Quarterly Gratitudes from an MSer || Top Ten GOOD THINGS in my life right now

Burning Bush, September 1, 2014. 

Welcome to my front porch!

Plumbago blossoms

Wow, where did the summer go? Wait, it's still here. Sunny and beautiful in the Pacific Northwest and more to come. I love September.





1. I know, I am a broken record (and I'm antiquated too, since I'm using that phrase)... but I have amazing children. Beautiful, smart, strong, funny. Focusing on them means less time to focus on my MS.

2. I'm also gifted with some amazing friends. Not only do I feel like they are right there with me when I'm on a trip across the country (thanks to Facebook!), but sometimes I even run into them live and in person in faraway places (Loretta!) and that's a real pleasure. They are my major source of laughter, intellectual stimulation and advocacy.

Rose of Sharon

   3. I just spent 10 days in New York and I lost weight. 
   Not a lot. But enough that I can sigh with relief and 
   know I won't have yet another 5-10 pounds to add to 
   my list of things to take care of. It wasn't all hearts
   and flowers, though: the heat got to me on two 
   separate occasions, and I had a violent tremor 
   that I'm sure was my body's response to muggy high 
   heat and the stress of travel. But I'm feeling much 
   better now that I'm home. 

False spirea

4. A repeat from my last gratitude check in: My meds. All of my meds. I'm grateful to take them, grateful to be able to afford them and to be able to tolerate them.

5. A shift in my schedule. With one kid off to college, it will be a little more quiet around here and a lot less busy (and with way less laundry to wash). I'm excited for my daughter and know these next few weeks without her will be spooky, but I'm grateful for a lighter load of parental duties at the home front. And she's gonna be just fine where she's at. I feel like I can really hunker down and get back to some meditation, yoga, walking, and even some trips to the gym, as well as eating better, drinking more water and just taking time to be with friends.

6. Loads of DVR recordings to catch up on. It's how I get my chores done. Old stuff, new stuff, movies. And (see #5) there's potentially more time for more books. I'm reading several right now in fits and starts. I'd like to make that more consistent. My fatigue is more or less under control, so it's doable.

7. I have a whole new pot of gold to develop into essays, stories, poems etc. thanks to time spent at a writer's conference in July and the purchase of numerous small journals which I have tucked into every nook and cranny so as to capture fleeting genius whenever it strikes. (Once captured, it may not be genius anymore, but that is beside the point!) I'm thinking about writing about my MS now, more formally, as well as other topics. 

Pansies popping!

8. My neighbors stepped up and helped my husband throw our annual neighborhood bash while I was out of town. Who can claim to have such awesome neighbors?? I've never known this kind of community, having moved so often as a kid. It's pure gold. I know that, were my MS to take a turn for the worst, my neighbors would be the first line to help out my family and I.

9. I planted my yard to be awesome in the fall. And it is. The false spireas and the plumbago are just absolutely gorgeous right now, as is the Rose of Sharon. New pansies are bursting from the pots as well and will keep doing so into the late fall. Burning bushes are tipped in red as well. Fall is here! Yay! MS has enhanced my appreciation for the little things: the flowers in the yard, the birdsong outside my bedroom window, the cool breeze through the trees, the brightness of stars outside the airplane window.

10. Recognition for my writing. I recently won a literary prize for an essay I published last spring. It came with some cash-money as well. It's no small thing to be validated in this way, and I can probably squeeze a whole year of encouragement out of that single attagirl. Again, like in #9, it's the small unexpected surprises of life that can keep a person moving forward.

National Multiple Sclerosis Awareness Month || Attitude is Everything, Part 3: Worry, uncertainty, permission to be grumpy and choosing the life you want

Here are more tips for overcoming the challenges of an MS diagnosis using a positive attitude.

