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.  

Remembering I’m the Boss for My Health Care Professional Team

When I think of all the health care professionals I’ve seen in the last thirty years, it overwhelms me.  When I look at how I interact with them and how it’s changed with time, I think changes in my confidence level and perspective have contributed to much better interactions and level of care.  

Thinking of the number of health care providers I’ve seen since reaching adulthood overwhelms me.  It seems so excessive and high maintenance. The standard list of providers for a healthy adult can be a lot of people.  The annual or semiannual appointments can get overwhelming for just my primary doctor, dentist, dermatologist, and gynecologist.  Add aging, and an ophthalmologist was added.  Add injuries and trauma to my health care needs, and my team expanded to include counselor, podiatrist, physical therapist, orthodontist, and oral surgeon. Once I was diagnosed with Multiple Sclerosis and had symptoms to address, I started seeing a neurologist, a urologist, and a naturopath while seeing new physical therapists and counselors. 

What blows me away is that my list is for a person with a chronic illness who is relatively healthy!  I can imagine the team of people needed to support a person with severe health issues is exponentially larger.  

I like to think of all of these professionals as consultants for the business of my health.  I’m hiring them to help me be in the best health possible.  I want them to assess what I tell them and guide me.  They’re the ones with education and expertise in how bodies typically work and can relay how it applies to me.  For them to do that, I try to inform them as fully and accurately as I can. It can feel like confessional, but getting over the discomfort of talking about embarrassing symptoms is the only way I’ll get what I need from our interactions.  They are on my health care team, and I’m the boss.  Given I manage people as much as possible as a team, it’s a very egalitarian conversation.  That said, if there’s disagreement, I make the call.  I’m the one who will need to put the effort in, and I’m the one who will live with the consequences.

At this point in my life, my neurologist is the provider that I see regularly – once or twice a year – while I may let my annual checkup with my primary doctor slide a year.  The rest are as needed and may periodically involve a series of appointments or just a one-off.  I’ve noticed that when I take care of things without consulting my neurologist, he thinks I’m doing fine and I have no problems.  I’m learning that I should check in with him more often.  

The MS Clinic I go to provides an online portal where I can email my neurologist. In the past they always told me to call and they would always call back, but the process wasn’t efficient.  I’d leave a message, the nurse would call back when she could which usually required me to drop work to chat, and we’d talk while she took notes. Then my neurologist would call back after hours when he could.  

Now with the portal, I can email my neurologist questions at my convenience, and he can get back to me when he can.  There’s less of a hurdle for me to check in with him, and I think I would benefit greatly by interacting with him more frequently during the year.  

As I’ve monitored my own health and become more confident in my ability to notice changes in my body, the conversations I have with health care professionals are just that: conversations. We both talk, we both listen, my concerns are received as valid, and decisions are discussed not directed. 

As some of my providers have gotten older and are retiring, I’ll need to find replacements.  It can be tempting to stick with someone who I don’t really like because it’s easier than shopping around.  If that happens, I want to tell myself that it’s worth the effort to find the right person to treat me that I can work with. I want to tackle any self-doubt that may creep in by reminding myself that I know my body and any concerns I have are valid. I’m the expert on my body. While my assessment can be challenged and I can be proven wrong, it’s not okay for it to be discounted or dismissed.  Any health care professional will need to factor that in for me to keep seeing them. 

If I can find providers who know their stuff and are open to learning, and if I can stay confident and remember I’m the ultimate decision-maker, I’m positive I’ll have the best care and prognosis possible.

Laughter Is Essential When Living with a Chronic Illness

Sometimes feeling crummy and being overwhelmed makes a person forget to do things that didn’t take any thought when they felt well.  It’s natural to focus on what’s wrong and stop thinking things are funny. It’s easy to let the hard things override any impulse to be lighthearted. 

I haven’t really found a way to laugh at my MS symptoms. They’re inconvenient and sometimes debilitating, they’re an indicator of how much damage my MS has done, and they’re scary for the damage that may be yet to come.  

