Today I thought I would write about expectations vs. reality. Mine, my doctors, friends, family, work...
Ok,so I completely expected that by now, two months into the new treatment plan, I would be close to normal. I would be ready to work 8 hour days, maybe from home but still expand my hours. I would be able to transport the kids arounds. I would be able to have lunch with a friend if I was so inclined. And, yes, I would be able to sing on stage again.
While I'm pleased as punch that I have made it a full two months without a repeat visit to the hospital I feel pretty weak and tired most of the time. I can breathe and swallow but sight and strength are not regained to an acceptable level in my humble opinion. I am still having difficulty managing 6 hours of work from home without it taking everything out of me. I cannot drive most of the time due to weakness/vision issues. If I go to lunch I'm out of commission for a whole 24 hours. Forget about singing onstage, I can't even sing in the shower. I either run out of breath or my voice is so hoarse it cracks (I have had a few days where this wasn't the case but..ugg!)
I really don't know, I think we are the learning/guessing process of my disease course. I see my neuro on Tuesday and I'm anxious to see his response to my response to treatment.
Will have to post that next week
Friends and Family:
I am getting two sets of expectations, one is my loved ones expect me to be better than I am. Another is fear at how bad it really is...well I guess those fall under the same umbrella. I feel like I am constantly letting people down by not being able to follow through on things that I want to do but when the time comes I just can't.
I think my support is getting tired of picking up my slack though he does it lovingly. Thankfully while this is going on, people that weren't available to help initially are coming out of the wood work.
Same as mine listed above. They want me healthy and full service but they are being very kind and patient during this transition period.
Every day I am asked at least 3 times when I will be back full time or when I will be back on site. I know it is because people care but it is a constant reminder to me how far back I am compared to where I want to be.
I think I need to just let go and realize that I'm not steering this ship anymore - come to think of it I never was. I was the student driver for most of my life with God at the override switch. I now have to sit in the backseat and have as good of an attitude as I can while I wait to get better and trust that things are happening for a reason. Thanks for reading, having a down day after buying a phone on a 10 minute shopping spree yesterday led to the complete knocking out of my leg muscles, and this time it wasn't just my ankles but clear up to my thighs.