With all that's been going on with my son's worsened medical problems, plus all the usual challenges of my own, things have been tough for me lately. I have been feeling even more overwhelmed than usual, my to-do list packed with medically-related urgencies (call doctor #1, fax doctor #2, e- mail doctor #3, order supplements, refill prescriptions, pay bills, etc., etc.). In addition, at this time of year, I am usually planning and looking forward to some fun vacations for our family - spring break, a 3-week summer road trip, a few camping weekends - but I realized that this year, between my younger son's soccer and school schedules and my older son needing to take a class during summer session (and none of their school breaks matching up), we don't have a single full weekend when the four of us can be together until mid-July....and then we will only have about two weeks when there is nothing else scheduled. It was a depressing and frustrating realization.
Feeling so overwhelmed and with no breaks to look forward to really pushed me past my limits. I was talking to a family member, hoping for some empathy, and instead I got some breezy throw-away advice, including "been there, done that." These interactions just added to my stress and sent me over the edge. I got so angry and fed up...and of course, those negative emotions only made me sicker. It's a vicious cycle.
I've written here before about the challenges of helping friends and family to understand the bizarre world of chronic illness that we live in, a world where every moment of every day is ruled by The Illness and where positive-thinking aphorisms often just don't apply. I know I am fortunate. My immediate family - my husband and my two sons - of course understand because they are living with the very same restrictions and limits (mine as well as some of their own). And my closest friends who live locally also understand - some of them are dealing with their own health issues (with themselves or their kids) and others are just wonderfully compassionate people who have spent enough time with me to "get it."
The bigger challenge lies with my extended family, none of whom live in the local area. They only see us a few times a year, so they don't understand the daily restrictions and limits that rule our lives. They see us for a couple of days when we are pushing ourselves to keep up and enjoy our time with them and don't see the resulting crash afterward. I wrote a bit about this in my post, The Invisible Illness . I thought that after 12 years of my living with chronic illness, they at least understood to some degree. But they don't. They think that my life, as a wife and mother with two teens, is the same as their lives are/were. Sometimes, they think I have it easier because I "don't have to work."
Most of the time, I try to make the best of the limited times that I spend with my family, ignore the minor misunderstandings, and maintain good relationships with my family members. Early on in my illness, I went through some very difficult times with my family, as I explained in this post on family . Many of my family members struggled with denial at that point, and things got bad and really hit bottom. It's better now (with most of them), and I decided that having relationships with my family was very important to me. All I need to do is think of one of my oldest friends, who lost her mom to cancer when we were just teens who once said to me when I was complaining about my mother, "I would love to have my mom around to drive me crazy." She's right, and I try to remember that and keep things in perspective.
I also know that negative emotions like anger, bitterness, and resentment not only eat away at me - like they do with anyone - but also make me much sicker. I've seen that effect first-hand many times, including this week. Re-reading this blog post about misunderstandings and misperceptions helps - it reminds me that sometimes the problem is mine, not theirs, and that I need to be careful not to jump to conclusions. I know all that rationally but sometimes my emotions still get the best of me.
So, I try hard to let go of bitterness and resentment, and I try to remember how much my family means to me. But sometimes, like earlier this week, it's just so hard to do. I've also noticed that I tend to be hardest on the people I love the most. Feelings of resentment tend to spring up most with my husband and my mother - the two adults I love most in the world. Why is it that we are able to be so much more forgiving and understanding with casual acquaintances and we expect so much more from those closest to us?
I know I need to learn better how to let go of resentments and how to forgive and forget, but I don't know how to get better at those things! If anyone out there knows of any good books or other resources on these topics, I would love to hear about them.