My MS Number: We Became Experts at Adapting to Change Before We Knew We Had MS

I’ve started thinking it should be the standard to have our time with Multiple Sclerosis described with two numbers.  It would be similar to blood pressure readings where two numbers have meaning on their own but give a fuller picture of a person’s health when described together. Our time living with MS could be described as the number of years since we were diagnosed over the number of years we estimate we’ve been living with MS.  

For me, I was diagnosed 11 years ago, and I can estimate my first exacerbation was likely 27 years ago.  This puts my MS number as 11 over 27.  Short hand, it would be written 11/27 MS yrs.

Often when meeting new people, we’re asked how long we’ve had MS.  Those who are more informed tend to ask how long since we were diagnosed.  Given many of us with MS have lived with it a long time before we know it and are diagnosed, those years prior to diagnosis take a lot of words and time to explain. At times it feels like I’m slowing the conversation and forcing someone to listen to a long explanation.  It doesn’t help that the words diagnosis and exacerbation have a lot of syllables and are a mouthful to say in any conversation.

Those 16 years between what I now realize was an exacerbation and the year I was diagnosed were filled with odd sensations, loss of control of hands and feet, bladder and bowel issues, and a ridiculous amount of fatigue that kept me exhausted for years.  All those years, I thought I was healthy and didn’t know they indicated something seriously wrong with my health.  I thought it might just be normal, because symptoms were sporadic or nebulous. I had no way of knowing that my exhaustion wasn’t solely because I was fighting off a cold or stressed out.  

In those 16 years living with MS but not knowing I was, I became an expert on adapting to change without realizing I was adapting to living life with a chronic illness.  

For my fatigue, I put a lot of effort into outsmarting my energy level so that I could get more done with less effort.  I’d organize every aspect of my life.  My schedule, my professional obligations, my home, my finances and holidays all had lists and systems in place to ensure I kept up with everything I wanted done.  

For dropping things or tripping, I could only conclude that I must have been distracted.  I’d vow to pay more attention.  I’d plan to grasp things with intention and lift my feet purposefully.

Bladder and bowel issues were addressed with diet and research.  I’d follow the recommendations available at the library, online and suggested by friends to see if any of them worked.  Sometimes they helped and sometimes they didn’t.  Eventually the exacerbation would subside, and I’d attribute the problems to a disruption in my routine, eating differently or not getting enough fiber.  Looking back, it’s a bit crazy I didn’t realize it wasn’t normal, but it would always improve after a while.  How could I know when I don’t have another body exactly like mine to compare it to?

I, along with many others with MS, unknowingly adapted to MS symptoms just to keep on keeping on.  The relief of having a diagnosis allowed me to add one more crucial factor to consider when making decisions.  The benefit and the burden of this knowledge is an ongoing fact of MS living.  

Pre-diagnosis, I might stay home all weekend to rest and feel like I was deficient.  Post-diagnosis, I not only had a valid reason to rest but a compulsion to rest for fear of causing an exacerbation.  Thankfully, I finally had something that my friends, family and I knew about me that might offset the judgments that I was lazy, didn’t care or was making an excuse to avoid something.  Those closest to me looked out for me and pressured me to do less. The expectations for me and from myself now had a new lense through which my performance was measured.  It is both liberating and confining.  

Post-diagnosis, my challenge has been to find a sweet spot of balance between activity and rest.  Perspective, healthful habits, continual learning and adapting helps. At time I can do my best, and I still won’t be able to adapt enough for the change needed for the circumstances. It doesn’t mean I’m unable to deal with change.  It just means I won’t be perfect in every situation. Notice it, acknowledge it, repair any damage to others I may have caused, learn from it, and move on.  I can’t do better than my best.  That’s enough.

For my suggestions and perspective on organization, see: Getting Organized and Staying Organized: It’s a Lifesaver When Living with a Chronic Illness

The Value of Doing Nothing: Same Thing, Different Feel

It’s interesting to me that the same task can feel stressful sometimes and relaxing others. It really shows that it’s not about what I’m doing, rather it’s how I feel when I’m anticipating or doing it. It’s how I judge the task in the moment.  

Needing to cook dinner after a long workday may feel like one more burdensome thing that needs to be done, while spending hours in the kitchen baking or creating a new dish on a weekend might be a therapeutic activity resembling meditation for the focus and relaxation I feel.