(see Part One: Steel yourself, look away from the belly button and cut some cords)
(see Part Two: Gratitude, going outside, the Paradoxical Commandments and the New You)


7. Stop worrying
One of the most common behaviors that follows on the heels of an MS diagnosis is the seemingly incessant need to worry! Stop it! Others smarter than me have already addressed this bugaboo:

• Worry is a cycle of inefficient thoughts whirling around a center of fear.--Corrie Ten Boom
• Worry never robs tomorrow of its sorrow, it only saps today of its joy.--Leo Buscaglia
• Our fatigue is often caused not by work, but by worry, frustration and resentment.--Dale Carnegie
• It makes no sense to worry about things you have no control over because there's nothing you can do about them, and why worry about things you do control? The activity of worrying keeps you immobilized.--Wayne Dyer
• If you know how to worry, you know how to meditate. It means to think of something over and over.-Joyce Meyer

Anxiety and worry are two things that really need to be addressed if you are going to move forward with optimism. They both take up way too much energy to ignore and may require that you seek out counseling to conquer them. Please do so, if necessary.

8. Learn to expect and to live with uncertainty.
People who grew up in truly dysfunctional households probably already have this skill in hand. I know someone who grew up with a loved one who was/is very likely bipolar, but their loved one refused to acknowledge it (which means their mood disorder remains, to this day, untreated).

My friend's childhood was a series of days in which he walked on eggshells in his own home. Talk about uncertainty. If he didn't walk on eggshells, he could easily attract the wrath of his mood disordered loved one. This is how he moved through childhood... tentative, leery, expecting the worst while hoping for the best. Don't feel sorry for him; from this, he learned survival skills by way of necessity. Now that he has MS, he knows better than to demand that life be predictable, but because of the unfortunate circumstances of his childhood, he also knows how to keep moving forward anyway.

However, this isn't the case for a lot of people, I'm discovering as I move through different forums and hear people's different stories about how they are dealing, or not dealing, with an MS diagnosis.

Others can be way more challenged to deal with the loss of control that uncertainty possesses. You can't control anything in life (with or without MS)... not really. You can work hard and still lose your job. You can walk across a quiet street and get hit by a bus. You can try to have children over and over again without success. You can practice an art or craft and never master it. You can tell someone you love them a million times and still lose them because they don't believe you. You can make all the best laid plans o' mice and men and still find yourself in the center of a tornado where everything you cobbled together in your life is lost.

How you deal with this uncertainty depends upon how you relate to the way you manage time, energy and resources. The more flexible you are with your time, energy and/or resources, the easier it will be to manage uncertainty. But if you live by a rigid and inflexible schedule, if you still continue to "push through" periods of fatigue because you still believe you can (P.S., the secret is out! With MS, you can't), or if you are stingy when it comes to using your resources to guide changes in your life (being willing to spend more money for convenience products or pay for help, for instance), then you will be challenged to manage the uncertainty that comes with MS.

A suggestion here... make some plan Bs for specific situations in your life where you know that uncertainty can derail you. In example, make contingencies for days when you're hit by a wave of fatigue or a major migraine or temporary blindness in one eye. It may happen on that day when you had major plans (going to work, taking care of a lot of complicated errands, volunteering for your kids school, attending a critical board meeting). A plan B is your way to be part of those major plans even if you are waylaid by MS symptoms.

You could, for instance, work with your boss to make up for lost time at work or issue a protocol for rescheduling or reassigning tasks as a plan B.

You could ask for help with your errands from a handful of friends who have offered their support in the past; make a plan B phone tree, even, for such situations.

You could have a backup volunteer in place for those times when you can't do the school bake sale after all.

You could attend the board meeting via cell phone or iPad or get someone to record it or read your presentation in your stead.

Some of the most successful people I know in life are those who regularly anticipate the need for a plan B and use it when something happens. Not just MSers, mind you, but people in general who see the value of moving forward and not letting obstacles get in the way. You don't always have to jump over the hurdle, see? You can always walk around it, hire someone to do it for you, or push the darn thing over and walk ahead. There's more than one right way to do something.

This is not to say that a plan B will always fix a problem. Sometimes MS hits and there's nothing you can do. Then your plan B really needs to be one of surrender and acceptance; tomorrow will be another day to try again.

