Tag Archives: coping

Gaining Locomotion

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I’m feeling a lot better, so I’m going to try and get back on track with this website. My goal is to post every Thursday and then gradually reconfigure the site to include useful news and additional content. I started this site so that I could make some kind of difference, but I think I lost my steam when I realized how many sites there are out there that have really useful information about lupus. I felt that what I could write or report could be found just as easily somewhere else, but I now wonder if that’s true.

This site isn’t just about lupus. It’s about how lupus affects not only the person with lupus, but also all the people that care about them. For as much as I would like it to be different, my wife’s lupus impacts my family more than any other factor in our lives. It is the single most discussed topic. It has an effect on what we do each and every day. I’ve gotten so used to it, that I don’t think about it anymore.

I mean it. I don’t think I think about Jenny’s lupus like I did a few years ago. It’s like living in a house next to a train track. At first, the noise keeps you awake at night and drives you crazy, but after a while, you just sleep right through the noise. Continue reading →

How to say “Take it easy”

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One of the things that, as a lupus spouse, I find myself having to do almost daily is telling my wife to take it easy. It appears to me that once she gets going in the morning, which is a very difficult time for her, she tries to do as much as she can before she falls apart and runs out of energy.

It’s like she’s trying to beat her illness in a sprint. The real problem with this is that she never wins this race, because the race never ends. Her illness never stops. Lupus doesn’t suddenly give up and say, “Okay, you win.”

What happens more often than not is that she will continue until she ends up getting so sick that she has to spend time in bed (if we’re lucky) and the hospital (if we’re not).

I think she needs to spread things out a bit more so that she’s not so worn down. She’s pretty sick right now, and I still have to argue with her to rest.

Does anyone else have this experience?

Invisible Illnesses

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I’ve installed a new poll widget on the sidebar, because I thought it would be nice way for people to chime in on subjects without having to make a comment. I really like getting comments, but I know that I don’t always feel like leaving them. I’m pretty good about participating in a simple poll, as long as I don’t have to fill anything out.

For the first poll, I wanted to get some feedback on a subject that comes up often in Lupus discussion groups, and is something I’ve dealt with recently. Lupus and the pain-in-the-butt suite of illnesses, syndromes, and phenomenons that usually go along with lupus are not always easily seen. Most of the problems that my wife has are fairly invisible. This latest problem with her hands was certainly an exception, but usually, other than skin reactions related to her photo-sensitivity, Jenny doesn’t usually look sick.

The only problem with not looking sick is that many people who are not familiar with lupus or other potentially invisible illnesses will often have trouble taking the illness seriously.

I’m just curious how many of you out there with lupus, or whose loved one has lupus, have symptoms related to your lupus that are easily visible and how many have a somewhat invisible illness.

You are still free to make comments as well. I do appreciate them. Also, if you do happen to see an advertisement that interests you, please click it and check it out. It doesn’t cost you anything to do so, and the few pennies I receive do add up and help a lot when my web hosting bills come due.

Staying Well When Everyone’s Sick

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Everyone is sick here. This happens fairly often. The kids are exposed to something at school and they get sick and then Jenny gets sick, or Jenny picks up something and then gives it to the kids.

I usually manage to avoid it or I get it to a lesser degree. I’ve written about what we do to keep each other from Catching a Cold. Right now, Jenny is on antibiotics and I imagine the kids will be on them soon. I seem to be doing okay.

I usually just try and drink more water and wash my hands a lot. I also take a multi-vitamin, which I don’t do on a regular basis. I have no idea if that actually helps, but I figure it can’t hurt.