Sunday, July 25, 2010

And now what?

This is a short update, because my hands and brain seem to be on separate planets, may pain level is through the roof, and frankly, these past five days have knocked me for a loop.
Every time I think I have MS's course through my life figured out, it tosses me on my rear end. I woke up last Monday at 1am with a medium size stone gargoyle sitting on my left hip. I was pinned like an inspectable bug and further testing demonstrated that from mid-thigh to shoulder my body seemed to be immobilized. In my sleepy state it didn't make sense why I couldn't roll over or sit up. Eventually, I began to let the reality of a new round of MS Life begin.
Monday became even more exciting with a call to my Neuro, a long stint in the ER, followed by a five-day stay in the hospital.
After a course of steroids, endless poking and prodding, and the general annoyances of hospital life; I am right back where I started. Pinned. To. The. Bed.
They sent me home with the gift of a foley catheter, so I am having to learn to drag a bag of pee with me wherever I go (pun, pun, pun). My neuro says he will see me in a month, nothing more they can do.
For real? This is life now? Did I actually think I knew the worst MS could dish out?
I will write more later as my brain begins to assemble the pieces of what this means. Too many worries and 'to dos' Back to bad television and monitoring my catheter.

Friday, July 9, 2010

The Bad, the Normal, & the Hilarious

So, somewhere around 3pm yesterday, as I was wading my way through a persistently and pervasively rotten day that started with an alarmingly sick dog; a mad dash to the vet; drifted into bills I couldn't think how to pay; stayed mired in heat, a cluttered house, the annoying ache of cramps; and a phone that just didn't stop ringingit hit me that not a single one of these things was connected to MS. And with that one thought my 'bad' day went from trying and failing to resist the siren song of emotional eating to the soul satisfying balm of how good it felt to have a normal bad day.
My previous post is as real as it gets in talking openly about my 'MS world.' Writing it was like inviting my reading audience over for a tour of my garden and taking a side trip into my messy basement. I keep my MesS hidden most of the time. It is my experience that folks just don't know how to respond when I am that transparent. 
One of the wise people in my life, after many years of counsel and support, 'fessed up' that he struggled with how to talk with me since our 'normal' seemed so out of sync. A day later, another wise person shared that a few years ago he made a conscious decision to stay connected to people who were facing things like cancer. Rather than fading from the person's life and assuming that that person's new 'normal' was so altered from his that they no longer had common ground. He puts this belief into action by regularly driving two hours to visit a friend who has Alzheimer's and stopping by weekly to simply hang out with me. 
How then to relate to someone whose 'normal' seems both tragic and, on some level, too overwhelming to face? Everyone has a degree of mess in their life. Some people have signs on the doorway leading down like cancer or MS, that make one person's mess seem worse than another's.
As a person with a notably messy basement, a few suggestions are:

  •  my 'normal' while seemingly worse than some, is just that, normal to me
  • don't assume that we can't relate simply because I seem comparably messier. 
  • Know that, no matter how upbeat I may appear to be, the impact of MS with depression and loss and pain is always present. 
  • I need people in my life, more than that, I need people to make a deliberate effort to stay involved. It is draining to have to ask for water, for rides, for more things than I can list. Tromping around in my mess isn't fun, but it is needed.

My normal bad day improved with my dog coming home; a cold beer; and a long evening of vegging on the couch with the occasional chuckle about how good normal bad felt. 

This morning got off to a great start:
Someone flocked our house, that is donated to my church's youth program to come over and cover my yard with pink flamingos (a fundraiser). What a hoot! And an entirely new definition of normal. 

Thursday, July 1, 2010

Would You Like Soup With That?

Imagine a lovely pot of perfect soup; beer cheese, beef stew, clam chowder, simmering gently on the front burner. Maybe rolls warming in the oven, the table nicely set with crudites, soft butter, and those new flat bottomed bowls that are more like plates. All is carefully ready for a truly delightful lunch.
Who am I kidding, any way? Or trying to appease? Too much salt has ruined the chowder, the rolls are freezer burned and rubbery from the microwave, and the table is stacked with dishes from yesterday, if not last week.
That annoyingly simplistic pharmaceutical ad asks, "What Does Depression look Like." Followed by a parade of somber folks sitting lumpily on the sidelines of life. Each could easily be identified by the imaginary 'life sucks' banner that hangs over their heads. Frankly, it would be great if I could be that out there with my internal world. I say I am hanging in there, I act happy, I do normal things. Do I have people fooled? What does despair look like? What does rage look like? 
I am tired. The deep in my bones kind that sleep doesn't touch. I am sad. And, for once, I can't seem to find words to express it. I am bored, lonely, etc., etc., etc. Who wants to hear it. I certainly don't.
I'd rather have a lovely cup of soup and a slice of crusty warm bread with a pretty linen napkin tucked under my chin.
So, paste on smile (check); rehearse the appropriate and occasionally clever responses, (check); and wonder if I am fooling anyone.