I can be angry, resentful and sad; I can also laugh. And I laugh a lot.  I mean a lot.  It helps me to approach adversity with resilience, rebellion and humor.  Seeing the ridiculous in everyday life helps build compassion for our natural human reactions and build a kinship to others. We’re all complex in our feelings, reactions and beliefs, and when we laugh together we’re bound together in that moment.  

It’s interesting how something said by someone who loves and admires us can be seen as hilarious, and the same words said by someone who doesn’t respect us or isn’t rooting for us is a slam.  It all depends on the context and person behind it.  

What’s my self-talk?  That’s as important or maybe even more important than what our friends and family say to us.  

Am I doing the equivalent of humble bragging when I poke fun at myself?  Am I genuinely finding my condition or behavior funny from a place of compassion and love, or am I putting myself down and hoping someone will reassure me?  If I resent my body or condition, it ends up being sad and not funny.

I think jokes about our physical appearances, limitations and things we really have no control over usually fall flat.  Jokes about our behaviors that we have control over can be hilarious, but they need to come from someone who is clearly a fan.  Otherwise it’s a dig and uncomfortable.

It’s occurred to me that if I have too long a span between belly laughs, I better find a way to do it.  Not because it changes my situation, but because it feels like it changes things.  A belly laugh is an immense boost. Letting loose, guffawing and snorting with laughter makes everything seem better.  Laughter has been shown to relieve stress and help us tolerate pain better.  

Gratitude is a wonderful action for feeling better, and it gets a lot of air time. But sometimes sincere gratitude doesn’t make me feel better.  Laughter can be hard to drum up, but it’s usually easier to trigger.  

We don’t need to laugh at ourselves or our illnesses to feel better.  Give me babies giggling, clever wordplay and ridiculous situations that show how goofy we can be.  Being silly, dancing or singing karaoke can make my stomach sore from laughing so hard.  

It doesn’t remove my fears or change my future, but it distracts me, bonds me to others, reminds me how fun life can be, and just makes me feel good. Laughter is among the things that make life worth living, and when living with a chronic illness we can use all the help we can get.

Making Travel Possible and a Priority When MS Symptoms Make it Hard

In 2014, I visited France for the first time.  I went to Sainte-Chapelle at the recommendation of a neighbor who raved I needed to go when I visited Paris.  It was incredible. The gothic architecture of the building relies on a web of supporting arcs that creates a pattern like no other I’d seen before in real life.  It was awe-inspiring. I’d been told the main floor was beautiful and the upper floor exponentially more incredible. 

Upper Floor Sainte-Chappell, Paris

At the time I recall there was construction and signage indicating only one way to access the upper floor.  As I climbed the tightly curved, narrow and steep stairway, I experienced a visceral moment that had me choking back a sudden sob. My thoughts flashed to friends with mobility issues that would not be able to navigate this route. I realized that this is something that someday I will not be able to experience. In that moment I felt profound grief for what I haven’t yet lost - the ability and freedom to go anywhere without my body limiting me.  

In that moment, I told myself to pull it together and let my sorrow sit for another time.  My neighbor was right.  The upstairs chapel was breathtaking. I was there, and I was fortunate to be there.  

It hit me hard that I should think realistically about the things I want to do in my life that I may not be able to do someday as my Multiple Sclerosis is likely to progress. It motivates me to figure out what discourages me from doing things now and what I can do to accommodate my desire to travel and spend time with faraway friends.  

If it’s money, I look at if there’s a way to do it that would cost less.  If it’s time, I look at ways to adjust my schedule and streamline my commitments.  

For my MS symptoms, I look for ways to make travel easier and less disruptive to my good health habits.  I pay attention to what takes effort.  I anticipate what would be difficult as my limbs lose strength, agility and endurance. I notice what causes me stress, because being anxious takes a lot of energy that I don’t have to spare. Trying to remember what needs to be done or if I did something can get exhausting.  MS Fatigue sometimes discourages me from even attempting things that are a change of routine.  

