Tag Archives: Marriage

The Struggle

The Struggle

I struggle to get kids out of the house with some kinda breakfast, Eggo Waffles in the car, spelling quiz in the car, pull over to yell effectively about wrong words. Doesn’t everyone do this? Get to work, park my car on E. Not the car…me. At work, struggle to pee, no time for that, struggle to teach, to be patient, answer questions, give guidance, go to meetings. Stay awake in them, have fire drills. Struggle to get kids to soccer, tennis, and gymnastics. Take sitter to play with one while the other is in activity. I drink coffee and wait. Struggle to get home, struggle to get family feed, struggle to do homework. Struggle to read stories, fall asleep while reading Harry Potter…again, struggle to grade papers, keep up, Hubby does my report for work, struggling with cog fog, can’t concentrate, struggle to create a test…couldn’t. Struggle to be patient, struggle to be a loving mom, struggle to want sex, sticky notes on bathroom mirror, reminders, HAVE SEX, MORE SEX, ANY SEX, SEX IS GOOD, grade papers 6:00a.m. on SUN. morning at Cracker Barrel, grade and plan from til 12, at noon “Mommy, Mommy!” music to my ears, I miss my family, husband struggles alone with two kids. Try to grade papers, after school; tennis club, drink LOTS of vending machine coffee, after school soccer stay in car to grade papers, instant sleep. Sat. grade papers, pass out, struggle to get to ballet with Avonex side effects, a peanut butter and jelly sandwich and Celebrex (found to be unsafe, taken off market). Struggle to meditate so that I could struggle more. Struggle to not kill anybody, struggle to stay married, struggle to have date-nights, struggle to get sitter, Chinese food and movie from blockbuster.

I had to stop struggling so I, quit.

HELP! I need your feedback more than ever. I am writing in preparation to speak to groups WITH and WITHOUT MS. Groups that are struggling for one reason or another. To make my presence as meaningful as possible, please tell me if you can relate to “The Struggle” in ANY way and if so how?

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It’s a Wheelchair kinda day!

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Its 86 degrees out side and a gorgeous day. We spend 8 hours on the Schuylkill River in Philadelphia. Our daughter is here with her college Rowing Team, Univ. of Pittsburgh, to compete in the DAD Vail Regatta. We are very happy to see her Row!

Phone call to Dad last night: “I’ve been to the race sight and it is HUGE, I think you should think about bringing mom’s wheelchair.

Slightly frantic phone call this morning:”Dad, I am here again and I am sure Mom will need her wheelchair. Are you definitely gonna bring it? There’s NO WAY she’ll be able to do this without it!”

Of course we put it in the trunk, and I am grateful that she thought of me.

But…we get there and we have a problem! My husband drives a wheelchair like he drives his car, like a TWELVE YEAR OLD. Needless to say, I am not happy with this. This place is in no way wheelchair friendly. Technically, it is handicapped accessible, there’s even a Handicap Port-O-Potty.  The rest is only good if you want to roll in a straight line, up and down the sidewalk all day.  I have my camera and this’ll never work! Huge loss of freedom. We are rolling along with the crowd, and everything I see around me is beautiful. If I were walking, I could stop on a dime to get the shot. I could turn around to check things out from a different perspective. You can’t do that in a wheelchair. I struggle with the guilt of having him stop. Finally, I can’t take it anymore and I say, “Stop, pull over”, and he does. Now it’s time to use ALL of my marital diplomacy. My daughter and I lock eyes and I see in her expression, fear of the unknown. I slowly rise from the chair and go around the back of it. I hold my husbands’ arm and speak softly in his ear, “Honey, I want to get out and walk. I love you and I really appreciate you doing this for me. I know it’s hard in this heat and with all of these people but, I really need to get out and walk. I am miserable in the chair. Taking pictures is impossible. I need to be able to turn and move around for the shot, and I can’t do that in the chair. It’s killing me.”

Husband: “But Bay, that’s crazy! In this heat, with everything so spread out, there’s no…”

Cut off by me:”I’ll be fine.  I feel very strong and Estizer will be with me. I’ll stop when I’m tired, and rest. We’ve even got our cell phones, so I can call you when I’ve done enough.”  I think this is a great idea and with an affirming kiss I turn and join Estizer in front of the chair. She holds my hand and we begin to walk away.

But wait- WHAT’S THIS?

He’s still here. I turn and say, “Honey, you can go and I’ll just call you!” He says, “No, I’m going to stay with you”. I’m mortified. I say, “What? You’re just gonna follow us with the chair? We’re gonna look retarded!” He looks away from me and with a defiant tone in his voice says, “YES”.

We start walking and he stays with us as if this is perfectly normal. I walk about 100 meters and in THIS heat, it feels like a hundred miles. I need to stop and rest, but I’ve pushed it (determined to show him that I can do this). I don’t see anywhere close to go, and I need to sit NOW. I turn towards him and we connect.  We do that mind link thing, that married couples do.

Without a word, he says to me,” I knew I was right! It’s too hot and you shouldn’t be doing this”. Also, with no words, I say to him, “I love you and yes, you were right. Thank you” Then, I sit.

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Comments and Thoughts:

How does the heat affect you?

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Filed under Long Loving Marriages, MS and Family, MS and Marriage, Riding Out a Relapse

Fatigue- The Anti-Sex

We hadn’t had sex in a week and he had very subtly brought that to my attention say… the last SIX days or so! With this in mind, I try to manage my fatigue today accordingly… I go to the gym and get on the bike for 15 minutes (I’ve worked up to that) and leave. I get just a few things from the grocery store making sure not to stay too long. Just enough for dinner. I’m exhausted. Damn, a girlfriend calls and I excitedly get carried away and talk to her for 20 minutes instead of 5. I’m winded. Now I’m crashing.
Its 7:00p.m., my husband is home. I don’t cook dinner. He tells me to go lay down and fixes himself soup and a salad… I sleep. I awake, have dinner, and watch some TV with him, talk about our days, the kids, and various family matters. By the time we clean the kitchen, shower and go to bed, I’m exhausted, and the fun begins.
I turn my back to him, and then comes that familiar rub on the shoulder. You know the rub. The one that makes your mind start to have a very loud conversation with itself “I KNOW it’s been a week but there’s not a cell in my WHOLE body that’s up for this…not ONE, and I haven’t faked anything in a million years and that’s awful anyway for EVERYBODY! I’ve just got to tell him, there’s no other way but HOW? I should have told him at dinner that I’m too tired again I’ll never lie or have sex when I don’t want to have you ever done that it’s disgusting I’m too special for that so now I just have to break it to him it’s going to be a week and a “…the rub continues and he moves closer! He must not hear my thoughts. There’s a problem here!
The rub goes to a full touch and he actually says something! “Kiss me,” “WHAT!?” I say. I can’t believe it. I turn over to face him in all my nakedness “WHY would you say that?” (because surely you MUST know how I feel) Him, really confused now “ummm because I want you to? because I like it?” Me “But you must know what I’m over here thinking, you MUST feel the ANTI-sex chemicals coming out of my pores, I’m sure it’s like a pheromone or something that’s attracting you. You can even actually see it. That’s weird. Don’t you think that’s weird that I’m sending off anti-sex signals and you’re mis-reading them as real sex signals?” As he backs away from me he says,”No, the more you talk, they’re coming out as real anti-sex signals.” I think this is hilarious! I allow myself to get lost in the laughter. I am turned on by his humor, patience and perseverance. We go on to have amazing sex.

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Filed under Awesome Sex, Long Loving Marriages, MS and Marriage