Chronically Ill and In Pain: My Story

I'm a chronically ill person. I have fibromyalgia and myalgic encephalomelitis/chronic fatigue syndrome (ME/CFS). I'm in pain all the time. Yes, all the time. My body also metabolizes medication differently from most people. Gabapentin, a drug to help with nerve pain, made me suicidal. It was one of the most terrifying times in my life. Thus, any type of drug in that category runs the risk of making me feel the same. I've reluctantly tried them, and they did nothing for me.

Living in pain every day of your life creates a stress all on its own. I have several tools in my toolbox to deal with it. Watching movies. Working on puzzles. Reading a book. Taking a walk (when I can). Using a heating pad. Losing myself in my writing.

But those things can only get me so far. I need pain relief - specifically, opioids.

Unfortunately, due to the opioid crisis in this country, getting opioids is an exercise in frustration. Doctors are terrified they will be targeted by the government for prescribing too many, and will often cut off patients without proper tapering. When faced with this sudden withdrawal (which is incredibly dangerous to one's health), chronic pain patients who were taking these drugs responsibly and safely have sometimes committed suicide because they could no longer handle living in pain. 

This is not only unacceptable and unethical, it is evil. I do not use that term lightly.

Therefore, I'm sharing my recent experience with you to illustrate how this war against chronically ill patients has personally affected me.

My Story

A little over a month ago, I participated in a one-day symposium as I was presenting a paper. The day was very long and hard, and I knew I was going to crash. Post-Exertional Malaise (PEM) is one of the hallmark symptoms of ME/CFS. Here's a brief explanation: 

Oh boy. Crash I did. But as the week progressed, I realized something else was going on. I tested positive for Covid for the first time since the pandemic started, and it just exacerbated all my symptoms. I felt horrible.

Unfortunately, the pain hasn't really abated since then. My primary care doctor refused to prescribe me any pain meds, and recommended I go to a pain specialist. I made an appointment, and tried to get through the next few days as best as I could.

My appointment went well, and my pain specialist decided to put me on an opioid called Nucynta. Because it is fairly new - only been on the market a few years - there is no generic form. I'd been on this drug before when I was in severe pelvic pain a few years earlier and it helped with the rest of my pain. The relief I felt at being listened to, at being heard, was immense. I was going to get help.

Then came the text from my pharmacy. My insurance had denied coverage of Nucynta. This happened last time, and I thought it would be resolved by the next day. So I waited. But nothing happened. Then I called my pain doctor who said they'd sent in an appeal to my insurance. I called my insurance and was on the phone with them for an hour. No resolution.

For three days, I endured mounting pain and frustration as I was stonewalled at every turn. Another phone call with the insurance. No resolution. On Friday morning, terrified I'd have to go through the weekend with no relief, I called my pain specialist. 

"Can you please give me something just for the weekend?"

Their response floored me.

"No. You just need to keep taking the Tramadol." (Tramadol is an opioid that does *not work* for me and actually makes me nauseous).

"But it doesn't work for me. Isn't there anything else you can do?"

"No, sorry."

I felt abandoned. I cried my eyes out. And because I was only going on four hours of sleep, I took a nap, sleeping all afternoon in an attempt to escape the pain and stress.

I woke up and called my insurance company to ask them to expedite the appeals process. I was on hold with them for an hour. I never did get to talk to the senior representative team. They were supposed to call me back and they never did. Twice they've said someone will contact me within 24 hours. Twice that promise has been broken.

At this point, I decided I'd just go ahead and have the prescription filled without my insurance even though it was going to cost me $600. When you are in pain, and no one wants to help you, you consider spending $600 that you can't afford so you can have some relief.

I managed to find a coupon for Nucynta that knocked off $100 and told the pharmacist to fill it. I finally began to relax, knowing I'd have some pain relief soon.

Then the text from the pharmacy came. "We have sent a message to your doctor for clarification on your prescription."

I stared at the text in disbelief. What now?

My boyfriend drove me down to the pharmacy. I was shaking as I went to the pharmacist to confront them and ask them what in the hell was going on now. He told me that the way the prescription was written, he wasn't sure how many pills were prescribed a day. It looked perfectly clear to me. But he'd sent a message to my pain specialist and was waiting for a response.

My pain doctor never got back to him last night.

Or today.

I still do not have my pain meds. 

FIVE DAYS. I have been dealing with this situation for FIVE DAYS.

