Saturday, February 4, 2017

Invisible MS Symptoms and How They Affect Relationships Even When They’re Subtle.

Being diagnosed with and living with a chronic incurable condition can test and change every relationship a person holds dear. Invisible symptoms are especially tricky. I know after my Multiple Sclerosis diagnosis I didn’t want to burden others with my problems. Just because I had a life altering condition, I didn’t think it should affect everyone else.

One of the adult life lessons I’ve learned is that people who care about us WANT to help. Withholding our struggles increases stress on our part and creates a feeling of being pushed away on theirs. They hate feeling helpless. We do too, but we have more information at any point than they do.  Think about when you’re driving a car in inclement weather compared to when someone else is driving and you’re in the passenger seat.  When you’re driving, you know whether you have control of the vehicle or not. You know how well the brakes work, how alert you are, and how long it will take you to stop if something happens. A passenger has little information other than what they see and feel, and they have to rely on their trust in you. Having MS is like being the driver, and our friends are the passengers when it involves our health.

While their intentions to try to fix our problems, make us feel better, or help in any way they can may sometimes feel pushy and cause conflict, working through the unknown and developing a new relationship dynamic is well worth the effort. All of the relationships I still have today are intensely richer for the awkward conversations we’ve stuck with and the commitment we’ve made to interacting differently than we did before I was diagnosed.

Invisible symptoms like fatigue, pain, numbness, balance problems, bladder and bowel problems, cognitive issues and heat sensitivity can affect how we feel even when we think we’ve got it all under control. There are times when I think I’m doing fine or faking it well, and dear friends will say they notice I’m not feeling well. It’s especially impressive how well people know us when symptoms are subtle and we may not even realize we don’t feel as well as usual. For me I notice that my patience lessens and I have a tendency to feel more pressure from people by what they say.

I asked two dear friends what they had to say on this topic, and one said that what hurts her feelings is when I hold back and distance myself. I can justify it by saying I don’t want to worry her or bother her, but it’s more likely that I don’t feel like admitting I’m having an issue or that I’m not up for hearing advice in that moment. One skill I’ve tried to beef up is to recognize when I’m feeling pressure or don’t want to talk about something anymore and say so. I’ve noticed it’s harder to do this the longer I wait to say something, And while saying I’m not up for discussing something in that moment may hurt their feelings, I think it’s better than continuing to suffer silently. The other skill I’m working on is to tell them that while I’m not up for it in that moment that I do appreciate their concern and perspective. I also want to start saying that I think I can continue the conversation another time.

Being self-aware, communicating consciously and not reactively, and considering other people’s perspectives has made living and loving well with MS possible for me. It’s definitely improved my relationships, reduced my stress level and contributed to a life I love.

Monday, January 30, 2017

Aiming For A Bittersweet Life: The Liberation of Expecting To Become Disabled

Most health advice and guidance teach us what to do to avoid illness. I spent many years following all the advice and making my health a priority with diet and exercise. Once I was diagnosed with Multiple Sclerosis, my view of wellness expanded beyond just my physique, vitals and medical test results.  It now includes adventure, purpose, giving, gratitude, finances, outlook and relationships as well as physical fitness.

My outlook on my future has evolved to believing disability is inevitable for me if I don’t die young. There’s liberation in knowing disability awaits. While I continue to do things that improve my health, I’m embracing illness and aging. Assuming my body will decline someday has been freeing. I don’t live in fear. It’s like my leash has come off and I’m eager to do everything that requires physical mobility. I want to prioritize experiences and activities that depend on my body’s abilities and do them sooner than later.

I think of it as aiming for a bittersweet life to be positive. Living a positive life includes experiencing grief and anger and frustration. It's finding the beauty in all of those experiences that makes for a positive life. Sometimes when I'm feeling low the best thing to do is to watch a sad movie or listen to a song that breaks my heart because then I know I’m living all of life and not just the pleasant parts.

It’s not a negative perspective. It’s embracing the future as it could be given MS has no cure and the medications available today merely slow disease progression. Thinking positively doesn’t mean only hoping for the best outcome. It means assuming things will fall apart periodically and it’ll be okay. I’ll adapt. I’ll continue to find purpose and experience joy. All lives will end. A bittersweet life satisfies the wonderful and the heart wrenching, and I want to experience it all.

