Living with Fibromyalgia

How fibromyalgia has changed how I deal with life

About ten days ago, I had a seizure.

Wait, what? What in the world happened?

I came home from dropping my kids off at school. I fixed myself a bowl of oatmeal for breakfast and I sat on my couch.

I placed the oatmeal on the coffee table and I fetched the remote, which was hidden under my dog. I know this sounds silly, but it has its importance.

As you may (or may not!) know, I am narcoleptic. Narcolepsy is a neurological disorder affecting your sleep/wake cycles.

While my narcolepsy is not anywhere as bad as… well, anything, really, portrayed by Hollywood, it does impede on everyday activities.

Personally, my narcolepsy symptoms are not severe at all, but on occasion, I will feel so tired that I cannot stay awake, no matter how hard I try.

My symptoms are mostly controlled by medication, and I have learned to recognize them.

The only course of action when I feel a “narcolepsy attack” is to close my eyes and “sleep” for a few minutes.

This tricks my body and my brain into thinking that I am now fully refreshed. To be honest, I am not sure how it physiologically or physically works, but it works.

As I was getting settled to watch TV while eating my breakfast, I felt a wave of dizziness overcome my body.

Of course, I thought I was just having a bout of narcolepsy. Since I was already on the couch, I just leaned back and gave in to the tiredness.

I closed my eyes for a few minutes, at most.

I woke up for a bit, opened my eyes, and tried to get up. I just couldn’t. I remember closing my eyes again, and it felt kind of like in the movies when you see life through an actor’s eyes and their eyes slowly close. Yep. Just like that.

Did that nap help? Nope. Sure did not.

I opened my eyes again, and a feeling of panic overcame my body. I could barely breathe. I tried to stand up and I couldn’t. As if driven by urgency, I grabbed my phone and called 911.

I begged her to send help. I did not just ask, I begged. I was terrified. I could barely breathe. To top it off, I was half-crying, half-fighting for every breath I took.

I stepped out of my house, with only socks on, under the rain. I started walking up and down my sidewalk without realizing what I was doing. I guess it’s a good thing I was fully clothed!

Within six minutes, the emergency services were at my house. Let me digress for a minute here.

I live in a town of 700 people, and both the Fire & Rescue and the Ambulance service are run by volunteers.

They are ten times more responsive than any big city paid service I’ve ever encountered.

Just thought I’d praise them for their amazing dedication to their town and to us, the residents.Way to be awesome, Silver Lake MN First Responders!

Ok, now that we have established that incredible truth, here goes the rest of the story.

The Emergency Medical Technicians swooped in and started running vitals on me. I was still begging and pleading for help, absolutely unclear about what was happening to me.

They gave me oxygen right away. I remember them calling the nearby hospital, 10 miles away, and saying my oxygen level was at 80% according to the pulse oximeter (you know, that thing they put on your finger that shines a light through your skin and makes it look red).

Now I’m not a medical expert, but my understanding is that anything below 95% is simply not enough.

At 80%, your organs will start to shut down; you face impaired functioning of major muscle groups, including your heart; your brain takes a vacation.

That’s where I was. 80% oxygen saturation, no idea what was going on, aimlessly walking on the sidewalk, pleading for my life with the emergency response team.

Remember how I fetched the remote under the dog when I sat down to enjoy my oatmeal?

Keeping that in mind, one EMT asked me where my house key was so she could lock up the house.

I told her and when she came back in the ambulance, I asked her if my dog had bothered her since she was on the couch with me.

She told me the dog was locked in her kennel. I don’t remember at any time putting the dog in her kennel.

But since I was home alone, I definitely put her away sometime between fetching the remote and calling 911.

Dang.

So I looked up at the clock and saw it was –:45. I could only see the light no arm on the clock. I was starting to feel better, and I was a bit more coherent.

I was interacting with the emergency personnel and she asked me what was the last thing I remembered.

I said I was fixing oatmeal about 10 minutes before I called. She confirmed I meant about 9:30 AM.

