Stephenie Hamen

@stephenie003 | contributor
fibromyalgia warrior, migraine survivor, anxiety and depression fighter, artist, writer, mother of 2
Stephenie Hamen

How I Explain What Fibromyalgia Feels Like

Someone once asked me to describe what fibromyalgia feels like. Well, not just one person, but I began thinking about how to explain it when the first person asked. Over time, my description has morphed a bit, but I have found one description that people seem to understand the most. There are a lot of different ways fibromyalgia impacts people — we might have the same diagnosis, but everyone’s journey, symptoms and experiences are different. I have told people about the “spoon theory” as well as other descriptions. This one, however, seems to work the best for me. When people ask me now about my fibromyalgia, I find they aren’t being nosy — they are actually curious and/or concerned. Instead of just blowing it off with a one-sentence response, I give them a few minutes of time to help them get a glimpse, without freaking them out. Here’s how it goes: One day I woke up and I thought I was getting the flu. I had that all over achiness, I felt run down and tired, plus I was in a haze — it was like walking in a fog. We’ve all had that, right? It is usually the first indication a nasty bug is about to settle in and mess up a few days of our life. We might take something, hoping to keep it at bay, but usually it is too late and we are down until it passes. It might be a stomach bug. It might be a cold. We might win the lottery and get both at the same time. Whatever it turns into, however, we have that day of all-over yuckiness to prepare us for what is to come. Now, imagine waking up in that pre-flu state every day. Like every. Single. Day. Some days are better than others. Some days it feels like the full-blown flu. Other days I am pretty good and go about my day. There are flares that cause additional issues with specific pain points, IBS issues, migraines and more, but the average day is like walking through, working through, living through, loving through, laughing through and crying through a pre-flu state. This illustration seems to bring it home to people — everyone has had those crappy days so it is easy for them to relate to that illustration of what it is like. Luckily my current medication regimen works well to keep my fibromyalgia more manageable and tolerable. For some people it is much worse, so I am blessed to have found great doctors and have been able to get it to a level that allows me to live my life pretty unencumbered.

Stephenie Hamen

Dealing With Grief and Learning to Accept Yourself With Fibromyalgia

About six years ago, a part of me died. I was diagnosed with fibromyalgia and my world changed. While I was happy to have a diagnosis, and one that wasn’t life-threatening, I realized that things were never going to be the same. I wish I could say that things were different, but they aren’t. By definition, a chronic illness is something that you will live with – forever. Mine is manageable and doable, but it never goes away. Early on I struggled to keep myself positive. I went to therapy. I consulted the pain clinic and made a plan. I journaled. I did yoga. I meditated. But every night, as I got ready for bed, I was reminded of my current state. And it was devastating. I was always active – both physically and mentally. I found that I could not handle activities that had once come so easy to me, like second nature. My brain had a hard time focusing on reading a book. My body would not cooperate for the types of workouts and sports that I was used to. Even snuggling my kids was difficult at times.  I used to cook and clean and workand play at a high level. I was working towards an active and rewarding life and then BAM — I hit a wall. One of the ideas I had to come to terms with was the “death” of the old me. I had to mourn who I was and who I thought that I would be. I needed to take time to sit with this and process it like any other death. I went through the stages of grief until I hit acceptance. I spent most of my time in the “bargaining” phase, begging God and the Universe to take it back. I made promises out loud and in my heart to try and “fix” what I was dealing with. I prayed and cried and screamed. I had horrible panic attacks that were both emotionally and physically horrendous and I felt so stricken by fear and denial that I couldn’t move out of the spiral I found myself in. I was here, in this abyss of self-loathing and denial and misery for over a year. I hid what I could, but it permeated my life. It has forever changed important relationships in my life. I had to accept the “death” of the old me. And eventually, I did. But it has come with a price. I have a new normal, a new vision and version of living. And that has impacted me so much that I have come out on the other side as a very different person. A person that I am not sure everyone loves. There is something extremely hard to describe that happens when you go through this change, this so-called “death.” If you make it through and you find ways to cope, there is a whole new reality on the other side. It is a rebirth of sorts and you have a new normal. You have a hope and desire for life that fills you. I still find myself slipping into different stages of grief here and there – if something happens in my life that reminds me of that “old”version, I can be knocked back, but the longer I am away from that initial moment in time when I was heartbroken at my core, the easier I bounce back. Certain situations, discussions, and events can rock me, but they are fewer and farther between, for which I am grateful. As I move forward in life, I embrace things that make me happy and keep me healthy. I am getting better at saying “no” and finding ways to love my new normal. While it was a metaphorical death, I am still here. Dreams and plans might have vanished, but I am still here. It is up to me to make the most of every minute and encounter I have in this rebirth. And I hope you can find peace with yours.

