Tag Archives: Wheelchair

MS and Exercise: “But you look so good.”

Forgive me because I look so good. I would trade you in a heartbeat.

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Physical Therapy is important to me. In every case when I’ve needed it, it has made a positive difference for me. Admittedly, doing the exercises at home is a lot less fun. I’m a social person. I get to know everybody there. I refer to the receptionist as my “co-worker”. We talk about all the things co-workers talk about: the kids, weather, recipes, weekends, gossip, and anything else good.

Now, I’m on my own. I need to DO things now that use my new strengths. Why not go to the playgrounds 🙂 I say hello to all the parents and even explain why I’m there. It removes the “creep” factor. I make friends. So far my friends list is only Finn, who’s 8 and his little brother Akai who is 5. He broke his nose out there before we met; yet, I was supposed to know that already, I’m an adult. 😦

On this particular day, the “Dad” said, “But you look so good. The things you can’t do…most people our age, can’t do.” Forgive me here, for the negative feelings this evoked: “That’s because YOU dad, and most people “our” age (He’s at least 15 years younger than I am) are 100 pounds overweight…just like you. They also don’t WORK as hard as I do, eat like I do, take the meds. that I do, or make the choices that I do, to stay as able as I do. They don’t leave the career they love, and the money that goes with it. They don’t “crash” 12 hours a day from fatigue, and have less sex.  Random I know but, no energy…no sex. Keeping my temperature down is so critical, I may shave my head in the summer while you go out tan. I’m a VEGAN for goodness sake, and you look like a steak! They’ve never been in a wheelchair, felt my pain, never used a cane, and never had to be carried up the stairs by their husband. THEY, Mr. Fat dad, take these things for granted. Forgive me because I look good. I would trade you in a heartbeat. Except the 100 pounds, you can keep that.”

Of course I didn’t say any of that, I paused, and said, “Well, ugh thanks…I guess”.

Truth is, I know Fat Dad has his own cross to bear and no, I wouldn’t trade him…EVER. I’ll keep my MS and all the crap that goes with it. It’s MINE and we’ve learned to co-exist well…well, well enough.

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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

Teenage Caregivers and MS

The first thing he said when they got me in the chair was “I’m glad you weigh less than Grandma!” when we gave him the look of shame, he quickly said “no, no, I just mean for maneuvering is all!” and off we went to the mall. She and I were on a mission, we had it all planned out, he was just there for man power and lunch at Chipotles. We’re in our favorite department store on the second floor nearing the end of the aisle where there’s only one thing ahead of us it seems and he finally says, “Where are we going?” She and I together say, “Lingerie”. He says loud and in shock, “LINGERIE?” Now surrounded by bras…big ones, lots of them, eye level, closing in on him, he says, “but why! for what! for WHO!?” We’re both laughing hysterically! Clearly he doesn’t see what could be so funny. When I catch my breath I say, “We need to buy your sister some underwear”. He shakes his head and says, “why didn’t you just SAY that?”
Next stop Victoria’s Secrets.

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