That’s when it hit me. Hard. I lost an entire hour of my life. It wasn’t 8:45 AM, it was 9:45 AM.

I have zero recollection of what happened between 8:20 and 9:30.

NO CLUE.

Do you know how terrifying that is? It’s pretty terrifying. I’ve tested it for you, and I’m giving it a one-star review. I don’t recommend it.

I quickly regained my lucidity. The EMT told me I was less clammy (always nice to hear…) than when they arrived.

My skin was not as purplish and marbled as it had been. My speech was not slurred anymore (whoa – last time I slurred my speech, I was at that one party in college – before I fell down the stairs, and laughed uncontrollably about it – true story).

Anyway, long story short (ha! yeah right…), the ER doctor told me I had a seizure. First time ever this happened to me, at least that I know of.

How fibromyalgia has changed me

And we care…why??

You’ve patiently read this far, and still, haven’t told you what this whole thing has to do with Fibromyalgia!

Here it comes: fibromyalgia has drastically changed the way I react to life events. And I mean drastically.

My first thought, once I was able to put together two decent thoughts, was that it had to do with fibromyalgia.

I hopped on the hospital’s wifi, and started searching, “fibromyalgia and seizures,” “fibromyalgia and epilepsy,” “fibromyalgia and loss of consciousness.”

You get the drill. I started inputting every single one of my medication followed by the word, “seizure,” and then all over again with the words, “epilepsy.”

I had recently started a couple of new meds that were supposed to help me lose weight. They also helped with the chronic pain. I had not felt this good in my body in years. I promise you it is not an exaggeration.

I FELT GOOD.

And yes, it was too good to be true. The meds turned out to be contraindicated for people prone to seizures.

I wouldn’t have known I was prone to seizures without my little “episode.”  But now I know.

Having fibromyalgia had taught me that everyday life problems are felt tenfold. It had also taught me that my body doesn’t like being “forced” to feel good, sadly enough.

If this had happened 20 years ago, sure I would have wondered what was going on, but I would also have considered first that this was an isolated incident, unrelated to anything else. But this happened now.

And now, I wonder if everything that happens to me is related to fibromyalgia. To be honest, I still don’t know if it is related or not. I see a neurologist next week, and I hope I can get answers.

You know, Servanne (that’s my name), that’s just one isolated incident…

Or is it? What I am getting at here is that no matter what life throws at me, my first reflex is now to look a connection to fibromyalgia. It’s insane, right?

I mean, not everything that happens to me will be rooted in fibromyalgia. That wouldn’t make sense. That’s not logical, or even remotely possible.

Yet I look for fibromyalgia everywhere. EVERYWHERE.

It is draining, mentally and physically, to think that this one diagnosis rules my entire life. But it does, and I need to make peace with that.

I don’t mean that Fibro Warriors should passively take anything life throws their way. And I am not saying that Fibro Warriors should complain and whine constantly.

No, rather I mean that it is a fact. Fibromyalgia may not be responsible for everything we do, feel, think. But it does play a huge role in our everyday life.

Someone who has not lived with a chronic pain condition can simply not understand what it is we go through.

Fibro Warriors know.

What do you mean, “Fibro Warriors know?”

If you are not aware of it yet, I like to make lists. So here goes my list of things I, as a Fibro Warrior, have to reflect on every single day.

1- When I get up in the morning, I need to slowly unfold my body and then roll over the edge of the bed, because my body is stiff and painful.  I cannot just spring out of bed and look refreshed.

2- Speaking of getting up, I can not have an alarm. Even on vacation. You see, if I want to be able to get up at all, I cannot be laying down for more than 7 hours and 20 minutes. Yes, it is that specific. Yes, it was a trial and error process.

My body gets stiff overnight, and if I am in a supine position (lying on my back) for too long, my thorax and rib cage hurt with every breath I take.

If I am in a prone position (lying on my stomach) for any amount of time, my lower back hurts with every step I take. It’s a lose/lose situation. But I’d rather be sleepy than in pain.

