So, How Are You....Really?
When you run into someone when you're out in public, 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 really want to know details; they're just asking to be polite and to communicate that your well-being is something that they care about. Therefore, my typical response is, “we're doing fine.” Then, there are those who know a little more about some of our challenges and want a little more information, so that group gets, “Doing well. No new issues right now.” That’s all they really 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 totally disabled him so in their minds, “how good can it be, anyway?”
There are those who 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 them is there is. 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 share the surface things and change the subject.
The fact is, Lynn is totally disabled. That's not likely to change. He feels lousy on some days and less lousy on others. He’s tired every day but some days he’s just tired and other days he’s exhausted to the point that he couldn't move his power-chair to get out of the way of a car speeding toward him. We attribute those good and bad days to a variety of factors but in reality, “who knows?” It is what it is.
So then, how do I respond when someone asks me, “How are you? No, really, how are you?” Usually I still just smile and say, "I'm doing okay; it’s hard but I manage." I don't believe that they really want to know how my life really is. It would sound too much like I'm whining because if I really told them like it is, it would go like this:
How I am is tied up in how Lynn is. If he’s having a bad day, then I pick up all the things he cannot do and add them to the things 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 each night 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 on at least 15 pounds. I drink coffee to keep me functional and take “Stay Awake” caffeine pills to drive because I get so sleepy whenever I sit down for very long.
I get no exercise other than going from my desk to his room to care for him and back to my desk to work or to 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 in 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 into work and I miss 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 will be able to 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 debit that keeps mounting to pay for the things that are keeping Lynn doing as well as he is. I worry that others will think that 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 finish a report at 10 or 11 at night or to send an email at midnight or 1 a.m.
How am I, really? 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 thankful Lynn is part of my life and we can still laugh together and enjoy sharing a movie while I feed him and that I have him to share the stories of my life with. I am blessed because I have an amazing God that makes “it” all work out and who gives me what I need when I need it. So how am I really? I’m okay. I've “got this” and I'm okay.
Do you celebrate your MS Anniversary?