Monday

Who am I Today?

MS is random yet predictable making it difficult to make plans, especially in the summer and warmer months. Each morning as I stretch and pray and visualize the day, my body is analyzing itself. What will I be able to do today?

I'm I feeling spunky and creative? Ready to flow with the river of life?

 
 

Or mellow girl needing quiet and time to rejuvenate?

Morning analysis is necessary for surviving and thriving with MS. We can make all the plans in the world but if we don't listen to our bodies each and every day we will find ourselves in a major relapse just as I did last spring. Over SIX weeks of relapse! It was so not the way I wanted to spend my spring. And it was all of my fault. I mismanaged my disease.

MS is a disease to be managed. It is no different in some ways to alcoholism or diabetes. Diet, environment, self-control and smart decisions make for a healthy life. The opposite degrades the body at a rapid rate. I do not always make smart decisions. I am weak.

But when I do, it feels so great!

I am not the only one effecting my decisions in life. Family, friends and commitments all play a role. But it is my responsibility to tell these people, educate them on the ills of MS, so that I am not pressured by their decisions. Even after ten years of this disease I find myself describing the same issues to family members. You would think by now they would have a better understanding but until you are in someones shoes it's difficult to imagine. So that's one of my goals with The Girl with MS is to help put folks without MS in the shoes of someone with this varied and random disease.

Here's to thriving with MS!

 

Wednesday

What happens during a "relapse" and what caused it?

A relapse is basically new nerve damage to the brain or spinal cord area. A relapse may cause old symptoms to flare up or cause new symptoms to occur. It's quite random. A variety of activities can help cause a relapse.

My relapse nemesis is mismanagement of life. Imagine a diabetic who doesn't take his insulin when needed. Or doesn't eat properly. Or an alcoholic who doesn't work their own program. That is what living with MS is like. And I'm not as strong as I would like to be and I often overdo.

Because MS effects the nerves, many of life's daily activities can be more difficult during a relapse. Just some of the areas hit by MS:

  • Balance / Coordination
  • Weakness
  • Vision
  • Numbness / Tingling
  • Thought problems / Cognitive Thinking
  • Dizziness
  • Pain
Found this great summary of potential relapse outcomes at WebMD - Click Here.

But I don't agree with their slide on preventing relapses. They prioritize western medicine over lifestyle change, nutrition, etc. This girl with MS prefers to reverse this thinking. Place lifestyle first. Make all the natural changes we can toward a healthier lifestyle. Look at Chinese, Ayuervedic and other alternatives. Then go to Western medicine. Use a mix of medical styles to find a balance that works for you.

The goal is to find a lifestyle program that actually works on reducing flare-ups not just covering up the symptoms!



Part of my program includes:

  • Reduce stress/work
  • Accept consequences of reducing work
  • Write, read, explore the mind
  • Learn to chill
  • Breathing meditations
  • Yoga
  • Faith
  • Family
  • Friends
  • Nutrition
  • Physical outlets. Horses for me
  • Mental outlets. Computers and writing and design
  • and many more...
What are some of your program activities?





Monday

A New Year. Time to manage some stress!

Another new year and several intentions to follow for my multiple sclerosis. Fourteen years since my diagnosis yet I'll never forget how lost and scared I was stumbling to my doctors office looking for answers. Well, not the answer I wanted with an MS diagnosis, but better than being dead. So bring it on and let's do this.

Fourteen years later and I've learned so much. I've talked a lot about nutrition and other ways to manage ms. One area that does more for me than anything else is stress management.

How do we best manage stress?

A few of my tricks include:

  1. Take a break and recharge the battery. Even if it's just five minutes in a quiet, dark place can help unwind and recharge. No lights no sounds. No electronics. Just me, relaxing and recharging. Five minutes can mean making the afternoon or not. Try it out and see what works for you.
  2. Let go let God. We have enough static in our lives to charge an army. Now seriously, is what we are stressing about even within our control? Time to staple it shut, give it a name, and throw it away. Choose carefully what your energy is spent on because if it's used up on silly stuff we have no control over then where do we get the energy to deal with actual important stuff? Let go of it. Staple it shut. Throw it away.
  3. Ask for help. My friends told me, after I got sick, that MS taught me how to ask for help. Finally. And that's a good thing. We are not in this alone. There's a huge community out there waiting to help us. From twitter @thegirlwithms and @mspals to MS nurses and support through programs like http://onetoonems.com there are a variety of ways to find support.

These are just a few tricks. Movement and attitude are other contributing factors. Often I participate in morning free flow and chat sessions to help me deal with my MS, life and all that goes in between.


In addition to flowing and chatting, it's imperative for me to stay on top of the stress management aspect of MS. This means every few days, checking in with myself and seeing how I am really doing. Am I sleeping? Am I eating healthy? Am I full of angst or able to sit, relaxed in a chair? No two of us are the same. But we all can have similar feelings of unrest. These feelings often are a result of stressors that haven't been dealt with in appropriate manner.