I tackle the challenges of my invisible MS symptoms from a lot of different angles.  Lists help me immensely to eliminate wasted effort on tasks I need to do every time I go somewhere or do a specific activity. I streamline my self-care routines so that I’m able to do them when away from home.  Simplifying what it takes to pack and leave my home vacant lessens the stress and effort it takes to get away. I pay attention to air travel restrictions, schedule travel to minimize disruption of healthy habits, and bring snacks that don’t sabotage my dietary preferences.  

Create Reusable Lists: Minimize the decisions needed to pack and get out the door.  Make sure the lists are easily accessible and add to them each time they’re used:

• Packing lists for clothing, medications, toiletries, and makeup so that I won’t forget important things that would be difficult or time intensive to replace away from home.  Look at the list when I come home, add what I needed and didn’t have, and subtract what I brought and didn’t need.  
• Leaving home list: What needs to be done to close up my house and be gone?  Mine includes fill up the car’s gas tank, take out garbage/recycling, change sheets, do laundry, close windows, tell neighbors, confirm toilet isn’t running, turn down thermostat, turn off Wi-Fi, water plants, and have food in the pantry and freezer ready to cook quickly and eat.  
• Coming Home list: My list includes turn on router/Wi-Fi, pull food from freezer, tell neighbors I’m home, check the thermostat and unpack.
• Activity lists for hiking, swimming, biking, jogs/walks: I have some dedicated bags with everything I use for a specific activity. For swimming, I have a bag with a towel, goggles, swim cap, ear plugs.  For quick hikes I have a backpack with pepper spray, multitool pocket knife, wet wipes, and a ready to fill water bag.  I have a hiking list to help me pack my backpack quickly and not worry about forgetting anything when I decide on an impromptu hike.  

Streamline my home life and self-care routines so that how I live at home easily adapts to being away. 

• Keep makeup and toiletries minimal and store them in cases that I grab and go. 
• Use online banking and stay current with bills so that I don’t have a huge amount of work to do before I can leave.  
• Organize medications and supplements in single serve packaging that’s ready to take with me. 
• Create a daily fitness practice that includes stretching and strength movements that can be done anywhere and don’t rely on equipment, location or good weather. 
• Have snacks on hand that meet my dietary preferences and I can bring with me. 

Medications and Supplements - one week's worth

Know the rules for flying and getting through TSA.  For a long trip, my injectable medications can take up the entire allotment for carryon liquids.  When I took a 3.5-week trip to France, my daily injections took up the entire quart bag a person can carry on a flight.  It can’t be put in checked luggage, because it needs to be kept between 59 to 86 degrees Fahrenheit.  I also can’t risk having my luggage lost and doing without my medication.  I planned ahead and put all of the rest of my toiletries in my checked baggage. Guess what?  My luggage was lost and traveled to two extra cities. I had to make do without my luggage for three days.  During that time in the middle of summer, I’m sure my luggage endured temperatures outside the acceptable range.  I also had no guarantee that my luggage would meet up with me again.  Because my medication was in my carry-on bag, I at least didn’t need to worry about doing without and thousands of dollars’ worth of medication going to waste. Luckily, I was with my sister who loaned me clothes and toiletries until my luggage was delivered to me.  

My supplements and pills are put in small baggies labeled AM and PM.  I really don’t like pill boxes since they’re bulky, and they usually only hold enough for one week. With single serve baggies, I can easily take one to breakfast and take them with food. It’s much more convenient and discreet than bringing a large pill container in my purse.  Because I worry about TSA not liking that my medications aren’t labeled, I pull the labels from my prescriptions and put them on an index card to include with them.  