The same can be true for a bike ride or jog where I’m trying to perform at a certain pace or complete a set distance.  Doing the same distance with no expectations might feel like an easy activity.  What amazes me is the pace might only be a mile or two less per hour for it to feel relaxing.  While I love pushing myself and feeling strong for the accomplishments, I’m realizing that including the slower pace at times is better for me than continuing to push myself. It’s also clear that periodic no-movement days are good for me.  

When someone asks what I did all day and I say nothing, I often realize it’s not true.  I did do something. Most of the time, I’ve showered, I made something to eat, I napped, and I watched television that entertained me. 

I’m realizing I really need to think of these slow-moving episodes as necessary recovery and recharging.  I need to do this not because I’m deluding myself or making excuses, rather I need to place value on what my body needs to keep performing. While this is true for any human, it’s especially true for me given Multiple Sclerosis presents itself in my life as almost constant fatigue. Because it’s constant, I need to push through the fatigue to work, be active and participate in life. This is common for many people with MS and other chronic conditions. 

It’s often a source of frustration and requires intentional kindness toward myself to focus on what my body can do instead of what it can’t.  The knowledge that I can push myself to the point where it triggers my immune system to start attacking my brain and spinal cord is scary. The reality is that I put a lot of effort into self-care, and my immune system continues to attack periodically. 

Thus, it’s mandatory for me to include relaxing and recovery in my life to set myself up for the best health prognosis possible. This isn’t unique to me or anyone else, it’s just that the consequences may be more severe if I skip rest days. Still, it feels shameful to have days where I accomplish very little. It feels lazy, and laziness is ingrained in my psyche as one of the worst things a person can be.  

It’s imperative that I view recovery days as productive. If I view it as a wasted day, it stresses me out. If I view it as necessary and good health management, I can relax into the day and enjoy it.  There’s value in doing nothing.  When I recognize doing nothing as an accomplishment that improves my health,  I lose the guilt and feel better about my myself.

Getting Organized and Staying Organized: It’s a Lifesaver When Living with a Chronic Illness

I love being organized. I love containers and labels. I love having my finances organized and being able to find paperwork when needed. It brings me a sense of peace to plan things, be prepared and know what to expect.  When everything has a place and is put away, it brings me joy.  Living with a chronic illness like Multiple Sclerosis can be the exact opposite of that. It’s unpredictable, it disrupts plans, it can be invisible, and often it doesn’t have a logical reason behind the symptoms it brings. It can be manageable, but it’s not curable.  Unlike my belongings, it can’t be fixed and controlled.

I know not everyone shares the love of organization that I have, but I promise you that small efforts into organizing tasks, time and belongings can make any person’s life less stressful. When keys are put in the same spot each time I get home, I don’t spend any time looking for them when I’m rushing out the door. When household goods like toilet paper are purchased before I’m down to the last roll, I don’t need to make a special trip to the store when I might be tired from a long day or experiencing MS fatigue. When I fill up the car’s gas tank when it’s half full, I won’t be late for an appointment because I needed to refuel on the way. If I bring snacks and water when I leave home, I’ll spend less money stopping somewhere to get them and I can control what I eat or drink. I have the option to get something different, but I won’t be forced to have something I don’t want. It takes less energy to stay organized than it does to deal with the chaos disorganization can cause, and putting effort into organization helps me live with MS fatigue with a semblance of grace. 

My days rarely go as planned.  There’s always something that comes up, and if I allow time for emergencies or unexpected opportunities, I’m less likely to get stressed about it. When my finances and home life are organized, I’m better able to roll with inconveniences instead of them disrupting my entire schedule. With MS, having an exacerbation can put everything on hold.  Needing to schedule doctor appointments, get daily steroid infusions to calm down the immune system, travel to clinic appointments, and focusing on recovery becomes a priority. Everything else gets pushed aside.  If I’m not organized, it can be costly and chaotic.  Bills paid late can incur interest and late payment fees. Missed deadlines can create consequences that increase stress even more.  Stress can contribute to MS exacerbations and symptoms, and it can become a downward spiral for our health.

But it’s hard to get organized in the first place. 