9. You don't have to smile all the time!
It's okay to admit that you feel like shit. It's okay to say, crap, I need help today. It's okay to recognize that your energy is nearly depleted even if you just got out of bed and, acknowledging this, go back to bed. You don't have to be Miss Happy Face all the time. That's perpetuating a lie. People who only see you has Miss Happy Face will not have an accurate portrayal of MS, which is a disservice to all who do suffer terribly at the hands of this disease. You have permission to feel grumpy. You have permission to cry. You have permission to be snarky and to call the disease nasty names. You even have permission to be annoyed by well meaning people who seem to argue with your diagnosis when they say "But you look fine!" when you are feeling Not-So-Fine-At-All.

You didn't ask for this. Still, it's up to you to decide how much grace you want to apply toward managing it. Some people are saintly about it, but most of us are more provincial... we get pissy or depressed or disappointed. And it takes its toll, for sure. People who put on the perfect happy face and never complain are repressing legitimate emotions and denying themselves an opportunity to deal with the dark side of their chronic condition. It's normal to feel negative emotions, even healthy. Don't shortchange yourself an opportunity to more precisely hone your coping strategies... by getting these feelings out in the open, acknowledging them and dealing with them, you are going to be a much stronger person. If you don't, you can only expect resentment, anger, frustration and outrage to consume you over time.

But you don't have permission to hurt others. Responding to their insensitive comments with information and education is a far better approach. And you don't have permission to lash out or to make comparisons with other people's pain or health issues. Comparing apples and oranges is never helpful for anybody. And you definitely don't have permission to use your condition as an excuse to make everyone else around you miserable. Nobody ever has the right to do that, no matter what's wrong with them.

Just be honest and keep it classy. If you are having a crap day, and somebody asks how you are, and you know they can tell you are having a crap day, just say it: "I'm having a crap day." Shrug. Move on. Do or don't do as determined by your body and your energy level. Don't make it everybody else's problem, just find help when you can, defer what you can, and tend to your situation until it turns...

Because with MS, it usually does turn itself around... three days of blindness in one eye forces you into bed and then, boom, you can see again, your headaches are gone and you feel great! We often focus only on our relapses but how often do we celebrate the end of relapses and the beginnings of remissions? If you have energy and you feel good, use it while you can! And if you have nothing to work with, well, then it's time to lie fallow until the pendulum swings back in your direction. For the vast majority of MSers, symptoms come and go and our biggest job is to just manage them. That means making the most of the best days and riding out the worst ones.

And finally...

10. Choose.
Repeat after me. I have MS, it doesn't have me.

People all around you are dealing with chronic illness, not just you. They are diabetic, they have asthma or terrible allergies or arthritis or fibromyalgia or mood disorders or a host of other health problems that can create barriers to living a full life. Find those people, ask them how they push through it all. The fact is that multiple sclerosis is two words, not a sentence! And you still have opportunities to choose how to live your life. You can set your terms. You can even revise your terms. It's all up to you, as long as you remember that you have a choice. You can choose to live with MS or be its victim. What will it be?

MOST PEOPLE WITH MULTIPLE SCLEROSIS
LIVE TO THEIR ANTICIPATED LIFE EXPECTANCY

Given this fact, why choose to be its victim?

Here is where choice is everything: you can choose to curl up into the fetal position and stop living, or you can choose to move forward hesitantly, or you can just decide, what the heck, I'm just going to go back to LIVING MY LIFE because there were always obstacles to whatever it was I wanted to be doing anyway, EVEN BEFORE DIAGNOSIS.

Even those with extreme disabilities can CHOOSE to continue to do what they can do, can CHOOSE to focus on ableness, can CHOOSE to keep moving forward as a whole human being. Watch the Special Olympics sometime. Be inspired. Even better... be empowered.

When you actively, consciously choose to move forward with positive energy and optimism, you are choosing to live an empowered life. An empowered life is lived when you are educated about your challenges and have come to accept them and persevere in the face of them.

MS is only one obstacle of many that can befall a human being. If you learn to live your life believing that obstacles are opportunities to learn, grown and improve, then even something as monstrous as MS can't keep you from living the whole, rich and interesting life you deserve.

National Multiple Sclerosis Awareness Month || Attitude is Everything, Part 2: Gratitude, going outside, the Paradoxical Commandments and the New You

Here are more tips for overcoming the challenges of an MS diagnosis using a positive attitude.