3- I have to take meds to get me going. Without the medications, I risk being in pain all day long. And I do not mean pain. No. I mean in your face, can’t control it PAIN.

4- I have to remember to order my medications ahead of time. And then I have to remember to go pick up my meds at the pharmacy! You know that’s happened more than once if I dare to admit it!

5- I have to choose my clothes in accordance to my pain level. For example, if my hips hurt a lot, I physically cannot lift my legs up to put on pants. I have to settle for a dress or a skirt. It sucks.

6- In going over what I will be doing during the day, I have to gauge my activity level carefully. What that means is that I cannot plan on walking 5 miles two days in a row. That’s just plain insane.

On a more “human” scale, I can’t even plan on working at my server job two days in a row. I physically cannot do that.

7- Planning my meals is nonnegotiable. I have to if I want to not be miserable for the following 48 hours.

I can’t have too much greasy food, too much dairy, too many carbs and sugars, too much protein… you get the idea.

Given that one of the symptoms of Fibro is digestive issues, I can’t mess around with that. So planning a well-balanced diet is primordial.

8- Getting in a comfortable position in the car or on the couch is tricky. I have to think about when and how I will be getting up because staying stationary for too long gives my body the idea that it should freeze up like that. Ugh.

9- Looking for work, going to the movies, going on trips… all things that have to be planned to accommodate my physical limitations, in case I have a bad day.

10- If I get sick, or something like a seizure disrupts my life, the first thing that comes to mind is fibromyalgia.

I always wonder if it’s a new symptom, a medication side-effect, something other people wouldn’t notice if it happened to them… I do not think in “normal human body” terms anymore. My default mode is Fibro Warrior.

11- I can’t really make new friends all that easily, and most of my newer relationships are quite superficial. Why?

Well, because I don’t want to have to explain myself all the time. I don’t like having to justify why I do this or why I can’t do that.

And I don’t want to let people down, because, you know… last minute plan cancellations…

I12-  lie constantly. Ok, don’t go telling my kids about this one, but it is true. Whether I lie by omission or just plain lie varies depending on the interaction. It goes something like this:

  • The person I know: “Hey, how are you today?”
  • Me in my head: “I feel like a train ran me over, but I already complained to that person twice this week. Can’t scare them away. “
  • Me out loud: “Good, thanks for asking. “
  • The person I know: “Awesome! I’m glad your fibrobiopancer is doing better! See, I told you you’d feel better soon!”
  • Me in my head: “If only you knew the truth… and what in the world is fibrobiopancer?!? How hard is it to remember fibromyalgia?!?”
  1. Sometimes, the lie goes something like this:
  • The person I don’t know:”Hi! I’m Greg. How are you?”
  • Me in my head: “HA! Like you really want to know, you indifferent person you!”
  • Me out loud: “Good, how are you?”
  • The person I don’t know:”Oh well, you know… my daughter’s dog’s cousin’s cow has a scrape on her knee. It’s some pretty serious stuff. Glad you don’t have to deal with serious health issues like that! Consider yourself lucky!”
  • Me in my head: “Me? Lucky? Lookie there, stranger, you’re the lucky one, yeah, you’re lucky I don’t wring your neck, you ignorant person you!”

How fibromyalgia has changed how I deal with life

But there are not just negatives, though!

The absolute best thing about being a Fibro Warrior is how it makes me view the world.

I don’t really care how people view me. Anyone who knows me probably would say that I am loud and obnoxious but pretty happy overall. But realistically, how other people perceive me is shaped by one thing and one thing only: how I perceive them.

You read that right. Even the incredibly rude people, the horrible people, let’s say it: the idiots!, even those types of people are only that way because that’s how I see them.

Let me explain. It’s the good old cliche: even serial killers were loved by someone at one point.

