Wordless Wednesday - do what you can

This line of thinking served as a great reminder for me recently and I thought I would share Arthur Ashe's wise words. You see, this past weekend I had intended on doing so much but fatigue hit me hard and I ended up doing so little. Yet, I turned the "doing so little" into things I could attempt, including continuing to read a great book I've got my nose in. Learning to accept limitations is difficult yet all we can do is use what we have, and do what we can. 

How do you "start where you are, use what you have, do what you can"? I would love to hear from you.

Best always,
Christie 

Lobster Arms, Food Trailers and My New Theme Song

Greetings Earthlings.

I hope this post finds that you are all doing well out there on our lovely planet, wherever you may be, whatever you may be doing.  Me? I am doing super swell.  I'm on my way to Texas to congratulate my nephew on his graduation.  Very excited to spend time with the family. Yee-Haw!

Meanwhile, back in sunny San Diego, my life with MS continues.  I am getting on my bicycle as often as I can, whenever my abled body allows me. Love the wind in my hair, not loving the head winds that make the ride a complete struggle! Ugh. I need some rockets on my pedals.

Here’s what’s kept me entertained these last few weeks and things that are on my cluttered mind. Yes, I am entirely too lazy to write something longer so I choose to write in bullets. They are very effective in organizing my running-around-like-a-crazy-person scattered thoughts. Cheers to compartmentalization in the form of a bulleted list!

• Lobster Arms. This is what happens when you go for a bike ride and forget to put on sunblock. I look ridiculous and am now sporting a nice T-shirt tan. Yes!
•  The spinning hasn’t stopped and reminds me now of the song, “You Spin Me Round (Like a Record)”. I’ve declared this my new theme song to celebrate the vertigo. Round, round, round, round. I sang this the other day as I walked down an aisle at the office, dragging my hand along the gray felted cube walls to keep me on the straight and narrow all while hoping that none of my co-workers pass me so I don’t have to try my mightiest to convince someone that I have not had a morning cocktail. Round, round, round, round.
• Can’t wait to check out the Austin Food Trailers and meet up with fellow MSer McCall T. We are going to hang out and chat over some crepes. Oui! Oui!
• Another infusion without incident. I had my second dose of Tysabri last week and I’ve got nothing to report because nothing really happened. Well, except for the flow of the big T and that minor heart palpation. That’s pretty major I suppose.
• Old age or an MS symptom I really need to start stressing about? You tell me. Here’s what went down: I went out to dinner last weekend and ordered what I thought was a Cesar salad with shrimp. I said it out loud while reading the menu. Cesar salad with shrimp please. Our server was not on the same page.  She brought out this said salad with salmon. I never order salmon. Ever. My sweetie told me I ordered salmon. My parents told me I ordered salmon. Impossible. I swear it was shrimp. It was rather delicious but that’s beside the point. I ordered shrimp. And, of course whirls of thoughts enter my MS brain. What if I mix up my words all the time and I’m not aware of it? Doing this at work could be problematic. Seriously. I can see it now. “Sales are up 7%!” When in fact sales are down 7%...
• The heat and humidity of Texas is on my mind and I’m anxious about it. They have AC in Texas, right? My sister-in-law is getting misters for my nephews graduation party. Suh-weet. I shall relax in the midst of spraying water while guarding my hearing aids with the umbrella of my hands and sipping iced water no, let’s make that an iced vodka drink, through a straw because my hands will be busy protecting my hearing aids. As long as I stay cool, that is all that matters. Whatever it takes.
• Bam! That is the sound of me hitting a majorly big brick wall. Or, commonly known as MS fatigue. Totally knocked me out and I was confined to a full day of rest. Poo.

I hope you are more settled than me at the moment. How are y’all out there?  

Ciao for now from deep in the heart of Texas.

C

Happy Monday MSers!

Survey Says! 86% of MSers Deal With Fatigue

Hello Friends,

Recently, over 10,000 MSers completed the MS in Focus online fatigue survey. The combined results are in and it turns out, 86% of us say that fatigue is one of our three main symptoms. That is a lot.

