Friday, June 8, 2012

Making hard decisions about what we can and can't do

Writer, ms.about.com 
 
I'm a little sad right now, but proud of myself for making a grown-up choice. I was supposed to be getting ready to go to the Americas Committee for Treatment and Research in Multiple Scleroses (ACTRIMS) conference in San Diego to report for the National MS Society, as I did last October from ECTRIMS in Europe.

It's a perfect situation for me, an epidemiologist who has MS and loves to write about it. Perfect, except for the fact that this assignment is also really demanding – physically, as well as mentally. I know from my past experiences at ECTRIMS that when other people were settling down to relax after a long day at the conference, I was opening up my laptop to make sure I captured the day's highlights accurately. When other conference attendees were discussing the conference over lunch, I could often be found eating a bag of potato chips and trying not to let the crumbs fall onto my keyboard. It was exhilarating, but it was exhausting.

So, when the Society asked me to attend ACTRIMS and blog about it, I was initially beyond excited. I started wondering what new breakthroughs and controversies I was going to hear about and what news I would be bringing to people with MS.

However, then I thought about how I was feeling. The weather was starting to get pretty warm when I received the formal invitation. I was in the middle of a pretty bad fatigue cycle that starts to happen in the spring months and gets worse as we head into summer – I keep going, but my days are punctuated by naps and I climb into bed and crash pretty early at night.

None of this was compatible with covering the ACTRIMS conference. As badly as I wanted to go, I realized that I would not be able to do a good job in covering important topics. I'll admit that I was pretty tempted to "fake it" and go anyway. Not only would that not be fair to the Society or anyone reading the blog, it would also be something that I would remember forever as the time that I didn't do my best.

So I made the very hard decision to turn down the offer to blog ACTRIMS. I am sad about it, but I am also proud of myself. The whole experience made me reflect on what living with MS could really mean: Besides the daily struggles, there are times when I just have to stay behind and be left out of the fun. As much as I dislike this phrase, it is a truism – life isn't fair sometimes.

I thought I would put down some of my thoughts around making difficult decisions and how the process can be made a little bit easier:

Be honest with yourself. First, I have to look at reality under a harsh light in terms of my symptoms and abilities. Then, I have to accept that reality. This is harder than it sounds, because most of us go through life cramming too much into our schedules and taking on too much responsibility. To say, "I can't do that right now" goes against many years of making it work, no matter what.

Be honest with others. This is also not in our nature. When someone asks how we are doing, most of us reply with a smile and an automatic "fine." I do it all the time, but then get annoyed that someone is expecting more from me than I feel up to. The vast majority of people can handle the truth. When I had my conversation with my friends at the Society about not being able to cover this conference, I told them how my symptoms were affecting me and that I wouldn't be able to do a good job for them. In return for the truth, I received concern and support. I felt much better after having this conversation that I was dreading.

Keep it in perspective. I had to remind myself that having to turn down this invitation doesn't mean that I will never get another opportunity like this. Instead, I should treat each situation as its own event without generalizing the rest of my life. True, I may not get to attend my cousin's outdoor summer wedding or take that evening class that I was interested in. Maybe it is something bigger, like having to turn down a "dream job" that would be too physically demanding or even that another baby might be too much to handle. Yes, these things are disappointing, but no one says that dreams can't be changed (or adapted) and that my life is not wonderful, even if it is different than how I had pictured it.

What about you? How do you deal with your limitations and making tough decisions about your abilities?
 

20 comments:

  1. I'm riding in an MS ride this weekend, Ride The Riverside in Maryland. I applaud your maturity in deciding not to go to ACTRIMS. I struggle with what I think I should be able to do and come up short many times. I have made accommodations at work due to fatigue, pain, and whatever else gets thrown at me. However I still get frustrated because I perform some activities at the same level as I used to, like cycling. I've got a great team of riders, all of whom are stronger than I, so I will ride with them for a while and then let them go because I simply cannot maintain the their pace. Endurance events kill me!

    I'm getting better but I'm not quite there yet.

    ReplyDelete
  2. It's a daily struggle Julie.

    In small matters such as day to day normal things. Do I stay inside and straighten up the bedroom or go work in my flower garden. I loved being out in the warm sun, smelling the earth and fresh mowed grass. Do I wash my hair today and deal with the blow dryer? Do I shave my legs today, meaning I'll be in the shower longer, same with washing your hair?! Do I take a nap, nope gotta feed the dogs! Can I make the walk to the bathroom? What about getting those dishes done? Oh gosh, I have to walk the steps to wash the bed linens! Can I hang the quilt on the line, don't know if I can make the walk in the back yard. Afraid of falling!

    So you see, it can get to the small things in life when your MS Dragon is following behind you. Yes, it breaks my heart daily as I'm not the same Faye I was. I do miss her so....

