The Struggle to Find Purpose With Fibromyalgia

Anyone who has fibromyalgia or a chronic illness of any kind knows that it takes a toll on your life. Fibromyalgia snuck up on me six years ago and slowly turned my life upside-down. First I had to take it easy and not do so much in one day. Then my social life decreased. Eventually, the pain got so bad that I had a complete physical and mental breakdown, and I had to leave my job. That’s not an easy thing to admit, and it was certainly a hard decision to make as a married woman in my early 30’s, owning a home with my husband.

I spent several months going to doctors, playing everybody’s favorite game, “Trial and Error”, with different medications and treatment methods. I did get some calls and messages asking how I was feeling, mostly from family. I was always embarrassed to tell them I wasn’t doing well. That the medication I was currently on was not working well enough, or that the side effects were too much to handle so I had to switch to something else. It’s difficult to explain to loved ones that getting to a point of “functionality” does not happen overnight, in a week, or even a month. It isn’t like recovering from surgery where in 4-6 weeks you’ll be up and at it again.

Here I am a couple years later. (Yes, years.) I am on treatment that helps my pain and depression, but I am still not able to work a steady job. I am at home every day, merely surviving, not contributing financially to the household, and not having any real reason to wake up in the morning. I was drowning in guilt. Chronic illness had taken away my purpose to live. I was thinking, “Is this it? This is my life from now on?” Oh, hell no.

I’ve never been the “glass half-full” kind of girl. If anyone close to me is reading this, I know they’re laughing and nodding their head. However, this is different. This is my life. I had to take this miserable illness and make something positive out of it. I started by forming an online support group for people with fibromyalgia in my age group called “Fibro Fighters Under 40”. I wanted to form a community of people who truly understood each other in the same stages of life while living with chronic pain. I’m happy to say that it has turned into an incredible group of women and men who have become my “Fibro Family”. I can’t imagine my life without them now. Talk about a silver lining.

I am also a program director in the newly-founded non-profit organization, the International Support Fibromyalgia Network. This is such an exciting opportunity for me because it will allow me to branch out even further and help more people with support and other services. It is an honor to be working with a passionate, hard-working team of fellow fibro warriors and I know we are going to do some great things in the near future.

For those of you who are in that same limbo-type state that I was in, I know it’s hard. But your life is not over. Look at your strengths and what makes you happy while being realistic. We all have a purpose. I had to take a step back and think about what I can do instead of what I can’t. With some encouragement and support from my husband and parents, I’m happy with the path I’ve chosen. Waking up in the morning is not as bad anymore. Well, once the meds kick in.

 

Fibromyalgia 101

Fibromyalgia Awareness Day is this Friday, May 12, and part of spreading awareness is educating people about the condition. Now I know anyone can search Google or WebMD, but a list of symptoms doesn’t give the whole picture. I feel that fibromyalgia is better explained by those who live with it. With that said, as a fibro fighter, I’ll do my best to provide information and descriptions that will help people better understand this illness.

The Basics

Fibromyalgia is a chronic illness that causes widespread pain. It is diagnosed in women and men, and contrary to what many believe, people of any age can have fibro. In addition to pain, the main symptoms of fibromyalgia are fatigue, cognitive difficulties (referred to as “fibro fog”), sensitivity to light and sound, irritable bowel syndrome, sleep disturbances, and migraines. There is no cure and the cause is not yet known.

Pain

Fibromyalgia pain is difficult to explain. The pain is mainly in our muscles and joints, but it can literally radiate from the top of our heads to the tips of our toes. (Oh, how I wish I were exaggerating). We feel throbbing pain, shooting pain, and sharp pain; severe pain, moderate pain, and dull pain. Let’s say you fell down a flight of stairs. You didn’t break any bones, but you have a couple sprains are severely bruised all over your body. You can’t bend down and can barely lift anything. It hurts so much to walk that you need a cane. You stay in bed but you can’t get comfortable because the pain is literally everywhere. Imagine if those sprains and bruises didn’t heal and you had to live with that pain and discomfort every day. Many of us with fibromyalgia feel like that. We use phrases such as “I feel like I got hit by a truck” or “I feel like I got beat up” because the pain is often intense and all over our body.

Fatigue

When people hear “fatigue”, they think “tired”, which is not completely accurate. To feel fatigued, a person doesn’t need to have a busy day or a sleepless night. Performing simple tasks like brushing your teeth or getting dressed are difficult and draining. And taking a shower? That’s like running a damn marathon. Some people with fibro say fatigue is similar to how run-down you feel when you have the flu. Think about the last time you were real sick with a high fever. It was tough to get out of bed and move around, right? Now think about having that feeling nearly every day, on top of the falling-down-a-flight-of-stairs pain.

