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Seven Things That Blindsided Me When I Became Ill

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As I imagine would be true for most people, chronic illness took me by surprise. Here’s seven ways in which fibromyalgia radically changed (overtook?) my life:

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 house 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, you get a nap or a good night’s sleep, and you’re re-energized. 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 sit in the car 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 and energizes them. For me, it’s just the opposite. I become more exhausted.

5. An unmet need for community

I’m so thankful for the gift of social media. It has connected me to a community of amazing women, who are also chronically ill. 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 question it. Am I really sick? Do I really have what they say? 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. Getting 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 have been strengthened and challenged in ways I never could have anticipated. It has mellowed me and made me a more compassionate person.

Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.

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