Part of embracing a future with an eroding body and disability is cultivating the skill of living well with loss. Get really good at it. I try not to sidestep it or just get through it but to genuinely embrace loss. My goal is to have had such a satisfying life with fulfilling relationships that there will be grief, but there will also be a sense of satisfaction that I didn’t hold back or miss out.

Positivity is not being happy; it's finding grace in that ugly terrible.  When I feel fear, I analyze it to figure out what it is I'm afraid of. My perspective is not just looking at the bright side of things. It's accepting the hard, challenging, frustrating and miserable as having their own form of beauty. 

Somewhat similar to physical agility where people are able to move and fall so that they don’t injure themselves and can get back up, I aim for emotional agility where I’m able to feel heartbreak and fear without it injuring or paralyzing me. The skill I spend the most time cultivating is experiencing pain, fear and discomfort without lashing out.

Since the day I was diagnosed with MS in 2008, I’ve become liberated and made myself and my goals priorities. Cultivating the skills to live through and embrace loss, find beauty in everything, and aim for the bittersweet has given me a positive perspective that works for me.

Friday, January 13, 2017

Wearing the Pretty Shoes While I Can and Experiencing MS Milestones

I saw a t-shirt once that said, “There will come a day when I cannot do this. Today is not that day.”

It holds true for everyone, but it’s especially poignant when living with a chronic debilitating disease. Disability may be inevitable for me. But it may not.  I can stave off these MS milestones as much as possible, but knowing that I may not be able to do things in the future motivates me to do what I can now.

I hit a frustrating MS milestone this week. I wore the absolutely most beautiful high-heeled shoes I’ve ever owned to a formal event. In hindsight I can see that after three hours of socializing and dancing that my feet cramped, my nerves quit firing correctly, and my MS symptoms took over. Usually the impacts are subtler. This time there was no mistake that MS had caused my ankles to buckle repeatedly. I could tell that my feet weren’t staying put or moving on command any longer. While standing still, one foot started to turn under against my will. I paused, tried to regroup, and took a step.  My right ankle buckled. I took the arm of a friend who supported me. I paused again to regroup and thought I could will my feet to cooperate. I took another step, and my left ankle buckled under me. Again grabbing my friend’s arm, I steadied myself and tried to regain composure. After a moment, I moved forward and both of my feet buckled. Then I realized this was MS. This was my MS, and no amount of will would override my feet not functioning.

Holding my friend’s arm and with her other arm around me, I steadied enough and realized I needed to remove my shoes. My ability to wear them that night was done.  I removed my shoes and walked barefoot to keep up with my friends. It took walking a distance of ten feet or so before I felt my feet would be able to cooperate again. Fortunately, my ankles weren’t giving way anymore. It was another hundred feet before my feet stopped spasming.

Practically speaking I think this tells me that I can wear high heels for walking and standing, but dancing in them may no longer be a good idea for me.

I was slightly embarrassed that people seeing me stumble may think I was drunk. I wasn’t drunk, but it’s a reasonable conclusion given the venue and the party atmosphere. Once I’d moved on to another area of the party, I figured people just assumed my shoes were uncomfortable and I was carrying them because I didn’t want to walk in them anymore.

I realize people may think that it’s not a loss to not be able to wear high heels. It’s true that I can have a wonderful life wearing flats. It’s also true that some people have no interest in wearing unconventional, impractical shoes. But to me there’s a difference between not choosing to wear them and not being able to wear them anymore. Yes, people may judge me as self-sabotaging with this, but I think with all life lessons we do what we can until we can’t anymore.  How we find out we can’t do something anymore varies, and sometimes we require numerous opportunities to learn the lesson before we change our ways.

I will keep wearing the impractical shoes when and where I can. I will also start looking for beautiful lower heeled shoes that still make me feel special. I’m glad I made a conscious effort after I was diagnosed with MS to start wearing shoes that were fancier and less practical. I want to take the opportunity to do things and be who I want for at least portions of my life. I think it’s better to have done it and remember having done it than to regret never trying.

