Tag: chronic fatigue syndrome

“Hidden” illnesses like Fibromyalgia are real, and those who suffer from them are working harder than you might think just to be “normal.”

If someone has fibromyalgia or another chronic fatigue condition, they are probably trying a lot harder than it looks. I try not to fence myself in with limitations, but sometimes doing what everyone else takes for granted requires a tremendous amount of strength. They are not holding back. They are not lazy. They still love you even if they can’t keep up with you.

This might sound obvious, but as someone with an “invisible” illness like Fibro, I’ve often been called crazy, unmotivated, or lazy. I, in fact, have matured with two invisible conditions: Fibromyalgia/Chronic Fatigue and being transgender. It often felt like I was living a lie because I had to conform to a society that was not built for me. But the reality is that any society that tells its children to not be themselves is a lying society.

I’ve made tremendous progress, and you can get over illnesses like Fibro, but you will likely have to be vigilant about roughly 20 different things in your day just to be “normal.” I’m surprising myself these days with my normalness. It feels great. But I’ve still had to deal with people not understanding me and giving me shit for not meeting their expectations. I guess I know now that those people are not right for me, and I have to find people who do understand what’s going on inside of me. Some people will never get it. They won’t see the 20 things you do every day that they don’t have to do. Or they’ll tell you that “everyone has problems,” and focus on what you can’t give them rather than what you do give them.

Live and learn I suppose. These conditions have made me an alien, a stranger in my own land. But honestly, I’m pretty glad about that reality because I do not want to be an average sleep-walking American. Getting through the alienation and struggle has made me a better person. It has been a steep climb, but now I know it was what I was born to do. There is something else invisible in everyone: a deep well of strength that can carry you forward through anything as long as you persist. And persist I shall.

Surviving Fibromyalgia: How I’ve dealt with this overwhelming disease

Fibromyalgia is a disease that causes severe yet mysterious symptoms and effects 3-6% of the world population. It is as serious as Multiple Sclerosis (MS) or any other autoimmune disease. However, no lab test has been developed for its detection at present. Someone who has this disease is not just being lazy or cranky or hysterical. Also, it affects women predominantly which makes it easier to write off by the largely male medical establishment. It has disabled me since I was 21, but I am a survivor.

To adapt to this frustrating reality, I’ve had to learn boundaries for myself. People have called me selfish, for example, for getting the extra amount of sleep that I need, but I know that if I don’t get that sleep, I will be a mental zombie and in serious pain. It has been excruciatingly hard to hear loved ones complain that I didn’t care about them because of the limitations of my fibromyalgia. Yes, there are other things that contribute to my fatigue. It’s not all because of the fibromyalgia. But quite a lot of the time it is. Here are the symptoms I’ve lived with for 20 years:

  1. Widespread muscle and joint pain that doesn’t respond to painkillers and feels like electric shocks shooting through my body
  2. Poor circulation and numb feet and hands
  3. Unrefreshing sleep (sleeping for 8 hours and waking up feeling like you slept an hour)
  4. Insomnia
  5. Chronic fatigue and weakness
  6. Confusion and memory loss
  7. Prostatitis and chronic UTIs
  8. Depression and anxiety (full body anxiety if that makes sense to anyone)
  9. Total energy breakdown after major stressors, needing to sleep for days to catch up
  10. Digestive problems
  11. Poor wound healing
  12. And more!

When I got the disease at 21, I knew that I felt strange, but I didn’t really look different, and my tests were all “normal.” So they told me it was just allergies and that I should see a therapist. I remember hearing loved ones reject my complaints as nonsense. If I was diagnosed with MS at 21, I would have been showered with assistance. Instead, I had to walk alone through the desert, trying to feel better and dealing with my inability to keep up with others through Herculean efforts. Then, when I was 30, I found a good treatment for my condition, Dextromethorphan, which is the primary ingredient in cough medicine. It is now being studied for fibromyalgia as an effective treatment, but at the time it wasn’t. So when loved ones found out that I was using cough medicine, they treated me like a junkie and ostracized me. I was also denied Social Security disability payments because they said I was a cough medicine addict. I had no other treatments at the time, and so I used what I could find to survive. It was medicine.

Now, I know without a doubt that I have fibromyalgia, not because of a fancy lab test but because I have found treatments that eliminate 80% of my symptoms. I know what it’s like to live mostly without the disorder after suffering with it for 20 years. I’ve had to find these treatments outside of the medical establishment, but thanks to my gods, guides, and real friends, I’ve been able to forge a path to health.

I still have really bad days, like today because of an avalanche of stressors that have overwhelmed me. But I know that I can at least survive. I have 20 years of debt and baggage that I have to drag behind me, because when I had no answers, I had to go into debt to survive by purchasing countless alternative treatments out of pocket. And on top of this, fibromyalgia definitely contributed to my losing court battle for visitation with my kids because being attacked for being transgender in court led to full body breakdowns. I can’t deal with stress like the average person. My whole being breaks down. And yet, here I am, a survivor.