WORDS CAN HURT

Wow, and let's watch those words we are using in our daily lives. Are we setting ourselves for success? Or for failure? Are we saying "I get to work for the next hour" or "I have to work for the next hour"

Every word we use, even in the minutest of details, can set us up or start to destroy us. Words like Try, Have to, Need. Let's use words such as Do, Get to and Want.

"I don't have to work today. I get to work because God gave me another day on this earth that wasn't guaranteed" (what is guaranteed anyway?). "I get to work because my clients believe in me and hired me to do their work."

Whatever it is we are doing, let's use the words that put it in the right frame of mind. If we go in negative, we come out negativ. And that is not managing stress for MS. Positivity helps mange stress.

In addition, get moving. Can't emphasize this enough. Even a scooter ride around the block will help get the blood flowing and the air moving.

There is so much we can do to help manage stress.

What are some of your top stressors and how do you Manage them?

Join the conversation!

 

 

 

 

Saturday

MS is like an iPhone Battery...and I need a recharge!

Keeping ones battery charged with MS can be as tricky as keeping an iPhone 5 going all day. Remembering to turn off location services and programs running in the background is vital to keep an iPhone chugging along. But how do we do this with MS?How do we turn off those programs running in the background. That constant chatter of energy being wasted. Do we meditate? Medicate? Or both. And when it comes to our location services, how do we unplug ourselves from those wanting our energy? Do we withdraw? Or de we become strong and set boundaries?

So much in life has changed with my MS. Every decision, every thought is focused on how it will effect my mind, body and soul. While this is a good thing in the long run sometimes one really just wants to kick down a loaded cappuccino, go for a hike, enjoy a pipe on a cold and rainy day while reading Harrison, drink a glass of wine or two with good friends, tie some flies, hop in the car and drive...just drive. A certain since of freedom is stripped when a disabling disease like MS hits. Freedom in so many ways. Once a road warrior. I am now a shuttling sissy. It started with a panic attack on the LA freeway amongst heavy traffic. No escape. Panic stricken, batteries faded fast. Eyesight diminished rapidly. Then the convulsions and dry heaving that would randomly hit never made it safe. Let cramps, not good for driving either. While these issues don't happen all the time, they've occurred enough for me not to trust my body, understanding now that my batteries could crash at anytime. Knowing this makes me feel vulnerable and vulnerability creates fear. Too much fear can strip us of our lives. To a point we can quick charge our batteries: caffeine, tobacco, provigil, sativa, sugar, etc. But how long can we quick charge before the battery won't take a charge? And when we are left stranded there is no back up battery. No way to plug into the wall and recharge. We have only one battery. We must take care of it. So how do we turn off those extra programs running? Visually I imagine the blinders on horses. Those eye guards that keep the horse looking ahead and not distracted. "Put your blinders on Caroline" and get to work. Focus on one project. Or one meditation. One walk in the rose garden. The point is to have just this one program running. And turn off all others. Blinders. This works for me, most of the time. But there are those times when it doesn't work. When I need a distraction. And another distraction. And again and again until I have six programs running and my battery bar is slipping fast. "Put those blinders on." But sometimes it just doesn't work. Then I stop everything and go lie down in a nice cool place that's not to bright. Closing my eyes and just being quiet. Recharging. Ahhhh. It takes strength to keep our batteries charged. To know what we need to do to take care of ourselves. To unplug from others when we are on low battery and turn off our location services. For me this meant learning a lot about boundary setting. Rules. My rules for my health. This can be hard on friends and family. Setting boundaries can take a lot of explanation, patience and communications. But it's essential for defining our needs to keeping us alive and void of fear. To live life on a full battery. That's my goal. To manage my software and take care of this battery before it won't hold a charge.

Let's do this. Let's keep our batteries charged. Let's rid ourselves of fears and vulnerability. It's time. It's time to take charge and recharge.

 

Sunday

GUEST BLOG: Jade learns about managing MS and more!

From our guest, Jade:

When I heard about Genzyme’s “Lights, Camera, Take Action On MS” campaign, I was immediately interested. As the friend of a caregiver for someone with multiple sclerosis, I found myself growing nervous whenever my friend would mention the disease. I assumed that because I didn’t know much about the disease that I had little to offer. Frankly, I was afraid of asking questions about it. My attempts to stick to safer topics had only left a divider between my friend and I. Without hesitation, I signed up for the Houston event, hoping to get an idea of what to say or what to do when supporting a caregiver for someone with MS.

The Girl with MS and author, Jade, meeting up in Houston!