This is bigger for me than the shoes. It’s an indicator of the many things I may lose as I age with MS. I know the risks, and I’m taking the chance even when it triggers symptoms. It’s walking a fine line of doing what’s good for me and doing some things that may be physically difficult but emotionally nurturing. I already feel older than my years given I deal with daily inconveniences that people I know 10-20 years older than I experience. I don’t want to give up things until it’s clear that it’s best for me or the consequences become too great. For me the consequence of triggering a pseudo exacerbation, where symptoms act up but no new disease activity occurs, are acceptable. Reflecting on this experience leads me to believe this was a pseudo exacerbation. I know this because the symptoms were temporary. While my fatigue and stress levels have been elevated for some time, I've been able to keep them manageable with lots of self-care.

Pushing myself to the point of triggering an exacerbation with new lesions is not worth it to me. Knowing when my actions are one or the other is tough to discern, but it gets easier each year.  I pay close attention to my body and how it responds to what I do, eat or think, and I think I’m able to tell the difference now. And throughout this life journey, I’m going to enjoy each step of the way, recognize limits as they emerge, and adjust as I can. But I’m going to make a special effort to do a lot of things now that I may not be able to do someday. So far, today is not that day.

Monday, January 2, 2017

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

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 hard copy health tracking information to compile
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
1. Indicators, triggers and causes
2. Preventative measures including lifestyle choices, nutrition and activities
3. Treatments including prescriptions, exercises, and natural remedies
     When it’s effective
     When it’s not effective
     Why I choose this (or don’t)
4. Experiences with this issue - what’s worked or failed
5. 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
  • 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:
(Apologies for the formatting. Blogger is a bit tedious and not very accommodating for this.)

Monday, December 26, 2016

Rethinking Wealth & Organizing For Financial Wellness

Many years ago I read, “The Millionaire Next Door,” by Dr. Thomas J. Stanley & Dr. William D. Danko, and it opened my eyes to the difference between the people who appear rich and those that actually have a net worth of one million dollars or more. It obliterated my previous assumptions that people with expensive homes, cars or other material goods were rich. A pivotal point for me in the book is when the researchers host a sort-of cocktail party to entice people that are millionaires to participate in the study.  They provided champagne and fancy hors d’oeuvres, and they were dumbfounded when the study participants didn’t want them. They wanted Budweiser. The authors’ research revealed that millionaires were more likely to be unassuming. 80% of them are first generation millionaires and self-made. They were people who were frugal with their money. And frugal didn’t necessarily mean cheap.  While I don’t anticipate ever being a millionaire, I think it’s useful to learn from the people who are.

With the current political and financial climate likely to change, I’m considering how increasing interests rates and changes to health care insurance options may affect me personally. Now more than ever, I want to make sure I maintain an emergency fund, live below my means, and save for the future.  Being financially stable and prepared for emergencies depends on having a good organization system.  It doesn’t require making gobs of money, although that doesn’t hurt. 

Organizing all of the financial paperwork that an adult life requires can be a source of stress and chaos.  It can also get expensive when records can’t be found or bill due dates are missed. Five years ago, I read and followed the tasks outlined in “One Year to an Organized Financial Life,” by Regina Leeds with Russell Wild. By the end of week four, my home financial documents were an absolute joy to behold. When I moved a few years ago and the system I created didn’t transfer to my new home, I turned to this book again. For the eight pages on how to create a financial file system alone, this book is worth keeping in my home library.  That said, my system uses the basic points from the book and has evolved to address some additional goals I have.

I want a filing system that is aesthetically pleasing, located where I’ll use it, and works with my lifestyle. The flow of paper needs to be consistent and no more complex than necessary. I want all relevant financial information in one place when I need to do taxes, and I want it to help me stay focused on my financial goals.

The components I use that I haven’t seen in other financial organization guides include a shallow, trifold document organization method that doesn’t use file folders, a process for managing receipts that works for me, and an embedded financial planning and tracking system.

Financial Drawer Organization Hub:
My previous system used a two-drawer file cabinet with hanging files, but I prefer to be able to easily see my bills and other documents somewhat like an open shelving system.  With my current system, I can see more at a glance. Documents are easy to file, easy to view and access, and easy to maintain.