Stephenie Hamen

What It’s Like When Secondary Issues Impact Your Chronic Illness

One of the things about having fibromyalgia and chronic pain is that you are battling a silent, invisible war within your body every minute of the day. Some days are better than others. Some days are unbearable. As you navigate the illness, you learn what the impacts of different activities are on your ability to function as close to “normal” as you can. You find a routine that works and you learn to make adjustments as needed. Then one day you wake up and a secondary issue has emerged. You are left dealing with you underlying, chronic illness and now you haveanother battle to tackle. It could be the flu. It could be an injury. Now you have to figure out how to manage those symptoms along with your chronic illness. For me that happened in the form of a fall that left me with a torn tendon in my wrist. Luckily for me, it is in my non-dominate wrist, but it has impacted me more than I think I expected. Since getting diagnosed a few years back, I have had colds and the flu and have dealt with them as they cropped up. They took me down harder than I believe that they would have before my illness, but I figured out how to handle them — I slept and slept and slept. I took the time I needed to just recover, and it was easier because nobody bats an eye when you have nasty snot and you sound miserable from those symptoms. Now, however, I am finding it harder. Why would a wrist injury cause me to be so run down all of the time? Why are my flares worse in other areas of my body when my wrist is the issue? Here’s my theory: My body is already fighting a war — daily. I’ve now asked it to fight an additional attack on a different front, one to heal a pretty decent injury. It can only do so much and something has to give. The acute issue becomes the focus and the ongoing one takes a backseat, leaving it to grow and fester in the background. Flares increase. Exhaustion increases. With the pain of the injury and the ongoing process of therapy, mixed with braces to help protect it and steroid shots to aid in healing, things like sleep also take a hit. So now my body is trying to heal an injury and my already struggling sleep situation is magnified and increased, impacting my fibro. So the question becomes, what can we do when we take a hit like this? My best answer is to rest and focus on healing the acute issue. I’ve been dealing with mine for seven months now, and just this week they put me on restricted work. I’ve pushed through up until now, working my full time job, plus doing my side hustle as an artist. I am raising two teenage boys (yikes!) and running a household. Then I got another shot of steroids and a very restrictive brace on my wrist, making manual work impossible for the next six weeks. Do I want six weeks off of work? No. Can I afford it? Definitely not. But will it impact my overall health? I think it will. I may be dealing with the additional stress of not working, plus I have that lingering thought in my head that my body continues to betray me and the feeling of total “uselessness” is not fun either, and yet… I rested yesterday and I am forced to not do daily household tasks on top of my work tasks. It is a forced “time out.” I’ve been put in the penalty box, and while I am not happy about it in several ways, I believe it is actually the best thing that could’ve happened. I am forced to heal and to take care of myself in a way that I haven’t done — ever.  The pain in my wrist is enough that, with the brace (a glorified immobilizing cast I can take off to shower), I am deterred from even trying to do things. It reinforces the need to say “no” to things and to ask for help (which I hate doing with a passion). Will my wrist be better in six weeks? I don’t know, but I hope so. Will my overall health be better in six weeks? Maybe. Is it easy or fun? No. (Well, OK, maybe on days when I can just binge watch something on Netflix it can be, but that will grow old.) As of today, I am hopeful. Hopeful that this forced break will help heal more than just my wrist, it will heal some of the other underlying issues and struggles that I have. It won’t take my illness away, but maybe it will help me to gain some perspective and some energy in order to better deal with it. Maybe, just maybe, this secondary injury will be the lesson I have been missing and at the end of the time out I will have a whole new perspective on my health, my body and my mindset. And, if not, I can at least feel confident in knowing that I have seen every episode of Game of Thrones, twice.

Community Voices
Stephenie Hamen

How to Balance Your Holiday Expectations When You're Sick

I am not sure about you, but this time of year is one of my absolute favorite times of the year. The only issue is that it is also the hardest for me since I was diagnosed. It’s not due to my depression flaring up or the anxiety of the in-laws coming. That does happen, but that’s not what costs me the most right now. It’s because I am no longer the “doer” that I used to be. I’ve always “done” the holidays. I cook, bake, decorate, hand make, individually wrap, customize, and personalize down to the last detail. You take a cookie plate to work? Awesome. I did whole cookie displays with decorations, labels, all scratch made cookies and treats, with coordinating plates and napkins. It was more experience than snacking. And I did that while still working full-time, having my art business on the side, raising two kids, and handcrafting gifts for teachers, family and beyond. I barely slept some nights and I loved every single solitary second of it! Now if you get a cookie that I made, it is a miracle. My youngest is old enough to bake and loves it, so he makes most of our holiday treats. If I make you a gift, I must really, really love you — because that doesn’t happen anymore. I feel like a complete and utter failure most of the time now during the holidays. I look at the scrapbooks I made with pictures of our magical holiday adventures and I lose it, tears flowing down my face. First, there are no current scrapbooks. Second, I haven’t taken “good” pictures with my camera in years – I use my phone. Third, I am happy that we got the Christmas tree up already this year – that’s a win. There are no new handmade ornaments or home décor pieces gracing my home, tied to this year’s theme (which I don’t do anymore). Gift bags are my best friend and not just for the hard-to-wrap items. This is hard for me. I want to be able to create the kinds of experiences that I once did when the kids were younger. I want them to have memories of magic happening – maybe I secretly also want them to remind their friends how awesome their mom is for making things for them. Instead, I’m so tired from yesterday’s decorating that today I am still in my pajamas and laying on the couch. There are no cookies baking. There are no presents already wrapped and under the tree with handmade gift tags. I haven’t even started shopping yet. But the truth is my kids don’t seem to really care too much. Yes, there are times when they might say something about the lack of cookie varieties or why the tree isn’t up yet, but normally they are truly wonderful and just go with the flow. For that, I can say, I am blessed. Here’s the truth: I want you to remember that your family feels the same way. They are just glad you are able to share this time with them. Curling up together to binge-watch holiday movies means so much. Sipping on hot chocolate while helping with tasks and enjoying holiday music will stick with them just as much as your more elaborate efforts, sometimes more. Since getting sick, I’ve found that I am more engaged in the smaller moments than I was before. I spent so much time creating and making the magic that I rarely sat down to enjoy the ambiance of it. The moments I create now are different, more personal, and in a lot of ways, more special. Cuddles on the couch while laughing at Buddy burping loudly or singing along to “White Christmas” means so much to me and to my family. Being chronically sick is not fun and it takes a lot away from you. This time of year can be particularly hard for a lot of people, me included. I’m not saying I don’t still fight myself on what I expect to do versus reality, because I do. However, I have learned over the last six or seven years that I need to let go of some of those expectations and go easy on myself. The best gift I can give myself this holiday season is a bit of slack and empathy. I’m not the same and neither are our holidays, but that’s OK. So if you’re feeling “less than” this holiday season because of illness, I have one wish for you: Enjoy and embrace the small moments and create memories that warm your heart all year long.

Stephenie Hamen

How to Balance Your Holiday Expectations When You're Sick

I am not sure about you, but this time of year is one of my absolute favorite times of the year. The only issue is that it is also the hardest for me since I was diagnosed. It’s not due to my depression flaring up or the anxiety of the in-laws coming. That does happen, but that’s not what costs me the most right now. It’s because I am no longer the “doer” that I used to be. I’ve always “done” the holidays. I cook, bake, decorate, hand make, individually wrap, customize, and personalize down to the last detail. You take a cookie plate to work? Awesome. I did whole cookie displays with decorations, labels, all scratch made cookies and treats, with coordinating plates and napkins. It was more experience than snacking. And I did that while still working full-time, having my art business on the side, raising two kids, and handcrafting gifts for teachers, family and beyond. I barely slept some nights and I loved every single solitary second of it! Now if you get a cookie that I made, it is a miracle. My youngest is old enough to bake and loves it, so he makes most of our holiday treats. If I make you a gift, I must really, really love you — because that doesn’t happen anymore. I feel like a complete and utter failure most of the time now during the holidays. I look at the scrapbooks I made with pictures of our magical holiday adventures and I lose it, tears flowing down my face. First, there are no current scrapbooks. Second, I haven’t taken “good” pictures with my camera in years – I use my phone. Third, I am happy that we got the Christmas tree up already this year – that’s a win. There are no new handmade ornaments or home décor pieces gracing my home, tied to this year’s theme (which I don’t do anymore). Gift bags are my best friend and not just for the hard-to-wrap items. This is hard for me. I want to be able to create the kinds of experiences that I once did when the kids were younger. I want them to have memories of magic happening – maybe I secretly also want them to remind their friends how awesome their mom is for making things for them. Instead, I’m so tired from yesterday’s decorating that today I am still in my pajamas and laying on the couch. There are no cookies baking. There are no presents already wrapped and under the tree with handmade gift tags. I haven’t even started shopping yet. But the truth is my kids don’t seem to really care too much. Yes, there are times when they might say something about the lack of cookie varieties or why the tree isn’t up yet, but normally they are truly wonderful and just go with the flow. For that, I can say, I am blessed. Here’s the truth: I want you to remember that your family feels the same way. They are just glad you are able to share this time with them. Curling up together to binge-watch holiday movies means so much. Sipping on hot chocolate while helping with tasks and enjoying holiday music will stick with them just as much as your more elaborate efforts, sometimes more. Since getting sick, I’ve found that I am more engaged in the smaller moments than I was before. I spent so much time creating and making the magic that I rarely sat down to enjoy the ambiance of it. The moments I create now are different, more personal, and in a lot of ways, more special. Cuddles on the couch while laughing at Buddy burping loudly or singing along to “White Christmas” means so much to me and to my family. Being chronically sick is not fun and it takes a lot away from you. This time of year can be particularly hard for a lot of people, me included. I’m not saying I don’t still fight myself on what I expect to do versus reality, because I do. However, I have learned over the last six or seven years that I need to let go of some of those expectations and go easy on myself. The best gift I can give myself this holiday season is a bit of slack and empathy. I’m not the same and neither are our holidays, but that’s OK. So if you’re feeling “less than” this holiday season because of illness, I have one wish for you: Enjoy and embrace the small moments and create memories that warm your heart all year long.

