New Year’s Resolutions, Taking Stock & Creating a Personal Health Reference Manual

Posted on January 9, 2017 by MSAA

By Stacie Prada

I used to think it was more important to just do things than to track them, but now I see the value in writing them down and acknowledging how far I’ve come over time. When the calendar year ratchets up and I think of myself as another year older, it’s a natural time to reflect and make goals. I like to review what I’ve accomplished, endured, thwarted and nurtured. When I’m feeling like I have a lot I still want to do, knowing how far I’ve come is a reality check for my expectations.

I aim for full life wellness, and I categorize my areas of wellness as health, home, relationships, finances, creativity and adventure. At all times, I try to have at least one goal for each area. I like to incorporate small activities in my life that move me toward achieving my goals, and I like doing one or two large projects at a time that leap me forward on a goal. Depending on my levels of energy and obligations, I’ll do a little or a lot on the larger projects. I try to establish and maintain balance in my life without sacrificing or ignoring another aspect of my life. My overarching goal is to keep working toward something while appreciating who, where and what I am now.

My 2017 Resolution: Take stock.

I think it’s helpful to take stock. To think about what made me happy in the past, what I love about the present, and what I would like my life to be soon or someday. Committing those thoughts and ambitions to paper or a digital file allows me to look back over time to see if I still want the same things in life now that I thought I wanted in the past.

I’m taking stock figuratively and literally. I’m pouring through all of my personal belongings, my finances, my routines and my data. I’m compiling the things I’ve learned over the years since I don’t always remember something when I encounter it again. This will focus my attention on what I have, what I could adapt to use differently, what I still want, and what I’d like to upgrade for the perfect fit.

My Personal Health Reference Manual

A big project I’d like to accomplish this year is compiling all of my health information for things I’ve experienced, tried and currently use. I aim to create and maintain a binder for all the ways I keep my health in check. It will include all the successful and unsuccessful treatments.

The idea for this project came to me after my hip started hurting. I know that my hip can hurt when I jog longer distances, and I could tell that I’d overdone it. I believe the cause is foot drop that slightly affects my gait when I jog and triggers a misalignment in my hips to compensate. In the past, I’d curbed my distances to deal with it. Sadly, it took hurting my hip twice in a month and six weeks of recovery time before it occurred to me I’d dealt with this before! I remembered that I had physical therapy exercises from seven years ago that helped heal my hip from the same problem. My hope is that using these exercises will not only allow me to heal my hip faster but prevent future injury and allow me to work back up to longer distances again.

This experience made me realize I need a personalized easy-reference health manual to manage my health with less stress. MS affects each person differently, and it requires constant adaptation to live successfully with MS. I want to reduce the amount of time spent enduring something and wracking my brain figuring out what will work for me in order to hasten effective treatment. An up to date personalized health reference manual will help.

The information I want to compile will include the following:

Conditions, Symptoms, and Injuries

Indicators, triggers and causes
Preventative measures including lifestyle choices, nutrition and activities
Treatments including prescriptions, exercises, and natural remedies
– Pros
– Cons
– When it’s effective
– When it’s not effective
– Why I choose this (or don’t)
Experiences with this issue – what’s worked or failed
Theories for why my body reacts a certain way – correlations proven and disproven

Sources of information I’ll use to compile this reference manual include:

Tracking calendars of health data and disease-modifying drugs
Notes I’ve taken at health appointments
Physical therapy treatments and exercises
My memory
My friends’ memories – often they recall things for me that I’ve forgotten
Books and internet resources that can trigger my memory for things I’ve tried but didn’t write down
Medical records from doctors

I’ve included a couple of examples at the end of this post that I’ve put together so far. It’s tailored to my health and experiences, so yours will look different. It’s also a work in progress, so I’ll keep adding and editing it as time passes and I change.

I wish I was low maintenance. Sadly, as I’ve aged I’m getting to be higher and higher maintenance. I joke that at least I’m doing the maintenance and not pushing that responsibility onto other people!

That said, if I do ever need help with my health, this will be a great tool for anyone helping me. They’ll know what I’ve already tried, what works, and what hasn’t worked. I won’t need to start from scratch with each new provider.

This is organizing my health from my information and experiences. It frees me from relying on information from the web each time I confront an issue. Sometimes the information can just be too much, and what will help me gets lost in the mass of opinions and recommendations. This is organizing around me and benefiting from the decades of experience I have being me.