Scheduling: To make sure I don’t skimp on sleep, I’ll schedule full travel days instead of taking the red eye.  No longer will I get up super early in order to avoid “wasting” a vacation day. It works best for me if I schedule a day off at home to prepare for the trip before I leave and another the day after I get home to recover and readjust to home life before going back to work.  It feels indulgent, but it makes for a trip that won’t overtax my energy and is less likely to trigger an exacerbation. It’s also allowed for breathing room when my flight was delayed a day due to weather.  The cushion day allowed me the luxury of not disrupting or missing work obligations. Even more importantly, it eased what could have been an extremely stressful experience that makes my MS symptoms act up.

Being responsible for my health takes a lot of effort. When I’m experiencing MS symptoms and feeling like things could take too much effort, a streamlined and organized life will help me be less likely to say no. I need to be strategic about what I do, how I do it, when I do it and how fast I do it.  I won’t have the energy to muscle through things and recover afterward without consequences.  

I’d love to be low maintenance, but I’ve found my health does better when I pay attention, plan ahead, budget my energy, and build in rest and recovery.  All of that requires an embarrassing amount of attention and planning. I get irritated with myself that I’m so high maintenance, but I didn’t cause my disease.  It takes what it takes to stay healthy and participate in life.  All of this effort eases my stress level and makes it possible for me to change my plans when opportunities present themselves.   

P.S. I’ve since learned that since the renovation efforts, the upper floor of the Sainte-Chappelle is accessible for people with disabilities via an adjacent building with an elevator and ramp. I’m glad for the efforts of many to make historical places accessible to and enjoyable by all people, whether it’s accommodating mobility, hearing or visual impairments. 

   

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Trying New Things: The Rewards Usually Outweigh the Risk

I’m realizing I have a pattern of planning ambitious goals or adventures when I’m feeling my lowest.  My guess is that it helps me to look forward to something. It’s a way for me to get outside of my head where I’m thinking about how tough things can be. 

It’s reasonable to limit activities when you have health issues.  Addressing nutrition, rest, fitness and overall wellbeing is a full-time job.  Just the idea of adding a new activity or event to my schedule can create anxiety for what it will take to make it happen. 

Doing things outside of my routine usually involves budgeting my energy leading up to and following the event.  The lure of staying home and resting is comforting, and conceding to that tendency isn’t a bad decision.  It’s often easier and causes less conflict with people who care about us to stick to activities that clearly help our physical health.  They may think, and we may agree, that we may be compromising our health and taxing our bodies by pushing ourselves. 

I think the key to why this matters is that having a chronic illness can make a person feel weak, powerless and like a victim.  Feeling like that is depressing.  Setting goals or doing things outside of our comfort zone creates a feeling of adventure and accomplishment.  It adds to a sense of strength and empowerment.  This is one area of life where I think one can help offset the other.  It’s hard to feel powerless when you’re kicking butt doing something you’ve never done before. 

It was at a very low point in my health that I found a Groupon for doing trapeze (read about it here) and decided to give it a shot.  I bought it and planned going with a friend.  Assuming I would feel better at some point and planning the excursion was something that inspired me. It also distracted me from how I was feeling at the time.  I went on to do the trapeze class, love it, and go back many times.  I tried it, succeeded, and built up my physical confidence.

Conversely, I don’t even need to succeed by someone else’s standards to feel empowerment.  There are times when we find ourselves in a situation where we can take the safe route or we can jump in to a new experience. I once endured an uncomfortable and socially horrifying event at a professional conference dinner, and I now think of it as an achievement for me.  Picture this:  I enter a hotel ballroom where only two tables have people sitting at them.  One table with ten place-settings is full. The other has eight twenty-year-old Japanese students.  With two seats open at that table, I embraced the moment and asked them if I could sit with them. One of the young men said I could.  I sat down, and then the other tables filled up around us.  I quickly realized I was now sitting at a table with eight Japanese men where only one of them spoke English.  I don’t speak any Japanese.  I conversed with the one young man about professional topics to find some commonality.  While I did, it was clear the rest of the men were commenting about me and laughing at me.  They weren’t subtle, and I’m positive I wasn’t being paranoid. I found myself in a situation where I felt I needed to stay gracious and endure. It was a sit-down dinner, and I felt stuck until dessert had been served and cleared. At an opportune moment, I thanked them for welcoming me and jumped to an empty chair at an adjacent table.  My guess is the time at that table was only about 30 minutes, but it felt like hours. 

