Here are some random bits about my experience with chronic invisible illnesses.
1. I am living with fibromyalgia and complex PTSD. I was finally diagnosed with fibromyalgia in 2005. The diagnosis of complex-PTSD came in 2018.
2. I’ve had symptoms since childhood; the fibro-flare that really sent me looking for answers came in 2002.
3. The biggest adjustment I’ve had to make is learning to cope with all day-to-day changes. If I do too much one day, I could be hugging the heating pad for days to recover.
4. The hardest part about mornings for me is not knowing what symptoms will be with me throughout the day. It makes planning very hard—the evening before, I may have a list of things I want to get done the next day. I have to stay on schedule as well. If I don’t get to bed at my usual time and get enough sleep, I pay for it over the next day or two.
5. In recent years, medical professionals have taken Fibromyalgia more seriously, but research gives us so much new data that I fear it is getting lost again. The list of symptoms of Fibromyalgia is so long and dynamic that it makes it that much harder to pin down. The intensity and amount of symptoms vary among patients so widely that getting effective treatment is a long trial and error journey.
6. My symptoms vary over time, and I have a terrible habit of not keeping track of them for short periods of time because who knows if it is related to Fibromyalgia or just a meal that didn’t sit well. I fall a lot – I have no balance and very little coordination anymore. I have chemical, audio, and light sensitivity that can bring me to a full halt with a mere whisper or hint of a fragrance. I have tingling in strange places, and it travels. It will be in my lower back then the soles of my feet. Headaches, insomnia, and unbelievable pain from things like the sheets’ weight on my skin at night. I bruise so easily, and frequently I have stopped trying to figure out where they’ve come from.
7. I’ve worked very hard at finding a protocol that works for me. Traditional and non-traditional treatments, prescription medications, proper scheduling, environmental factors, and stress management are all tools in my treatment plan. While I have incorporated some alternative treatments into my protocol, I am very wary of anything that claims to cure or reverse the effects of fibromyalgia. Snake oil salespeople have always preyed on desperate people that would do anything to get better.
8. I now believe that I have had Fibromyalgia all of my life – with minimal flare-ups until after my parents died in 2002. I think it was all written off as “all in my head” or something else. Walking short, Volksmarch trails could bring me to tears; I was in so much pain. The end of a 5K walk for a healthy 9-year-old should NOT result in so much pain she can barely finish and so sore after she can’t move. Lifelong insomnia and strange tremors, tingles, and twitches before I had just written off because doctors never found anything wrong with me. Great heart, good numbers, “you’re healthy -just get off the couch” … Seriously, one quack told me this. While I was running the house, helping LK run his business, and working full-time at high stress, never sit down for a moment job.
9. The hardest thing to accept about the reality of chronic illness has been embracing the things I am still able to do without losing myself in the grief over things I can not do. Because of Fibromyalgia, I had to give up working with animals. I miss working in a barn and caring for large animals. It is too physical, and my body can not handle it. At any given moment, I am in pain. The level and intensity vary, but it is always there, and I have just learned to cope with it. But, since there isn’t much we can do to fix it, I don’t like to complain. I only wish that people would have a little more empathy and patience.
10. My illness has taught me that not everything needs to be done to perfection. Instead of insisting things be done the way I would have done them, I am grateful for completing the task. The one piece of advice I would give anyone fighting illness is, above all else, listen to your body.