Examples of pages from my Personal Health Reference Manual:

Condition: Vertigo and dizziness with nausea

Indicators, triggers and causes: crystals in ear out of place
Preventative measures: none
Treatments: Epley Maneuver to put crystals in ear back in place
Pros: Non-invasive, I can do it at home, and no side effects. Immediate results.
Cons: none
When it’s effective: When dizziness is caused by ear crystals out of place.
When it’s not effective: If dizziness is caused by something else.
Why I choose this for now: It’s an easy fix.
Experiences with this issue, what’s worked or failed. I experienced dizziness and nausea for a week before seeing my neurologist. He did the Epley maneuver to me on one side and it didn’t do anything. He did it again on the other side, and immediately my vertigo vanished! He taught me how to do the Epley maneuver at home, and I have used it a couple times over the years since. When I need a refresher, I’ve found a Youtube video to remind me.
Theories for why my body reacts a certain way, correlations proven and disproven: It’s common.

Condition: Fatigue

Indicators, triggers and causes:
– When numbness intensifies or spreads from the usual areas
– Spring and Fall when the seasons change
– Less daylight in winter
– More obligations than usual after work or on weekends
– Workdays that involve constant personal interaction without breaks
– Relationship stress
– Big events – both happy and sad!
– Long periods of added stress
Preventative measures: Track fatigue level daily and adjust activities and treatments based on fatigue level.
Treatments:
1. Coffee/caffeine:
  Pros: It lessens light or moderate fatigue effectively and temporarily, it tastes good, it’s accessible, I don’t need a prescription, fewer side effects than other methods
  Cons: It can adversely affect sleep and intestinal health. Dosage can only go up to a certain level before getting jittery and anxious. I felt better physically (except for fatigue) when I went without coffee for a month.
  When it’s effective: For minimal to moderate fatigue.
  When it’s not effective: When fatigue is extreme.
  Why I choose this for now: I like it and it fits within my lifestyle. While I need to work in an office setting, it’s helped me maintain.
  Experience: Green tea inflames my throat. Caffeine tablets were harsh on my stomach. I may as well drink coffee and enjoy it.
2. Rest:
  Pros: It’s helpful
  Cons: It’s isolating, it can conflict with life obligations.
  When it’s effective: At least some rest daily, but more intensive rest needed when fatigue is heavy or extreme.
3. Modafinil (Provigil):
  Pros: It’s effective
  Cons: It requires a prescription, and my insurance doesn’t cover it. Out of pocket cost was $120 for six pills in 2012. (Could check on this periodically to see if it’s changed.)
  When it’s effective: It can help me get through periods of time when I’m not able to limit my obligations to get more rest. It’s a good temporary option if I can get an Rx.
4. Exercise:
  Pros: Moderate exercise helps reduce fatigue. It’s good for weight management. It helps keep me mobile and able to experience lots of activities.
  Cons: Hard to always gauge how much exercise is enough and how much is too much. Too much extreme exercise over months can tax my body and lead to more fatigue.
  When it’s effective: When I’m not injured or severely fatigued.
5. Organization & Prioritization:
  Pros: It lessens stress and frees up mental and physical capacity for reducing stress.
  Cons: It takes a lot of thought and practice to create organization methods.
  When it’s effective: Pretty much always.
6. Blue light
  Pros: Non-invasive
  Cons: Daily time investment required, and the results aren’t immediate. Hard to gauge if it’s helping or not. It was an expensive investment without any assurance it would help.
  When it’s effective: Fall and winter when the days are short where I live.
7. Limit activities
  Pros: Helps free up time for rest and sleep.
  Cons: It can get depressing and make me feel like I’m being punished.
  When it’s effective: When I’m still able to do things that satisfy me emotionally.
Experiences with this issue, what’s worked or failed. I used a blue light in 2010 through 2012. I think it helped, and I should pull it out and try it again this winter. I don’t need it in the summer and I forgot I had it. Exercise, rest, coffee, and good nutrition work for daily maintenance. Modafinil works well when I need to keep going for a week or so beyond what my body would prefer. Rest is required to recover from overdoing it.
Theories for why my body reacts a certain way, correlations proven and disproven: Fatigue is the #1 symptom common for people with MS. With so much damaged nerve insulation (myelin), it takes more energy to do common tasks than for someone with healthy myelin. My neurologist explained that the energy it takes a healthy person to walk a mile may be an equivalent of a mile and a half or two miles for someone with MS.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38. Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

The Ponds of Socialization

Posted on December 19, 2016 by MSAA

By Lauren Kovacs

Being with family and relationships are like skating on thin ice. Caution and preparation for these are something we need to do, especially near the stress of the holidays. Using some information can help us skate safely onto the pond of socialization. Having MS requires more of everything.

Like anything, we cannot “wing-it.” We cannot fly by the seat of our pants. The biggest thing to remember is to stay calm. Know your limits. Our speed is slow or “No.”

