For those of us who have been struck, often in the prime of life, with a chronic, invisible illness, the guilt we carry can be almost as bad as the disease itself. Guilt for not being the parent we wanted to be. Guilt for not being able to go to parties, weddings, birthdays. Guilt for not keeping our houses clean, for not being able to work full-time or half-time or maybe not even long enough to cook dinner, for not being as FUN as we used to be. I have sometimes wondered if I would feel this guilty if I had a more visible disease, and being a mother, grandmother, sister, daughter, aunt, employee, and friend, I kinda think I would.
In my own fibro group I often tell others to give up the concept of Supermom, learn to relax and love yourself anyway, I know as well as anyone that it’s much easier said than done. Many of us are raised by hard-working parents, and we have been hard workers ourselves. It’s common to hear from teachers and parents, work hard and you can achieve anything you want. Then you can’t work hard. Sometimes taking a shower is a successful day. Not long ago my son called and asked if I could babysit for an hour while he ran errands, it was hot, and rather than drag 2 toddlers in and out of the car it’s much easier to bring them to me, next door. I said of course, then remarked I was glad he called because I was about to get in the shower, he said, “take your shower mama, I’m not in a hurry,” which made me a little sad… after all this time he still thinks I can take a shower AND babysit, in the same day, once in a while I can, but it’s rare… so rare.
We have to figure out a way to help others understand our limits to keep us healthy as possible, when we don’t always understand them ourselves, not as easy task. You may often hear others say how they felt terrible when they had flu, but they got up, got dressed, and enjoyed the day. You know what? Good for them. It doesn’t work that way for us. When I say I cannot get up, I cannot get up. I have forced myself, or tried to, sure. Who hasn’t? Fall down enough times when you’re pushing yourself and you will learn to listen to your body a little more.
Instead of continuing to make excuses we sometimes push ourselves, to give someone we love a perfect holiday, or a great birthday, or an awesome vacation. When we have good days we may do way too much, to make up for the days we can’t do anything. Here’s something new loves, you can’t make up for that… and this may completely blow your mind, but … YOU DO NOT HAVE TO!
Work on this with me, if all of us, with chronic and autoimmune illness, learn to respect our bodies and their new limits, and unite in our brokenness, and say enough, stop making me apologize for something I cannot help being. You did not become sick because you wanted to. You do not miss school plays because you want to. You do not call in to work because you are lazy. You’re sick. Acknowledge it, bless it, and move on. Yes, bless it. Love it. It has taught you that you are stronger than you ever believed you could be. Every day that you are alive you are an incredibly strong FIGHTER! People still love you, even if you can no longer do the things that you have always done. Work around it, because you deserve the best you can get. Here are a few tips to get you through:
- Make friends with fast, easy, healthy recipes. Keep ingredients on hand, teach someone else in your house to cook them. If you live alone it’s okay to eat fruit and yogurt or cheese and crackers, I promise.
- Occasional take-out will not hurt anyone
- Let someone younger and stronger take over hosting holidays and birthdays, contribute however you are able
- Invest in a video camera, or use the one built-in on many phones, tape school programs and sporting events, watch them with your child when you feel up to it, make it a fun, bonding experience
- Treasure every moment that you are alive, even the days that you’re in too much pain to do anything, baby yourself on those days, watch a movie you love, read a book, play games on your computer, eat some chocolate, and allow yourself to be sick without worrying about the world
- Tell everyone you love how much you love them, then show them this, buy them a book about your disease so they know how they can help
- Love yourself, it’s okay, you are beautiful and strong in your brokenness
Love & Hugs… Mama Steph
