“Cut! Take Two…”

In the early days of my journey as an MS Caregiver, Lynn would fall, or we would get into a situation that was difficult and we would look at each other and laugh. We coped with a lot of our hardships by laughing at how bizzare the situation would become as compared to our lives pre-MS.  A friend of mine reminded me this week that when Lynn used to fall, I would pause for just a moment and listen, then call out to the back of the house where he usually hung out and say, “anything broken or bleeding?”  If the answer was, “no,”  I would just keep on with what I was doing and never miss a beat. 

I remember how difficult that was at the time–that is, to just let him fall and not immediately go to help.  That took a lot of will power on my part.  Now I find the opposite happening.  He will let me do almost everything for him if I don’t remind him to try it himself first.  I was wondering when that change occurred and I think it happened when he was in ICU for so long.  He couldn’t do anything for himself and got used to me doing everything for him.  Then when he came home, he was still too  weak to do much on his own so I continued giving maximum care.  Gradually over time it became a habit so that now, we have to consciously stop and determine when should I move his arm for him and when should he do it himself?  That was also when I began to tell myself that he was taking advantage of my being helpful.  Or I would say to myself, “he could do it himself if he would just try”…I think that’s also when we began to laugh less.

For example:

I got upset with Lynn this week over something that was absolutely not his fault. I was trying to take some type of device that cuts circles out of wood out of the electric drill.  It was in there very tight and now that my arthritis is so bad in my thumb joints, I have no strength in my hands.  So as I was struggling to get it out, it cut my finger. Just a small cut–didn’t really hurt much, but when Lynn tried to reassure me that it couldn’t cut me if I held it right, my feelings got hurt and I almost cried. I also got aggravated and curt in my comments and with an edge of hysteria to my voice, threw my hands in the air and said, “I just can’t do it.  Can’t you see that I just can’t do it?  I cut myself!  See? Right here. Why do I even try to do work with tools, etc. etc. etc.”  Lynn’s reaction then was to try to do it himself…which he can’t and I’m annoyed that he feels like he has to try and I know that he’s feeling bad because I’m feeling bad and downward we spiral….

Finally, I stop the spiral and explain.  “All I wanted you to say when I got cut was, ‘I’m sorry. Are you okay?'”  His response to that was, “Oh.  Why didn’t you say so?”  UGH! 

Later, I thought about what happened and why and here’s my insight….

When I got cut, the following thoughts went through my mind in rapid succession.

  • “Oops, I cut myself.
  • Oh, no.  Now I have a cut which will burn when I have to wash clothes and dishes in a few minutes.
  • Why do I have to clean up after his friends when they use his tools?  That’s just more work for me.
  • I’m stupid when it comes to tools. If I knew how to work with tools better, none of this would have happened.  I know how to use a drill.  What’s wrong with me?
  • He (Lynn) just expects me to do everything.  He expects me to do everything he used to do plus everything I need to do for him plus everything that needs to be done around the house and work full-time and do it all perfectly.  He doesn’t ever think about what I need.
  • He doesn’t care that I got hurt.
  • He doesn’t appreciate what I do.
  • My life is miserable and it will never be any better.”

All those thoughts went through my head in a matter of seconds.  Based on what I told myself, I went from a simple, “oops, I cut my finger and need a bandaid,” to, “my life is miserable and it will never be any better.”  Now if I had put the brakes on my internal conversation after the first bullet, I would have gotten the bandaid and moved on.  Instead I sulked for a while and made both myself and Lynn miserable for a while. 

None of those things I said to myself other than, “I cut my finger,” were true.  All the rest was just me feeling sorry for myself and telling myself a story to reinforce my self-pity. What a waste of precious time.  If I had instead just laughed and said, “what a klutz,” or “looks like the drill is working,”  I would have felt better in the long run, Lynn would have felt better, and we could have had a fun moment to share rather than sadness and emotional pain. 

So the morale of this blog is, “watch the stories you tell yourself.” 

I’ve got to get back to looking at the funny side of life more often. “Hey, did you hear the one about….”

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About mscaregiverdonna

I am a full-time caregiver for my spouse who has Multiple Sclerosis while I try to work full-time, take care of our home, and handle any number of other functions that used to be shared by the two of us. I'm learning that it's amazing what you can do when you have to and when you have God to send you the resources you need to manage moment by moment.
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7 Responses to “Cut! Take Two…”

  1. Robbi says:

    Donna you can beat yourself up for being human. Sometime we can have a little pitty party. Life is spinning out of control some days. The trick is to not stay at the party to long. Have a good day

    • mscaregiverdonna says:

      You’re right. I do tend to beat myself up at times…it’s that perfectionist trait in me… 🙂 thanks for the reminder that humans tend to need pity parties on occassion as long as they do not overstay their welcome.

  2. Maria says:

    Hi Donna!
    I’ve been meaning to write you for ages, but I struggle with time and opportunity… you know how it is. You write so well, explain everything so perfectly, I really think you should write a book, any type of book. You are a very inteligent and sensible person, and I admire you deeply.
    I just had to say this, because you’re helping me immensly by preparing me and teaching me to survive the times ahead with some joy. My husband is becaming more incapacitated day by day, and I’m scared. We live alone, and I don’t really have anyone to help me if I needed, and sometimes I feel just like you described above. I panic! Because nothing can happen to me, I can’t get sick, because he depends on me and just me to almost everything.
    I know that somehow you’ll always have the strenght and wit to overcome the difficult days, and I thank you for that, because you will be my inspiration.
    Thank you!

    • mscaregiverdonna says:

      I’m so glad you are finding my messages to be helpful. It’s funny you should mention a book. Lynn and I have decided to write one together. He will address coping with the disease from his perspective and I will write from the caregiver’s perspective. I expect it will take us quite a while to write it as I don’t have a lot of free time to work on it but that is a goal we have for the future. Your comments helped confirm it might be a good idea. Thanks for that.

      • Maria says:

        I don’t want to be rude, but since we are thinking the same I have another request: an ebook would be perfect! My husband can’t handle books, and a download would be better for us since we live in Portugal 😉 Maybe you could sell it on amazon, I don’t know… we buy a lot of kindle ebooks.
        I’m waiting anxiously to learn even more from you!

    • Sara Weishaar says:

      I am blessed to have two strapping young men at home who help us so much, but there are times when they are out of town at the same time that we have to ask neighbors for help. Again we are blessed to live in a small farming town of less than 400 so getting help is easy. The hardest part is asking for help! Please find 5 names of people you can put a call to anytime of the day or night, and keep their numbers handy. Hopefully you won’t need to call often, but you have a plan set if you need it. I like to treat our helpers to home baked goods when the help. Just a side note that we have learned is when my husband uses a public restroom he does not lock the doors. You never know when he will need help and it is easier for someone to just open a door than to track down a key, or crawl under a door. Hope I helped a little.

      • mscaregiverdonna says:

        Thanks Sara; those are good suggestions. I can remember the days when Lynn had the ability to enter a restroom without me that I would worry that he might fall while in there. Now the issue is more of finding a restroom we can both enter together without causing public embarrassment to anyone of the opposite gender to find us inside (or embarassment to us for that matter!)

        I plan to restart the group meetings in September (next month). I’ve found so few can attend during vacation time but hopefully we’ll have several available after Labor Day. I look forward to getting to know you better.

        Donna

        PS I am blessed to have a church full of good samaritians who come help if they possibly can but I’ve found that even the willing have limitations so you are right that any back up plan needs a backup as well.

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