April 24, 2009

The MS Nurse, and the care team

There are two quiet angels working with me on this MS life. One is a very serious sounding lass from the MS Clinic who, I'm sure, must go home and strangle hamsters or stomp ants or cry endlessly because her life is filled with people like me calling and telling her how awful life is today and why won't it get better and when can I get some help and why aren't you taking this seriously when my life is OVER, OVER, completely OVER. She has an astonishingly calm voice that makes me wonder about quaalude use. But she's a lifeline, a source of the arcane knowledge needed for managing this disease. And she returns my calls and for that reason I am developing a fondness out of all proportion for her. I am worried about her day to day life, about how she destresses...I am starting to think of how I can cheer her up when I go for my next appointment...
My other angel is the nurse from the drug company that owns my "Disease Modifying Drug". At first, I was worried her job was to force me to continue with the medication, and as the weeks passed and all I had to show for it were welts and itchy places and maybe a slight cognitive clearing, I grew to fear her call, too. She's a cheery lass, not too cheery as that just wouldn't be appropriate (for some reason everyone involved with MS talks to us in tones of care - either they are terribly sorry for us or they fear we'll go ahead and burst into tears. They have voices similar to funeral managers...which is NOT encouraging...). She calls every month to see how I'm doing. Usually I whine at her too, although she has a sense of humour so I at least try to whine in a funny way. She laughs at my jokes and that makes me feel better.
This month, though, I couldn't wait to tell her about my walking - how I can do it for quite a long time now without pain or cane. I was so excited to say something positive for once! She was cautiously optimistic, but when I went on to say, "But when I feel good, I think I should go back to work", she demurred. "Many people," she said. "find that the liberation of not following their former path leads them to much healthier lives overall. Being able to avoid the stress of working fulltime allows them to remain well, and they often get a chance to do those things they always wished they had." I snorted. "You mean - like eating macaroni five days a week?"
She laughed, but stayed firm on the doing what you love thing.
It's a sign. So heigh ho, heigh ho, onwards I go. Can't ignore advice from an angel...

No comments: