Then we got sick. The diagnosis of IC (and who knows what else to go along with it). And our lives were changed forever. Next thing we know we're going from doctor to doctor, seeking relief and treatments to help our symptoms. Many of us struggling for years to find the right doctor; some still looking. Tests, treatments to try. Treatments that don't work. Bad side effects to deal with. Changing course because Plan A isn't working, so let's try Plan B. As my doctor has said to me, we get put on the "lab rat wheel" and feel as though we are living our lives in doctor's offices, picking up prescriptions, going to hospitals, having surgeries. The list goes on and we find ourselves obsessed (for good reason) with our illness and everything else falls away. I'm single, but I can only imagine the challenges people with families face after finding themselves on that lab rat wheel. Something we all deal with I think, on some level, is Guilt. Guilt over not being able to care for spouses, children and homes as we used to. Guilt over calling in sick to work frequently. Guilt over canceling social engagements with friends. Guilt over going on Disability. Guilt. I hear this a lot.
But one of the things I think we all need to do is learn how to LIVE while being sick. It's not easy. But, as the saying goes, when on their deathbed, no one ever wished they'd spent more time cleaning their house. So if you are lucky enough to have a "good" day, don't blow it trying to clean your entire house, do all your laundry, go shopping, cook dinner and be super-mom (or dad).
I know I rely on family and friends for support. I know this is a challenge for many. This is one of the things that happens to people who get sick. Friends fall away. I've lost friends; I think many of us have. But I still have a very small group of friends that have stuck by me and I cherish them and the time we spend together. I cherish my family and the times we spend together at family gatherings.
For me, learning how to live with being sick has meant working with a psychologist on these issues. I don't have all the answers, but acceptance is a big thing in helping me learn to live with chronic illness. I have it; I can't change it. So how, then, to LIVE with it? That is the question.
Even if your circle of friends is smaller than it used to be, make time to be with the friends you still have. You don't have to go out. Sometimes you can just ask them to come visit and spend a little time chatting. It's amazing what it can do for your spirits, just to spend time with friends.
When we have family gatherings, I participate and I may not be the life of the party, but I am happy to sit in a comfortable chair and just BE with my family talking and being together.
I try to go for my walks when I'm up to it. Even sitting on the deck on a nice day lifts my spirits. On really good days, I may even be able to go out to lunch with a friend.
The idea is just to find things that make you happy and take your mind off being a patient. We may not be able to do what we used to, but figure out what you CAN do; then do it!
Chronic illness changes everything. Finding treatments that help us feel up to doing anything is hard. But sometimes I think it's important to stop, take a breath and try to do something that isn't related to being sick. This is something I try to do.
I have a dear friend that lives 2 hours away and I can't drive to visit her anymore. So she has happily made the drive up to see me as often as she can. She's coming again on Monday. When we can't visit in person, our latest thing is to Skype. Most new computers have a built-in web cam, but if yours doesn't they are not expensive at all. Skype is free and very easy to use. If you have friends, family etc. that you can't get to see because of your illness try Skyping. It's really fun! My girlfriend and I were on Skype for over an hour last week and she was able to show me the new outfits she bought for her new job. It was so much fun, put me in a good mood and took my mind off my pain. She'll even wait if I have to get up and go to the bathroom! That's a good friend!
These are just some of the things I try to do in order to make my life be about more than just being sick. It's easy to get caught in the lab rat wheel, but we need to try to take time for ourselves, and do whatever we can to help us cope with all we are dealing with. Letting our IC take over our lives isn't good for our IC. Stress is one of the worst things for overall health, let alone someone suffering from chronic illness.
Whatever works for you is what you should do. It's in the trying and changing our mindset. I was having a down day last week, and feeling lousy. I stopped, picked up the phone and called my best friend. It changed my entire mood and when that happens, I actually feel better.
So give it a try. Do whatever you can, or what works for you to help learn how to LIVE with being sick. IC is what you have; it isn't who you are!