If instead of seeing how incredibly stupid someone is I focus on how lovely their sense of style is, or how clean their car looks, or how pretty their eyes are, well all of a

sudden, my perception shifts. I do not notice the annoying stuff as much any longer. And even the worst people ever start to show qualities I would never have suspected.

You know, I have gone to a few “mom events” over the years. You know the ones: school fundraisers, sporting events, lunch groups, in essence anytime two or more moms meet up for whatever reason.

The subject always turns to kids. I’ve always said that my kids are only as good as I want them to be.

People don’t always understand what I mean but that. But really, it’s a simple concept: if I praise my kids for what they can do rather than belittle them for what they cannot do, I realize how much they can do wonderfully well as opposed to how little they do not achieve.

Think about it: if you tell a kid he or she is bad, or stupid, or knows nothing, where is the incentive to do better? After all, if they are already being told they are failures, they might as well fail for good and have an easier time for a while.

Same goes with people in general. Your perspective changes your interactions. You can choose to think people are idiots who will never understand.

Or you can choose to view people’s lack of knowledge regarding fibromyalgia (or anything else in life, for that matter)as opportunities to educate them.

Trust me, shifting your perspective will not only make you happier as a person, it will also help make the world a better place overall.

Ok, fine. Maybe the whole “overly altruistic” spiel isn’t your cup of tea.  But think about it for a minute, it does make sense that seeing the positive in others would make you a bit happier, doesn’t it?

Here is where I am going with that: being a Fibro Warrior has taught me patience and understanding. I no longer get upset at people walking slowly in a crowd.

I understand why people may stay sitting when I’m trying to get to my seat at the movies. I know why emptying out that grocery cart is taking forever. I no longer get upset when plans are canceled or reported.

I am a better person because I am a Fibro Warrior.

There. I said it. And I don’t mean that I am better than other people! No, I mean that I am a better version of myself because of (thanks to?) fibromyalgia. I am a more understanding human being. I am a less judgmental woman.

And I can sincerely say that I truly would not have been as compassionate as I am today if not for fibromyalgia and its chronic pain.

Because everywhere I look, I see a plethora of faces who look calm and composed.

But I know.

I know that behind the brave faces and the forced smiles, everyone is hiding some suffering of one sort or another, physical or psychological.

I KNOW.

Do you?

About the author

Servanne Edlund

Servanne Edlund

Narcolepsy. Ankylosing spondylitis. Fibromyalgia. The perfect trifecta to sleep through life! As a mom of two teenagers, I need to keep going - so I have found coping mechanisms to overcome the hurdles placed on my path.

5 Comments

  • I loved your Fibro Warriors Know list. I do every one and didn’t even realize it. I like all the time to almost everyone I know, even my husband.

  • Your “story” is painfully right on! I don’t think anyone else could have “explained” this living with fibro any better. I have lived with it for 50 years and am still learning and knowing that everything I feel and do is connected to fibromyalgia. If I don’t step into the fibro-world and figure this thing out again and again, I would not be able to ever feel happy, but now I have many days of being thankful and happy. If this all makes any sense, I do want to thank you for you making this all clearer to me and knowing that it is not “all in the head.”

  • I’m stunned. I’ve been told I have narcolepsy but I’ve ignored it because I thought that meant that you fell asleep while talking. And that’s it. Evidently not. Sometimes a wave of exhaustion comes over me so fast that I feel as if I’ll die if I don’t lay down and sleep a bit. Sometimes I have just laid down on a floor cause I can’t get anywhere else. Can this be narcolepsy?

  • I’d like to post another item please. A few times in my life I have completely lost periods of time when I have no idea what has happened to me or where I’ve been. The most recent was a couple of months ago. I had lunch with my sisters and told them I was going to the grocery. I went in grocery store. A friend found me (a lot of people were looking for me) about 6 hours later. I had groceries Was sitting in my car. When he opened my door I said What? Had no idea that I’d been missing My phone had rang but I didn’t hear it. Nothing. Does anyone think that I might have had some kind of seizure? Just asking. Thanks for listening

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