This is where knowing where the thin spots are will help. I like to know people’s personalities ahead of time, if I can. Going to family events or parties may take some personality planning. I like to know who respects the limits of my MS. Know your audience, so to speak.

Know the thin spots and stay clear. Know what situations and who is safe. This will reduce stress. Pick events that keep stress and fatigue to a minimum.

Some people you may have to physically stay away from. Other situations or people you may have to emotionally stay away from. MS is tough enough without someone commenting how his or her sister-in-law’s cousin’s friend ate something and is fine.

Attending work related parties is part of PR for my husband’s job. I always use my chair. It cuts down on fatigue so, I can stay a bit longer. I am social, but in the evenings I am exhausted and the MS “misbehaves” more. My speech is garbled so, I mostly listen. Sounding drunk at a work party is not wise. I try and eat before I go too.

Eating is very difficult for me. I can more easily refuse food, if I am not famished too. For me, it makes the gluten gods happy. I can be polite and have one or two bite size hors d’oeuvres. I don’t like to wear food in public so, I stay away from that thin ice.

If you are going to an unfamiliar place, take note of bathroom locations the minute you get there. Wear easy off clothes. When I gotta go, I gotta go now. I find thigh-high tights are easier than regular tights or hose. They are a bit drafty, but it is better than dealing with hose when now means now.

Know your limits. Don’t over party because the recovery time is not worth it. Try to stick to any diet restrictions. I mostly eat gluten free, but I allow a cookie or something. Balance for me is key. With a bit a planning, I can have that delicious gluten filled cupcake and be social. Be mindful of your limits and needs. A straw is a must and I carry an extra one in my purse. Most of all, try to enjoy the season.

Feeling Connected and Nurtured When I’m Alone on Christmas

Posted on December 16, 2016 by MSAA

By Stacie Prada

Families seem to be expanding and shrinking simultaneously these days. With second and third marriages, births, in-laws and kids by marriage, the number of people I care about and am related to keeps growing. At the same time, divorce, death, living miles away and conflicting schedules reduce the number of people I spend time with in-person during the holidays.

This year I vacationed over Thanksgiving week, and I enjoyed a lot of time with family and friends while having a lot of fun. Now I’m back at home and while I’ll have plenty of parties to attend this month, I anticipate spending Christmas Day alone. Living far away from my closest family members makes it impossible for me to spend all holidays with them. I enjoy spending time with others, and I enjoy my time alone. Still, there’s something about the holidays that is tricky. If I don’t plan ahead, it can be easy to fall prey to self-pity.

In my life, I’ve experienced a couple decades of small family gatherings and another couple decades of large and wonderfully chaotic extended family holiday events. More recently I’ve experienced celebrating holidays solo, and it’s coerced me to think hard about what will allow me to enjoy the day alone. For me, I feel nurtured if I can include some time connecting with people important to me, some time outside reflecting and appreciating all of the good things in my life, and some time indulging with good food and drink.

If I’m going to be alone on a meaningful day, I try to connect with others in one or more of the following ways:

Try to set up a time to Facetime or phone people important to you. If schedules are complicated, email or text a holiday greeting.
Do things to connect with people throughout the month or year, not just on or near the holiday itself.
See if friends will invite you to join them. You can be somewhat subtle by asking what they’re doing. They’ll ask what you’re doing and often invite you to join them, but make sure before asking that it’s someone with whom you would like to spend the day.
Ask a neighbor if they’ll be around. You can get together for an hour for coffee, tea or wine. It doesn’t need to be big, just something to break up the day and include some interpersonal connection.
Volunteer at a local charity. You can help prepare or serve a meal for others. You can also just be a smiling greeter if you’re not able or up to performing tasks. Listen, share, learn and connect.
Tell people that you’ll be alone and would appreciate a phone call. Often people assume I have it all together and will be busy. They’re happy to connect when they know it’ll be appreciated and not a bother.
I’ve never found a relationship that does better from no interaction. Give people a chance, and don’t assume the worst. Appropriately credit responsibility for behavior to the person doing it. Feel good about yourself. Make sure you feel good about your behavior regardless of the actions of others.
Consider people you know that may also be spending the day alone. Make plans to do something together for a portion of the day.
Post something to Facebook. One Thanksgiving I enjoyed watching the sunrise on the beach while drinking my coffee. I took a video of the sunrise and shared it with friends while expressing my gratitude for them in my life.

