Retreat and Regroup

There are times when I just can’t do everything. My wife is still having some flu symptoms and is having a hard time. I had to take a day off of work at a very bad time for me. This is really the busiest time of the year for me, and I don’t mean this time in general, I mean last week and this coming week specifically is the most stressful and busiest time of the year for me.

We will get through it and everything will be fine; however, I have put some posts on hold until I can have some time to sit down and write again.

Stomach Flu Problems

Today was not a good day. My wife starting throwing up early this morning and was soon also having really bad diarrhea. This kind of thing is awful for anyone, but for a lupus patient, it’s even worse. The major problem was that she couldn’t take any of her medication. If you are used to taking high doses of pain medication throughout the day and you don’t get to, that’s not good. Really not good.

I did my best to keep her from getting dehydrated, using ice chips before moving on to water. She seems to be feeling a little better, but now she has a whole day where she’s missed most of her medication.

Denial or Perspective?

I didn’t post much the last few weeks and I was thinking about why that happened and how I felt about it. A chronic illness is one that is always present in some form or another, by definition. It is this chronicity that can be especially problematic at times when you just don’t want to be sick or involved with sickness. It is occasionally nice to pretend that life is just normal, whatever that is.

I know that this is the main reason my wife doesn’t actively participate in many online lupus groups, or offline lupus groups for that matter. Most of the time she would just rather not be reminded that she has lupus. Yes, she has to take a huge amount of medication each day and she certainly feels the effects of her illness, but for the most part, she would rather not talk about the illness itself. She will talk about the pain or other symptoms, but not about actually having lupus.

I have a type of mild chronic depression, called dysthymia, that I have dealt with since I was very young. I am aware that I should take some kind of medication for this, but I choose not to do so because I don’t like the side effects. There are some things that help a great deal, like regular exercise and adequate sleep, but I don’t always stay on top of those activities either. Usually, I just don’t want to think about it. I should be involved in some kind of discussion or support group with other folks dealing with this type of depression, but I am not. I would rather spend my time involved in activities that get my mind off of my depression; however, by doing this, I deny myself the opportunity to actively work toward dealing with my illness.

Is this just a form of denial or is it a necessary strategy for gaining perspective? Can we become so involved in a situation that we lose that ability to think outside of our own sphere of influence or concern?

I realize that we are lucky to be in a place where this is even possible. Five months ago, when Jenny was in the hospital, it wasn’t possible to ignore the reality of her illness, or mine for that matter. Now that things are going better, it becomes possible to make believe that everything is great and that we can get through a day without illness or depression. However, the reality of that just doesn’t hold up, and often makes the impact of a particular crisis even more difficult to accept.

Obviously, there needs to be some sort of balance between a pro-active involvement in the control of your illness and a healthy detachment from the situation so that a sense of perspective can be maintained. How that balance is achieved is another matter.

What to say when your loved one has lupus

I was reading an article today from Fibrofighters.com, which is a new site for me. It came up in my weekly search report on chronic illness. There’s a great article today about supporting a loved one with a chronic illness, but I was interested in particular in a section about what to say to a friend.

There’s no perfect thing to say when your loved one is having a bad day, and nothing is wrong with admitting, “I don’t know what to say.” You don’t have to say anything, as long as you listen to her and let her know it’s OK if she wants to vent.

What if the sick person isn’t taking medicine on time, is eating poorly or is otherwise not taking care of himself? That’s a tough one, says Jay, and what you do depends on your relationship. Talk to his caregiver or a close family member first. You could gently broach the topic with your friend, but be aware that he may become angry.

What if you are the caregiver or close family member?

I have struggled with this for years. It’s very hard to know what say. My wife is in pain all the time to some degree, but when she talks about that pain, she may need me to react in a number of ways. I can:

  • just listen and let her vent
  • be sympathetic and talk about how lupus sucks
  • be optimistic and encouraging
  • give her a verbal kick in the pants if she needs to be more proactive

I can tell you, and so can my wife, that I don’t always make the best choice. I do try my best, but it’s hard to see someone you love be in pain.