And I have to ask, do doctors still believe in the Hippocratic Oath to "do no harm"? Because I have been done immense harm not only by my doctor, but also my insurance company. I am in pain 24/7 and need help. I am trying to do this safely and responsibly. I'm not taking untested herbs like kratom that others have tried for their pain because I'm terrified of the side effects. I'm not going out on the streets to buy fentanyl or some other drug that may literally kill me.

I'm trying to do the right thing. And I am being stonewalled at every turn.

I am not alone. There are millions like me who are suffering, and who are desperately in need of help and they are being ignored, treated as "drug seekers" or "addicts" when all we want is to have quality of life. 

I want to be a productive, contributing member of society. I work full time (though I do so from home as my illnesses prevent me from going to the office). I pay taxes. I vote. I want to participate in life. Why am I being discriminated against? 

It's not right. And this must change.

I'm sharing my story in hopes that it will open eyes and minds and hearts. I want to become an advocate for those of us suffering from chronic pain and illness, as much as my health will allow it. The National Pain Advocacy Center is one such place to find help. I am joining them in their fight. 

The American healthcare system is broken. I should not have to fight insurance companies to cover a prescription that my doctor has deemed necessary for me. They should not be making medical decisions for my health to "keep costs down." Insurance companies make money hand over fist. This is, of course, another blog post for another day. But it is part and parcel of why I am currently struggling. Because my health insurance will not cover my prescription, I may have to pay $600 for this drug.

I'm angry. I'm frustrated. I'm indignant. And in my life, whenever I've felt those things, I've jumped into action. I circulated petitions in high school for what were fairly innocuous things (putting shower curtains in the girls' locker room and bringing back the homecoming bonfire) and won. I've fought for my kids in school, writing and calling teachers and principals when necessary. I've written letters to my govt. representatives. I stand up for myself.

And that's what I'm doing now. I'm advocating for myself and for others who cannot. 

I'm a chronically ill person and this is my story. 

Always Keep Fighting

The actor Jared Padalecki, best known for his role as Sam Winchester on the TV show Supernatural, has been quite open and honest with his mental health struggles. His mantra is: Always Keep Fighting. My daughter, who also struggles with her mental health, has this tattooed on her upper arm to remind her to never give up.

I've come to adopt this mantra, as well, for not only my mental health struggles, but my physical health struggles, as well. 

And this week, I refused to give up.

After being down for the count with first a flare and then Covid for two solid, straight weeks, I have taken a two-mile walk every day this week. I took it easy, not pushing myself over what I thought I could handle, and darn if I'm not proud of myself for getting back on track.

I hope to resume my regular workouts this weekend or early next week - treadmill time, plus other exercises on my yoga mat. I wanted to ease myself back into things post-Covid.

Moving my body is so important to me. The physical benefits are self-explanatory, but the mental and emotional benefits are equally valid. But there are limits. I can't push myself too hard or I will end up in a flare and not be able to move for days at a time. Also? I am never not in pain. Every night this week, I've dealt with pain before, during, and after my walks. But I still do it. I know others cannot, and I absolutely respect and honor their choice. We must all do what is best for our bodies.

I also bring this mentality to my writing. I'm querying literary agents right now, and I've received a mixed bag of responses. Some of the rejections have actually been really great and have encouraged me to keep writing. In this, I also refuse to give up, to always keep fighting. I believe in my work and my ability to tell a good story. I know that I will find a literary agent who will be just as excited and passionate about my work as I am!

Always keep fighting. For your health. For your writing. For you.

Covid Finally Came For Me!

 After last week's symposium, I was hit by quite the flare. But when I noticed other symptoms cropping up, I figured I should test myself. And wouldn't you know it: positive for Covid. 

I think I did pretty well evading it for the last three years, and even though it's been like a bad cold, I've had far worse colds, and far worse flares. So all in all, it hasn't been too terribly awful, but it's been miserable nevertheless. I was doing so well on the exercise front, too! That has been probably the most frustrating part about this - all that momentum I had, gone.

I've been doing a lot of resting and trying to stay away from my boyfriend and my daughter. Not easy to do, but we're trying. The boyfriend has been making grocery store runs for me and thankfully, I have enough Diet Pepsi and dark chocolate to see me through.

I've grown rather tired of watching television and laying in bed. Worse, I haven't been able to sink my teeth into a good book. I'm super picky in what I read, and if the writing is terrible, I have a difficult time connecting with the story. If the writing is good and the characters are frustrating me to no end, I'll put the book aside, too. In fact, I had to give up on a book by a big-name author which received rave reviews from numerous people for that very reason: the characters irritated me so much I couldn't stand it any longer.  And honestly, why spend time reading bad books? 