Using a pull-out shelf in a cabinet with a glass front door allows me to see all of my finances at a glance. This would be easily adaptable to a shallow kitchen or dresser drawer. The cabinet is located next to the kitchen and is easy to access when I walk in the door, unload my bags and sort through mail.

Using 4’x6” index card dividers is perfect for organizing bills that are folded to standard envelope height. A 10.5”x7” drawer organizer box holds bills and standard paper folded in thirds like it was designed for this purpose. The box also makes the files mobile if you need to take them to your table or desk for any reason.

Taming Receipt Chaos:
Receipts have plagued me in my adult life given it seems dealing with them should be so easy. Sadly, they seem to congregate in places that weren’t organized or useful. I felt like I should keep them all, but I didn’t differentiate between types of receipts or have a defined place for them.  Often they were just stuffed in a folder.

Now when I get home, I immediately move receipts from my wallet or shopping bag to one of two sections in my filing system. For purchases like gas, food, entertainment, restaurants and ATM transactions, I put those in the “Check & Toss Receipts” section. These are receipts that I only need to keep long enough to confirm that the charge amount is correct on my credit card or checking account. I can check this online as needed or when I get my monthly statement.

For purchases of durable goods, auto maintenance & repair, home maintenance & repair, out-of-pocket medical expenses or tax deductible items, I put them in the “Receipts to Keep” section. I have sub-sections for each of these types of purchases.

For expenses, online returns or receipts with paperwork to be submitted for reimbursement, I’ll temporarily file them under “Reimbursements Pending” in the “Receipts” section. When reimbursement is complete, these can move to “Receipts to Keep” if appropriate or tossed. You may also want to move this documentation to “Other Deposits” if it’s deposited to a bank account and not just a credit card transaction.

Financial Planning & Tracking:
The financial planning and tracking section of my filing system helps me know at a glance which bills have been paid and what still needs to be paid. This is an absolute must for me when I’m leaving town and need to take care of bills before I leave. It’s also extremely helpful to plan ahead for expenses that occur infrequently.

I created a checklist (located at the end of this post) that covers everything I want including what day each payment is due and when I need to initiate the payment with online banking. Bills that are paid automatically are grayed out so that I know they exist but I don’t need to manually make a payment.  I also include sections for my income and savings that gets siphoned off from my paycheck to a separate savings account.  If this is more than you need, you could create a simple list of your bills with boxes to check off for each month of the year.

Filing Drawer Categories and Subcategories:
1.   Receipts
a.  Check and Toss Receipts: These are receipts that I only need to keep long enough to confirm that the charge amount is correct on my credit card or checking account. I can check this online as needed or when I get my monthly statement. Examples of these types of purchases include gas, food, entertainment, restaurants, and ATM transactions.
b.  Receipts to Keep
                i.   Auto Maintenance & Repair
                ii.  Home Maintenance & Repair
                iii. Out of Pocket Medical Expenses
                iv.  Other Equipment or Durable Goods
c.   Receipts for pending reimbursement: Temporarily file papers related to online returns or receipts and paperwork to be submitted for reimbursement. These can move to Receipts to Keep if appropriate or tossed when reimbursement is complete. You may also want to move this to Other Deposits if it’s deposited to a bank account and not just a credit card transaction.
2.   Financial Planning & Tracking
a.  Bill Tracking: I created a checklist below that covers everything I want including what day each payment is due and when I need to initiate the payment with online banking. You could create a simple list of your bills with boxes to check off for each month of the year.
b.  Budget
c.  Credit Score
d.  Medical Bill Tracking: Check out my blog post, Creating Some Order in the Medical Billing Chaos, that details how to track medical bills and insurance payments.
e.  Retirement Planning
3.   Banking: checking, savings or credit union accounts
4.   Credit cards
5.   Debt: mortgage, car loan, other loans
6.   Deposits: pay stubs, other gifts, income or reimbursements
7.   Household bills: home utilities, internet, phone(s)
8.   Insurance: life, auto, health insurance policies and statements
9.   Investments: include investment accounts and any retirement benefit statements through work or Social Security.
10. Taxes: any taxes owed throughout the year including property tax and federal estimated tax payments and any expenses that are tax deductible.
11. Banking supplies: checks, deposit slips and envelopes

I relish having a system that keeps me organized and furthers my financial goals.  I want it to be easy to use and enjoyable to maintain. I don’t want any extra steps that may discourage me from taking care of things immediately when I get home, and this system works great for me.  I’ve been using it for quite a while now and am really happy with it.

