my full share. My Dear Husband, however, is trying to do all those things I can't keep up with regularly, as we'll as his normal share. It's just too much.

Speaking of work, I was a good contributing partner in the money aspect before my diagnosis. However, I had to give up a lucrative position to take a less stressful, closer to home, part time position, to get my health in order. Before this change, I was making twice as much per hour as I am now and twice as many hours. My paychecks are a bit anemic these days and until recently I didn't even have benefits. With all of this there is also the economic worries that come with more medial costs. Medications, tests, regular visits to the specialists can put a strain on a pocket book. So financially my Dear Husband took on most of the financial responsibility in our partnership as well. I still feel cheated about this loss myself but he just says we'll figure it out together. 

The partner of someone with a chronic illness discovers the lack of spontaneity that develops when you have to plan for rest before and after an event or an activity for us to keep healthy. You live with lots of little disappointments, when what you want to do is put on hold until we feel better. When you want to be romantic but your partner is taking meds for pain and is so exhausted they miss your hints. I sometimes wonder if I'm worth hanging around for. He says I am and I'm so thankful. 

Some of this sounds sort of dire, and sometimes it feels that way too. However, I've been getting a handle on my health. I've got good doctors and the medications are working for me. I've made some changes in how I do things that are helping. I have tried to do what I can to make this easier for my Dear Husband too. I try to understand that he has to cope with this too. I keep him up dated on my heath status, medical appointments, tests, etc. so there are no nasty surprises to cause undo worry. I try to plan ahead to do events that mean a lot to him, by resting and bringing all my "gear" to do the best I can in environments that challenge my health. I try to help more on the good days so that all of the responsibilities are not falling on him all the time. When I'm feeling well, I schedule date nights to be sure he knows I still think he's the best husband ever. On good days when I have the energy, I try to cook the big meals that I know he loves. I do what I can when I can.

The situation is not perfect, but we are doing well and we care a lot for each other. I don't know what I would do without my Dear Husband and all he does for us. His emotional support and sense of humor are vital to my well being. He keeps me healthy in so many ways. I am so thankful.