(see Part One: Steel yourself, look away from the belly button and cut some cords)

3. Express gratitude.
When you consciously count your blessings (I mean daily), you reset your focus to looking for the good in the world. This is not a one-way ticket to Pollyanna-ville, people. It's retraining your attitude. The world can throw its worst possible ever crap at you, and you can't control that. But you CAN control how to deal with it. And attitude is how that happens.

Take a journal (or make a digital journal) and spend 5-10 minutes a night sharing what you are grateful for. Need prompts? I have included a list of prompts below. We often forget all the awesome things that we encounter in the course of a day; a short list makes these easier to recall.

List of Gratitude prompts (feel free to cut and paste onto a sheet of paper and insert into your journal)

• Identify people who made me smile or laugh or feel great today... and share why
• Describe something beautiful you encountered in nature today
• Did you notice any "missing" symptoms or side effects today? Celebrate them here!
• What or who inspired you today? 
• What sensory experiences were pleasurable for you today? Food, fragrance, touch, music, imagery, textures, sounds, spoken word
• What media experiences were pleasurable for you today? Movies, television, podcasts, online activities, games
• What social experiences were pleasurable for you today? Face time with friends, silliness online, family togetherness, special occasion or holiday, interaction at work, conversations with perfect strangers
• What physical experiences were pleasurable for you today? Physical therapy, walking, trip to the gym, yoga class, bicycle ride, dancing, work
• What soulful experiences were pleasurable for you today? Meditation, creative expression, attending a holy place, chanting, prayer
• What terrible things have happened elsewhere that have made you grateful for what you have today?
• What did you do today that made someone else happy?
• What did you make today that was original? Cooking, artistic composition, gardening, construction
• What places did you visit today which inspired or nurtured you?
• Name one simple pleasure or success you encountered today... could be a "good hair" day or hitting all green lights on the way to an appointment or seeing the trees budding for the first time
• What parts of your body, mind or soul worked extremely well today?
• What relaxation activities helped you today... could be yoga or listening to music or taking a lavender bath or even having a martini or going to a comedy club, as long as it left you feeling better afterward
• What do you like about your house today? your neighborhood? your town? your region? your state? your country?
• What animals left a positive impression on you today?
• What do you have today that you cannot live without? 
• What gifts were given or received by you today?
• What challenges today gave you insight into your inner strength? 
• If you had a really rough day, try to find one good thing that happened all day. Big or small, write it down and tell it "Thank You."
• What activity did you do today that you feel you are not good at, but you enjoyed anyway?
• What challenged you today and how did you overcome that challenge (if not completely, then partially... making an effort and failing is STILL progress, after all)
• Did you experience a triumph over some aspect of your MS today? What was it?

4. Go outside and play.
Great advice NOT ONLY for children. Fresh air, sunlight, even the diffuse light that presses through overcast skies is nurturing for your mental health. Dress for bad weather. Just do it. Even if only for 5 minutes. Or if you can't go out in it, drive in it. Ride in it. The point is to leave your house, even if you just go sit on your back porch.

Being out in nature daily (or even just leaving your house to go to the store!) is really crucial to keeping positive. It's a huge mood booster. It means that we might have to clean up, make ourselves presentable, which also has the impact of making us feel more put together, like a good hair day. If you're having a good hair day, do you stay inside? No! You go out and show it off!

I always used to cringe at the quote that a woman need only put on lipstick to feel better, but now I know the inherent truth behind that idea: if you prepare to go out into the world, you WILL go out into the world. If you hang around in pajamas all day, what are the chances? Next to nil.

Related to this are two other dynamic options for MSers:

EXERCISING is hard when you are fatigued and/or in pain. Find even the lightest exercise possible and just do that. It's still better than not exercising at all. If you find yourself sitting all day or laying on the couch, and you have mobility, get up and walk around. Break up your idleness with trips to the laundry room to do a load or two, a trip to the kitchen to put some dishes away, or a trip to the bedroom to make the bed and put stuff away in your closet, or a trip to the mailbox, or a trip to the backyard to pull up some carrots. Find an activity and DO IT. I would rather do any activity with earbuds crammed into my head, listening to comedy podcasts, so that's one way I get myself going.

