It's been about a year since my CK and I am beginning to realize just how far I am from normal. I'm frustrated and functioning at about 70% of my norm. I'm completely over the fatigue that haunted me for 11 months and rendered me a shadow of what I was. Melodramatic.... not a chance, the most difficult challenge I have ever faced leaving me unable to walk without holding on to something or someone. Vertigo 24 hours a day, ice pick headaches. It took every ounce of strength to work a few days a week from home. All this unpredicted by the physicians and treatment I chose.
At one year, I'm back to running at a reduced pace on my treadmill every other day, running or walking outdoors is still a big challenge. Really....Every day is a challenge, I'm working a few days each week from home, not able to work with the intensity that is the core of who I am and all I have achieved in my life. I get up every day with the intention that today is the day I return to "normal ".... But sadly, I am faced with coping with the choices I made and the unintended results. I've continued to reduce almost all my activities and outside involvements. Until I'm able to do the simplest things like walk without staggering or tripping on my own two feet or feeling wonkey all the time. It's a humiliating experience to try and be as outgoing as I was one year ago.
My hearing has remained the same +\- with no changes.
My balance and vertigo [wonkey head], even greatly reduced, continue to haunt me every day and are unpredictable. Both leave me at times unable to plan anything beyond the next few hours of my day.
My health, once a enjoyable aspect of my daily routine, has become a daily challenge to eat right, exercise and get enough rest.
After one year.....My mind, body and spirit have been through a major realignment with the unexpected challenges of CK. Each day presents new challenges as I watch life roll on around me leaving me on the sidelines to watch. I wait in anticipation/desperation for the chance to "get back in the game of life"
My experience has definitely been unique and unpredictable, 100% opposite of what I was told and the information I was provided to make a treatment decision. The CK treatment has changed my life over the last year dramatically, only time will tell if I made the "right" decision in the long run. In the short run.... words cannot express how difficult it has been to face the challenges verse expectations over the last year.
Do your homework, get multiple opinions, listen to the angels on this board find a team with experience!