Tonight I had a burst of energy and used it to vacuum and clean up the kitchen a bit. It felt good to be doing something instead of just sitting around. But that burst of energy didn't last long, and now I'm back in bed, exhausted. Sleep doesn't come easily, and it's full of bad dreams and pain. I wake up in pain and can barely stand it. The problem is, I don't know what are Covid symptoms and what are fibromyalgia and ME/CFS symptoms! 

At any rate, I'm trying to be patient through this whole thing. I'm lucky that I'm able to go outside on our patio and enjoy the birds and wildlife. I've also been able to do a bit of writing here and there, so that's something!

When Worlds Collide

 Well. So much for trying to blog every day. Ha! Good intentions and all that...

Last night I gave a talk on my PhD research at the Jewish Community Center in Omaha as part of their Week of Understanding for the Institute of Holocaust Education. I only had a small crowd, but that made it so much better. The relaxed atmosphere was warm and welcoming, and I thoroughly enjoyed myself.

They were quite interested in my work - yay! - and asked me if I planned to write a book on it. 

I said I definitely wanted to. Whether I will or not is another story. I've already written and published two nonfiction books, and I really, really want to focus on my fiction.

Work on both! you might say. Well. If I didn't have to deal with chronic illnesses, I definitely would. In fact, that's what I used to do. I worked a full-time job, wrote articles, wrote nonfiction books, wrote novels, did freelance book reviews and cover copywriting. I burned myself out completely.

Add in chronic illnesses and I simply don't have the time or energy.

I won't rule out writing a book about my PhD research, but my fiction is still taking precedence for now. 

It's frustrating, though. I came up with another idea for a novel while in the shower tonight, and I'm excited about it. I just don't have that same excitement for nonfiction right now, and I'm going to honor that.

Trying to be authentic is hard sometimes, and requires difficult decisions. But if I don't live authentically now, then when? 

So. Now it is.

When Will I Learn?

 I swear...I will never learn this very, very hard lesson: I need to pace myself.

I jumped on the treadmill yesterday afternoon and walked 40 minutes at a brisk pace (I could have gone longer) and then did my toning exercises on my yoga mat. Not content with this alone, I decided to do the dishes, vacuum, and oh yes, clean the blades on the two ceiling fans in our house.

After I finished with the second ceiling fan, I knew I'd made a serious error. My body had told me earlier to stop, but did I listen? No. I kept pushing. 

A few hours later, I was exhausted and in pain. I knew I'd wake up the same the next day, and you guessed it, that's what happened.

Today I had plans to go watch my nephew play basketball, take a walk with my boyfriend, and get some other things done. Instead, all I did was sit in my chair and watch tv. 

I could be mad at myself, but what would that accomplish? Absolutely nothing.

I almost, almost thought about getting on the treadmill and just doing a few minutes, but what would that have accomplished? Nothing. It would have made me feel worse. So instead, I found a new show to watch - the new Perry Mason series on HBO Max - and relaxed as much as possible.

When I have good days, I want to accomplish everything I can, but that is not what pacing is about. Pacing is about doing a little bit every day and most importantly, listening to my body. If my body has the red light flashing in my brain, I need to listen to it instead of ignoring it. 

How many times have I told myself this? Numerous. 

I need to start letting go of this mentality so prevalent in our society, that we must keep pushing, keep doing, keep achieving. If I want to achieve the goals that really matter to me, it means I must stop pushing and stop doing. 

Apparently easier said than done.

Nearly There

 February is almost over. My mood has started to lift though I still have some "meh" moments. Well, don't we all?

I've been trying to exercise regularly. That helps quite a bit. There's something about putting on your headphones, jamming out to some really great tunes, and walking. I know it's on a treadmill, but for some reason, I really enjoy it, and I think I get a better workout on the treadmill than I do just taking a walk outside. But once the weather cooperates, I'll continue taking walks on our city's trails.

I decided to start submitting my last novel to agents. That means writing the dreaded query letter. I think I came up with a pretty good one last night, but we'll see. I also have to finish writing a synopsis. Ugh. I hate them. I'd rather write an entire novel than one synopsis! After writing so many throughout the years, though, I've learned that you don't need to make them dazzling - you just need them to tell your story. I should be finished with the synopsis soon and then I'll go through my novel again to make sure that I've made all the little changes I notated. I often will put notes to myself - "check this" or "add detail here", etc., and I certainly don't want those things to squeak through to an agent's desk.

