Cathie,
My heart goes out to you for so many reasons. I am so sorry that you are not receiving the support you so desperately need from your family and friends. As "the" spouse, I feel the sadness your husband must feel, BUT, to both of you, THESE are the days of YOUR life…right now!!! Do the best you can to put "sickness" out of your mind every minute of the day and try to enjoy your life, even though it has dramatically changed. You DO have a LIFE to lead. It will NEVER be the same again, but it doesn’t meant that it can’t be wonderful. I pray that this will draw you two closer and make your relationship stronger. There are going to be many doctor visits and maybe even hospital stays. You have to find something good in these things…….the ride to appointments, the kindness of the nurses, the fact that there are people in the waiting room much worse off than you (because there always is)….little blessings along the way.
I am also sad that you look at your time now as dying. You are still alive even though your days sound to be quite rough. Have you discussed your feelings with your doctor? Perhaps they can offer supportive care for you.
I hope you don’t disregard my post because I don’t have MDS and I can’t "possibly" know what you are experiencing. True, I don’t have this disease, but I have been with my husband through this (nearly 10 years) so I feel I can offer a little insight even if it is just to give you and your husband a perspective from "the spouse".
Sometimes when we need changes in our life, we have to look to ourselves first. Start the day with a smile, a prayer, and when someone asks you how you are doing, tell them "Great!" This has been my husband’s theory through all this. He claims that it actually made him feel better, even on the days he felt like ____! Of course, you need to be able to tell your husband on the days that are really bad, that you need support.
You will be in my prayers……because it truly does change things. All the best to you, take a deep breath, put on a smile and get on with LIVING your life. This is it, Cathie, your life. Grab every minute of it!
Mary
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