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.