Being a Mom With Fibromyalgia


This is a topic I've wanted to write about for a long time, but I've been intimidated hesitant to write about my deepest feelings and {perceived} shortcomings. I don't want to be judged. Unless you know what it's like, you don't know what it's like. Fibromyalgia does't define who I am, but it does affect the parameters that define my life. Fibromyalgia impacts life on many levels:
  • Causes widespread, diverse pain.
  • Drains energy.
  • Interferes with concentration and cognition.
  • Leads to anxiety and depression. {probably because of the above reasons}


Pain


Fibromyalgia is a pain disorder, thought to be caused by overactive nerves. When someone asks how it feels, I tell them it feels like I ran a marathon, got beat up, and have the flu. Everything hurts. {even my eyeballs} There's a million little pains. Then there are the big ones: aching shoulders, muscle knots that radiate burning pain, sharp neck pain...the list could go on, but for brevity's sake I'll just say that if it can hurt, it will.

It's infuriating to feel like you're constantly trying to get away from a monster with biting claws, but then you realize it's your own body and you can't escape. The pain is wearisome, but the worst symptom is the {drop-dead exhaustion like you're pulling around 50lb. weights} fatigue.


Fatigue


The loss of energy related to fibromyalgia has a huge impact on quality of life. It would be hard to choose to erase either pain or fatigue, because they both suck have their drawbacks. Obviously pain isn't pleasant, but you kind of get used to it {unless you're having a flare-up, then have a fun day}. It's the decreased energy that contributes most to a life of watching instead of doing.

Hiking Stony Point

There is a commercial for Lyrica (a drug used to treat fibromyalgia and diabetic nerve pain) where a mom watches her husband and kids rowing a boat away from the dock where she is waving. Their marketing hit me right where I felt it most, because that helpless sadness is exactly how it feels when everyone else is doing while you are watching from the sidelines. One of Mr. 67's and my favorite things to do was hike state parks. That was before. Now I call my stairs Mount Everest.

I wish I could do it all, but most days getting my daily chore list done is enough to feel like I accomplished something. It's a sad state of affairs, but there it is. This is what WebMD has to say about fibromyalgia fatigue:

"Unlike normal fatigue, the feelings of fatigue, weakness, and exhaustion that come with fibromyalgia can often lead to unending social isolation, even depression...Fatigue with fibromyalgia is described as crippling, exhausting, and flu-like. You may experience fatigue on arising, even after hours of bed rest. And many people with fibromyalgia have disturbances in deep-level or restful sleep, so the fatigue they feel is not easy to treat."


The worst part of the fatigue is feeling like I'm failing my son. I have such high hopes for him. I want him to be so many things: happy, healthy, smart, generous, kind, thoughtful, confident, honest. I worry I won't be able to give him enough of myself to make him all these things, that I can't live up to the mother he should have. In my perfect world, I would jump out of bed when my son wakes up and we would start our day with gusto.

The reality is, if it's a good day, I'll shower and get Zae dressed. But more often than not, I drag myself to my dresser and pull on some clothes because taking a shower is beyond my energy level that early in the day. Zae isn't so lucky. He usually stays in his jammies for a couple hours until I've "warmed up" a bit. Then, after I've given myself a mental pep-talk, I'll get a move on with my list of daily chores because then they're done and not mocking me all day. Once they're done, I think about all the things I should do but never get done. I'll sit down and try to write, but the overwhelming fatigue affects even the mental capacities, and sometimes I just can't seem to string two words together.

Cognition


One of the most frustrating symptoms of fibromyalgia is the way it interferes with concentration and memory. This difficulty focusing is called fibro fog.

I love words. If I have a craft, I'd say I'm a wordsmith. I write stories, trying to find the perfect word to convey an image or emotion. If I can't find it, there's always the thesaurus. But there are times when I am speaking to someone and the word I am looking for just won't come to mind. To say the least, it can be difficult to hold an intelligent conversation.

A more extreme case of this is sometimes forgetting where I am for a few scary moments. I can only compare it to that feeling when you wake up and for a second you are disoriented and don't know where you are. Names can be difficult to retrieve, especially new ones. Those are the big things. There are million little things, like forgetting what I just read and having to go back and read it again. This got so bad for a while that I gave up reading for quite a while. And you have to understand that I have devoured books for as long as I have been reading. When I stopped reading was about the time I realized that there really was something wrong. You shouldn't just hurt all the time without reason.


Anxiety and Depression


Anxiety and depression often haunt those with fibromyalgia. For me, depression is always lurking just outside the happy bubble I try to live in, but it's hard when you look back on a formerly active lifestyle and healthy social life to find you've become a gollum-like creature who lives in a cave hermit who avoids people I love because I will have to explain why I haven't shown my face in so long. I avoid phone calls because I can't commit to anything. I never know how I'm going to feel on that day. Here's WebMD again:
"You may feel like others don't believe you when you are forced to cancel family gatherings or luncheons with friends because of the chronic fatigue with fibromyalgia."
Sometimes I feel anxious that people are judging me for this exact reason. That they think of me as a flake or fickle. I try not to worry about what anyone thinks and just live my own happy, but those thoughts are always needling their way through the cracks in my armor.


Coping With Fibromyalgia


There's no cure. There is no magical medicine to make fibromyalgia better. Symptom control is difficult at best. I am not a doctor, and everything expressed on this blog is my opinion or my own researched information. Everyone is different, but there's a few things I've found that help.


Medications


Once upon a time, I only visited the doctor's office when I had to and avoided all medications. Since I've been diagnosed with fibromyalgia (and had several unrelated spinal surgeries) I've gone back and forth on medications. I try to avoid them because of potential side-effects. Not only that, but your body becomes reliant on some medications and withdrawal can be a miserable experience.