Friday, December 16, 2016

My Interview With

In January 2016, interviewed me for an article, "6 People Explain What It’s Really Like to Live With MS." A small portion of it was included in the article, and I'm posting the full interview here. Reflecting on my responses from almost a year ago, I'd say my answers still ring true for me today.

Can you describe your first symptoms? Were you ever misdiagnosed before learning it was MS?
The symptoms that led to my MS diagnosis were extreme fatigue and numbness. The first time I realized something was off was when I leaned forward at my desk and couldn’t feel the keyboard pushing against my belly. The tingly numbness progressively expanded within a few days to include all of my body from the bra-line down to my toes.  I could walk, but I tripped more and fell a few times. I assumed all would be fine, and I even ran a 12K race with fatigue and a numb body.

I also realized after the fact that the fatigue I had been experiencing for years wasn't normal. I just thought each time I was exhausted that I was fighting a cold, stressed, or working hard and needed to rest. I also realize now that constipation was an early MS symptom for me. 

I wasn’t ever misdiagnosed prior to learning it was MS. The results from MRIs of my spine and a spinal tap made it clear that I had MS and led to a diagnosis within a month of my first known symptoms. The number of lesions that were old and not currently active in my spinal cord made it obvious to my neurologist that I’d had MS for years. 

When did you first receive your diagnosis? What was it like to hear?
My first known exacerbation involved three days at the overcrowded emergency room at Harborview Medical Center, a trauma center in Seattle, where I was told that the chance of me having MS was low. After a spinal tap, MRIs in the middle of the night, eye tests, and a round of steroid infusions, I was released with instructions to see a neurologist.

My diagnosis occurred at a scheduled neurologist appointment the morning of my son’s graduation. It was a complete shock to me, because I’d thought of myself as very healthy. I’d assumed the numbness I’d had would turn out to be explained by something simple and curable like sciatica. I knew nothing about MS, so my first reaction was to ask the doctor if she was sure (yes) and then if MS is fatal (no).  The neurologist acted as though it was no big deal to tell me I had MS, gave me information on four disease modifying medications to review to decide which one to take, suggested I sign up for Bike MS, and gave me the book, “MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosis, ” by Allison Shadday. She also told me to look online at the National MS Society webpage to answer any questions I had.  I was dumbfounded. 

During my son’s graduation later that day, seeing elderly people with walkers and moving slowly held an entirely new perspective for me. I was scared for what my future held, and I just wanted to hold it together to celebrate my son’s big day. 

The next day I began searching the web and library for any information I could find about MS. I called the NMSS and joined the local self-help group. 

What is the biggest day-to-day challenge you experience?
My biggest challenge is definitely fatigue. I diligently monitor my energy level, and I take it seriously when it dips to the point of feeling like regular living is like trying to walk through water. I monitor what makes me feel energized and what taxes me, and I budget my activities and energy to maximize my productivity and happiness. 

How about some of your happiest, most positive realizations or memories since being diagnosed?
The biggest shift in thinking I had that helped me transition from feeling betrayed by my body to feeling compassion for myself was to recognize that my body isn’t my enemy. My body is great at a lot of things, and my immune system sucks at distinguishing between foreign invaders and the insulation on my nerves.

Lots of people talk about having MS as struggling with MS, fighting MS, or battling MS. And that may work great for them, but it never resonated with me. Constantly fighting seemed exhausting to me when I was already experiencing extreme fatigue. And fighting myself made me feel powerless. Thinking of my body as a buddy that is doing the best she can made me feel like I had some control. It made me feel like I could help my body continue to do as much as possible for as long as possible. 

In the past eight years I learned to worry less about what can go wrong, and I look forward to what can go right even if things don’t go my way. Specific things I’ve done since being diagnosed that brought me joy were doing yoga, learning to trapeze, singing karaoke, visiting France, walking a marathon, changing my career, and starting a blog, “Keep Doing What You’re Doing,” at  MSAA has been terrific at supporting my writing and providing thought provoking themes to consider. Above all else, I cherish the personal relationships that have developed and strengthened since my diagnosis. 

