Tag Archives: Fatigue

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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MS and fatigue :(

Just about to sit and put my thoughts down in the name of a blog post.

journal50019628_nIt’s taken me all morning to have breakfast, take my medicine(S), and catch up with a girlfriend on the phone. Of course, now it’s 2:27 and I’m CRASHING! Dammit! Gotta go.

Comments:

When have you found fatigue to disrupt your day?

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Meet me at the Photo-shoot: Going outside of your comfort zone.

 

To be comfortable outside of one’s comfort zone, you’ve got to go there daily. Eventually, what’s uncomfortable becomes comfortable again. That’s what I tell myself.

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Abby met us at the door. She was glowing, not because it was hot, and it was, but because she is a new mom giving birth in about 4 weeks. She’s one of my “Young Barista’s”. A group of young people who have worked in my favorite cafe’ over the past few years. They had taken very good care of me in my hours there, writing. They have also at one point or another, modeled for me, and I’ve told them all, “when you have your first baby, call me. I will do a photo-shoot for you.” So, I wasn’t surprised to answer my phone and hear Abby say, “Estizer, remember when you said…”

I’ve since learned to never tell anyone what I will do in the future. This could not have come at a worse time. I haven’t taken my “real camera” out in about 2 years, and was honestly just not strong enough to do it now. But…how could I tell her, no.

I mentioned this to a dear friend, Karen T., who has helped me before on photo-shoots.  She said, “you can do it with help though, right? I’ll be your “photo-go-fer”, for a day. I was overjoyed, this meant I could tell her, YES!

The day of the shoot came, and it was extremely hot. The heat was taking it’s toll on me but, my first concern was my pregnant Mom. Did she have water? Was she in the shade? Was she relaxed? While I was watching Abby, Karen was watching me. Do you have any water? Can you come into the shade? What else do you need?

I only had to “think”, I need the camera over here and Abby over there; Karen and “Dad”were on it. In this heat, it was tough for me to think everything through. The technical stuff, F-stops and shutter speeds, filters and sunlight. Ultimately, I had to let the thinking go.The technical stuff was overwhelming. I took a deep breath, relaxed, and let my inner photographer go free. I kept an eye on my watch because I was mindful of my pregnant mom. I wanted to finish and be out the door in under two hours. 1 hour and 45 minutes…SUCCESS!

Karen and I went to dinner. I was so exhausted that I cried in the parking, lot out of sheer gratitude and overwhelming fatigue.

I can push myself through the eye of a needle, but, the cost can be quite high. In this case, so was the pay off.

Push yourself. Go outside of your comfort zone. You’ll discover you can recover some of the old you, or if you’re lucky, you’ll discover something even better…a new you.

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What takes you outside of your Comfort Zone? What things have you changed to make that happen?

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Filed under Ilness and The Arts, Mental Well-Being, MS and Exercise, MS and Fatigue, MS and Pregnancy, MS and Visualization, Riding Out a Relapse, Uncategorized

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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Meet me for Coffee!

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We’ll set a time when you are free and so am I. No distractions please. You get a cup of coffee or tea at your house, and I do the same at mine. Then, whoever initiated the date makes the call, and we talk just like we would if I could see you. It’s really that simple.

If you’re ever limited in your ability to go out, it’s extremely important to keep your connection with others until you can do more. With MS, you can quickly lose touch; you don’t see it happening until it’s too late.  It’s such an unpredictable disease; you expect to be down for just a bit, but you never know. This withdrawal can lead to an unintended isolation, which leads to depression. It happens quickly. Friends call to talk and go places and you decline more and more. Your speech problems, your balance issues, your spasms, your fatigue. You really just don’t feel like going out.  Even talking on the phone can wear you out. It all takes so much energy. Eventually, they call less and you are relieved.

There are those few that hang in there. They don’t call as often, but they will still call, you can count on it. They’re the ones that understand because you’ve explained this to them when you were well, before the relapse. They call to say they don’t want to talk, the call is just to check on you, and to say that they love you.

Things you can do to make this easier:

1)      Most importantly, talk to your close friends when you are well. Explain to them how it feels when you are having a relapse, as best you can. Each relapse is different, but you can explain how things have gone in the past, and that they may be completely different but to please be patient.

2)      Send a blanket email or text to your selected friends.” I’m not answering calls or emails and such right now because my MS is acting up. Please don’t worry; I need to use my energy wisely.  Another note will come when I’m up to it. Meanwhile, keep the party going.”

3)      Answer calls when you can, but keep it simple. You don’t need to explain everything. “I know I haven’t answered your calls in a while but my MS is acting up and I feel crappy. Please call me back in a couple of days, (weeks, months).” Do not wear yourself out.

As soon as you can, do a little more. Start small. Answer more calls and even make some. Have coffee dates more often, and enjoy them.

Me and Ruthie 🙂300666_10200856069915856_673429886_n

COMMENTS: Please share the things that you do to stay connected that don’t require going out. We could use more ideas.

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Filed under Mental Well-Being, MS and Depression, Riding Out a Relapse

“We Are In A Dive!” Iron Deficiency Anemia

“We are in a dive!”We’re CRASHING!

And like Denzel…We’re going down!

Iron deficiency anemia occurs when the body doesn’t have enough iron.

Iron helps to make hemoglobin in red blood cells. The hemoglobin then carries oxygen to all of the muscles, tissues and organs in your body. Essentially, without iron, body parts would suffocate (lack of oxygen) and die.
I’ve taken every iron supplement under the sun! They seem to work for a while, but then… we’re in a dive again! WHY?

