These are the Days of Our Lives



How many times have I been asked by friends, family and doctors “How do you pass the days at home?  What do you do?”  Really what do I do but the time still passes.

I have been in since Wednesday and what have I accomplished and why don’t I feel rested and raring to go?

Each day consists of little activity, lots of rest and this is the cycle I find myself in.  I don’t watch television at all during the day and I do limit my internet time as it exhausts me too.  If I look back at what I accomplished in the past 2 days, it would have to be doing laundry and dusting.  How can I explain to a healthy person, that doing laundry is my activity for the day and add in a shower and I’m done. That’s it, no more spoons left.

It really is hard to explain to others, what I don’t understand, yet seem to accept. I have accepted where I am in life right now and there are days that frustrate me and torment me, but they pass and then I am alright again.  What I find harder to accept is when people say, “Don’t you get tired of going to the doctor” or “Don’t you get tired of resting?”  Lately my response has been what rational person wouldn’t, so why are you even asking me that ridiculous question.  If I have accepted my life and current situation why can’t some people around me accept it.

Happy Birthday to M.E.


Four years ago, on my birthday, I was diagnosed with this dreaded illness. At first I was relieved to finally get a diagnosis, but once I did research and found out about what this illness is, relief is not the emotion I felt. How can you be relieved to have an illness, where doctors don’t know a definite cause and therefore can’t give you something to cure it? Managing symptoms is helpful, but it doesn’t necessarily restore your life back to the pre-illness state.

Over these four years, I haven’t been able to move forward with my life. At best, I’m treading water and hanging on for dear life. The world around me is moving fast and my friends have advanced their careers, had children and even some grandchildren, there have been vow renewals, new marriages, divorces, ups and downs in the normal cycle of life, but really I haven’t experienced much of any of these things, as I go from doctor to doctor hoping that one of them will give me something to make me feel better. Even a ray of hope that a research study is underway would encourage me, but so far this illness really mystifies most.

After this length of time, people don’t want to hear about my troubles anymore and I do my best to down play my situation when I am with people because I’d rather hear their stories than share my own. If someone asks about my situation, I will briefly discuss it, but if they don’t ask I usually don’t bring it up. Except recently, I was with a very close friend who had been complaining to me nonstop about her own situation (and let me tell you from where I was sitting there was nothing to complain about…she had health, a good paying job, 2 great kids, a home and the ability to make choices in life) and when there was a break in the conversation I said that it’s been a while since you asked me how I was doing. Her response was, “What’s to ask, nothing changes with you, it’s the same day to day. It’s like a man that loses a leg. At the beginning it’s shocking and you keep asking how are you doing, but after a while he’s just a man without a leg and you stop asking.”

I have plans to meet a friend for lunch today to try and celebrate the day, but in truth, I don’t really feel much like celebrating life at this moment. I accept my situation and deal with things as they are put in my path, but being happy about it is a whole other story for a whole other day.