Some of the ways I’ll nurture myself include the following:

Do something special for yourself to commemorate the occasion. Do something indulgent for you, or engage in some activity you love. Sit on the beach, go for a walk, or stop at a coffee shop that’s open. What you love may be totally different than anything I would ever consider.
Find a restaurant nearby that’s open, and go alone if you want. At the very least you’ll talk to people that have to work instead of spending time with their own family. It’s usually a very friendly time. Plan ahead since a lot of places are closed on holidays.
Visit and leave flowers at someone’s final resting place. Honor the impact that person had on your life.
Make and enjoy a meal you love if you enjoy cooking.
Decorate, even if it’s just a holiday themed bouquet or plant. Differentiate the day and your surroundings from every other season or day of the year.
Get outside. Even a rainy, cloudy day outside can feel better than staying inside or under cover.
Think about what you could do so that you’ll feel loved and appreciated even if it’s just you who loves you.
Make sure you find a way to enjoy the time instead of just trying to get through it.

Connecting with people important to me takes some initiative. Lots of them have a busy day ahead, so it’s good to plan in advance to make sure my emotional needs met. Overall, I’ll be happy if I remember to genuinely look at the bright side, do something I love, connect with everyone I care about either during the month or on the day, and find a way to be generous. And if nothing else works, I’ll distract myself and remember tomorrow is another day.

Canceled Plans… Again

Posted on December 14, 2016 by MSAA

By Penelope Conway

Life was good before multiple sclerosis. I had great friends. We would spend time together on the weekends going out to eat or bowling. In the summer we would plan hiking trips through the mountains and in the winter we would go skiing. When MS became a part of the picture, those nights out and trips dwindled. Eventually I wasn’t even being invited out anymore, they would just go without me. I wanted to scream at the top of my lungs, “I have MS, I didn’t die.”

Amazingly, you discover who your real friends are once MS becomes a part of your life. People will either stand by you and help hold you up when you are at your weakest or they will walk away. If they choose to walk away, let them. You don’t need anyone in your life pulling you down. MS is already doing a pretty good job of that already.

I have days when I find myself dealing with physical symptoms like tremors, pain, weakness, numbness, vision problems, and muscle spasms. Enough to cause me difficulties but not enough to stop me from continuing on in my day. Then there are times when everything become so intense, when the pain and weakness grows so deep, that it bleeds over into every part of my life as it tries to get its grubby little hands on things like my thoughts and emotions.

One thing I have learned over time is that MS is not a disease you can keep to yourself. We try though… don’t we?! I know I do. I try to keep the effects of MS neatly contained in its own little space hoping to shield myself and those around me from its impending destruction, but it seems the more I try to contain it, the more it spills out. It’s kind of like trying to rake the leaves in my yard into a pile on a windy day. What a futile task. No matter how hard I try, they just won’t stay where I put them.

Regardless of what anyone thinks, we need people, especially when living with a chronic illness and even more so at this time of year. It’s a time when the weather is unforgiving, parties don’t cooperate with our MS limitations, and depression has this sneaky little way of creeping into our lives.

It’s amazing the things we have to consider when receiving an invitation. Is the location accessible? Will the wheels on my walker or wheelchair leave wintry slush tracks on someone’s nice carpet? Will my body play nice? Will I be able to manage the crowds and traffic? Will my finances be stretched too thin, above and beyond any past due medical bills? Will fatigue hit hard keeping me from being a part of the fun? Will people understand my decision to go home early or that I had to cancel plans last minute? Will they even invite me in the first place?

Real friends get it, though. I was once told, “You can count your true friends on one hand and sometimes on one finger.” How true is that?

I know it’s not always easy to do, but be determined to fill the days ahead with the warmth of a few close friends. It really does brighten the gloomy winter days. If you can’t get out, invite someone over for a special movie night complete with pizza and popcorn or even Skype with someone you haven’t seen in a while. Sometimes something as simple as a text message back and forth with someone you haven’t heard from in a long time can give you a smile that lasts for days.

From one friend to another: do your best to find joy in the wintry cold mix and always remember just how absolutely, positively, incredibly amazing you are. I sure happen to think so.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

It’s OK to Be a Little “Selfish”

Posted on December 9, 2016 by MSAA

By Lisa Scroggins

People who have MS are like snowflakes: they have the same diagnosis, but each one will have a unique portfolio of signs and symptoms. It’s really a bizarre feature of MS, that despite similarities, the way symptoms appear can be drastically different. Many of the symptoms are invisible to others, yet have a profound effect on the person. Even so, most folks with MS understand pretty well the weird sensations and feelings of discomfiture that each one of us experiences.

Family members operate in a similar way, in that they all have their own relationship with each of the others. Some are closer than others, and some have little to talk about. While as a person with MS, you don’t get to choose your symptoms, you can choose the people with whom you surround yourself. Most of us know that drama and conflict are burdens on our nervous systems which we can ill afford. As demyelination strips us of some important “insulation,” we have to compensate for the less-than-ideal environment that we are left with. Emotions as well as signs and symptoms all emanate from our brains, and as MS uses a lot of our reserve, we have to rethink the best use of what we’ve got. This means that on a difficult day, when symptoms are aggravating, it’s not the ideal time to drag up an old argument.