I've also been working on my jigsaw puzzle. I know I'm missing at least three pieces, so I'm going to do a thorough search of the house this week. I may have vacuumed up a few. But I love this puzzle so much (picture below) that I will probably buy another copy of it just to find the missing pieces. I always frame my puzzles, and I really want to frame this one. The calico cat reminds me of my beloved cat, Kathryn, and that's why I bought it in the first place. Plus, Mozart is my favorite composer. Win, win! Yes, it's going to be an absolute pain to go through the new puzzle for those three pieces, but it'll be worth it in the end. 

All in all...things are better. I'll take it.

Meandering My Way Through

 February is half over, thank goodness. Every day has brought something different. On Tuesday, I stayed in my recliner most of the day and watched a complete season of Shetland (six episodes) and didn't even care. Today, I managed to get on the treadmill and do some exercises, clean up the kitchen, and work on the synopsis for my last novel. 

Is this depression? I don't know. I've tried to just honor my impulses and not push myself to feel a certain way or do particular activities. If I feel like binge-watching an entire season of a show I love, I do it. If I want to get on the treadmill and rock out to some Depeche Mode, I do it.

This mood will lift. I trust that it will because that's what has happened in the past. That being said, it might be worth a visit with my therapist, a "check-in" to make sure I'm okay.

I have some wonderful things to look forward to. I booked a trip to Scotland in October for my daughter and me. It's been several years since I've been on an overseas trip, and since airline tickets were so cheap, I decided to go ahead and purchase them. I worry that my health will prevent me from going on future trips, so I wanted to do this now instead of later. I've never been to Scotland so this will definitely be an adventure!

Meanwhile, I'll keep living one day at a time because this, too, shall pass.

February Blues

 February is the hardest month of the year for me. It's not because it's the month for Valentine's Day (though in the past, this was certainly a reason) but because for the past several years, I've had traumatic events happen during this month.

Sometimes when this month rolls around, I don't realize why I start to feel depressed and want to go into full-on hermit mode until I remember: this is February. It amazes me how trauma sticks with you, even years after the event has occurred.

Three events in particular contributed to February being the month of crap. The first, and probably the worst, was finding out my husband of 18 years was cheating on me. I do not want to relive the pain of those first few days. The second was the passing of my beloved grandmother. Though she'd been ill for some time and her death was not a surprise, it still hurt, especially considering her funeral angered me in that the pastor spent perhaps five minutes talking about my grandmother and the rest preaching (this particular denomination is known for doing this). To say I was upset is an understatement. And then the third was the passing of my beloved cat. She'd developed hypothyroidism, one thing led to another, and she had surgery for a feeding tube. She was so very sick, and she had a seizure and died in my arms. 

Trauma, trauma, trauma. Therapy taught me it doesn't just disappear. It lingers in our memory, even changes our brain chemistry. When trauma anniversaries roll around, we may not remember them, but our bodies and our brains sure do.

So I've decided to practice radical self care this month. I've allowed myself to feel the way I feel. I haven't pushed myself to do things I don't feel like doing (though yeah, I do have to do day job stuff). I've been binge-watching British murder mysteries and not feeling one bit guilty about it. 

I've still been writing on my novel and enjoying it - it's now become a habit to work on it nearly every evening. 

So. February is the time for me to just "be."

Making the Tough Decision

 A few years ago, when I decided to pursue my PhD in history, I quieted my inner voice whispering to me, "But what about your fiction writing?" I'd always wanted to earn my PhD, and I figured I'd have time to work full time, write my novels, and go to class part-time. 

Oh poor, sweet Melissa.

I've always tended to bite off more than I can chew, and as a result, that's one of the reasons I developed the chronic illnesses that I have by putting myself through far more stress than necessary (of course, an abusive marriage and 18 yrs of trauma had more to do with it than anything). 

With time, perhaps I'm finally getting wiser (and older, of course).

The first year of grad school went fairly well. I took one class a semester, continued to work full time, and even managed to finally, finally finish a novel I'd been working on since my divorce five years before. But my health continued to decline. I figured I could still keep up the pace.

The class I took for the fall 2022 semester challenged me in ways I hadn't bargained on, and it took up much of my time. I was so focused on writing a paper for this course that I had no time to devote to my novel. And boy, did I miss it.

About a month before the end of the semester, I began having serious doubts about my ability to continue in the program. I had to have a hard conversation with myself. With the limited energy you have due to your chronic health problems, how do you want to spend your time?

I took my question to Twitter, and one person's response really jumped out at me. They said, "In ten years, would you rather see your diploma on the wall with those three letters - PhD - behind your name, or a shelf full of your published novels?"

Put that way, there was no question about it. I wanted that shelf of published novels. 