I’ve had my share of shame surrounding disorganized papers and things in my life.  When I inherited decades of paperwork from my mother after her death, I kept a lot of it in the attic.  When money was short, it was hard to stay on top of financial paperwork. As time passed and I lacked a good organization method for new papers coming into my home, the boxes of paperwork stored in the attic grew. These boxes held unimportant paper along with important documents and possible treasured keepsakes.  The idea of going through all of them was overwhelming and easy to ignore if I didn’t venture up the drop-down ladder to the attic. 

Along the way, I bought a book that guided me through tasks to complete to become financially organized.  It had assignments to do each week and promised complete financial organization within a year.  I followed it diligently, and the papers in my home along with my financial tracking became something of beauty to me.  The boxes in the attic remained untouched.  

Then I moved, and something needed to be done. My new home was one-fifth the square footage of my old place. I was embarrassed that I didn’t know what was in the boxes, nor could I recycle or trash them without going through them.  Luckily, I had two friends who never judge me poorly and are extremely generous. They offered to help, and I’m so grateful that I overcame my embarrassment and accepted it.  

I think there were about 30 boxes that we took directly to a friend’s garage.  The following Friday night, we met for dinner and afterward each brought a martini to my friend’s garage where we spent five hours going through boxes.  My instructions were to sort through things into recycling, donation, trash and keepsakes. We would identify anything that might look important and hold it up so I could say whether I wanted to keep it or not. As stressful and overwhelming as the project seemed to me to do alone, it ended up being a really productive and fun evening.  We laughed over old photos, drawings and notes, and we told stories about ourselves.  By the end of the evening, we’d whittled the number of boxes for me to keep down to five that could fit into my new place and be dealt with another time. That weekend, we took the paperwork to shred to a local free shred event, and we dropped off items for donation at a local charity.  Trash was picked up with the garbage within a week.  What would have taken me months to go through and caused a lot of stress became an opportunity to connect with friends and make a fun memory.  

For tasks that need to be done regularly, I prefer to do them throughout the week.  Growing up, my family’s method for cleaning the house was to do an all hands-on deck cleaning session once a week. Sure, we cleaned up the kitchen each night and tidied up after ourselves, but a full-home clean would take a few hours each Saturday morning. I hated it.  It felt like punishment, and it had to be done before we could do anything fun. I learned years later of a method where cleaning could take 15 minutes per day, and I joyfully converted my approach.  Now I use that method for a lot of things I need to do.  I don’t combine everything into one session; I split up chores into small fairly quick tasks. Some are maintenance done daily or weekly, and others are done monthly, seasonally or yearly.  I wish I had a cleaning person, but for now I don’t feel comfortable with the expense. With this approach, I’m able to keep my place tidy and company ready within a few minutes.  This works well with my MS fatigue issues, since accomplishing something in 15 minutes and resting is doable.  Saving it to do all at once can be exhausting, it might limit my ability to do anything else that day, and it might require recovery time beyond the one day.  

How to get organized: There are lots of good reasons to be organized, but that doesn’t always lead to action.  I like the specifics of what I can do to make my life easier.

1. Enlist help. This is especially useful for big projects that only need to be done once.
2. Break up tasks into small and consistent routines. Success builds on success.  
3. Do one thing at a time. Don’t worry about everything, just focus on one thing to improve.  Getting overwhelmed will just lead to inaction and no improvement at all. Any improvement is better than none. 
4. Cleaning in five to 15-minute spurts rather than long sessions can accomplish a lot while accommodating fatigue issues. 
5. Pick the one thing that causes the most stress and focus on how it could be streamlined. The library and internet offer a wealth of suggestions and resources.  Find one that makes sense and try it.  Keep it if it works, and try something else if it doesn’t.  
6. Consider organization as a lifelong component of living well. It might take five years to get each aspect of a life more organized. As life, health and obligations change, so will our organization methods.  

Having control over things in life builds confidence and eases stress.  Chronic illnesses like MS can be unpredictable and suddenly disrupt our plans significantly.  Being organized with belongings and doing tasks as part of a routine ease stress.   Knowing what needs to be done and where to find things makes it easy for friends and family to help us when called upon.  Tasks become more difficult when we don’t feel well, and being organized can allow us focus on our health and recovery. If things are organized and planned, then impromptu things don’t worry me. I can add them without overloading myself. I know for certain that being organized enriches my life and allows me to say yes to more experiences.  

• For information on my financial organization, see Rethinking Wealth & Organizing for Financial Wellness
• For my organization methods, see my post Make Life Easier to Get More Done and Lessen Stress 
• For how I prepare and organize for neurologist appointments, refer to Getting the Most Out of My Neurologist Visits 

Each Person's Experience Is Different: My Highs & Lows and Health Goals

In the People Living with Multiple Sclerosis community, I’ve sensed an unwritten rule that you don’t show how well you’re doing when others are having a hard time. People are encouraging, but it seems that they want to help you when you’re not doing well.  If you’re excelling, they may say good for you, but they’ll add what a hard time they’re having.  They may say that there’s no way they could do it because MS limits the things they can do. I think I get it.  I know it’s hard when I’m having a hard time, and I know sometimes it feels like it’s easier for other people.  I’ll think that if they had my problem – or problems – that then they’d understand how hard it is for me.  

I’m a champion for the truth that just because one person does something, it doesn’t mean everyone can do it.  It doesn’t mean that those not doing more are lacking or failing.  

It’s been a rough year for me stress-wise and physical ability-wise.  I’ve had frustration and fear that ramped up my MS fatigue to a level where at my lowest I slept 24 hours in two days, and most of the rest of the time was still spent lying on the sofa.  Another weekend when I rallied enough to attempt a walk outside, I realized only a half mile away from home that I may not be able to make it home. I seriously considered calling a friend to come pick me up and drive me home.  

I worried that my physical abilities may never get better, and I feared this might be the most I’ll be able to do moving forward. It made me anxious that this might be my life now.  I hoped that it would get better, and I told myself to just focus on each moment and each day. I told myself that maybe I just need to take it easy right now. That maintaining my work and relationships should be my focus, and I could come back to my regular fitness routine another day.  That just because I’m not doing it now, it doesn’t mean I’m being lazy or negligent. That I’ll get back to it when I’m ready.

I firmly believe in explanations, not excuses.  They often look like the same thing, but I think they’re different. For me, excuses are things we say to get out of doing something.  Explanations are things we acknowledge and accommodate when they limit us from doing things we want to do. I want to be fit and active, and I want my body to be capable enough to not limit me from enjoying activities.  Sometimes I’ve had people at the gym act as if me not trying harder is making excuses.  I’m very clear with myself that I’m not making excuses.  I WANT to be able to do everything.  I’ve LEARNED that overdoing it will sabotage my ability to be as comprehensively healthy as I want to be.  My biggest challenge has been learning moderation to know when to push myself and when to rest.  This is an explanation, not an excuse.  

Today my Facebook memories included a triathlon I did two years ago.  I knew I wanted to get outside and do something active this weekend.  As the last day in a three-day holiday weekend, today was the day.  I put on a shirt from the first triathlon I did - to be clear I’ve done a total of two – and I committed to at least walking to the coffee shop.  

I went farther and faster than my body has any right to given I’m coasting on a physical fitness level achieved from efforts made many, many months ago. It felt good to be outside with my blood pumping and legs moving again.  It was tough, but doable.  I paid attention to my body and accommodated it by alternating jogging with some walking breaks. It’s heartening that a few weekend warrior activities interspersed along the way have perhaps been enough to keep me from losing all fitness ability.  

I know that one jog doesn’t mean I’m over this challenge.  It’s one hour of one day pointing in the direction I want to go. What I wasn’t able to do earlier this year, I was able to do today.  I’ll likely hit lows again.  MS is unpredictable and uncontrollable.  I manage my MS, but I’m not arrogant enough to think I’m controlling it.  I’m doing what I think is best in each moment to give my body its’ best chance at achieving my health goals which are:

1. Don’t have an MS relapse. This is a lofty goal, but paying attention to my body, recognizing triggers, and taking my disease-modifying medications helps. Not pushing myself further when I'm vulnerable has helped.  
2. Stay injury free, and do what it takes to recover (as much as possible) when I do get injured.  
3. Try not to get sick. It sounds a little funny saying that since I have a chronic illness, but I’m trying to not add more health conditions that I’ll need to live with either temporarily or permanently.  I try to avoid getting a cold or flu, because it lasts longer than it does for others and it triggers other MS issues I have.  I try to eat well and move enough to reduce the chance more ailments will be added to the list of things I need to cure or manage.
4. Feel good.  To me, this means keeping my weight within a healthy range, being strong enough to do things, and being active.  Sure, I’d love to be more toned or look like I have in the past, but it’s not my primary goal, and it comes after my first three goals.     