Many of us cling to notions of what the “perfect” family looks like and even subconsciously try to recreate that at special times. It’s prudent to bear in mind that emotions are likely to be running high, just because of the sentimental character of beloved holidays. Combining that with any worsening of old symptoms or the entry of new ones has explosive potential. It’s very important to protect yourself from stormy interactions if at all possible!

What I’m really trying to say, is that if you have MS, you really must be selfish at times (like the holidays) of high stress. I use the word “selfish,” but truthfully, your selfishness will pay off for the people who are closest to you. If you’re able to refuse to engage in ancient dramas, to get upset about inane things like “who should do X,” and “why don’t you do Y?”, you will have gone a long way toward preserving the quality of this time for you, and for those closest to you. I wish you all a serene, sometimes exciting, and happy time, whichever holiday you are celebrating.

No more stress? Is that even possible?

Posted on November 28, 2016 by MSAA

By Penelope Conway

Stress is not a good combination with Multiple Sclerosis. I hear all the time how stress needs to be limited to keep from triggering an exacerbation, but how do you do that in a world full of “I want it now” people and “it can’t wait” situations?

There are hundreds of lists on the internet explaining what you can do to avoid stress, but listing things out and doing them are two different things. Then if you add MS into the mix of things, it seems an impossibility.

Maybe your day starts something like this…

You wake up in the morning to a busy day planned. You didn’t hear the alarm clock earlier so you are already being rushed to get your day started. It’s early, you’re exhausted and your body isn’t cooperating. You take a shower, and even though you did every cool down technique you know, your body is simply too weak to keep going at the fast pace you have set for yourself.

You take a moment to rest then push on to get dressed so you can get out the door to make up for missed time. All the while, playing through your head is a rundown of everything you must do today. You have lists created, app alarms set on your phone to remind you of your time constraints and post-it notes scattered everywhere.

You do your best to hold back your frustrations but before you have even left the house to begin the day, you are feeling overwhelmed and defeated. Somehow MS just doesn’t fit into a busy day and somehow you always seem to forget that tiny little fact.

The unexpected happens much more often now that MS is a part of your world. You get tired faster, weak muscles limit your functionality, your vision messes with your ability to complete even the simplest of tasks, dizziness and vertigo trip you up, and your thinking gets all muddled in the process. It’s hard planning for the MS unexpected. I always say a life with multiple sclerosis is like a box of chocolates…you never know what you’re gonna get. (Thanks Forest Gump for the inspiration.)

I have discovered that stress makes you extremely tired and can cause MS to worsen, but it’s stressful to avoid stress so you end up stressed out anyway. It’s really not easy trying to avoid stress. Ugh…just thinking about it is stressing me out.

So how do you fit a life with MS into a stress free list found on the internet? Well, for me that’s an impossibility. It seems MS doesn’t like lists or plans. It kind of has a mind of its own and doesn’t seem to want me to know ahead of time what it has in store for me throughout the day.

When life become overwhelming, and many times even before it gets to that point, I find that I need to take a moment to step back from all my commitments, work, and obligations. I need to take a moment to pause and re-examine everything. Literally.

Is there anything I could change or remove from my day that would help ease the load? Do I really need to vacuum the house today, tomorrow or even next week? If I wait and take a shower before I go to bed rather than when I get up in the morning, will it help? Can I recruit someone to pick up a few things from the store for me so I don’t have to go? Will the world fall apart if the laundry isn’t finished?

You are more important than the chaos that surrounds you and way more important than the stress that it can cause. Work on changing your workload bit by bit, little by little, moment by moment. You won’t be able to quit everything (which I happen to think would be nice to do at times) and you won’t be able to stop the world from spinning out of control, but you can make a positive change in your own life.

Take time to slowly work your way out of those over-commitments by finding others willing to step in and help. You may need to juggle schedules around and say no to people you normally wouldn’t say no to, but in order to simplify your life and relieve the pressures weighting you down, you have to do it. It’s not an option.

Do what you can today and leave the rest for another day. Take one step closer to living stress free, and before you know it you will be enjoying your life….even with Multiple Sclerosis.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (http://positivelivingwithms.com/) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

Make Life Easier To Get More Done and Lessen Stress

Posted on November 9, 2016 by MSAA

By Stacie Prada

Everyone I know feels overwhelmed at times. They forget things, and they accomplish less than they’d like sometimes. I’m comforted when I have an organized life and am not worried that I’m forgetting something. I like to create systems that support me in being organized, simplify my life, and make life easier so that I can exert energy on the good stuff.