Fiction has always been my first love. But I also love history. That's why I write historical fiction. Studying history and being an academic historian is another kettle of fish altogether. It's a different type of writing, a different way of thinking. Because of the cognitive issues associated with ME/CFS, it took an immense amount of concentration and brain power to focus on my classwork, leaving no time for fiction.

I asked myself some other questions. Did I really need the PhD to be a historian? No. I've already published two history books and given talks. Did I need the PhD to advance my career? Well, that depends on what career I want - and what career I can have with my limitations. Short answer? No, I don't. I never had any plans to teach or go into academia. And another important question: if I didn't have free tuition through my employment with the university, would I have taken out student loans or applied for funding for the program? Again, no.

But the real question I had to ask myself, the most important question, was this: what brings you the most joy? Writing fiction or studying history?

The answer, of course, was writing fiction. That is where my passion lies.

I decided to give myself some more time to ponder my decision before notifying my advisor, and so I took dissertation hours this semester. But really, I was only prolonging the inevitable. 

Last week, I told my advisor that I was withdrawing from the PhD program effective at the end of May.

I am at peace with my decision. While I enjoyed going to class, it put an additional strain on my body, as did the classwork, readings, and deadlines. 

These past two months, I've been focusing on my new novel, and it's been a relief not to have to worry about going to class, or having to worry about finishing an assignment. Sure, I miss classroom discussions and my fellow students. But in the end, this was the best choice for me.

I need to put my health first, and make myself a priority. That's hard for me to do. I spent years putting others ahead of me: my now-ex-husband, my kids, my job, etc. And I paid for it. 

Now? I'm taking care of me. 

Unorthodox Schedules

 When you're chronically ill, sticking to a strict schedule is impossible. 

I go to bed every night not knowing how I'll feel in the morning. Will I be in pain? Exhausted? Or will I feel okay? This determines the schedule for my day.

On the good days, I do work, take a walk, maybe run to the store, and do some chores. In the evenings, I'll watch a movie or television show, then work on my novel, read, and go to bed.

On bad days, I usually watch television all day to keep my mind occupied and focused on anything but the pain and fatigue. Reading a novel is hard. Writing is harder. But I still try to at least look at my novel every day, even if I'm only doing a bit of light editing.

They, i.e. usually meaning people who don't know any better, say people with chronic illnesses should stick to a schedule. Well, that simply doesn't work for me. This morning, I woke up in severe pain. I only wanted to escape from that pain. Thus, I took a four-hour nap, sleeping away the afternoon. I woke up at 5 p.m. That means my sleep schedule is screwed up. Some people who think they know better would have told me not to take the nap because adhering to that sleep schedule is important! Well. Screw that. Writhing in pain all day is not my idea of a good time, sleep schedule or not.

I'm just a grumpy gus today.

Pain does that to a person. I feel like I lost an entire day. Yet here I am, writing this blog post. That's something, right? I managed to take a shower and wash my hair. Another victory! 

I decided this year that I'm no longer going to feel guilty for staying in bed all day and doing "nothing" if I'm having a flare. I've learned from past experience that pushing myself will only result in more days in bed, not less. ME/CFS is such a strange disease. Exercise can actually set us back in our health journey and make us worse. 

But oh am I ever glad I decided not to take any classes this semester. There's no way I would have been able to keep up. 

In fact, I'm focusing my spare mental energy on my novel. That is how I want it right now.

Well this blog post is all over the place. That's okay. That's how I feel today.

Midweek Update

Though the week started out a bit slow for me health-wise, I finally felt well enough today to jump on the treadmill. As long as I have my music and I don't push myself too hard, I try and walk for 30-45 minutes or more. Some days are less, but that's the way it goes.

We bought a new puzzle board for our jigsaw puzzles. Previously I used a bulletin board to assemble the puzzle and plastic bowls or boxes to sort the pieces. I always had to put a blanket over it and store it under my bed to keep the cats (okay, ONE cat, Slick) off. This was an unruly set up as I would lose puzzle pieces and always end up with messes.

The new puzzle board is perfect. It comes with four drawers and a plastic cover to put over the work-in-progress puzzle. The only drawback is that it's pretty heavy, so I can't put it on my lap. Instead, it's now taken up permanent residence on the coffee table in the living room. Slick can lay on it to his heart's content (which he does) and not disturb the puzzle.

Last night, I didn't feel like writing on the novel. But I decided to open the Word doc and make a few small changes before I forgot about them, and then, voila! I ended up writing nearly 800 new words. Love it when that happens.

We had a storm today - lots of ice, rain, and a bit of snow - so it's been a good day to stay inside and work on the puzzle, watch a few movies, and yes, get some writing done.