Treatment

There are many different treatment methods that are used for fibromyalgia. Prescription medication, supplements, medical marijuana, acupuncture, physical therapy, and so on. What I’m about to tell you is probably the most important piece of information to remember: Everyone’s body is different. What works for one person may not help someone else. There are medications that people can’t take due to bad side effects or because it interacts with something else they’re taking. And like other illnesses, there are different severities of fibromyalgia. So please keep in mind, the treatment that worked for your brother’s neighbor’s second cousin won’t work for everyone.

Support

Support from our family and friends is incredibly important to us. I understand that it can be frustrating and/or disappointing when we can’t make it to a social function, especially if we have to cancel last minute. Please know that we don’t want to cancel. We absolutely hate having to miss out on important events. The guilt we feel is often overwhelming. It’s our illness that’s unreliable. The best thing you can do as our loved ones is to believe us and just be there for us. We need your love and support to keep us going, and for those of you who have already been doing that, we appreciate it more than words can say.

Last Words

What I’d like everyone to know is we do the best we can. We have good days and bad days, and unfortunately we have no way of knowing what tomorrow will be. We have to listen to our bodies and know our limits. If we do too much, we’ll be in bed for days. Most of us were healthy, active, and social before we were diagnosed with fibromyalgia. Having a chronic illness like this is life-changing. But we keep going because we are strong. We will continue to fight fibromyalgia every day and hope that down the road, there will be better treatments available.

If you didn’t know anything about fibromyalgia, I hope you learned something! Please support your loved ones with fibro and spread awareness!

2017 Fibromyalgia Awareness Campaign

Those of us with fibromyalgia are constantly fighting. We fight our pain and fatigue every day to be able to function. We fight for proper treatment from doctors and health care professionals. We fight through depression and anxiety. We fight for support from our family and friends. We fight through the trial and error process of various medications and treatment methods.

It’s 2017 and we need positive changes in the world of fibromyalgia!

I want to fight for ALL doctors to be better educated and informed on the latest treatment methods, techniques, and medication.

I want to fight for accurate diagnostic criteria.

I want to fight for more research.

I want to fight for patient-centered care.

I want to fight for us to be treated with more respect from everyone – doctors, nurses, family, friends, and co-workers.
During the month of May, I will be doing my best to reach as many people as I can to help them understand what this fight is about. This is more than spreading awareness. This is a fight to improve the quality of our lives. I think it’s worth fighting for.

Will you join me in the Fight for Fibro?

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A Letter to the Older Crowd from the Young Chronic Pain Crowd

Dear Older Crowd,

I’m writing to you on behalf of the younger crowd, of which I’m a member. I’m not intending to insult your crowd, as there are many people I love in your group. My parents, grandparents, Tom Hanks. However, there are some things I need to discuss with you all regarding chronic pain. I know many of you have arthritis, fibromyalgia, back and knee pain, etc. But you’re not the only ones. We suffer from chronic pain too. There are many things that your crowd has said to us that are frustrating and hurtful.

“You’re too young to be in pain”. No, we’re not. Why do you think younger people are incapable of having chronic pain? Don’t get me wrong, it completely sucks, and I wish I wasn’t in pain every single day. Maybe it’s because you didn’t experience pain until you got older, or maybe you didn’t have a young person in your life who had chronic pain. I don’t know. But saying that phrase is hurtful because it’s as if you don’t believe us. Ever hear of juvenile arthritis? Do some research. Unfortunately there are too many of us that live with chronic pain. So please refrain from saying we’re “too young to be in pain”.

There’s another one that’s quite bothersome. “Wait until you’re my age!” When your crowd says that to us, we hear, “Ha! You don’t know what pain is. You’re young so your pain can’t possibly be worse than mine!” First of all, it’s not a competition. Second of all, you’re once again dismissing our illness and how we feel. Put yourselves in our shoes for a moment. How would you like it if someone didn’t believe you were in pain and passed it off like you were complaining about a hangnail? I’m guessing you wouldn’t feel that great.

Now I know that not everyone over 50 is like this. There are so many supportive and understanding women and men in your crowd. I have a few in my support system. However, I speak to young people with Fibromyalgia on a daily basis in my online support group and I’ve heard several heartbreaking stories regarding interactions with older people. Some were questioned about their handicapped placards, others had rude comments made about using wheelchairs or canes. Oh, and telling young people in chronic pain that they should be thankful they don’t have a terminal illness? Yeah, that doesn’t help us. I’m always appalled when I hear these stories. Please, older crowd, if you’re doing any of these things, I beg you to stop.