Having dinner with men I didn’t know, where we didn’t speak the same language, and where I was being laughed at was a difficult and social disaster.  But I hold it up as a benchmark experience.  It’s a figurative badge of honor for me to believe that if I can experience that, then I can probably survive any social interaction.  It helped me feel a lot more confident, and that’s a huge deal given how shy and insecure I used to be. 

This experience helped me build my social and emotional confidence.  Trying trapeze helped me with my physical confidence.  Both of them reduce the chance that someday I’ll have regrets for what I didn’t try.  Any chance we have to push ourselves outside our comfort zone for things that seem intriguing will have a reward.  That reward may be for accomplishing it well, and it may be for just enduring and surviving.  Either way, we win.

You’re Not Doing it Wrong

Online headlines and articles give a pervasive message – You’re doing it wrong.  Whatever the topic, they’ll say you’re missing something, you’re doing it wrong, or you’re just clueless.

The judgement and arrogance is exhausting and irritating.

Please, please, PLEASE tell me things that will help me live a better life.  Encourage me, reinforce me, and motivate me. But please don’t put everyone down while assuming NO ONE has already figured out what you just figured out and are preaching.

There are times I’ll read an article that claims it has the absolute answer, and I’ll think they are five years to a decade behind the times on the latest research. 

They’ll say since you’re not doing it the best possible way that you’re doing it wrong.  Nope.  I disagree.  I also question whether their opinion of what is best is going to withstand the test of time and scrutiny.  It may be completely debunked in a few years.

They’ll assume that if you have a problem with something then you’re not doing what works for them.  Often, I’ll look through guidance and I’m already doing all of the recommendations like a pro.  Doing more might actually harm my health.

Doing some of something healthy is generally going to be better than not doing it at all, and I think the articles that discourage anything less than perfection do us all a disservice.  It’s all relative to where you are now. Online articles have no idea how much I’m already doing, and telling me what to change isn’t going to help.

Good rule of thumb – if someone tells you what you need to do before asking any questions, they don’t know.  Keep learning, dealing with problems and becoming who you want to be, but don’t let an uninformed internet oracle decide what’s right for you. 

I experienced this lesson in a glaring way when I moved.  I had health habits and routines in place that I’d put a lot of thought into and worked perfectly for me.  I moved to another place, and so many of these things no longer worked for me at all.  If something that worked for me in one moment stops working for me when one change is made, then I have no business assuming something that works for me will automatically work for someone else.

We need to know our own bodies, lifestyles and our tendencies given health conditions and vulnerabilities. We can get inspiration, motivation and helpful tips from each other, but in the end it’s trial and error to see what will be useful to each of us.  There’s no one right way to maintain health and no universal prescription for all humans. If you’re doing it differently and tailoring things to your body, you’re not doing it wrong. 

Let’s Not Give Up On Each Other

This morning I had a sudden crying jag.  Watching the closing credits of Saturday Night Live, I see the cast ice skating. I haven’t ice skated in years. Initially I thought that would be a fun thing to do again. A beat later I realized that I probably wouldn’t be able to anymore.  MS progression has made my feet unreliable.  Sometimes when I’m walking in shoes that aren’t flats, my ankles turn in and my walking falters.  Occasionally it happens when I’m wearing flats.  Even when I focus on keeping my feet steady, they sometimes give out repeatedly.  Surely skating is harder given my progressing limitations.

I used to roller skate and roller blade.  Maybe I could try that.  And maybe it would be impossible for me to stay balanced.  I could try, but it would take a lot of effort to get the equipment. I anticipate extreme frustration if it’s not doable for me anymore.  But maybe I could if it was in the morning on a good day. 

This is grief. Utter sadness for loss.  I get that losing abilities comes with aging, but I see examples online of people who with dedication and effort maintain impressive abilities long into advanced age.  I put the work in, but I can see that I may not be able to halt or reverse the impact MS is having on my body.  And the changes will continue.