The point is to mix things up so you aren't prone and bedridden unnecessarily. Many MSers cannot move about, for sure, but many CAN, yet don't. They are afraid to, because they anticipate pain, discomfort or unpleasant side effects getting in the way. I know I hate to imagine going for a fast walk where there isn't a bathroom nearby. I've been stuck out in the middle of nowhere with a major urge before, and so I either walk in parks or downtown where I know of public restrooms, or I go to the woods and walk and, well, pretend that I'm a bear when nature calls and go off trail. (Haven't been caught yet.) Fanny packs, however unfashionable, are useful for preparing for this, by the way.

I'm not asking you to go out and run a marathon here. I'm saying, okay, if you feel like you need to stay where you are because you have digestive problems, then walk up and down the stairs every hour. Do some spinal twists. Practice some breathing exercises. Lift some canned goods like weights while sitting and watching TV. Go out in the garage and jump rope, counting as high as you can until you can't jump anymore.

JUST. DO. SOMETHING.

PLAYING GAMES is a better way to view activity for me. I hate exercise and the idea of the gym, but I love games. I'm more likely to exercise if I'm playing volleyball or trying jumprope tricks or challenging myself with Wii yoga or going for a swim at the beach or meeting my husband at the pickleball court. I'm headed to Hawaii soon and think I will give paddleboarding a shot.

Other kinds of games matter, as well. Board games. Game shows. Brain games played on your iPhone. Jigsaw puzzles, crosswords, Sudoku, card games. Yard games like lawn bowling or bean bag toss or badminton. They could be social games or solo games. They could be games that take forever or are ongoing, like Dungeons & Dragons, or they could be quick dice games played at a local coffee shop while you wait for someone to join you.

Games are about having fun, testing your skills, flirting with chance, overcoming obstacles, creative problem solving, laughing and achieving escape.

5. Shut up and get out of the way.
Sometimes we can be our own worst enemies. Try to notice any negative self-talk you engage in. It could be something you mutter under your breath, or it could be a self-deprecating comment you make in jest before a group of friends, or it could be a "voice" in your head telling you that you aren't good enough, healthy enough, smart enough, worthy enough, etc. Stop doing this. Consciously, even vocally, express it like this: "Stop it!" Don't judge yourself, don't feel bad if if happens. Just acknowledge it's there, then tell it to leave. You will, eventually, stop the negative self-talk once you are aware of it.

Getting out of your own way is a similar activity. We often stand in our own way, mostly out of fear. We decide that we can't exercise because it will hurt, for example, or we decide we are too old to learn something new, or we decide we aren't the best at something, so we quit doing it altogether. What we need to do is just do it anyway. Go to the gym anyway or take that walk. Go lightly. Don't overdo it. Just do it. Or... take a beginning foreign language class or start playing a new instrument. Expect failure. Expect to learn differently from your younger counterparts. Just do it. Or... learn to accept that we can't be perfect at anything and remember that it's the journey and not the destination that matters. Do your best at a task, and practice admiration for others who do it better. Share what you know with someone who is not as good at you.

Every day, you can decide you aren't strong enough or smart enough to go after something you want. What's stopping you? Well... you! Tell the hesitant You to move out of the way and just go for it anyway. Expect to make mistakes. Laugh at yourself if you do. Give yourself a brownie button later, regardless whether your efforts are met with success. Trying matters.

Inertia is a huge part of passive living, and it's often accompanied by fear. If there's something you are afraid to do, write it down. In example, write: I AM AFRAID TO ASK FOR HELP. Then, speak it out loud: "I am afraid to ask for help." Then write: I AM GOING TO ASK FOR HELP ANYWAY. Then, speak it out loud. "I am going to ask for help anyway." Do this enough times and you will find you are less and less afraid to ask for help and more and more comfortable with actually doing so.

I love the Paradoxical Commandments, which are related to this idea that we should just look askance at fear and do the things we are driven to do anyway. Check them out here.

6. Let go of the Old You, embrace the New You
The pre-diagnosis You is no longer You, it is a figment of your past experience which may lend great wisdom to things you do now or will do in the future. However, it is no longer You. You are a new person, reborn with a new reality.

No, you didn't get to pick the reality, but so what? When someone loses a loved one, they are also a new person, and they didn't choose that either. This is LIFE. There are lots of things that happen to people unexpectedly, and they can all either SUCK or they can be life defining in a way that can be made positive, as long as you embrace the opportunities inherent in any kind of change.

MS is not an excuse to just wallow in the past and not move forward. Instead, you need to look at what this New You has to offer. Not just as a worker-bee or fulfilling any other role to any other person or organization. You very likely have had to step out of these arenas and/or roles partially or completely. But the New You has valuable insights, experience, ideas, talents that can still be applied toward making the world a better place.

Sometimes someone will say that an MS diagnosis can really be thought of as a gift. And when someone says that in an MS forum, they are sometimes shot down by others who think it's ridiculous that any kind of diagnosis for any kind of chronic health condition could ever possibly be considered a gift.

But I do think that change is about opportunity as much as it's about loss. Yes, I have grieved over the idea that many of my life's dreams might be wiped out by this diagnosis, because that is what you do when you grieve. You let loss and impermanence roll around in your heart a while until something comes and flushes it out and then you move on. That something is usually an amalgamation of the highest of concepts: hope. Hope does return after loss, and if you can nab some, you need to stitch it to your soul so as not forget that it's always there, just in case.

Hope and dreams... these are not just abstractions, they are the seeds of anything we can aim for, goals, a horizon we build for our life's path. We just have to harvest them wherever we can and plant them when the time is right... usually after a period of fallow grief.

Why not embark on your life's path by making yourself a revised Bucket List of things you want to do or experience, places you want to visit, people you want to meet or spend more time with? You'll be surprised to find that the vast majority of things on this Bucket List are still achievable even if you have MS. Maybe some will not be 100% attainable--like, say, climbing a mountain--but you might take a training course in how to do this, or you might shoot for a similar goal, like hiking in the mountains overnight. Wouldn't it still be cool to hike in the mountains overnight, even if you couldn't climb the mountains outright? I think so.

The act of surrendering to a new reality can be challenging, I know. But once you realize that holding on to the past doesn't change the present, you'll encounter a sense of liberation. Clinging to the Old You is rather like tossing yourself into a huge bonfire, eating up all your energy, leaving only a few pathetic ashes to witness you were ever there. Don't do that to yourself. Step away from that fire, hold on to the flames that are perpetually kindled in your heart, your mind, your gut... you have everything you need within you to use these little flames to inspire new directions for the New You. It might mean getting some help from a counselor or therapist, but so be it. If you can arm yourself with the powers that the New You holds, you can live a ginormously enriching life.

Coming tomorrow, Part 3: Worry, uncertainty, permission to be grumpy and choosing the life you want

National Multiple Sclerosis Awareness Month || Attitude is Everything, Part 1: Steel yourself, look away from the belly button and cut some cords

People often comment on how remarkable it is that I stay positive even though I have MS. Well, it's not exactly the reality... I just make a bigger effort than most to approach my diagnosis on my own terms.

I have days where I'm really pissed off by this new course in my life, and some days when I'm saddened by it. I feel anxiety about my future in a way I never used to. It's not all smiley face stickers and thumbs up in my neck of the woods.

I used to be a creativity coach, and I guess I'm blessed with all of the lessons I've conveyed in that arena because they also apply here. People who are creative (in my case, I worked primarily with artists and writers) are constantly fielding rejection. Rejection sucks if you are a creative person funneling your entire identity into works of expression only to find out that someone else doesn't think they are good enough. That's like saying "you are not good enough."

If you've never created something, and then followed through like these people do--by asking someone to publish/produce/present it as part of a collaborative agent like a magazine, a performance or a galley--then you can't know just how shitty it feels for that collaborative agent to turn around and say, in effect, "You suck." And not just once in a lifetime, but many times a week for the more active and prolific creatives among us.

I have been rejected countless times. Probably in the thousands by now. I still write, and I still make stuff, and I still believe in myself. And I still get rejected. But I've been doing this for YEARS, and I've gotten used to it. That is not the same as liking the process or succumbing to its painful realities, but it does show that, over time, you can develop some personal steel and drive to move forward regardless what life throws at you.

