Sunday, August 1, 2010

Update: Post Hospital—7 Days+ 1

So much love and support has come my way over these past days: my husband's coworkers and the church family brought us meals; a group of friends spent a work-day evening reorganizing our house to make room for a hospital bed; and other hands-on help; as well as visits, cards, and most importantly prayers. It is much much easier to shift my view of 'normal' to my body as it is now with this foundation of support from everyone in our circle. It is reassuring to know that I have these people to back me up, no matter where MS leads me.
One thing that I am often asked is, 'What has physically changed?.' A common misconception with MS is that exacerbations lead to paralysis (the complete loss of feeling and function). For me, this has never been true. With secondary progressive MS, physical loss is more a steady onslaught of stealthy creeping weakness and reduced function that also varies in impact. For example, I can pick up my coffee cup 3, 5, or X number of times and on the next, my hand lets go and liquid every where. From day to day, moment to moment I never know what is going to function and to what degree. {Remitting/relapsing MS is characterized by dramatic sudden attacks}. One reason this recent episode is so scary, is that it is the first time I have had a true sudden attack of MS, in years.
So, what exactly has happened? I woke up in the middle of the night and discovered that from my shoulder to mid thigh I couldn't move, turn over, sit up—whammo, just like that. Most of the time, I stubbornly refuse to seek medical attention. Why bother when my disease course is untreatable. Doctors are trained to do something, even when faced with diseases like mine. But, that particular Monday morning, I wanted to call my doctor. To my surprise he sent me to the ER and then tucked me in to five days in the hospital.
Coming home on Saturday was discouraging. To me, the results of this exacerbation seemed unchanged. My wise husband, with his caregiver eye, was able to point out that my left arm is moving better and so is my thigh. Subtle changes that mean the fight against these latest losses isn't over.
Right now, my goal is to be able to transfer from one place to another all by myself and to ditch the hospital bed. Once I am independently mobile, I will be able to be on my own again. Physical therapy starts next week and I am ready to fight to regain some ground.
For now, my left hip remains, like wet cement, stubbornly aggravatingly near impossible to move. The left side of my torso and shoulder are slightly more mobile. I still can't sit up without slumping and occasionally toppling over. We've had some good laughs at my gumbiness. My reasoning and short-term memory don't seem to be improving. My bladder function will be determined at the Urologists on Thursday. I can and do leave my hospital bed with help from the hubster in the evenings and at night. Daytime can be bleak with facing eight hours pinned to my bed.
Visitors welcome! But, please call first, I sleep alot and tire easily. Thank you everyone for all of the love and practical support.