    ReplyDelete
    Replies
    1. Faye - wow, what you said is what goes through my mind every single day. I always thought I was just being lazy for the thought of the shower, doing my hair, shaving my legs, etc. And then the mundane housework chores, my loving dog, etc. It is so very hard to admit to these thoughts and limitations when 15 years ago, I was a "morning" person and did a million things all the time without any second thoughts.

      Delete
  3. I'm so new to MS its difficult to deal with the limitations at all.I'm currently in a heavy relapse and struggling to accept things are out of my reach at the moment. I refuse to admit defeat and as a result end up worse off than I was.

    I have a lot to learn, it seems, good on you for knowing when things are too much.

    ReplyDelete
    Replies
    1. I totally understand. When I was diagnosed I denied it. Now I understand that I cannot do what I used to do.

      Delete
    2. I get it. I was thinking I was stronger than this & I could continue my life with small changes. I was diagnosed in dec of 1999 & Ive been able to pretty much live my life with SMALL changes. Over the past few weeks, it has finally gained control over me. WHY ME? WHY NOW? I know we've all had these feelings, but for the first time in 12 years, MS controls my life. It's wearing me down.

      Delete
    3. I get it. I was thinking I was stronger than this & I could continue my life with small changes. I was diagnosed in dec of 1999 & Ive been able to pretty much live my life with SMALL changes. Over the past few weeks, it has finally gained control over me. WHY ME? WHY NOW? I know we've all had these feelings, but for the first time in 12 years, MS controls my life. It's wearing me down.

      Delete
  4. Wow, Faye, that is me too!! I miss my old life SO much!

    Julie, like you I have found I have to concede more and more to my limitations. I never accepted limits before in my entire life. I always believed with enough determination one could accomplish anything. But that was before MS literally knocked me off my feet. Now I can barely make it into my own kitchen to make a cup of tea. I am going to the Blogher conference in New York in August, but I am already worried about how I am going to manage. New York is only an hour away. Just four years ago I was commuting to work in New York every day! But MS has been relentless and I cannot function without major assistance anymore. I have been so independent my whole life, this something I am really, really struggling with.

    I am sorry you are not going to the conference, but I am glad you are taking good care of you.

    ReplyDelete
  5. ALL I WANTED TO DO WAS TO TAKE OUT THE SPRING CLOTHES AND PUT AWAY THE WINTER CLOTHES. I LAYED IN BED FOR ABOUT FOUR DAYS POPPING PAIN PILLS EVERY FOUR HOURS INSTEAD OF EVERY TWELEVE.

    STUPID, DUMB I CALLED MYSELF BECAUSE I COULD NOT FOCUS AND COMPLETE PSYCHOLOGY 101. I TOOK THE CLASS BEFORE AND EARNED A B+. THE DREAM OF COMPLETING MY BACHALORS DEGREE IS GONE.

    I AM SORRY JULIE, THAT YOU COULD NOT ATTEND THE CONFERENCE. WE ALL KNOW THAT MISERY LOVES COMPANY. I COULD NOT ATTEND MY GRANDDAUGHTERS GRADUATION. I FELT SO BAD ABOUT NOT GOING. I FELT THAT I WAS SUPPOSED TO DRAG MYSELF THERE, YOU KNOW, THE HERO GRANDMOTHER. NO I STAYED HOME, SORRY FOR HOW OTHERS FELT (LIKE MY MOTHER).

    KEEP IT IN PERSPECTIVE! FOLK SAY TO ME, NOT TO GIVE UP HOPE. I HAVE NOT GIVEN UP HOPE, I AM A REALISTIC PERSON. WE DON’T KNOW WHAT LIFE HAS TO OFFER BUT IF IT’S NOT GOOD IT WON’T BE A SURPRISE. THIS WAY MY MIND IS PREPARED FOR WHATEVER HAPPENS.

    THANK YOU FOR SHARING

    ReplyDelete
  6. This is what I wrote about this very subject a while back:

    Success Redefined
    I have had to adjust my model for defining success, and it often now includes those tiny steps forward that occur after giant leaps backward. It even includes accepting that no steps forward, tiny or otherwise, may occur. The rules of the game got tossed, and I have had to find a path to serenity and integration which could even include that I might never reach such a goal.

    BTW, I'm proud of you too.

    ReplyDelete
  7. Julie, Your article is exactly what I needed to read. Actually I wish my husband would read it. I have secondary progressive MS after 20 yrs. I'm
    retired now but I've always sort of pretended I'm doing just fine. I feel like attitude is everything and I don't constantly dwell on my MS which sometimes it seems that's all we do...however, I do realize it IS ALWAYS THERE. I really hate pity but I should at least be honest with myself and others and seek help when I need it. I talk to the Lord a lot and I really think He gives me my strength but you are so right- it's not fair and sometimes we do miss important events. If there is any advantage to having MS it has to be to expect the unexpected and I think it did prepare me to face cancer and to take one day at a time and to hang in there and do what we can everyday. Thanks for the many truths revealed.