To reduce my stress level, frequently I put effort into reducing the number of decisions I need to make and the quantity of things I need to remember. If I don’t have a method for remembering it, I’ll get in a thought loop reminding myself to do it later. After a while, it can be crazy. It’s wasted energy that could be put to better use.

Streamlining things I do repeatedly makes them easier, less stressful, and more likely to get done. Making decisions takes energy. The more decisions I make in a day, the more energy it takes to get through the day. Decision fatigue is real, and when MS fatigue already affects a person’s health it can really lower their quality of life. Given that I want to be productive and maximize what I can accomplish, reducing the number or decisions I need to consider and decide repeatedly frees up energy and time for other things.

Simple ways I reduce the number of decisions daily life requires and ways I make decisions when I’m not in a time crunch are as follows:

Lay out my clothes the night before so that I don’t need to figure it out in the morning when I have a time limit for getting ready. I include my underwear and socks so everything is ready for me to get dressed and there are NO decisions to be made. My shoes and coat are ready by the front door, and so are my keys.
Create a packing list for things I do or places I go repeatedly. I refer to lists frequently before I go on a bike ride, take a long walk or hike, or go to the pool.
When making meals, make extra. Leftovers are easily one of the most time saving and decision reducing methods for reducing stress. Think about how often you ask yourself what to make for dinner or your next meal.
Automate bill payment when possible. For things like electrical or phone bills, set up bill pay so that they automatically get paid with a credit card. I can pay multiple bills in one sitting when I pay my credit card bill. I also don’t need to worry about forgetting to make a payment.

Lots of times it’s not about being unable to do something I want done, it’s about not remembering to do it. It’s easy to forget things if I’m out and about or get distracted at home. Creating memory triggers helps. Check out these easy ways to stay focused:

Make reusable flashcards. I use 3” x 5” index cards for recurring tasks or habits I want to create. When I remember I need to do a recurring task and can’t do it immediately, I’ll pull that card out or make a new one. I’ll place it somewhere I look frequently. For me it’s the kitchen counter or dining table. It’s a time saver and memory jogger. These reminders are especially great when you share your home. Family members will realize that laundry needs to be done and may help without you asking. They’ll also appreciate that you’re doing things that contribute to the home when otherwise they may not have noticed.
Set a timer: When cooking or doing things where I may not hear the buzzer, I’ll set a kitchen timer or phone alarm. This is great for things like laundry, cooking that requires pre-heating, or pulling something off the stove. It’s not a failure to need to use these tools. I know people with perfect cognition that get distracted and nearly burn the house down by putting something on the stove and forgetting. The timer is a necessity for reminding me I turned on the oven or put a load of laundry in the wash. I don’t necessarily need to have a reminder card for that (even though it doesn’t hurt), but there are instances when the timer goes off and it takes me a moment to remember what it’s for.
Leave myself a note: When needing to do something later, I’ll put a note in a hot spot I see frequently. It may be a post=it left in the car, at home or on my computer monitor at work.
Put appointments and reminders on the calendar in a mobile phone with an alert.
Create lists for what I need to bring for things I do repeatedly. I have lists for going for a walk, bike ride, leaving town, and getting back from out of town. I also have a pretty standard list of grocery items that I frequently eat. The point is to ease up on the number of times I need to figure out the same thing.

Often the difference between feeling overwhelmed and feeling like things are doable is one task or obligation. If you’re stressed out and having a hard time getting things done, be brutal. Remove things that don’t absolutely need to be done the way you’re used to doing them or would prefer to have them done. What’s the minimum necessary to get it done, and when is the deadline? What can be delayed until tomorrow, next week, or next month? What doesn’t need to be done by you or at all?

Get over the feeling that it’s embarrassing or not okay that you need reminders. I once had a family member laugh at me because she saw my reminder on the counter to “pack” for a trip. She thought it was absurd that I was reminding myself to do something that was obvious. Yes, it was needed and obvious, but my simple reminder kept me focused and less stressed.

I’ve learned that a single tracking or organization tool isn’t going to work for everything I want to remember or do. Just like Facebook, Instagram, Pinterest, email and texting have different strengths and times where they’re appropriate, organization is a compilation of lots of little methods. Think about what works and why it works for you. Then build on that. Where do you need to remember things and where do you frequently look? Make a system that works for you. It’ll be unique to you, your life, and your priorities.