We all know fatigue is a big deal and it seems fairly obvious that a very high number of us claim this is a main symptom. Yet compiling stats like this is important and I, for one, am hopeful that it will fuel the need for more research. More research may lead to better treatment and improved management of this overwhelming symptom. Better treatment and management of MS fatigue will make us feel better. I like the sound of that. 

I encourage you to peruse the full survey by clicking this link: MS in Focus: online fatigue survey.

Be well,

Christie

How to Beat the Heat

Great tips for beating the heat came through on Tweeter this past week, from our friends at the Pacific Coast Chapter of the MS Society. And, they reminded us “…heat generally produces only temporarily worsening of symptoms and does not cause more disease activity or damage to nerves”. The tweets below are great reminders on how to stay cool. Thanks for sending these out mspsc and stay cool everyone!

Top 7 Tips to Beat the Heat:

• Beat the Heat Tip #1: Drink plenty of fluids. Water is the fluid of choice. Avoid caffeine as this acts as a diuretic.

• Beat the Heat Tip #2: There are a number of cooling products including vests, neck wraps and bandanas available for purchase.

• Beat the Heat Tip #3: Wear lightweight, loose-fitting and breathe-able clothing. Wearing light colors can also help.

• Beat the Heat Tip #4: Make sure to do your outdoor activities during the cooler times of the day, usually early morning or evening. 

• Beat the Heat Tip #5: Try an aquatics class. Check out some options in your neighborhood. 

• Beat the Heat Tip #6: Don’t want to spend the money on a cooling product? Try a wet towel stored in the refrigerator or cooler.

• Beat the Heat Tip #7: Try pre-cooling. Soak in a tub of cool water for 20-30 minutes before heading outside.

(slapping forehead) I suppose drinking gallons of coffee and wearing flannel yesterday was not a good plan.

P.S. most electric companies offer discount programs for MSers. After all, AC is a blessing during these fiery months! I just downloaded an application from SDG&E’s website: sdge medbaseline program.

P.P.S. Did you know? The cost of an air conditioner is tax-deductible with a document from your physician. Thanks for letting us know mspsc. I did not know this and gaining this knowledge right now was perfect timing – we need a new AC!

How do you cope with fatigue?

I am not even sure how I deal with fatigue. At times, I don’t think I deal with it all except to lie down and rest. You know the feeling, right? It can feel as though we got knocked out from having walked into a brick wall. Sans bruises. No amount of caffeine in the world is enough to perk us up although I do try with triple skinny lattes.

I live with the added benefit of stressing that my fatigue is truly a time waster. My mind spins around and around, ultimately helping me reach the decision that fatigue = doing nothing…I feel lazy…I want to get out…do some gardening… I want to ride my bicycle… walk along the ocean…take some pictures…maybe make a painting…fat chance…too fatigued…I feel like an MS blob. Argh.

When I slow down to think about it, I know what is best. “Listen to your body”, my good friend Mel always reminds me. So I try to relax, grab my book and listen to the sound machine soothing me with ocean waves but the squawking seagulls I hear just brings me back to my circling neurosis, reminding me that I would much rather make a walk along the ocean. To hear the waves in person, live from beaches of sunny San Diego. I remind myself to work a little harder, continue reading and before I know it, I fall asleep.

So, my friends. How do you cope with fatigue? I would love to hear about your experiences and tips too!

The MS Buzz #6

The MS Buzz #6 is now available! Last week's chatter? MS Pain, 2011 Neuro Film Festival, MS Fatigue Webinar and Phil from the Amazing Race! Click here to read more: the MS Buzz #6.

The MS Buzz #4

The MS Buzz #4 is now available! Last week's chatter? MS Fatigue, Gilenya, new trials and a book review. Click here to read more: the MS Buzz #4.

Lesion Hangover

When I woke up at 5:30, unable to continue sleeping, I suspected I might not last all day.  I felt pretty shaky, fatigued, and cloudy, rather like a hangover less the alcohol consumption.   Let’s call it a lesion hangover.  My hangover lasted all day and I found myself praying that a greasy cheeseburger and fries would be just the remedy I needed.  I didn’t dare, knowing that it would not make me feel better but is it wrong to wish for a regular hangover that eventually goes away?