Making Noises

The next PFAM [Patients for a Moment] http://patientsforamoment.blogspot.com/blog carnival, hosted by Leslie at Getting Closer to Myself,  http://gettingclosertomyself.blogspot.com asks the question:

What advice would you give, or what would you want non-chronically ill people to know about your illness and your life?

I’d like you to know:

1. When I choose to hold off committing to something until the day it is scheduled,  it’s not that I don’t want to, but rather because I can’t predict how I will feel by the time that day comes around.   I’d rather not disappoint you by saying “yes” first, only to have to jam out later.
2. When I say no, it is because I evaluated the impact your request will have on my health.  If it is going to affect it in a negative way, I  can’t do it.
3. When I say yes, and make a plan to do it in a way that affects my health the least, accept my decision, rather than complain about it.
4. Don’t stop asking. I’ll surprise you sometimes with what I can, and will, do.
5. Ask me how I am doing once in a while. And not just the superficial “hi, how are you” greeting of the masses. Note, I don’t expect you to ask every day, or even every week.  A sincere “how are you” where you really want to know the answer, shows me that you care.  In particular, when the conversation revolves around the health of other family members, including people I don’t even know, it hurts you did not include me in that conversation.  My perhaps clumsy attempt to convey how much that hurt, sadly, only made you defensive and angry.
6. I’ve learned with a lot of you, it’s best for me to keep my expectations low, so I’m not disappointed.
7. When you don’t ask me to do things with you, and you don’t contact me to see how I am doing, this tells me: even though we are family, I am a very low priority in your life.
8. When I put out a 911 call for assistance, it is not  because I am lazy.  It’s that I physically can’t do what I ask for help for; and I want to give my husband a break.
9. Which brings me to: just because I am married, it did not let the rest of you “off the hook” when I requested your assistance at the time my back pain was at its’ worst.   It hurt me deeply that you did not call, bring a meal, or offer to dust even the smallest knick-knack.  It offended my husband that you thought he could carry this burden, along with his full time job, all by himself. This lack of response played a large role in my and my husband’s decision to be less involved with you, collectively and individually.
10. Living a chronically ill life makes us stronger, smarter and braver.  Stronger because we keep on keeping on in the face of the demands our illness place on our bodies.  We are smarter because we have to evaluate everything we do, to ascertain first, if we can do it at that time, and second, how we can do it in the best way possible for us, with minimal exacerbation of our symptoms.  We are braver because, in the face of sometimes extraordinary odds, we fight like hell to live our best life. And that’s worth fighting for.

I’ll be participating in the 18th edition of “Patients For A Moment” http://duncancross.net/patients-for-a-moment/ a patient-centered blog carnival created by Duncan Cross – on February 24th.  Leslie at Getting Closer to Myself http://gettingclosertomyself.blogspot.com/2010/02/patients-for-moment-is-here-february.html is the blog host for this blog carnival.  If you wish to participate, click on the link above.
Leslie asks the following question:

What’s Illness Got To Do With It?

What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

My post, which will take the form of a poem, will attempt to answer those questions.