My mother would say, “That’s easy. It’s because you don’t eat meat. I told you, you need to eat like regular people. You know you NEED a little meat. Everybody knows that’s where it comes from. I bet that’s why you’re always so tired. You ought to eat SOME meat. Come on over, I’ll fix you some liver and onions. “

Mom, you’re right. Eating red meat and organ meat are the most efficient ways to get iron, but I’m vegan so that’s not going to happen. I’ve learned it is possible for a vegan diet to meet the recommendations for iron as long as calorie intake is adequate (and mine is not). The key is to eat a varied diet (and I don’t).

I can’t leave out possible absorption issues. Even if I take enough in, my body might not be absorbing enough of it. To help with this, I should have vitamin C with my iron rich food. I’ll keep a bowl of sliced oranges in the refrigerator. Calcium also hinders the absorption of iron; avoid high-calcium foods for a half hour before or after eating iron-rich foods.

Read more: http://www.care2.com/greenliving/12-top-vegan-iron-sources.html#ixzz2IaOC5BTr

Another possible cause for women would be heavy menstrual bleeding. Not my issue! (insert Happy Dance here)

And last, but not least, is to have bleeding inside your body. This bleeding may be caused by problems such as ulcers, hemorrhoids, or cancer. This bleeding can also happen with regular aspirin use. Bleeding inside the body is the most common cause of iron deficiency anemia in men and in women after menopause. All I know is, I see no blood and I feel no pain.

To muddy the water; things are more complicated when you have MS. With ANY symptom, MS comes to mind as the first cause.

These are symptoms of iron deficiency that I thought were my MS and ignored:
*easy fatigue and loss of energy *shortness of breath *headache *difficulty concentrating
*dizziness *leg cramps *insomnia

These are the symptoms that didn’t seem like they could be my MS:
* craving for unusual food with no nutritional value (pica): in my case, the chewing of ice (pagophagia)
*cracks at the corner of the mouth (seriously?)
*a”wired” feeling in my legs at the end of the day: strong urge to move the legs, MUST stand, interferes with sleep (restless leg syndrome)

THIS is the symptom that took me to the doctor (eventually):
HEART PALPITATIONS, which I managed to ignored as long as I could. Give away was, falling asleep in my husband’s arms and him feeling what he thought was a cell phone vibrating in my shirt pocket. What shirt…what pocket?
If you don’t have enough hemoglobin-carrying red blood cells, your heart has to work harder to move oxygen-rich blood through your body. This can lead to irregular heartbeats called arrhythmias (ah-RITH-me-ahs), an enlarged heart, or even heart failure.

Read more on iron deficiency anemia: http://www.nhlbi.nih.gov/health/health-topics/topics/ida/signs.html

Now what?
Plan of action: get more iron A.S.A.P. with iron infusions and then…
colonoscopy/endoscopy. We’re looking for blood.

WE’RE GOING IN!

Denzel Washington

Denzel Washington

“WE’RE IN A DIVE”

And I’d like to thank Denzel Washington for his cameo appearance in today’s post.

COMMENTS, tell me your thoughts:
Have you ever missed a problem because you “thought” it was something else?
If you are a vegan, how do YOU keep your iron up?
Have you ever been infused? How did that go?

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Filed under MS and Fatigue, MS and Iron Deficiency Anemia, MS and Nutrition

The Farmers Market 2012

Ahhh, the Amish girl is in her spot like she is every week in full garb with her fresh breads and pastries. Yes! and my friend from the Caribbean spot that has the Vegan food I like. They’re all still here. Kevin has brought me back to the farmers market.
He says “look honey, here’s the corner, you’ve got to get out here- quick (he says gently) there are cars behind me and the lights gonna change. I’ll park and be right back!” I can’t think about it or I know I won’t move fast enough or AT ALL so I just do it! Before I know it I’m on the sidewalk by a tree. I’m not hugging the tree (I realize how crazy that would make me look) but I’ve checked it out and I’m close enough so that if I need to use it for balance it’s there. I don’t move an inch.
Kevin finds me. He’s moving fast “Honey I need you to SLOW DOWN” How often does a woman say THAT to a man? (wink, wink) He’s been running, I could tell from the couple getting up off the ground. He was in Mario Andretti Mode trying to get back to me. I take his arm and we walk across the street like an 80 year old couple.
As we carefully step up onto the curb of the farmers market I slow down even more, I stop to get my bearings. It’s all coming at me at once. I try to keep moving, I feel his hand gently pushing me into the crowd but there’s so much to manage. First there’s the sidewalk and it’s unevenness in the changing gradation of the concrete while at the same time there are these feet walking down there. Then there are the children and the dogs on leashes and people sitting in the grass near us, or is that far away? I can’t tell. They seem to be sitting on the ground to me, I may step on them, Oh my goodness I am, they’re there! I stumble, reach…Kevin. The flowers, the tents, the colors, the tables, the crowds, the food, the smells, the talking, the music! OMG…Please just get me out of here!
I don’t know what I said to him. I think nothing but he leds me to a clearing. Last year I would have been all over the place with my camera, and without Kevin. I’m a Photographer, you don’t bring you’re husband…that’s lame! We have the best farmers market in the world. Every week we have special events, tomatoes, or garlic, and every week special activities for the kids. It’s a photographer’s playground.
Our Sat. mornings were so different. I’d kiss him and go rushing off to the market with just my camera and change for parking. He’d be off to yoga with a mat and a water bottle.
Today, I’m exhausted. He takes me home for a nap. He hasn’t been to yoga in a year.
We’ll be back next week.

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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