When I read or watch stories about people with MS – Annette Funicello, Richard Pryor, David Lander (Squiggy from Laverne & Shirley), and others who had an extremely rough time of it – it makes me think of something I heard about ballerinas a long time ago. I remember hearing that when a dancer is injured, they take her off the stage and a new ballerina takes her place. 

It seems like with extreme health issues, people get set aside. They’re given up on, disregarded and left behind. Try not to think about how bad it is for them.

People say, “If I ever get that way, I’d kill myself.”  Please.  No. Just no.  It breaks my heart, and I think you’re not giving it the thought you think you are.  You’re also implying that others won’t have value if they get that way.  Intentionally or not, you’re suggesting they should end their lives if they ever become disabled.

I worry that people will expect too much of me and judge me for my choices or for falling short.  I worry people will give up on me and dismiss me while I’m still able to contribute, achieve and succeed. Yes, I’m trying to have it both ways. I know people can’t read minds and that my invisible symptoms don’t accurately reveal my health status in each moment.  I try to be aware of how I’m doing and accurately answer people when they ask. 

In my life, I try to assure people that while my health could reach those levels that it isn’t there yet.  I hope people won’t give up on me, and I mentally prepare responses to people who may dismiss me in my career or otherwise.  But I’m really reminding myself that I can’t give up on me. 

For now, emotionally coping is among the hardest parts of dealing with my disease.  The moments that sneak up on me are the toughest.  I think I’m doing it as best as possible. But part of it requires feeling lousy, letting myself feel crummy, picking myself up and finding a path to feeling empowered.   

I know I’m not being dramatic about this. I’m being realistic about my potential future. When I was diagnosed in 2008, I read a statistic that the majority of people with MS will likely need assistance walking (with a cane, walker, crutches or wheelchair) within ten years of diagnosis.

According to the National Institute of Health, odds are improved since then. 

“Multiple sclerosis is seldom fatal and life expectancy is shortened by only a few months. Concerns about prognosis center primarily on the quality of life and prospects for disability. Most patients and physicians harbor an unfounded view of MS as a relentlessly progressive, inevitably disabling disease. The truth is that 15 years after the onset of MS, only about 20% of patients are bedridden or institutionalized. Another 20% may require a wheelchair, or use crutches, or a cane to ambulate, but fully 60% will be ambulatory without assistance and some will have little deficit at all. Perhaps as many as 1/3 of all patients with MS go through life without any persistent disability, and suffer only intermittent, transient episodes of symptoms.”

This means that "only" 40% will need assistance within 15 years.  It means 2/3 of all patients with MS do live with some persistent disability eventually.  I know my MRI scans, and my disease has more damage in my spinal cord than my brain. Yes, it’s great that my mind may not be as affected. Truly it is.  Sadly though, I’m more likely to have issues with walking and related symptoms.   

When I feel this way, I try to work out why I’m feeling sad, sit with it, and then find a related small success.  I’m not giving up on my body.  I’m going to keep trying, monitor how I’m doing, and adjust my goals and activities as I go.  I’ll keep doing what I’ve been doing. 

I know my coordination is faltering. I look fine, and I’m grateful for that.  I am capable, and I still do A LOT.  I’m thankful for what I can do.  I appreciate the activities my body will allow. I know that how I’m doing today may be the best it will ever be again.  I also know that with determination and diligence I may be able to improve my agility, balance and endurance.  I’ll only know for sure with time and effort.  Regardless, the outcome is not wholly within my control. 

With all of this running through my mind, I laced up my jogging shoes and headed out for a run.  I planned to see how I felt in the first mile and then decide how far I could go today.  I resolve the key is that I keep trying and enjoy every accomplishment.  If I can’t go far or fast today, maybe I will tomorrow. Today I managed well. I jogged a slower pace with a longer distance than usual.  It was tough but felt great.