    ReplyDelete
  8. My motto is "slow but sure". I can't do much of what I used to, at the same speed and with the same vigor, thanks to MS but I can still do most things at a slower pace. Practice patience. It's not a race.

    ReplyDelete
  9. In my planning stuff, it's pretty much getting to be a habit now for me to say to myself, "Self, remember that just because you CAN doesn't mean that you SHOULD"! Not saying that I always make the right choices from there, of course!

    Some of my decisions get run through "Is this something I really WANT to do, or am I trying to prove some dumb-ass point to myself or someone else?" Yep, weeds out a lot of stuff for me! I do have to try to keep in some of the dumb-ass stuff that sounds like fun!

    With all the changes ms brings, I’ve had to for sure take a closer look at priorities in a different light than before. Some of the things that used to be so important before sometimes ain’t so much anymore. Perfect’s great, but good enough can be cool too.

    I think that most importantly, as Special Agent Gibbs would say, “Go with your gut!”. We often don’t trust ourselves enough, and stress with all the second guessing. Exactly what we need, right?!

    What usually helps me to keep things in perspective is to try to look at it from a different view than I normally might. Sometimes that view might be from where I’m sitting on the floor in the corner of my room sucking my thumb, but hey, whatever works, right?!

    ReplyDelete
    Replies
    1. Actually, I like those questions you ask yourself...I'm writing them down.

      Delete
  10. I am afraid of what others will think if I don't have a smile on my face & kind words coming out of my mouth. Seems to be the expected way of life. But when I stay inside because the brain wants to drive wheelchair into walls & mouth will not form words, no one ever comes to check on me, email or phone me. Thank goodness for computer chat rooms & emails. Just got a new aide so am trying to get her to see what MS is for me.

    Don't really like being alone but I will put up with it when necessary.

    ReplyDelete
  11. I just take one day at I time. I have had ms longer than not. It has always been there sometimes more days than others. When people ask me how I am or doing I always answer "hanging in there" cause with MS sometimes it takes more "hanging" to cope than other days.

    I try not to think of the future but sometimes do secretly grieve of that which I can no longer do as well as before. Ah MS what a cruel disease it can be. It teases you at times and days enough to gave to make you feel a false sense of "feeling a getting better", and then the next day slams you back into reality.

    I always think "Never Let MS Get You Down
    Always Smile Never Frown"

    God has given me this disease I know not why
    Sometimes I pray to him not understanding while I cry
    I realize you have a plan for me
    But with now having this disease what can it be
    I have now a label and it is called a disability
    So many things now for me are no longer a reality
    There are many times to you I do confide
    Bitterness and anger on the outside so easy to hide
    I ask of you show me give me a clue
    Of in this world of importance I could do
    I then inwardly shout
    Why why has nothing so far come about
    But then a calmness enters and over whelms me
    Just being yourself is a good testimony

    ReplyDelete
    Replies
    1. Those exact same feelings have been running through my mind so often lately, it seems overly redundant! I hope you don't mind if I use this to refocus my vision, with your blogger info as due credit of coarse. Thank you for sharing it with us all. I just may have to keep an eye on your blog now.:)

      Delete
  12. Faye, playing Devil's advocate...is there another story there? Could you put a spin on it? Make it about a person with MS that is good at what they do, enthused even, but limited because of their MS. We who suffer understand this. Personally, just about everyone I know is aware that I have MS but none of them understand that I have limits. I am a big, strong looking, ex-athlete and farm boy. It is very hard to say no or to stop when I hit the wall. One doesn't want to sit back and have others do the work. Or, maybe it's easier to do it myself. What I'm asking is instead one blog telling us that you said no is that can you write a story about the hardships of what happens when you say yes and show us someone who is not perfect? When we struggle. When we fall. Without harm to yourself, of course...

    ReplyDelete
  13. Thanks to all of you who are sharing your day to day struggles with this unpredictable disease. Some days I have the energy to take a shower and somedays I don't. Hearing others feelings about trying to do these everyday things has allowed me to give myself a break. And I thank all of you for that. I am having a good day so hope you don't mind my sharing a couple of good things that accompanies this disease. Last night I stubbed my toe and realized it didn't hurt nearly as much as it did before the numbness from MS. Later watching a really good movie I had seen before, realized I couldn't remember the ending and could watch it with the same delight I had experienced on my first viewing. You can tell I am having a good day and hope maybe this brings a small smile to someone.

    ReplyDelete