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What to Remember on Bad Days With Fibromyalgia

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I miss the body and mind I once had. I used to have a “promising future.” Once upon a time, I worked two jobs while also going to school, full-time, studying two different majors. Ten years ago, I had a career in cosmetology, and absolutely loved coloring, cutting and styling hair. I envisioned a long future with advancement in the industry. I had a busy life with family and friends. My vocabulary was extensive, and I could hold my own in just about any discussion. People called me to find solutions to problems, and I was able to help people who were having hard times. I could go for days without sleep,  or only have a couple of hours, and still be fine. My energy level was always pretty high, and I was rarely still.

Then, around 22 years of age, after having my first child, my body started drastically changing. It was like someone had flipped a switch, and everything started going wrong. I was diagnosed with mononucleosis and pernicious anemia at first, since the most obvious symptom was my complete lack of energy even with proper sleep and nourishment. As it progressed, it seemed no matter what I did, I would always end up in the hospital in pain,  dehydrated and malnourished. There were weeks when I would feel a bit better, then it would hit me like a truck again. I was eventually given more diagnoses, and more treatments for each, while still continuing to working in a salon. I struggled to handle each day, but was making it work.

Shortly after having my second (and final) child, with many complications and a premature delivery, I had to have surgery to stop the bleeding after birth. A few months later, I had to have another surgery to remove a cyst and part of my ovary. I was still working even after these surgeries until I started having too much pain from even more medical conditions. With each new development, more of my old, energetic self disappeared. I’ve now had 15 surgeries, and after each, I feel like I never come all the way back. I’m always a little more tired after each, and in a little more pain. I’m 38, but feel like what I imagine it must feel to be in my 70s or older. I know I don’t feel like the average 38-year-old. I’ve felt much older than my age since my late 20s.

It’s exhausting most of the time, and embarrassing more than I like to admit. Somewhere in my mind, the intelligent, well-spoken, logical part of me knows that my inability to do the things I used to isn’t in my control. It isn’t something I can work to improve, or continue my education to further my progress. Even if I do absolutely everything perfect in my power, my body will still do crazy things. I will still have pain flare-ups and days where the nausea is so bad I can’t really move. My kidneys will still produce kidney stones, even though I only drink clear liquids and have changed my diet in every way I can. I work better with things I have at least some control over.

It has been extremely hard for me to accept that which I cannot control. I don’t think I’ll ever be able to just accept it and not have days where I struggle with it, but I have accepted it to the extent that I at least don’t struggle with it every single minute now. I do sometimes grieve for the mind and body I used to have, but, I’ve also decided that I would rather someone like me have to deal with it than someone else. I struggle almost every day to not feel worthless, but I’m still here.

On really bad days, my kids get me through. The yearning to see them grow up, and make families of their own, is sometimes the only reason I’m able to lift myself out of bed. My need to stick around for them throughout the trying times of early adulthood keeps me from letting myself be completely emotionally devastated by any of my medical conditions. I’ve learned to take new issues in stride, even sometimes with humor, because why be all doom and gloom about it? Being depressed or constantly worried is only going to make things worse. Making things worse will not help me, or my family.

I’ve had so many medical issues happen that I actually forget about many of them on a regular basis. At one time, I kept an organized list for doctors (probably should go back to doing that because it makes their life easier), but now I mostly just tell them to look through my medical records because stuff “falls through the cracks” with my brain fog. I often have serious trouble finding the words I need. When writing, I used to barely need to do a rough draft because I could write it almost perfect the first time around. Now, I have to do at least two drafts, many times even more, to get it right. Frustrating, but not devastating. It was, for a little while, then I gave myself a “talking to.”

See, even though I have to do things in a completely different way, I’m still working on being useful where I can. It’s taking awhile, but I’m slowly finding small things I can do to still help people, and even some to make a little bit of income. The income part is helpful since it’s pretty hard to find an employer that will let you work only four hours or so a day, maybe three to five days a week. That’s the type of schedule I need to prevent overdoing myself. They’d also need to give me the flexibility to go to doctor appointments and to be occasionally admitted to the hospital. Yeah. Good luck with that, huh?

I’ve learned (the hard way) that living in denial and pushing my body too far does nothing but make the long-term situation even worse. So, I look for every little way I can to still feel useful. If you have this same problem, you understand how frustrating it can be to realize that all the plans and goals you used to have, now have to be drastically adjusted based on what is going to be physically possible.

When I was told I had all these medical conditions that would eventually progress, I imagined I at least had some time before they really caught up with me. Well, that’s not exactly how it went. For the first few years, it did go kind of slowly, but then I went through several months of very high stress and working many overtime hours in customer service. Flu season was also during this time, and of course, I caught everything going around. I ended up having to leave that job because I spent too much time admitted to the hospital. I never bounced back from that stretch, and haven’t been formally employed since. That was a little over two years ago. Those two years have taught me quite a bit about myself. I’ve struggled, in more ways than one, but I’ve survived, and I’m working on figuring it out.

Even though it may be hard, don’t let the feelings of depression and worthlessness consume you because you are not those things. Having a chronic illness does not make us worthless, it makes us learn to be stronger, and forces us to figure out a different way to contribute to society. Search for those little ways you can still feel useful. Write articles, lend a compassionate ear to a friend, petition your legislators about a cause close to your heart – there are so many ways to still have an impact on the world, and those around you. Take advantage of them, and make yourself feel better while doing some good in the world, but always remember, you’re never worthless.

Getty Image by Victor_Tongdee

Originally published: March 22, 2018
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