When I was first diagnosed with fibromyalgia, my doctor prescribed Cymbalta. When I found out I was pregnant, I stopped taking the medication and had the one of the worst bodily experiences I've ever gone through. At the time, I thought it was morning sickness, but I was sick so early (at 4 weeks) that I look back and think the Cymbalta withdrawal was a huge part of the problem. When I did more research, I found that others had gone through the same experience, and there are class-action lawsuits being filed against the company for misleading patients about the severe and lengthy withdrawal phase.

That said, there are tons of medications on the market that can help deal with depression, anxiety, and fibromyalgia pain. Narcotic pain medications do not help chronic fibromyalgia pain, but muscle relaxers, Neurontin, or Lyrica might provide some relief to some.


Eat Well and Keep Fit


Eating healthy foods has so many benefits it's amazing what a change of diet can do for feeling well. Since fibromyalgia often affects the digestive system, it's especially important to watch what we put into our bodies. This is so true for everyone, not just those with fibromyalgia. Our nation is under attack from the foods we're marketed. There are a number of great documentaries, including Fed Up and Hungry For Change. I believe both are on Netflix. They are worth watching to gain a real perspective on the food industry. Eating healthy truly is a preventative cure for so many of the causes of death in our country.

Processed food lacks essential nutrients and is packed with ingredients you can't pronounce that come from a factory. Because of how fibromyalgia affects the digestive system, it's especially important to eat foods high in fiber.

Along with diet, it's important to stay as active as you can. I used to ride rodeo and jumping. I used to hike, run, and roller-blade. I don't do any of those anymore {see where the depression comes in?}. Now, walking several blocks can be a challenge (due to both fibromyalgia and chronic back pain from degenerative disc disease that led to a spinal fusion). Now, the stairs might as well be Mount Everest. But pushing yourself to take a couple walks a day will help both your body and soul.


Have a Support System


Having supportive people in your life is huge. Mr. 67 understands me {probably better than I understand myself} and knows my limitations. He plans things to be as time and energy efficient as possible. He does the hard stuff and heavy-lifting. He lugs the stroller and carseat and I grab the diaper bag. I make a list and he does the shopping. He's learned to be spontaneous and seize the moment when I'm having a good day, and not to be disappointed on a bad day when I can't join him in his activities. We don't hike anymore, but we still find things to do that we can both enjoy, like going to movies, making a picnic in the park, or on a good day, going to the conservatory.

My mom lives with us, and she makes my life so much easier. She does the laundry, because she doesn't mind doing it and folding clothes makes my arms burn. She's also just plain thoughtful, and always trying to think of ways to make me smile. Since I lost my dad, I've realized just how much your parents are an umbrella over you, always protecting you when they can. There is no one else who loves you more than the people who gave you life.

It's also important to keep toxic people out of your life. It's not easy to cut someone out of your life, but if you are surrounded by people who take advantage of you or use you, you will never get to the place of peace you need to heal.


Know Your Limits


One of the hardest things for me to do is to give myself a break--from guilt. There is always this nagging voice saying "You should be doing something." I try to remember that if I overdo it today, I will pay for it tomorrow. This blog has helped in that regard. It gives me a chance to take a break, sit down, and feel like I'm doing something productive. Feeling useless or like a burden on the people you love doesn't help the depression and anxiety that comes with fibromyalgia, so learn what you can and can't do and do what you can. Maybe I can't get down and scrub the floors, but I can usually scrape together the energy to cook supper. That makes me feel like I am contributing to the well-being of my family in a positive way, and they are far more likely to appreciate chicken piccata than a clean floor {i suppose that's debatable}.

Along with knowing your limits, you have to know when to say no {or at least maybe}. You may want to explain to others why you can't commit, but don't feel like you have to. You don't have to say yes to everything. I struggle with this all the time, because I feel guilty that I'm letting people down. That's especially hard when it's people you love, but people who love you will understand.



 Find Something You Love to Do



It's hard to go from being an active, healthy person to one with chronic pain and fatigue. It's hard to say goodbye to the things you loved to do and adapt a completely different lifestyle. It's hard to look back and know it will never be like that again: that life is over forever and all that's left is the memories. I think that's why I love scrapbooking. Not only do I get to relive some of my favorite memories, but I get to be productive and create a lasting heirloom I will enjoy for the rest of my life. I also spend a lot of time taking photographs and editing them in photoshop. My photo file is one of my most prized possessions. If there was a fire, I would save my cats, then my hard drive (after my people, of course).

Getting into arts of some kind is therapeutic. By focusing on a project you enjoy, you lose yourself and forget your anxieties and aches {even if they're never far off!}, even if it's only for a little while.


Count Your Blessings (The Power of a Positive Attitude)



It's hard, but counting your blessings goes a long way in coping with fibromyalgia and chronic fatigue. Things can always be worse. Yes, pain and fatigue suck, but there are people out there suffering with cancer pain and potentially dying. There are women out there who can't have children. There are people who don't have a supportive spouse. Even when I'm at my worst, I try to remember it could always be worse. And no matter how bad I feel, there is always this face to light up my world.




On days when I feel like giving up, he is my reason for living. They say God gives you what you need, not what you want. I guess he wanted us to be a family of two for a while. Zae came when I most needed to focus on the positive instead of the negative.

What it comes down to is that life is forever different, and all you can do is deal with it as it comes. There's no point in dwelling on the negatives. That rings true for everything, not just coping with fibromyalgia. It's a skill that takes practice. You get one life. Choose to be happy!

Until next time, remember your favorite things, and then you won't feel sooooo bad.

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