Beyond these goals, everything is a bonus.  Over the course of this year so far, the choices I made to try to achieve these goals varied greatly.  My ability level has ranged from extremely low to good enough to literally climb a mountain.  I looked the same at both points. I think the only difference may have been my heart rate and expression.  

This is what I really care about.  This is what I spent many paragraphs describing and wandering among ideas. Someone else with my problems may seem better or worse than I do.  Someone who looks great may be having a very difficult time.  What looks easy usually isn’t.  And what looks hard may not be as hard as it looks.  We just don’t know anything about anybody’s experience unless we ask, they choose to tell us, and we believe them.  

Managing MS Relapses

Managing MS relapses can mean different things to different people, and success varies immensely depending on how long you’ve had Multiple Sclerosis, the symptoms you experience, your level of physical ability, your disease course, and your expectations. When I think of managing relapses, I think of treating, avoiding and learning from them in order to slow disease progression and reduce the justifiable fear that comes each time one occurs. 

• We can treat relapses to try to shorten the duration.
• We can try to avoid relapses with lifestyle and medication. This is an idealistic goal and may be possible, but it places a lot of blame or praise on the person with MS.  It’s a pass-fail test that doesn’t necessarily correlate with how well a person manages their health.
• We can learn from relapses each time we have one to better understand how our body works.
• We can work to manage the fear that comes with relapses and disease progression.  This part holds a lot of mystery and is sometimes the most difficult part.

When I was first diagnosed, I had no idea at any given moment if I was having a relapse or not. My scans made it clear I’d likely had MS for over a decade before diagnosis, and I’d had no idea I even had a health issue.  My symptoms were just my life, and I had no comparison.  It was scary and felt unpredictable.  I didn’t know if there was anything I could to do reduce them, if I was doing things that made it worse, or if at any moment I was in the midst of a relapse. 

Managing relapses at that time meant figuring out when I was having one and trying to stop it once it started.  It took learning about MS symptoms and paying attention to how I felt.  I compared how I felt to my MRI scans and neurologist’s assessment in order to know whether or not I was having an MS exacerbation.  Steroid treatment was done to try to stop relapses. Because my biggest symptom was fatigue and I had no way to objectively measure it, I lived in a fairly constant state of fear and self-doubt.  What got me through was a belief that I would get through this phase and learn what I needed to know to live with MS. I didn’t know how, but I trusted it would happen eventually. 

At six years past diagnosis, I experienced an MS milestone. I achieved a point of confidence where I felt like I could finally tell if I was having an exacerbation or not.  I knew how terrible I felt when I was having a relapse, and I knew how well I could feel when I wasn’t.  I’d learned my body enough to know which symptoms were normal for me.  I could distinguish between when the intensity and duration was likely due to existing damage from previous relapses and when it was likely new active MS activity. 

I attribute this MS milestone to constant monitoring and self-assessment.  After a relapse, I would consider what helped and what was hard about it.   I’d speculate on what would have made it easier and how I can prepare for the next relapse. I’d think about how it felt, and I’d try to match up that feeling to my test results.  When I felt poorly but wasn’t having a relapse, I’d use that information to learn what is normal for me.  Knowing that helped me increase confidence and lessen my fears.

There’s so much to learn about MS, relapses and how your unique body behaves that has no prepared reference manual or shortcut around education and effort.  It’s a moving target since our bodies are aging and old damage can cause new symptoms. There is no one proven or best way to manage health to avoid relapses.  Monitoring your health, learning all you can, and trying things to see what works helps build self-confidence.  Understanding how MS affects a body in general and yours specifically helps reduce the fear of the unknown. Reducing fear can make every aspect of living with MS more bearable. 

People with MS do not have complete control over whether or not they have a relapse.  If someday there is a determined cause, cure and 100% effective management regimen, then that might be possible.  Until then, the only ways I think relapses can be managed are to tackle them when they happen, reflect on them after they happen to try to find any patterns or contributors that you might be able to control, incorporate what helps, avoid what doesn’t, and try to make the fear manageable when they do happen.

For my post on When is it an MS Exacerbation, click here.

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.

Read Wearing the Pretty Shoes: Part II for more on shoes.