Before the event, my nervous nature kicked in and I was almost too afraid to go into the conference. I was terrified that everyone would ostracize me. I don’t have MS and I couldn’t help but assume that it meant I didn’t belong. However, the minute the presentations started, something resonated in me. I don’t have MS, and I can’t begin to imagine what that would be like. I do suffer from chronic migraines, another neurological disease. I’ve never stopped to compare the two because I always assumed that migraines were nothing compared to other neurological diseases.


When I get a migraine, everything is a struggle. I get so sick that the blood vessels burst in my face. My speech is slurred and my eyes roll back in my head. I’m unable to make eye contact with those speaking to me and often am unresponsive when spoken to. Eventually, I lose coordination, many times fainting, which has resulted in hitting my head more times than I can count.


It wasn’t until the interactive kiosks that I realized how much I understood the disease. It was the seminar on Managing Stress that really hit home. Lifestyle expert Caroline Craven spoke of different ways to maintain a calmer, healthier lifestyle. Like those with MS, I’ve had to keep a plan B in case a migraine popped up. Stress, changes in weather, a simple fight with someone could invoke a migraine. Learning to accept help was another life lesson that I’d been forced to learn. While I’m proud of myself, it’s nice to know that the instance I start pressing on the bone above my eye my husband will grab medicine and water for me. More than anything, when Caroline talked about humans being the same as our smartphones, and needing to power down when our batteries are running low really struck a chord. I know firsthand how planning too much or trying to do more than I’m capable not only wears me down, but causes relentless migraines.

I had spent so much time worrying over what the right thing to do would be that I had never thought of the childhood lesson, “treat others how you’d like to be treated.” I had shied away from offering to help because I was afraid of infringing on self-sufficiency when in reality, all I was offering was a sample of human compassion. I had let myself feed into a stigma of the disease, too afraid to show my altruistic nature.

I found comfort in the MS panel. When MS Ambassador Leslie Cunningham talked about co-workers not understanding side effects of MS (such as being tired despite getting a full nights sleep,) I understood. After all, I’ve taken neurologist notes to previous jobs only to have them regard my illness as “little headaches.”

She mentioned her friends helping her with the injections of medication. Because I’m often unable to keep anything down, the doctor prescribed forced air injections. I know the terror Leslie must have felt, although I was fortunate enough to take my injections sporadically. The medication was forced so rapidly through a glass pinhole that it left welts and bruises on the injection sight. Even mentioning the shots caused me to hyperventilate. Like Leslie, I was unable to give myself the injections and often relied on my husband to administer the medication.

Actress Madeleine Stowe talked about how different the disease and it’s treatment was during her father’s struggle with the illness. Without modern technology, her family suffered in silence. Very little was known on the disease. Even with today’s technology, so little is known about the causes of my migraines. I’ve tried eliminating certain foods from my diet, following a strict sleep schedule, looking for ways to eliminate stress (such as meditation or exercise) and even taking daily medications to prevent them. In reality, my migraines were as sporadic regardless of any type of regimen.

I had gone into the Norris Conference Center expecting a cut and dry answer; say this but not that. Do’s and don’t’s. Instead, I realized that I had the answers all along. There is no simple answer. Each person with MS, just like any other illness, is unique. Even if the offers aren’t taken up, the fact that I offered would mean more than remaining silent. As for learning what to say, I realized it isn’t about what I ask. It’s more about accepting the answer. There doesn’t need to be a reason that someone with MS feels tired. They don’t have to look sick. I traveled halfway around the country in search of a better understanding on multiple sclerosis and instead received a life lesson on human nature. Patients with MS and their caregivers don’t need someone to be there with all the right answers. They just need someone to be there.

Caroline with Madeleine Stowe

Learn more at http://TakeActionMS.com

 

Wednesday

MS Nurses in US!

For awhile now, I've been reading about the MS nurses available in the UK and other countries, someone we can call for support and questions about multiple sclerosis. Well, we now have them here! Thanks to Genzyme corporation, maker of Aubagio, we now have access to MS nurses via their new service, "MS One to One". Click to sign up.

I learned about this program on my recent adventures in Chicago where I worked as a lifestyle expert at a seminar for Aubagio. (More on this later.)

Today I received this email about the program:

"Hi GirlwithMS,


We’re always on the lookout for helpful services that could benefit members of MyMSTeam. We recently learned about MS One to One®–a free program from Genzyme that lets you speak directly to an MS nurse during regular MS One to One call center hours–Mon—Fri 8:30 am—8:00 pm ET. In addition, there are also on-call MS nurses 24 hours a day, every day.

You can register for MS One to One even if you’re not on a Genzyme treatment.
We receive financial compensation from Genzyme to let you know about this program. It’s one way we keep MyMSTeam free while letting our members know about useful services. "
Man, I sure could have used this program 14 years ago when I was first diagnosed. Especially with all those newly diagnosed questions. But I could use it today for much needed continual support. So, I signed up.
You can even have a nurse call you and check in on you. How cool is that?!
So many features to engage in...check it out

 

 

Multiple Sclerosis in the News

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