Tuesday, February 21, 2012

Independently Dependent

Nicole Lemelle
Blogger, My New Normals

One of the worst things about the state of my health is the dependency on my husband for … EVERYTHING! OK, that might be a bit melodramatic. It just feels like everything.

I’m constantly yelling his name. “T-O-M-M-Y!” It aggravates me to need something and not be able to get it for myself. Especially since what I want may be as simple as my purse, opening the blinds, or locating a necklace.

In this instance, I ask him to get my choker that is in the next room. After I explain what a choker is, it takes him a while to find it. He finally arrives, hands me the choker, and leaves the room. I try to put it on and my fingers fail to open it. Darn it!

Meanwhile, I know he has every right to be busy doing something for his own enjoyment, although chances are that he is preparing dinner or washing dishes. This only serves to heighten my frustration. He is such a good caregiver/husband and I can only bark so loud. How can I be so selfish? How can I be so dependent? It’s an especially annoying dependency because in reality I know I could be so much worse.

I like to blame everything on MS. I’ve said before that I do hold some responsibility for how I respond to these maddening situations. This time I simply sit a little while longer than I had initially planned. Plus, I quit yelling for him. I’m sure my yelling tends to aggravate him as well. After a brief respite, I am able to awkwardly open the necklace for myself! I then cool down, exhale, and feel proud of my small independent accomplishment.

Keep in mind I don’t hear myself complaining when he is by my side at our gym’s pool. In fact, after aquatic class he comes into the assisted bathroom with me and helps me shower. I’ll spare you the explicit details and will just say he definitely had no idea what he was getting himself into when he uttered those infamous words,  “I do.”

I just never imagined myself being this dependent on ANYBODY.

Then I suddenly remember a fellow MSer telling me, “Nicole, I need someone with me at all times. I can’t even use the bathroom by myself.”

This kind of puts things in perspective for me because at least on good days I can go to the toilet by myself …

28 comments:

  1. I can so relate to how you feel. I am glad i am able to still do a lot. Be glad he understands, you are so very lucky. I am trying to stay independant as long as possible but its very vrey hard when one lives alone with MS

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    1. AMEN TO THAT!!! Count yourself blessed to have someone there--living alone with MS is HELL. Been on my own since diagnosed and people in the apartment building just don't understand--they say--"Oh you don't look like there is anything wrong with you"-if they only knew what we go through. I have noone to ask--there is NOONE to ask--I adapt and adjust--getting things done my way(like frank sinatra--lol) If I can't do it --it will have to wait or figure out a new way of doing it

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  2. I understand what you are going through. I am the caretaker of my husband that has primary progressive MS. Everyday we experience another "can't do" issue. Hang in there, those that help you do it because they love you. I would like to encourage you to check out www.downriverdoc.com. This is my son that is trying to raise awareness for MS. Pass it to others if you would please. God Bless and keep you.
    Judy Snow, Maryville, TN

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    1. Stumpy,
      I try to remember that everyday! Thanks for reading.

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  3. These are the things that I am so afraid of, I admire you for putting into words things that I can't, as of now I can still do most things for myself, but walking has become quite a pain...and it puts a damper on things that we use to do, Just a BIG THANK YOU, for sharing with us.

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    1. Anita, it helps me as much as you to share this.

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  4. I think that anyone who comments on your beautifully written blog can understand how one feels to be in this situation. I, myself have been in your shoes many a time, so I know how frustrating it is to be dependent on someone. I think we are all trying to keep what independence we can, but I can relate to your necklace story. I also did the dame thing, I waited a while and tried again, finally something to be thankful for. Thank you for sharing your story with us. It just proves that we are all in the same place, some with someone to care for us and then others that are alone. Bless you,
    Dottie Sauchelli Balin, Long Island, New York

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    1. Dottie,
      Thanks for reading, Yes, I try not to complain too much about this because I know plenty don't' have someone to be dependent on. Thanks for reading!

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  5. Great writing & honesty Nicole.. True that. It does puts things in perspective being able to still go to the toilet by oneself. I try not to forget to pray at night because God did not forget to wake me up in the mornings. It is hard at times. It is hard to not think blasphemous thoughts when one is not sure how much more'strong' they have left in themselves to cope. Back few years when I was at my worst.. weekly arguments began to creep up over the cost of TP paper and dear hubby's annoyance and irritation about 'why' must we go through so much toilet paper all the time. Of course I knew it was because of me, but I was to 'ashamed' to bust myself out and own that one. Finally after I couldn't stand listening to his clueless griping one more time about having to spend so much money on TP paper I finally blew up in anger... "well you try cleaning yourself when your arms don't work right!" we both just stopped and looked at one another in frozen happenstance. Than it hit him like a ton of bricks. Than the blood came washing over my face and I went and hid in my room. Needless to say he seems to be more thoughtful with his griping about what he thinks is just random wastefullness.

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    1. Nelsonjane,
      Thanks for reading. We have the toilet paper thing too! I thought it was just us.

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  6. The unfortunate thing about MS is that it does have a mind of it's own. Some days it allows us to do things and some days it doesn't. Something new or something old. I've found that if you don't over think things so hard that it sometimes can make a task easier to do.

    Caretakers are really important, they're priceless. I hope that it helps then feel good about themselves that they are doing something to help others. No one wants to be a burden.

    PS
    We all yell from rooms.

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    1. Nancy,
      I try to remember the caretaker thing and I happen to be one of the lucky ones! For that alone I aim to be understanding. By the way its good to know you yell from room to room as I consider you a real role model.

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  7. Wow! Well written and so honest. I too am lucky to have a husband who cares for me when he is not caring for our mom and pop printing business, now without mom, so much. I am truly thankful that my husband has been by my side since the attack in 2010 that rendered me dependent. It's a killer for an independent type A person to not do, and its tough to watch you husband and others do the tasks that once were my responsibility. Thank you for reminding me I'm not alone and oh so fortunate.

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    1. Susan, Thanks so much! Sounds like you have a one of a kind hubby too! I really appreciate your support!

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  8. Hi Nicole. I can totally relate. Sometimes I feel like my hubby would be so much happier without me but when I tell him this, he tells me that I am is happiness. He tells me the best thing he ever did was say I do. I can't tell you how blessed I feel, especially on those days that it is so hard to do for myself. I try not to complain or ask for too many things because he already does too much.
    I have found helpful to write my experience down as you have. If you get a moment maybe you can check out my blog: misa.not.ms@ blogspot.com. It is great to know there are others out there willing to share there experiences. Thank you for sharing such a similar experience so eloquently.

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    1. misa,
      Thanks for reading our story! I too feel blessed.

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  9. Nicole, thank you for sharing so honestly about the frustration and I suspect fear of being independently dependent.

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    1. Carol
      You are very welcome. I think it helps me to share! And the fear lives in the background of my life.

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  10. As a husband/caregiver myself, I appreciate your honesty. The hardest part of our role is that we WANT to make you feel like a Woman. We WANT you to feel wanted and needed. We WANT to let you be independant. But we also want to take care of you. We LOVE you. We NEED you. It KILLS us to watch you deal with this miserable disease. We WANT to do everything we can to ease your discomfort, help you with your pain, lessen your anxiety, and make you feel "normal". We fail. There is NOTHING we can do most of the time and it kills us. The hardest thing for us to do is stand by and watch as the person we Love most in life "gets their ass kicked" by something we can't make pay for the hurt it causes you... we REALLY want to BEAT THE CRAP out of MS in a physical sense. Please remember, we LOVE you and will do ANYTHING for you. Just name it. That is all it takes. If you need help, name it. If you don't WANT help, say so. Human beings are proud and independant by nature. MS removes that option most of the time. We understand how difficult it is for you because we see your struggle every day. We are here for you and we are NOT keeping score. Please lean on us when you need to. We LOVE our Wives and HATE MS!

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    2. Chris, that was beautiful. Thanks so much for being the husband/caregiver you are

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    3. I am just a man madly in love with my wife. Come hell or high water, I will be by her side. I made a vow and I mean to keep it. For better, worse, richer, poorer, sickness, health, till death do us part....

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  11. Thank you so much for posting that, Chris. I read it through tears. I know I'm beyond blessed to have a guy who feels the same way.

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  12. Thank you for sharing. I ask my husband of 33 years to do little things like put in a pair of earrings, fasten necklace if we are going out. He is not retired, I am on disability, and sometimes, most evenings, he'll fix dinner and clean up if I'm out of energy. Everyday I thank god for having him in my life.

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  13. Where to begin ? Married to my smoking hot wife 27 years and just found out what was wrong with me Nov 2011. I've always been active and pretty fit. I thought that I was just getting old and lazy because I had trouble walking for miles and was always tired... Anyway .. instead of feeling sorry for me ... my loving wife just told me that she was going to start learning how to run a 5k race .. (what !?) my wife has never run before.. what was that about ? As I found out later.. what she was saying to me was.. "get your butt off the couch and stop feeling sorry for yourself".. So I eventually got up an started training with her.. I can't run or walk very far, but I could still ride a bike. Tomorrow, she has to train for 11 miles, and I will be right with her on my bike... The weird part about all this is.. I just had my 1st annual MRI. After taking those terrible shots for a year, changing my diet and doing some excercise when I am able, the Dr. announced that my legions had shranked from last year.. now I know that this is not a cure, but it was encouraging and I credit my beautiful wife for her support !!! Keep moving ya'll !!

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    1. I was actually diagnosed Nov 2010.... sorry for the mixup

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  14. Nicole~
    I am just writing my June 1st walking update (I realize it is already the 16th) and I took a break to see what's going on in other people lives! It's amazing that my post is about the difference in personalities of the caregiver and the care receiver~ is it Mars and Venus type differences? Or is it centered solely around the MS? I have no idea but what ever it is, I don't like it!

    We'll continue to laugh because we don't have much choice!
    ~Linda

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