Wellness and MS

Posted on October 26, 2016 by MSAA

By Lisa Scroggins

Before I had to start using a walker to get around, I was still working full time, plus I had an hour one-way commute to work. Honestly, I worked far more than the 40 hours a week that counts as full time. But in those days, I used to joke that my healthcare was an additional part time job, in itself. Between going to the clinic every thirty days for an infusion, and handling refills for other medications, as well as the other “normal” things that everyone has to do (teeth cleaning, physicals, mammograms, etc.), it took up too much time, in my opinion.

I had it so easy! Now, it really is a kind of job. After I stopped working, almost three years ago, I told myself that I would dedicate myself to “rehab.” With a lot of other life details that intervened, I didn’t do the best job of rehabbing on my own. There was a little bit of denial; I believe that deep down, I thought maybe without the stress of my job and commute, I would just naturally “get better.” Probably, this won’t be a shock to anyone, but that’s not what happens! It took me awhile to come to terms with my new and unwelcome status. Much of the turmoil surrounding my leaving the workforce, and the other big changes that took place in our lives has calmed and life feels a little bit stable now. And so, my new job/work of rehab has begun in earnest.

I have come to embrace a sort of DIY wellness attitude, as I no longer enjoy a “yes, but” condition, as in “Yes, I have this disease called MS, BUT I can still work, and it is invisible to most people.” It’s plain to see that I’m disabled. After I left my job, I spent a good year and a half traveling to an MS specialty clinic that’s within a day’s drive for me, hoping that maybe there was a “holy grail” that the ordinary neurologist wasn’t hip to. There isn’t. I did learn a lot that I hadn’t known before, and I also learned a hard lesson: not all neurologists, even the specialists, have a decent bedside manner. I had a gut reaction to the specialist the very first time I saw her, but told myself that as long as she might be able to help me, I shouldn’t worry about the touchy-feely part. I know better, and I’m not sure why I didn’t trust my gut, something I always told my kids to do. I’ve stopped going to that doctor, since her demeanor was so objectionable to me. While I may return to that clinic, it will be to a different neurologist. I’ve empowered myself to only seek out assistance from doctors who seem to care about me, something paramount for mental wellness.

Nowadays, I spend a lot of time reading and researching everything from up-and-coming medications to figuring out new and different ways to exercise. One new issue for me is pain. Except for the occasional flashpoint of trigeminal neuralgia, pain wasn’t an issue for me. In retrospect, this new symptom first started to occur about a year and a half before I stopped working, and if I hadn’t made a note of it, I wouldn’t have realized how it sneaked up on me. What’s worse is that it has continued to develop and progress. In some online MS groups, a lot of people with MS do have pain. Lots of them take powerful drugs to try to control it. As bad as my back hurts at times, I do not want to use a pain-killer, and would prefer not to add any more drugs at all. I have learned that when the pain seems especially bad, what helps me the most is to apply a cold pack. I tried heating pads, and those sticky thermal pads that you can buy in stores. My husband bought a pad that can be used for warmth or cold. On a whim, we tried putting it in the freezer then inserting it in its carrier and wearing it so that it covers my shoulders and upper back. For me, it’s far more effective than any of the heat methods I tried. I’ve gotten so smart that I no longer wait until the pain is excruciating, but actually try to ward it off. I know that my sarcastic attitude doesn’t always help me, but really, why on earth do I beat myself up for not knowing? What matters is that I found some relief. I try to be open to new ways, even if I don’t believe they will help. There are other approaches to managing pain, too. I take a lot more NSAIDS than I used to (usually Aleve or ibuprofen) but have deemed it necessary. I even tried some homeopathic stuff, but didn’t notice any affect at all. What does seem to help is sticking to a schedule of exercise. I know that it’s vital, but it remains a challenge to structure my day around that. The effort to manage my time so that exercise is a priority, yet doesn’t prevent me from doing other things remains a struggle. For example, it’s important to do food preparation, which involves deciding what to eat, making the shopping lists, planning the menus, and actually preparing the food, all of which used to be easy. I’m still learning how to structure my days so I have built-in rest times between tasks, and preventing pain and fatigue that destroy the rest of the day.

The other thing that really is phenomenal is the smorgasbord of information that’s available to everyone, including people with MS: the internet. It’s friend and foe both, and if you’ve dipped your toe into it at all, it’s easy to get overwhelmed. I have found a few resources that I turn to again and again, because I find them to be chock-full of information. My favorite online tool has been “MS News and Views,” hosted by a patient with MS. I am not a fan of watching videos on my smart phone or any other way when it comes to MS; I just prefer to read rather than watch. But what I like about this resource is:

It’s run by a fellow patient and,
Information is available in many ways: MSVN channel on YouTube, with recordings of presentations, E-newsletter, Blog-Talk Radio series archive, a Webinar Series, and much more. The website is: www.msviews.org. The YouTube channel is called MSViewsandNews Learning Channel. There are presentations about exercise adaptations, nutrition, MRI’s, and medication. I have learned to love watching videos and this website is the reason! Some of the videos are almost as good as a visit to a doctor, in terms of the information and education made available.

