Guilt Ridden

How do you show your love?

“Negative emotions like loneliness, envy, and guilt have an important role to play in a happy life; they’re big, flashing signs that something needs to change.” – Gretchen Rubin

Physically, I’ve been feeling okay, but emotionally I’m ridden with guilt.

I’ve come to realize, the more I have trouble accomplishing task, the more it leaves my loved ones around me, picking up my slack. And that deficiency makes me feel guilty, grateful and sad all wrapped up in one.

When I’m tired, my husband literally has to dress me. He also has to feed me and help me use the restroom. To be honest, from time to time, I lower my head in shame when he’s helping me in public because it makes me feel like a dependent failure.

I know, I should be celebrating I have so much support in my life. But instead, I sometimes spend my whole day grieving over all the things MS has taken away from me. I just get caught up in dwelling on my old life and career. I get so engrossed with my problems; it causes me to dismiss other people’s issues as trivial as compared to mine. I’ve never been a fan of running from difficulties but the pain from MS sometimes has me wanting to hide away from the world. The disease consumes me and all the independence I have lost because of it, rings in my head.

So when I’m feeling sorry for myself, I sometimes forget how much my husband has to give up for me. He use to jog in the park but doesn’t do that anymore because I’m afraid to be left alone. That sucks for the both of us. Especially, since he always makes sure I make it to all my workouts and physical therapy.

The problem is, I don’t know how to show him how much I appreciate him. So, what can I do to express my immeasurable love and gratitude? I need ideas.

What are some small things you do to show your love?

Author: Nicole Lemelle

My name is Nicole Lemelle. I am a writer, activist and a person living with Multiple Sclerosis. I created My New Normals to educate those who do not understand MS, reassure people with similar plights and inspire everyone to seize command of their lives.

16 thoughts on “Guilt Ridden”

  1. Nicole , you can just delete this if you would like to. But here goes for couple of tips. Warm your feet on his legs when you are cold in bed. (Men always seem to be warm). Wrap your arms around him from behind him in bed and tell him as you snuggle in that you will always have his back. Make sure that his favourite blue cheese is always on the shopping list ,even if he is doing the shopping-that you remember is cool. Pat the seat on the sofa beside you for him to join you and stroke his hair and say nothing but that you love him. He knows already.

  2. I look so forward to reading your postings and cant wait to see the next one. You write exactly what I am feeling. Thank you for being here and sharing. The guilt and sadness I feel for husband because of how much my MS has taken from him as it has me is overwhelming. I want him to move on and enjoy life. Its bad enough MS has taken my normal life away it shouldn’t have to ruin his life too. I am devastated seeing what he goes through day after day. After he falls asleep i just cry myself to sleep knowing I have nothing to give anymore.

  3. As Muff said, I make an effort to say ‘thank you’ each and every time my husband helps me. I am totally dependent on others for almost everything so that’s allot of thanks. He takes daily walks with our dog and we make sure I’m safe, secure and have all manner of communication devices nearby before he ventures out. He also takes short trips to run errands. I found myself getting anxious when he’d leave, but now I find an interesting audio book or movie to occupy my mind and give him an hour or two away. If I really need him, I call him and he heads home to a smile and a kiss, he likes that, lol.

    When I feel guilty, I remind myself if the tables were turned I would care for him as he does me, knowing that’s true helps me cope. It’s normal, natural and totally understandable to have negative emotions attached to living with a MS diagnosis. It helps me when I tell myself I can ‘wallow’ in them for a day or two or three. I feel them as opposed to stuffing them and rarely do I wallow for a full 24 hours as a result.

    You are such a loving and lovely person, Nicole, it comes through loud and clear through your writing, maybe write your DH a love letter?

    Thanks for sharing your story so honestly. I always learn from you and always relate.

  4. I have been married for 33 years. I often feel guilt as my husband picks up a lot of slack for me. It is hard to be needy.

    When we separate we always kiss and say I love you. We are best friends. I tell him everything I am feeling and he understands. He knows I would do the same for him if the situation was reversed.

    I wrestle with guilt as it is, what happens when I am incapacitated? I can’t even go their in my mind. I am so scared of the future.

  5. Fortunately, I can be left alone for a few hours… but I show my love to my wife by letting her (“letting”? try “encouraging”) her to go off and have HERSELF fun. The Women’s Success Circle… Lunch with a friend. A movie. A dance gig in another city, even. Getting MY friends to spend “me time” with me, so wife can be left unbothered. Just giving someone “space to breath” can be a great kindness.

  6. Nicole,
    Is there a friend that could stay with you while he is exercising? It is challenging to deal with this but I have been amazed how many people can help in little ways . I have been empowered by the way FDR handled his disability. I wish I had something else but prayer is powerful and that is coming your way!

  7. Nicole, first think of your husband as that, your husband, not a caregiver. Tell him honestly how much you really do appreciate what he does do for you. secondly, he needs to have some of his own down time. My husband still works FT, and travels to boot. He also goes on vacations with his buddies, rides his motorcycle & hunts. I am alone while he’s working & someone stays with me while he travels, etc. My husband puts me in the shower & cooks half the time. As difficult as it is you have to stop feeling sorry for yourself & accept how your life is now. You can’t chg it but you can embrace the life you have with your husband, as different as it may be. You have so much to be grateful for!

  8. I think they know how much we appreciate what they do, but I always say “Thank you,” for even the smallest task — helping me out of the shower, lifting my tired legs into the car, pushing the wheel chair when I need it. Right now, he’s hanging my living room curtains and drapes after they were cleaned. They’ll be a little uneven, but I don’t care — I’ll still say my humble thanks. He knows I didn’t ask for this lousy MS, nor do I wallow in it, and for that, he just tries to help when he can. A simple “thank you” goes a long way!

  9. I can relate to this. My suggestion is if you can get some outside help, even for a few hours a week, please do. That way, your husband will have time to jog, and the two of you will have a little time away from each other. It has really made a difference in my marriage and how we manage my MS. Good luck!

  10. Nicole

    First, your husband knows. He is great man, and I’ve seen him take care of you.

    I’m a pretty decent judge of character, and although it’s easy to lament those things lost; you really chose wisely when to married him.

  11. I am with you on this one. I feel like my husband has given up so much and I know he is exhausted trying to help me with everything. I so often fail to recognize what he goes through to help me. I don’t think he’d have it any other way, but I am sure if I was a little more acknowledging of the sacrifices he’s made things would be better for us both. I hope you find what you’re searching for and that you can both let go of ms for a little while!

  12. I take inventory of what I used to do that falls on him now & try to find another way that I can do it so he doesn’t have to. For example, I always loved cooking, but the stove top is too tall and I can’t reach the dials to even turn it on. I’m shopping induction cookers right now so I can reach the burner without setting myself on fire. Then he won’t have to pick up restaurant food every night anymore, he’ll come home to dinner again.

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