[katherineann59]

Hi Caroline,
I recently turned 49 and am in my 3rd year of treatment for MDS. I have good days and some not so good and then there are those when all I do is take a long "time out" to take care of myself. I've been through many different emotions in dealing with this disease. I suppose the "moment of truth" came to me when my kidney doc (I also have PKD - a kidney disease which has me extremely close to dialysis with no hope of a transplant due to MDS) told me that the PKD wasn't what was going to kill me! Anyway, the best way I cope with this disease is to recognize and not become too overly concerned with how it limits me; instead, I try to focus on what I can do to make the disease more manageable. I focus on taking care of myself and doing what works for me. I've always been athletic and even though I am no longer able to do the same amount of exercizing/competing as I could in the past, it's a great day when I can get out for a run or a swim at whatever distance works. On those days when I don't feel good, I just take it easy. I give myself a "pity party" day once every so often. On these days, I may cry, stay in bed for a lot of the day, take a day off work and just rest. I don't allow myself to dive into the gulf that seems forever just ahead. It may sound overly simple, but it works for me. I guess I would just recommend that you be as kind to yourself and your body as you can. Find a way that helps you to feel better and create a routine that works for you with allowances for the days when you just don't feel good at all. My oncology nurses are a great help as well as are the folks that write in to this forum. I've found so much support from them as they understand a lot more about what you are going through than other family and friends. If I can be of any help, please don't hesitate to contact me.