Chronic illness is different for everyone who suffers from them, and yet the similarities are comforting. We have left the world of “normies” and have entered the world of “spoonies.” I have fibromyalgia and am hypothyroid. I also deal with some of their “friends” such as IBS, depression, weight gain, and fatigue.
7 things that blindsided me when I became ill
1. I was unprepared for the unrelenting fatigue.
I was used to moving furniture around, taking my kids places, cooking, and cleaning my home. Chronic, unrelenting fatigue put an end to all of that. We live in a small home now where the furniture pretty much stays where it was originally put. My children are grown and out on their own. My husband does the cooking and we recently hired someone to do the cleaning. I just want to clarify that fatigue is not the same as being tired. When you’re tired, getting a nap or a good nights sleep, and you’re reenergized. With fatigue, no matter how much sleep you get, there is no relief.
2. I did not anticipate the loneliness
I was used to a busy household with teenagers coming and going, the noise, and the comfort all of that brought to this mama. Now that it’s just my hubby and me, well it gets really lonely for me and way too quiet when he’s at work. Friends are too busy with their own lives, and I understand that. They may think people come and hang out with me, but the truth is they don’t. I’m so thankful for my sister who comes and hangs out with me at least once a month.
3. Shopping has become an endurance sport
I always loved shopping, especially grocery shopping. Now on the days when I feel good enough to accompany my husband, I usually have to go out to the car to sit while he pays. My energy has once again been depleted. It can take hours and sometimes days to recuperate from a 30 minute shopping trip. I’m so thankful that my husband lovingly steps in and does what I can no longer do.
4. Showering needs perfect timing
I need to take a shower (when I’m able) at night because it totally wipes me out. For most people, taking a shower wakes them up and energizes them. For me, it’s just the opposite. I become more exhausted.
5. An unmet need for community
I praise God for the gift of social media. It has connected me to a community of amazing women who also have chronic illness. It’s a community of mutual suffering, understanding, and compassion. Belonging to and facilitating groups on Facebook has given me an important lifeline of connection.
6. It lies to me
Most of the time I’m very aware of how ill I am, but on those good days I find I question it. Am I really sick? Do I really have what they say I have? Maybe I’m getting better! Then the weather changes or stress enters the picture and once again I’m reminded of the truth. I truly am sick. But I’m SO thankful for those good days.
7. Advice that’s not helpful
I know most people come from a place of caring when they make suggestions or give advice. But it’s usually not helpful, and can make me feel worse. Such as: maybe if you change the way you eat, exercise more, get out of the house more, get a job, you’ll feel better. They also want to know if you’re feeling better yet, not understanding that “chronic” means lifelong. It’s better to seek to understand than to give unsolicited advice.
I travel this road of chronic illness with fibromyalgia and hypothyroidism in my backpack. My map for this journey is prayer and good books. My sustenance are the friendships I make along the way. I have been strengthened and challenged in ways I never could have anticipated.
My name is Robin and I have been chronically ill for awhile, although I was only diagnosed about 6 years ago. I have a Facebook group and website called In Spite of My Illness. I am on multiple social media platforms as @RobinRisesUp. My email address is: firstname.lastname@example.org