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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • Laura Kolaczkowski
    4 years ago

    Thanks, Donna, for being the voice that reminds us that MS affects the entire family and not just the person with this disease. You and Lynn both ‘have MS’ controlling your life. Thanks for the continuing honest voice and look from your perspective.

  • Donna Steigleder moderator author
    4 years ago

    Thanks Laura

  • lipasi
    4 years ago

    I love your story and share your pain. The best part was the last paragraph. No matter how tired, cranky, stressed, etc. I feel, I try to stop and think what my Dan is going through and think I am so blessed to have what I need to help and that is through the grace of God. You are added to my long prayer list. Thank you so much for verbalizing what many care givers feel.

  • Donna Steigleder moderator author
    4 years ago

    Thank you so much. Best wishes to you and DAn.

  • Kiran
    4 years ago

    Donna, (firstly, I apologize for the book!)
    You are a very strong and inexorable woman. I want to thank you for sharing this. As so many care givers are going through similar situations and… they just do not know how or where to let off their vexation. Quite similar to a cage, they/you feel guilty for trying to get out of. It’s not that your love is less, but, we all need that private time to ourselves; and as a caregiver AND a bread earner… That time is slim to none. And, quite honestly, it’s awful, sad … yet, fulfilling.. you still love that person completely but what you need is – help…
    I can only imagine the feelings of Lynn, as he watches you have to go through this and how he is unable to help you in your struggle; simply cause he can’t… no matter how much he wants to, or wills himself to try… try harder…
    I am a caregiver to my mum. She does not suffer from MS. But is a survivor of a brain tumor and multiple surgeries and other ailments and is just… unwell. Your struggle reminds me of what I must do for her and I can only sympathize with you, and hope that is enough, even though I can not fully be able to walk in your shoes.
    I fear to be close to another do the knowledge of what you are going through. I wouldn’t want someone to go through that for me. (it’s not just because I read your words, your words only prove what I already know) It’s enough that I must go through this myself, as I carry the burden and the fight of MS; while also trying to find work and build my foundation and sustain a social life to do just that. I am so lucky to be where I am, that I am still able to care for others. And, I truly appreciate people who can be open about their feelings, especially in your situation because you have every right to be heard; and there are people who WILL listen.
    This Site is NOT just for those who suffer from MS. It’s for YOU too. So, please continue to share your feelings. You are speaking to what many others feel, but have not come out with because they feel bad… or worse, ashamed. It would be nice if more people were caregivers in this world; people like you. =)

  • Donna Steigleder moderator author
    4 years ago

    Thank you Kiran for sharing your story as well. Though I don’t know you, I can tell your Mom is blessed to have you at her side.

  • Poll