I truly hope that this resonates with you, older crowd. Think before you speak. We should all be supportive of each other, regardless of age. Thank you for listening.

Sincerely,

The Younger Crowd

Why I Choose to Talk About my Illnesses

My blog post published by The Mighty a few months ago:

I’ve always been an open, outgoing person. My family and friends know everything about me. If I meet someone new and we hit it off, I’ll talk about pretty much anything. However, when my fibromyalgia got worse, I kept my feelings to myself. I didn’t want anyone to think I was complaining, but most of all, it was difficult to explain. I didn’t know how to express my physical and emotional feelings. I thought no one would understand or care. I also have depression and anxiety. Fibromyalgia may be difficult to explain, but a physical illness can be easier to talk about than a mental illness. Many people are ashamed to talk about mental illness, even with their loved ones. I felt that way at first and kept it all to myself until my invisible illnesses literally became visible. There were days when I walked with a limp, panic attacks occurred in public and in front of family, I had difficulty leaving home, and unfortunately I became too unwell to work. At that point, my immediate family and a couple of close friends were aware of my illnesses, but I still felt ashamed and embarrassed about it all.

The daily struggle I had (along with the typical symptoms of my illnesses) was not having anyone who could relate to my situation. It’s certainly no one’s fault, and I’m glad that many of my loved ones are healthy, but talking to others with the same illness can be therapeutic. The perception of being young is being healthy and active. Typically people around my age (30) are working full-time, have a spouse/significant other, their own home, a social life, and possibly children. Their weekends are always filled with parties, family gatherings, shopping trips, yard work, etc.

My life is completely different. I was young and in pain and I felt so alone, but I knew that I couldn’t be the only one. So, I created a private group on Facebook called “Fibro Fighters Under 40.” I thought making a group for the “younger crowd” with fibro would be beneficial. (No offense to anyone over 40, of course!) Fortunately, I was right. It’s a wonderful group of kind, understanding, and supportive people. It allowed me to talk about fibro and even mental illness more freely and without judgment. I felt like I was able to help others who were in need of support, and there is no better feeling for me than to help someone.

In addition to the fibro group, I began reading more blogs and articles about chronic illness. I was inspired to share my own story to create more awareness and understanding, especially about fibromyalgia, which is often knocked down due to its “mysterious” nature. Until some of my blog posts went public and I read the readers’ comments, I had no idea how many people had lives that mirrored my own. I’m not thrilled with the number of people who battle chronic illness, but I believe connecting with each other is a way to “dull the pain,” so to speak. There are too many people who don’t have support at home and need a safe, non-judgmental place to go. Even if that “place” is on the Internet, it’s a way to exchange stories, symptoms, treatments, and advice. We can support, understand, and relate to one another.

Of course everyone is different and there is no right or wrong in this matter. Some people like to keep medical issues private and only tell their immediate family, others may be more vocal and blog about their experiences. People should do whatever they feel is most comfortable. I wanted to share this because my feelings changed, and both my online support group and writing articles have been great outlets. It has been better for my health to “let it out” than “bottle it up.” It took awhile for me to believe this myself, but I now know that having a chronic illness is nothing to be ashamed of. I didn’t choose to live this way. However, I decided that since I can’t make my symptoms disappear, I’ll work with them instead. I’ll share my thoughts in hopes of reaching people who don’t understand how we live. I’ll continue to support everyone with chronic illness. And I’ll continue to fight like hell.

 

You can view this post on “The Mighty” here

Why My Husband is a Wonderful Fibro Spouse

For those of us with fibromyalgia or any chronic illness, we go through many stages before and after our diagnosis. Our lives change. We grieve the life we used to have and eventually come to accept our illness. However, the adjustments we make affect our loved ones too. I’ve been inspired to write this after hearing from some of my fibro friends that their spouses weren’t being supportive. Maybe they’re misinformed about the illness, maybe they’re having a tough time dealing with the changes. I’m fortunate to have an incredibly loving, supportive husband. I am not here to brag. He is not perfect. No one is. But I believe his actions are worth sharing and may help the fibro spouses/significant others out there.

1. My husband has accepted my illness, just as I have. He believes me when I say I’m in pain. Also, he believes in fibromyalgia. This is the most important step our loved ones need to do. Believe us. Trust us. If you don’t, then that’s a serious problem and it will affect the entire relationship.