MSers who have had MS for a very long time... they've been "doing MS" for YEARS as well, and more or less, they have also gotten used to it, which is not the same as liking the process or succumbing to its painful realities...  it DOES show they have developed their own personal steel and drive to move forward regardless what life has thrown at them.

Here are some things I've taught my clients in the past which are easy to apply (almost seamlessly) to the challenges MSers face every day.

1. Forget you have a belly button.
It's called navel gazing, and it's a kind of unhealthy focus on oneself to the point that you lose perspective. It happens A LOT in forums where everyone is complaining about their symptoms or side effects of medications or all the bazillion other problems that hitch a ride with an MS diagnosis.

Stop it. Stop going there. Staring at your problems makes them bigger; it doesn't make them go away. Take a week off from forums; you will be surprised at how much better you feel because, guess what? You aren't focusing on your pain or discomfort or the lousy other things that are part of living with a chronic disease.

When you choose to focus on other aspects of your life, you might not "forget" you have MS, but you will push its reality further back as you push forward your awareness of other GOOD things in life, such as beautiful weather, a great meal with your family, a fantastic movie, laughter with friends over coffee, a dip in the local pool for a therapy class.

Even the simple act of noticing all of the world outside yourself is becoming part of the larger world again. You can't notice it if you are staring at your belly button.

2. Cut some cords.
Along with this idea of looking outside yourself, I like to blend in the notion that we should actively choose who we spend our time and energy with and what we spend our time and energy on. Time to cut some cords, people!

For those people in your life who require too much emotional energy and who never reciprocate, snip snip snip! Stop calling them. Unfriend them on FB or block them. Don't accept their invitations. Be kind to them when you do see them, but let the cord out, looser and looser and mentally cut it when you are ready.

For those people in your life who you can't cut away because of work or family obligations, practice the fine art of feeling sorry for them because, frankly, if they are that hard to be around, it's because of some misery that has nothing to do with you, even if they project it on to you. Having compassion puts you on the high road, a much better place to be because you can live with yourself knowing you have shown love and empathy and kindness even to people who have been hurtful to you.

For those tasks in your life that take up too much time and energy and don't require that you be the only one doing them, snip snip snip! If it's a volunteer position, politely step away and help fill your shoes if possible. If it's a job you hate, try to find a new one while still employed, and give the professional two weeks' notice. If it's household chores, get help from family and friends or pay someone. If it's projects you once loved but don't really love anymore, or can't even do anymore, offload them to people with stronger interests.

For those tasks in your life you have to continue to perform because of family or work obligations, get some help, find some alternatives that free up your time and energy or reinvent your role so that you don't have to manage the same volume of task mastery.

All this to say that re-engaging in the larger world outside your own inner one should be energizing, motivating and inspiring. If people and tasks don't fit these qualities, lose them or remodel them on your own terms. Then you will have an easier time being part of the larger world, and that will go a long way toward making you a happier person even with MS on board.

Coming tomorrow: Part 2--Gratitude, going outside, the Paradoxical Commandments and the New You

Was it something I said?... Cheerleaders get no respect

I am always wanting to post here, but life as a working mom with MS is ruled by interruptions, too many tasks and not enough time! And, quite possibly, time-sucking diversions like Facebook (ha!).

However, I did just post this response (below) in a closed group in FB to a fellow MSer regarding the challenge of wanting to be inspiring to others and still being taken down for it in the forums. This MSer is one who runs marathons and who is always actively evangelizing the idea of staying active as much as possible.

And it's great advice, though not always well received.

This happens a lot, actually: people write "positive thinking" comments or posts on their timelines (hmmm, guilty as charged!) and the trolls the disenfranchised and unhappy come out in force to let you know just how pointless it is to be hopeful.

Here's what I had to say about that, with identifiers removed for privacy. Sometimes I spend my blogging eloquence on posts like this and then I think, dag, I could use that at my blog. So here goes. This is slightly revised because, dagnabit, the editor in me can't help it.

Enjoy your day, however it comes to you!

