CHAOS MONTH: a 4-week contest to see who is stronger... Me or the MS

Let me give you a bulleted snapshot of the next four weeks in our household. The articles marked with a triple asterisk*** indicate areas where help would be nice to receive, but the odds are only 50-50 that we will get any, even if we ask for it. Red text indicates high stress events; green text indicates... oh heck, who am I kidding... it's all red text!

I will:

• get my annual MRI (spinal and brain, so about 1.5 hours in the White Tube of Death) to see if my MS meds are working or whether my MS has progressed despite all these meds. Your guess is as good as mine.
  
• participate in a grueling day-long neurocognitive test to establish a diagnostic baseline so, in the future, if I lose my mind, at least I can prove it clinically (not really kidding, this is all about qualifying for disability down the pike)
  
• find out if I need to get wrist surgery for my arthritis/carpal tunnel issues
  
• provide some of the only reliable transportation that my daughter's water polo team ever gets to their far and away games (50-75 miles one way) over multiple days*** (at least I enjoy doing this when I don't have a migraine... but what in tarnation will they do next year without me? Seriously? and I'm not even a captain's mom!)
  
• study for and take my sleep health educator credentialing exam*** (I am getting some help but it's really that I don't have any quiet time to even study)
  
• prepare to learn an entire new electronic medical records system - which has the added reputation of being WONKY - but must pass proficiency to keep my job
  
• continue to work as many hours as I can (schedule has been highly unpredictable since February); listen, not knowing for sure when you are working (until 4pm that day) is stressful, peeps
  
• start pulling together all the communications for the sleep society fall conference, including blogging and website relaunch and maintenance (oh sure, Murphy's Law doesn't apply at all here, right?)
  
• plan a graduation party as well as get announcements and invites out and create a Brag Board and slide show for my daughter
  
• finish two essays related to sleep medicine
  
• try to keep up with several blogs
  
• complete my sleep health clearinghouse website, which is woefully behind in production

My husband will:

• perform in several private band gigs as well as our hometown parade
  
• travel to Dallas for the annual business conference
  
• power wash, restain/repaint the deck and complete other major home maintenance repairs
  
• set up for the graduation party
  
• continue to address mother's transportation and medical issues*** (we just had her SNF up her services so she will stop calling us for things they can do easily without her needs completely blindsiding us on a daily basis)

My oldest daughter will:

• complete her last season of high school water polo, which includes wild card and state tournament games covering 6 full days
  
• attend the dreaded senior salute/end of season banquet. This should be a positive experience, right? Don't get me started on the debacle that overlooked her as team captain just a year ago, and the heartbreak and ego-swallowing and self-restraint all of us here at home have had to endure over the last 12 months as a result.... Once bitten, twice shy, as they say. I'm afraid that all the work she's done for this team will just result in her getting ignored and unacknowledged like she's been ALL FRICKIN' SEASON by at least one coach. This includes her serving as an excellent leader despite not being picked as captain; being perhaps the finest team player they have (and not the hot shot who is in it for the personal glory); sharing what she learns in separate clinics with her teammates--and it shows, in the games; and recruiting nearly 90% of the current team, quite a legacy. I'm just asking the Universe... just this one night, can she be gifted an opportunity to shine that's all hers to enjoy and deserve? Can it be a chance for her to cry tears of joy, for a change? Everyday has become a bittersweet teachable moment this year... it wears on her, on us. No wonder she wants to get as far away from our small town as possible... her experiences beyond the home team have been positive and encouraging and have made her feel like she matters. Here at the home pool? Not so much. And yes, it makes me angry to see someone get overlooked who deserves better.
  
• attend prom (thank goodness she already has a dress!)
  
• interview for a scholarship
  
• attend the senior awards banquet (at least they will celebrate her accolades there)
  
• graduate!
  
• start Junior Olympics water polo training in earnest (4 days a week at a pool 50 miles away)
  
• pick up her lifeguarding job when polo season is over
  
• start physical training to be ready for Div I level water polo in September
  
• practice driving and get her driver's license

My youngest daughter will:

• attend the band end-of-year-banquet (which she also organized)
  
• vie for color guard captain title for next year
  
• complete another 4-day drum corps camp
  
• play in the band for graduation
  
• perform the winning show with Winter Guard one more time for the public
  
• prepare for a 2-month, cross-country drum corps tour
  
• attend a field trip to Wild Waves with Winter Guard

Somewhere in there is the whole emotional underlayer of:

• dealing with an ailing elderly relative who can't live independently but who won't pay for immediately available services when she can call my husband and ask him to do EVERYTHING*** (by the way, we are not the only relatives that could be caring for her, there are others who just blow off their obligations so they can take their usual 2-3 vacations a year. Yes, I'm bitter.)
  
• dealing with the emotions fraught in witnessing my oldest daughter's graduation*** (I can barely even think about this for all the other stuff going on. Yes, I feel robbed.)
  
• dealing with the fact that my youngest daughter is going to be gone ALL summer*** (I'm not ready for the empty nest yet and she and I are close as two peas in a pod; what will I do without her?)
  
• dealing with the unknowns of having MS*** (I live with this daily, but that doesn't mean it ever gets easier)

As well as the usual and sundry activities of daily living:

• yardwork*** (getting some help now and the worst should be over soon)
  
• laundry (it will lighten just by having one kid away from home)
  
• housekeeping*** (gonna start paying for this again)
  
• paperwork
  
• eating right
  
• exercising*** (literally NO TIME)
  
• sleeping
  
• medicine maintenance

After which I will probably collapse. If I don't before then...

I include all four of us in this overview because, if you are a parent, you know that all that happens to your children eventually happens through you, including the emotional ups and downs, the physical logistics and the problem solving that comes along with it all. Nothing happens in a vacuum, but more importantly, all of our kids' "gigs" are our "gigs" as well, and despite all the things slated to happen over the next four weeks, we will be there for every last event.

Sigh. Still, it's exhausting to even imagine. We have no vacation planned afterward. I am attending a writing conference for 11 days in July which will be like a working vacation, and my hubs will follow suit the next week at a jazz workshop. I will take my oldest to NYC for 3 days as a graduation gift before setting her up in the dorms in upstate NY in late August. If we are lucky, my husband and I might be able to take a night off here or there to go camping. In the absence of that, I hope to resurrect the chiminea and spend as many summer nights as possible staring into campfire.

Please cross your fingers for me that I don't have an MS relapse during the next four weeks. Because there aren't any plan Bs for this kind of stuff.

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 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

National MS Awareness Month || Welcome to MS: Here's a map, but don't expect to know where you're headed

Here's an interesting graphic I found which shows how progression (from the left) can potentially lead to the ultimate disabling symptom of MS: death.

It's a complicated map for sure, of what could be waiting for anyone with MS. Aye, there's the rub, the words "could be." You see, there's no certainty that the progression diagrammed here will lead anyone to that fatal end game on the right, nor is there any certainty that they won't. All of us MSers are doing everything we can imagine or accept to halt the progression of this disease, but just take a look at all the side trips we may or may not have to endure along the way. This is part of the madness that comes of having MS, the not knowing from one day to the next how we're going to wake up. Functional? Foggy? Falling down? How far can any of us plan in advance? Or maybe the question really should be, how gifted must we be in graciously backing out of commitments and obligations? Because of all the other things that are uncertain, there's one thing for sure: all the best laid plans o' mice and men are not going to matter one iota if we wake up one day unable to move, to see or to think.

I consider myself fortunate, somewhere stuck in transit between the minimal and moderate impairment tracks, as I have tremor, bowel, fatigue and cognition issues, but mostly I'm focused on managing my symptoms at work, refining relationships with those in my support systems, and working with my DMTs to prevent future relapses. It's pretty much all I can do to keep up with my roles as mother, wife, daughter and employee while trying to outlast the war inside my body. Still, I'm nowhere close to the right side of the MS subway map. Now there's a bright side!