Wellness in the context of a chronic, life-long disease may seem oxymoronic, but it’s not. I challenge you to take back some control and avail yourselves of a plethora of self-management.

Wellness Covers A Wide Field

Posted on October 21, 2016 by MSAA

By Lauren Kovacs

Staying well encompasses physical and mental skills. Everyone has different needs and tricks. The key is to find what works for you. Maybe you choke up on the bat or spit in your glove.

For me, gluten reduction helps me stay ‘well-ish’. Eliminating it completely caused massive weight loss. I figured it out when my beloved donuts caused me to be super floppy. It turns out too much sugar contributed to the wet noodle effect too.

I did therapeutic horseback riding for years. It improved my gait, when I had one. After years, I had to give it up. I was wobbly and I was seriously freaking my Dad out who was my official side-walker.

Turmeric seems to help me be able to walk some. I use a walker in the house to keep my circulation going. Yoga helps, if you have energy. I like seated Yoga or I find exercises geared to seniors. I try to be active while reducing falls by being seated.

I schedule my day of any activity between 9-12. Not ideal, but I am worthless after lunch. I am in a different body, after lunch. I take half my “awake” medicine, nap and take the other half to get me through homework time with the kids. Combating fatigue is like walking a tight rope. One bobble one-way or the other will make you crash.

Be patient with yourself. We are standing in front of a pitching machine. It takes a lot of practice and there is a learning curve. You have to be ready to take a hit too. Strategy is important. Sometime you can smack the pitch and others you swing and miss.

Just like selecting your pitches, select how you respond to want MS throws at you. Days where you strike out miserably are going to happen. Maybe the pitch hits you and you have a bruise, but you advance to first base. You now have knowledge about avoiding that situation again. In my case, I learn to avoid a fall that way again.

Learn to treat yourself. Cheer yourself on out load. Positive affirming words to yourself out load can have a big impact. Just like a cheer squad helps to push a team forward, cheer for team YOU.

My Wellness Litmus Test & Sphere of Wellbeing

Posted on October 14, 2016 by MSAA

By Stacie Prada

If I distill my health down to a litmus test to objectively judge my level of wellness, it boils down to this: How am I naturally behaving right now?

How I naturally behave is a reflection of the thoughts in my head and how I perceive the world. Am I struggling with something, or am I content? Am I interacting with other people positively without thinking, or is it taking extra effort to behave in a socially acceptable manner? Do I respond to inconveniences with frustration or compassion?

When our physical health is compromised and we’re sick, injured or chronically ill, it’s easy to be grumpy. After a car accident in high school, I lived with a constant headache for five years before having jaw surgery to correct TMJ misalignment. During those years, constant physical pain became normal. There were likely many moments I was grumpy. But living with pain didn’t preclude the wonderful times I experienced, nor did it override my sense of wellness. It was a part of the experience and something I worked on trying to improve. MS is like that for me. It’s an inconvenience and something I factor in to my daily decisions and life choices. With years of monitoring my health and adapting, MS has become only a part of my experience and not a constant dominating fear.

That said, MS does affect how I feel and can make me feel a little unwell at times. It doesn’t mean I’m not well. It may just mean I need an adjustment, a slight course correction to stay on the wellness path. Converting the realization that I’m not as well as I want to be can be done by thinking about the areas of my life that contribute to my wellbeing.

When I list them all, the list gets long, and I can overthink it pretty quickly. Thankfully ruminating is an enjoyable hobby for me. I loved reviewing wellness wheel graphics online and seeing how other people explain factors for health.

There are a lot of variations of the wheel of wellness and they can be used as a starting point, but I think it’s important to think about what you care about, not what you think you should care about.

I want to learn, contribute, be active, have meaningful relationships, feel good and look good. I want to be financially stable, have a tidy home and travel. For me being well means I can do at least a little of each without neglecting other aspects of my life that are important to me.

What if someday never comes? And what if it does? For me wellbeing is enjoying life today while planning for a future. The perfect day for me would include rest, activity, relationships, learning, contributing, creativity and celebration.

Look inside yourself, look outside yourself, and think about the mark you want to leave. If I wanted to score wellness for myself, it would be a complex equation with many, many variables. In my attempt to create an equation I visualized a sphere that magnifies based on my areas of health. When I focus on things I can control, say, do or believe, it bolsters my sense of wellbeing. It distracts me from things I can’t control, and it genuinely boosts my mood and love of life.

What would you add for your own sphere of wellbeing?

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