Later I spent time with friends laughing and enjoying life. All things considered, life is pretty great.

Enjoying the Holiday Season When Health is an Issue

There are reasons to stress all year long, but the added social events and holiday tasks in November and December consistently encourage us to overdo it. People expect things from us, and we place expectations on ourselves. 

Sometimes – or a lot of times – “just” getting to work, paying bills, keeping house, caring for others, and maintaining some modicum of basic health is an overwhelming goal.  Add the holiday season expectations, and those of us with MS can be vulnerable to increased symptoms. 

I firmly believe that these suggestions are good for anyone, those in perfect health and those with chronic illnesses.  It’s just that what may be optional for them is critical for us.  

Establish the minimum:  Decide what the absolute minimum is that you need to do to maintain your health and be happy this season.  Not being able to do everything we want to do is a daily harsh reality with MS, but being strategic about how we spend our time and energy can help alleviate the discouragement.

For holiday tasks, be very clear on what is needed and what is preferred.  Anything beyond what is necessary is a choice, not an obligation.  Sometimes just a shift in thinking can change how I feel from resentment to joy.  If I’m doing something expected and I’m coming from a place of resentment, I will suffer. When I’m gifting, I’ve decided this is something I’ve chosen to do and I’ll feel good doing it.  When it’s appreciated, it’s only an added bonus.   

Reduce the demands: Ask yourself the following:

• How can I do this so that it lessens my burden?
• Can someone help?
• Does it need to be done at all?
• Can it be done at a different level of effort?
• Can I purchase it without compromising my finances?
• When someone asks me to do something, I’ll ask them the questions above. I’ll ask myself: Would I enjoy it, and can I do it without overloading myself? If I’ll resent it, I better adjust my attitude or not do it.  

Organize and plan ahead: Don’t expect to remember everything without any extra effort.  I keep a list of holiday season tasks that I want to make sure I do each year. It includes things I’ve done in the past, mailing due dates for cards and packages, gifts given, gifts received, thank you notes sent, and events attended.

If possible, I’ll proactively schedule time off from work to do holiday tasks.  Trying to accomplish them all during evenings and weekends often doesn’t allow enough rest for maintaining health.

Make room for joy: Connect with loved ones in person or by phone, text or letter. For many years I’ve alternated between Christmas cards sent in December and New Year’s cards sent in January depending on how much I had to do that season. Some years I didn’t send cards at all.

Include time to recharge in ways you love that feed your soul.  I love getting outside and moving my body. It’s important to not just set sights on getting through the holiday season.  Experiencing joy along the way is crucial for my sanity, and I will not do without just because I have a chronic illness. 

Adjust to changing plans: I’d forecasted the things I would do this holiday season to match a level that I thought could accommodate my MS fatigue.  Then my career placed demands on me I hadn’t anticipated.  Sure, I whined about the surprise demands before verbalizing that it’s my choice to participate.  The truth is I want to do these events; it’s only the scheduling that frustrated me given it challenges me with fatigue.  To adjust, I found time on the work schedule where I could come in late or take some time off to offset the longer days.  I also talked to a couple people who scheduled the events and asked them to consider spacing them out if done again in the future. 

Receive judgement with compassion: People will judge the choices you make.  Understanding that we can no longer do everything we’ve always done is hard to take for those that know and love us.  Sometimes it’s not about the task, it’s about them wishing our health will be okay.  It’s hard for us, but it’s also hard for them to accept that we have a serious illness that affects every aspect of our lives. Other times due to the invisible symptoms we experience and successfully accommodate, they forget we have limitations.  It’s up to us to share our limitations when they affect others.  No one who cares about us really wants our health compromised because of them.  Usually they don’t understand that the little things could be a tipping point for us that requires a long time to recover. 

It takes a lot of effort to live well with a chronic illness among people that have much more natural energy. They haven’t been forced to face these issues, and they may not understand how little things for them can be big things for us.  It’s our job to take care of ourselves while nurturing relationships and living a life we love.