There is no fancy ad campaign or “would you like to donate a dollar to fibromyalgia research?” at the grocery store. We as a tribe have had to find treatments for ourselves. My chief treatments are meditation, low-dose naltrexone, lyrica, exercise, vitamins, herbs, sleep meds, CBD, dextromethorphan, a TENS unit, and self-compassion. I’ve had to learn that surviving is ok. I don’t need to be whatever “success” society is telling me I have to be. I’m pretty proud of myself for just surviving to this point with this condition, let alone my being born transgender and bisexual which complicates this to another level entirely.

If someone tells you they have fibromyalgia, listen to them, because it is an important admission. If someone said that they had cancer, you would give them your open attention, so I urge you to do that with this condition. We need help. We are suffering. Some of us have found a patchwork of solutions to get a modicum of peace and stability. But others haven’t.

Because we are not able to withstand the thousands of daily stressors in modern mechanical/industrial society, we often have internalized shame because we cannot contribute to the collective productivity as much as our fellow citizens. But, I have had to accept that sometimes, I’m going to let my boss down; I’m going to have to call in sick more than the average person; and I’m going to have to listen to the voice in my head that says “fuck them, you need to rest!” There is such a feeling of alienation in modern America when you are viewed as someone who is not being a proper slave to the machine. Most people wouldn’t state it that way, but when you’re on the bottom, certain realities of modern society become glaringly obvious.

If you have this disease, be strong, keep fighting, and don’t close yourself off to love. It can be overwhelming. It can be frightening. It can be awful. It can fill you with rage and resentment. You might look at others and be jealous of the health they take for granted, but I don’t think this will help. I’ve been there. It hurts. This is hard. But peace is a wonderful medication, and it requires letting go of resentment. I try to do that every day. People give me shit for things I can’t control, and I get back up and keep going and don’t forget to laugh and smile.

As Martin Luther King Jr. famously said: “If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”

Keep going. In surviving this disease, you can learn lessons about existence that others can’t. I’ve learned acceptance. And now I know how to love.

What I’ve Learned from Living with Chronic Illness

Antibiotics are chemotherapy. The word antibiotic means anti life. I have to take some antibiotics right now, and the side-effects are really heavy. I’m feeling very low and drained. But I think it’s the right decision, because I have prostatitis which is related to my fibromyalgia/chronic fatigue immune dysfunction syndrome (CFIDS). I usually just kind of live with it and focus on the positive to not lose my personal power, but right now, the bombs have to be dropped to see if it helps. It sucks, but I’ll get through it.

Honestly, I’ve been thinking pretty heavily about my chronic illness. When I first got sick in my early twenties, I got a lot of resistance from the medical establishment and loved ones. I learned to sort of put it in my private life and not really share it. It’s a very difficult psychological balance to live in a fast world with a “hidden” disability. Our medical tests at present are very poor with detecting what’s going on in lots of chronically ill people, so often the medical establishment just defaults to the “it’s all in your head, take an anti-depressant, and deal with it” approach.

I deal with a ton of symptoms including: cognitive impairment, confusion, deep muscle and joint pain, intense fatigue, depression, anxiety, sensitivity, insomnia, and others. They seem to follow a very irregular pattern and always pop up at the seemingly worst time. It’s something I’ve had to shoulder silently for decades now, and I did reach a point two years ago where I was completely overwhelmed with my health and various other difficulties. But I reached my bottom, and I gave up. I acknowledged my powerlessness, and said “OK, I don’t have control of this situation, but I’m going to keep climbing no matter what. I’m listening and open to learning.”

Dealing with chronic health issues is a very complicated thing because often the best drug is optimism. When you have a poor self-image, a victim mentality, and a “the world is all against me” thought process, it can make you sick. I honestly believe, and the data backs this up, that a lot of my chronic health issues are due to a childhood of trauma and disempowerment. That’s not to say that there are not real, material things at work in my body, but the two factors go together.

My diseases and queerness and losing my children and everything else really broke me, and now I’m happier or more at peace. I don’t care about small things. I’m human, and they bother me, but I soldier on with an understanding that life is pain. I feel disabled in some way, and I have to do a complex set of daily adaptations to handle my various disablements, but that’s ok.

So, I’ve decided that my five year plan is to go back to school to get a Masters in Counseling in some capacity with a focus on the Psychology of Chronic Illness and start working in that field. I think I can help others find balance in a very confusing and overwhelming circumstance, and I feel a real calling to do so. Ultimately, I want to work outside of the medical establishment and integrate my alternative beliefs like the power of ritual and empathic therapy into my practice. But I need the paper to be a “real therapist.” 

There are often not any easy solutions in situations like mine. There is just work and balance. Maybe providence will smile on me, but it’s ok if it doesn’t. I know what it’s like to feel crucified here on Earth, and there is transcendence in letting go and accepting our limitations. There is a tarot card that keeps popping up for me lately: The Hanged Man. In most decks it shows a man hanging upside down, completely suspended and powerless. He has lost all of his earthly power, but in so doing, he sees the world upside down, and he has total spiritual clarity. Life picks us up and turns our lives upside down, and although I’ve seen great loss, pain, and trauma, I’ve grown to see divinity and feel a joy that never dies, even in extreme darkness.