-----------

[Dear X:]

Being a cheerleader and encouraging more activity should not be something you apologize for. "Do what you can" is a great approach and you shouldn't be criticized for encouraging that simply because you are more able-bodied.

There are definitely days where I wish my invisible symptoms were more obvious (as in the presence of a wheelchair) just so I could drive home the message that, listen, people, I *do* have limitations and I'm *not* faking it. This is very hard to get across to people who only see a physically functional person and not the terribly fatigued, brain-fogged, migraine-riddled and randomly incontinent person I am. I am a writer and work in medicine, and my intellect constitutes a huge part of my identity; for me, losing bits and pieces of my intellectual abilities can be terribly demoralizing in much the same way losing one's ability to walk can be.

I think many times there are peers among us who are depressed and no amount of positive thinking is going to reach them, bless their hearts. Depression is a recurring theme in my family and I have been there, so I recognize its many faces. These MSers might lash out or express their own kind of judgmentalism by accusing others of "having it easy" or being "holier than thou" or complaining "easy for you to say!". Part of that comes from being visibly afflicted, which in our culture means they are more likely going to be treated differently ("put inside a box" is a great term: the same box with other weak, broken, ineffectual people who have less power in the world). That means their identity has been reduced by others to the visible symptoms of their disease and they cease to be the whole person they are even to their most cherished loved ones. Of course, not everyone is this horribly insensitive to the plight of MSers, but many many are. People can be cruel, though I still insist that this is their own soul's blind spot and not something that we, as MSers, should spend any of our very precious energy trying to fix. 

When I am having great days where my energy is 90% or better, my mind is clear, my words come easily, my head is light and unfettered by pounding, nauseating pain, and I am not worried about finding a bathroom in 30 seconds or less (!), I am so very grateful to not be someone that others can "put inside a box." 

For my part, I do yoga (which, as [Y] points out, is wonderfully adaptable to all kinds of ability), hiking and fast walking on rural roads with hills and valleys. I have severe issues with my wrists, so many of the poses I do in yoga (down dog, anybody? side plank?) are very hard to do for me because of the pain and numbness and pressure. The strength is there, but the support is lacking. Still, a good yoga teacher can give you options that work so that you can still get the benefits of the pose, as well as the breathing. Yes, there is pain sometimes, and numbness, and fatigue beyond belief even during slow walks. I remember seeing a bench alongside a park trail and really really really wanted to just lay down and take a nap, in the middle of my walk, because my head was so "thick" and my energy was so low. Who does that? LOL And the whole issue of incontinence is always a problem because I like to hike and walk out in nature where there are no bathrooms! Let's just say, I'm a girl scout now and try not to give myself too much grief if the worst happens. Not my fault! It's the damned MS.

So I just take it one effort at a time (not even one day at a time, because the status of my health seems to change hourly!). On a low energy day, I just laugh and say, Oh well, today is not my day to be 100%!, and on a high energy day, I laugh with joy that I can do everything I want to do. Most days I float between these realities and so I just laugh (unless I have a migraine, then I hibernate).  

[X], I agree with you that for many of us, the motivation is there, to do what we can as long as we still can. There is no guarantee we will be in this same able-bodied place in the future, and that is perhaps MS's biggest curse of all, this uncertainty we must live with while trying to get on with our lives. And what we are doing when we "do what we can" is making a choice: to maximize our health, to live without regrets, to be an active soldier in the war waging inside each of us, to be a whole person. But it's so very hard to care and to make the effort when our abilities don't match our will ("the spirit is willing but the flesh is weak"), so I imagine any pushback you get from those who think you are being Pollyanna about MS because your gift of athleticism is apparent and you are making the most of it is due mostly to the fatigue that comes with their struggle to do even the most simple tasks. And boy that can be very depressing and can color every action one takes without a strong mind and heart to fight back.


So try not to take it too personally if others aren't as gung ho to your message. We are all bringing different levels of ability and emotional energy to the discussion and sometimes it means others will want to dowse your flame because of it. As Kent M. Keith says in his Paradoxical Commandments, " Do it anyway." For those who are receptive or who need hope, your words are not lost, ever.


[P.S. By the way, I have Keith's PC posted on my wall as a poster... words to live by, no matter how able you are!]