When you run into someone at the store or wherever what seems to be the first thing out of their mouth after saying your name? For me, it’s, “How’s Lynn?” and then it’s, “And how are you doing?” It’s never easy to know how to answer that question.
I believe that most people don’t want to know details; they’re just asking to be polite and to communicate that your well-being is something they care about. Therefore, my typical response is, “We’re doing fine.” Then some know a little more about our challenges and want more information so that the group gets “Doing well. No new issues right now.” That’s all they want to know—is he worse or about the same? They know he’s probably not “better” because he has a chronic long-term health condition that has disabled him, so in their minds, “How good can it be, anyway?”
Some are interested in details—family members, close friends, and confidantes—those groups get more information, but it’s still filtered. People in those groups want to know if there are any new problems and what is being done about it. They want him to get better and make progress. They don’t like for him to feel bad or have to go through difficult times, and they seem so disappointed if I tell them, again, that he feels “bad” or is exhausted and just has no energy. So, I just shared the surface things and changed the subject.
The fact is, Lynn is disabled. He feels lousy on some days and less lousy on others due to currently being detoxed for heavy metals. He’s tired every day, but some days, he’s just tired, and other days, he’s exhausted to the point that he can’t move his powerchair to get out of the way of a car speeding toward him. We attribute those good and bad days to various factors, but in reality, “who knows?” It is what it is.
So then, how do I respond when someone asks me, “How are you, really?” I say I’m doing okay; it’s hard, but I manage. They don’t want to know. If they did, it would go like this:
How I am is tied up in how Lynn is. If he’s having a bad day, I pick up all the things he cannot do and add them to what I already do for him, plus my own duties. I move rapidly throughout the day doing my paid job in between doing my caregiver job (that’s seven days a week, not five since I have to make up lost time from caregiving during the week) and fitting in the laundry, cooking, cleaning, paying bills, etc. where I can fit them in. I never get enough sleep, so I’m always exhausted (I average 5-6 hours per night with at least one time up lasting 15 minutes to cath him and take care of whatever other comfort needs he has). I snack all the time to have the energy to stay awake so in the last year, I’ve put back 15 pounds at least. I drink coffee to keep myself functional and take “Stay Awake” caffeine pills to drive because I am so sleepy.
I get no exercise from my desk to his room to care for him and back to my desk to work or the kitchen to prepare something or clean up. Almost every muscle I have hurts. I have heart palpitations from exhaustion. I have arthritis in most of my joints and my hands so bad that I can’t open anything without a struggle. I have headaches and eyestrain from lack of sleep.
I miss the social interaction of going to work and the personal rewards of hearing I have done a good job. I fear every day that “they” will decide I have to work on-site more often and wonder how I can do that physically or financially. I stress out over any change to my routine because every minute is taken, and to add anything creates a challenge, even if it’s adding a good thing. I worry about finances and the credit card debt that keeps mounting to pay for the things that are keeping Lynn doing as well as he is. I worry that others will think I’m taking advantage of working from home to “goof” off even though I am involved in work of some sort off and on every waking hour of my day AND night. It’s not unusual for me to respond to an email, finish a report at 10 or 11 at night, or send an email at midnight or 1 a.m.
How am I? I’m tired, I hurt, I am fearful, and I carry a huge burden on my shoulders, but I am also thankful that I have the knowledge to care for Lynn, the financial stability to make the credit card payments, family and friends who support me, a job that allows me to work from home, a house that has enough space to hold all the “stuff” I need to do both my “work work” and my “caregiving work.” I am blessed because I have an amazing God who makes “it” all work out and gives me what I need when needed. So how am I? I’m okay. I’ve “got this,” and I’m okay.
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.