2. My husband learned about fibromyalgia. When we are diagnosed (and even beforehand), many of us do research to learn more about our illness. My husband did the same thing. He asked me all different questions about it: what the pain feels like, the treatments available, and so on. Now he understands, to the best of his ability, how I feel. No, he’ll never truly know how I feel unless he’s diagnosed himself, but he learned enough and put in the effort to understand. I appreciate that more than he knows.

3. My husband does all the heavy lifting and other tasks that would cause me great pain. He carries the heavy bags of groceries, takes the garbage out or anything that has to be taken up or down our stairs. I do the laundry, clean the counter tops, tables, dust, and we split the rest depending on what kind of day I’m having. He knows I do what I can, but he doesn’t want me to overexert myself.

4. When we go out, whether it be to a social gathering or running errands, my husband is respectful of my limitations. If we’re out with family or friends and I need to go home after a few hours, he knows it’s because I’m in pain and I need to rest. If we’ve gone to a few stores and have done a lot of walking and my energy is gone, he understands and we go home. There are times when I can’t go out at all, but I don’t hold him back from anything, especially parties and social functions. He’s sad that I can’t make it, but I tell him to go and have a good time. He works hard and deserves to have fun.

5. My husband encourages me to do what I can and NEVER puts me down. He’s proud of me for being active in the fibro community and for writing. He compliments me even when I feel (and look) like hell, he makes me laugh, and enjoys my company, even when I can’t do much.

 

When we got married, we vowed to take each other “for better or worse, in sickness and in health, ’til death do us part.” All I know is that if you love someone, you love them unconditionally. To the fibro/chronic illness spouses and significant others — we know it can be tough. We just want your love and support.

I’m Back!

Hello all! I’m happy to be back! I very much intend to keep my blog updated this time around. It’s a bit more of an “official” blog since I am now more active in the Fibro and Chronic Illness community. I will continue to give this baby a makeover, so please excuse my lack of graphic design skills. I’m in the process of writing a couple new posts, so please stay tuned!

In case you missed it, here is a post I wrote that was published on The Mighty:

Why I Chose to Talk About my Fibromyalgia

A New Low

Depression and anxiety are a fierce combination. They are a strong force that I can’t fight off. I’m at one of the lowest points in my life. I can’t leave my house. Just the thought of being around people sends me into a panic. I’ve had to cancel social functions, appointments and other plans– both last minute and for the near future. I told my husband and mom to count me out of any plans coming up in the next few weeks. I hate canceling. I know I can’t help how I’m feeling and I try my best to show up, but the process I go through isn’t easy.

The last time I was supposed to attend a social function, I knew I wasn’t in a good mindset, but I forced myself to get out of bed and in the shower. It was something important, and I wanted to be there. I ended up having a full blown panic attack in the shower. It was an awful and scary experience. I was home by myself, so I had to crawl out of shower because I was afraid I’d pass out. After awhile, I called my mom. I could hardly speak because I still wasn’t breathing well, and she had to cancel my plans for me. It took a long time for me to come down from the panic attack. Once my breathing and heart rate were close to normal, I got overwhelmed with feelings of guilt and worthlessness. I can’t stand disappointing my loved ones. I immediately think they’ll hold it against me. I do hope they try to understand. I’m not doing this on purpose. I hate feeling this way, but I can’t help it. I’m trying to do what I can to get better, but it’s not a simple fix. Believe me, I wish it was.

My other big issue at the moment aside from being homebound is the inability to initiate conversation. I get anxious when I think about calling or texting someone. I can talk to my husband and my mom, but that’s it. This is how bad it’s become. The loop of negative thoughts continues to circle my mind. I’m uncomfortable in my own skin. I constantly feel judged. I second guess every decision I make, no matter how big or small.

Praying that this will pass. 

Fibro Fighters Under 40

Over a week ago I created a new Facebook group called “Fibro Fighters Under 40”. I’ve been wanting to do it for quite some time, and I’m glad I finally did. I felt like those of us that are younger with Fibromyalgia can relate to each other better and need as much support as possible. Our age group is expected to be healthy, active, working, socializing, etc. Fibro obviously limits us from being “normal” young adults. I’m 29 (the big 3-0 in March) and I’ve found out from my own experience that most people can’t wrap their head around the fact that I’m “so young” and in pain. Nothing against older people with Fibromyalgia, of course! Anyway, there are already 50 members in my group, and I think it is already a success. The members are happy to have somewhere to vent, share, and relate to people close in age who are having similar experiences.

So, if you’re on Facebook, have Fibromyalgia, and are under 40, please join us! Here’s the link: https://www.facebook.com/groups/993810067324193/

Look forward to meeting you!

-Kristin