What are the biggest life changes you've made to accommodate for the disease?
I’ve started making myself a priority in my life. I learned that diminishing my health and putting work or other people’s needs ahead of my own contributed to my MS disease progression. I learned that pushing myself when I’m tired or ignoring symptoms has a cost that I’m not willing to pay with my mobility or future health. I now make time to enjoy my life today and balance it with planning for my future.  And when I can’t do everything I want to do, I accept it without guilt as a low price to pay for my future quality of life.  

What are the biggest misconceptions about living with MS?
I think people want to believe that what works well for one person will work for every person and that if one person can do it than everyone can. We’re all different, and MS affects us all differently. While we can share our experiences and learn from each other, it’s all trial and error in figuring out how our bodies can best cope and thrive with MS. I’ve also learned that what worked for me last year may not work for me today.  It’s constant adaptation. 

What is your mantra for staying positive and strong while living with MS?
When I feel low my mantra is, “I will feel good again, I will feel good again, I will feel good again.”  I also tell myself, “I don’t know what I need to learn or think about differently to live with this, but it’ll happen.” It helps me to stay open to lessons, believing they’re around us all the time. I trust that when I’m ready to learn the lesson I need, the opportunity will be there for me.

I also remind myself that things can always be worse and that my life is good.  I try to change what I can, accommodate what I can’t by making changes in my life, and look at challenges with a different perspective to feel better. 

What advice would you give to someone newly diagnosed
It’s more of an approach than a sound bite since each person is different, is in a different place in their lives, and reacts to an MS diagnosis differently.  That said, I like them to know that they don’t need to figure out forever right now.  If symptoms came and went prior to diagnosis, then they’ll likely continue to come and go.  It will get better, and their life may even get great.

I actually wrote a blog post specifically on this topic, Pay It Forward: Talking To People Newly Diagnosed With MS.  

From the responses I provided to the interview questions, wrote the following:
"It’s all trial and error in figuring out how our bodies can best cope." — Stacie Prada, 45, county treasurer
The first signs of fatigue and numbness eight years ago didn't phase Prada. "I just thought each time I was exhausted that I was fighting a cold, stressed, or working hard and needed to rest," she says. "I assumed all would be fine, and I even ran a 12K race with fatigue and a numb body."
On the morning of her son's graduation, Prada finally saw a specialist. "The neurologist acted as though it was no big deal to tell me I had MS, gave me information on four disease-modifying medications to review to decide which one to take, suggested I sign up for Bike MS, and gave me [a] book," she remembers. "I was dumbfounded."
Today her fatigue is near-constant. "I diligently monitor my energy level, and I take it seriously when it dips to the point of feeling like regular living is like trying to walk through water."
Her new attitude isn't to "fight" or "battle" the disease. "That [language] never resonated with me," says Prada, who also blogs for the MSAA. "Constantly fighting seemed exhausting to me when I was already experiencing extreme fatigue. Thinking of my body as a buddy that is doing the best she can made me feel like I had some control. It made me feel like I could help my body continue to do as much as possible for as long as possible."

Monday, December 12, 2016

Feeling Connected and Nurtured When I’m Alone on Christmas

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:
  1. Try to set up a time to Facetime or phone people important to you. If schedules are complicated, email or text a holiday greeting.
  2. Do things to connect with people throughout the month or year, not just on or near the holiday itself.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. Consider people you know that may also be spending the day alone. Make plans to do something together for a portion of the day.
  9. Post something to Facebook. One Thanksgiving I enjoyed watching the sunrise on the beach while drinking 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:
  1. 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.
  2. 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.
  3. Visit and leave flowers at someone’s final resting place. Honor the impact that person had on your life.
  4. Make and enjoy a meal you love if you enjoy cooking.
  5. 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.
  6. Get outside. Even a rainy, cloudy day outside can feel better than staying inside or under cover.
  7. Think about what you could do so that you’ll feel loved and appreciated even if it’s just you who loves you.
  8. 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.