Stephenie Hamen

Experiencing Brain Fog Before a Fibromyalgia Diagnosis

I walked into the kitchen… and then I just stood there. I glanced around, looked at my hands, and looked back behind me. What in the world am I doing in here? Has this ever happened to you? I’m sure it has – it happens to everyone now and then. The difference this time was that it was the third or fourth time that morning I had done something like that. My brain was just not fully functioning. It scared me. I went to work and realized something else – I had post it notes everywhere, and I mean everywhere. Notes on the phone to remind myself to make a call that was already on the checklist I had created in my notebook. Notes on the computer screen reminding me to be sure to email someone. They were on the notebook page of “to-dos,” telling me to add a couple things to the list itself. I even used the virtual ones on my computer as a way to keep track of things. When did this happen? How did this happen? What was going on? I have always been a very type A, checklist-making overachiever and workaholic, with some anal retentive tendencies. I prided myself on my ability to multi-task, finishing projects before they were due. To forget the most mundane things, that was terrifying. I found I was talking to myself more, too. I was practicing for conversations or food orders or whatever situation I found myself in. I’d go over my order in my head or quietly to myself in my car so that I didn’t stumble and stutter my way through it. I had to practice my coffee order in the car before I could give it at the counter. I was lost. And this was the start of the path to my eventual diagnosis of fibromyalgia. The brain fog came first. The pain and other “fun” bits came along for the ride, but this “lack” in my mental capacity came first, the harbinger of bad news. Years have passed and yet I still find myself relying on some of these tricks to get through the bad fog days, which luckily, have decreased somewhat. There are more good days than bad now, but there’s always a bit of haze that I fight through each day. I have learned some tricks that have helped me to keep ideas moving and the fog to a minimum. It has taken time and patience, mixed with a lot of trial and error, but here are a few that have worked for me: 1. Write it down. If it isn’t written, it doesn’t exist. Now that can mean actually pen to paper, Evites, or notes in my phone, but it must be written down. That said, find a system that works for you. For any and all events, calendar reminders that are in my laptop and synced to my phone are a must. Pen to paper has specific rules so I don’t end up lost in post-it note hell. And quick things, like shopping lists or where I parked, go in my phone notes. 2. Be aware of your diet. For me, I do a lot better when I am eating full vegan, with lots of green leafy veggies. As awful as that might sound, it works for me. Maybe cutting sugar or caffeine will work for you. Then it becomes a game of chicken to see who wins your need for symptom relief or that big, cheesy piece of pizza. (Hint: sometimes cheese, butter and eggs will win, but far less than they used to!) 3. Talk to your doctor. Be honest about what is happening. Share what is working and what isn’t. If you can’t have that conversation with your doctor, find a new one. I was really lucky on the doctor front and have had a wonderful team of women that listen and are supportive. I’ve had a bad brush with a doctor or two, but compared to others in this community, I am #blessed. 4. Love yourself. Yes, it’s frustrating, embarrassing, and awful to pull into the Target parking lot and have a) no clue how you got there and b) why you drove there at all. But, you shake it off, park the car, grab a cart, and enjoy the peace of walking thru the store until something sparks your memory. We would never be as hard on anyone else as we are on ourselves. We’d forgive others 99 percent of the things we don’t forgive ourselves for. Take time to remind yourself that you’re trying and doing the best you can with the current crappy hand you’ve been dealt. (Somehow I have five cards and I’m not sure what I am playing — I’ve got an ace of clubs, a reverse Uno card, a Skip Bo card, and a pair of twos.) Make the best with what you have and give yourself the love you would show anyone else. 5. Be open. When I’m having a particularly bad day, I tell my family. They need to know. What we deal with isn’t outwardly visible so sometimes they need a gentle reminder especially on bad days. If something goes amiss elsewhere, I’ll call “my bad” as needed and get it fixed. 6. Find an outlet. If walking and exercising help you to burn off your frustration, by all means, strap on some tennis shoes and get moving. Some people do yoga and meditate, while others dance, heroically and epically, around their kitchen. Other people journal or write poetry. Still others paint. Find a way to express yourself and your feelings, burn off the energy associated with the frustration, and refocus yourself. Lose yourself in something, anything that lets you be you and heals you from the inside out. Get coffee with your friends. Read that new book. Make time to remind yourself of who you are beyond your fog. Now, there are dozens of other ideas, but these are a few that have made a difference in my life. Don’t be afraid to embrace how much it all sucks – it is more empowering than you know. While it is a chronic, frustrating symptom, it doesn’t define you or your life – it is just a footnote in your journey.

Community Voices

Need Your Help - Art Installation

As a fibromyalgia sufferer, I am acutely aware of what it is like to live with chronic and invisible illness. I have thoughts and feelings that go along with living this way that often remain hidden from others. I use art as a way to express myself and feel like my old self.  Moving into 2020, however, I have been given an amazing opportunity to create an installation for a gallery in Madison, WI, all about what lies under our skin as people with invisible illnesses.  
And now I need your help. I want to have other voices, feelings, beliefs, etc... represented in the artwork. I'll include my own statement, but I want to have the voices of others represented and I am hoping some of you might want to participate.
You can answer either or both statements below as a way of helping me create some abstract artworks to represent our illnesses. I can't make all of them - it is a small space - but I would love to include as many as I can.
So... here's what I am hoping you can do. Complete either of these statements:
I believe ___________________. (I believe tomorrow will be better or I believe in the power of positive thought or I believe that no one will ever diagnose me - it can be positive, neutral, negative, whatever!)
I feel ________________. (I feel sick all of the time or I feel hurt when people forget about my diagnosis and just get mad at me for bailing on them - same rules as above.)
Those chosen and eventually used will have their name and their statement included in the exhibit and, if possible, a photo of you with your statement, too - still working on that part.
Thanks in advance for helping with this - I can't wait to see what everyone comes up with #InvisibleIllness #ChronicIllness #ChronicPain

30 people are talking about this
Community Voices

Need Your Help - Art Installation

As a fibromyalgia sufferer, I am acutely aware of what it is like to live with chronic and invisible illness. I have thoughts and feelings that go along with living this way that often remain hidden from others. I use art as a way to express myself and feel like my old self.  Moving into 2020, however, I have been given an amazing opportunity to create an installation for a gallery in Madison, WI, all about what lies under our skin as people with invisible illnesses.  
And now I need your help. I want to have other voices, feelings, beliefs, etc... represented in the artwork. I'll include my own statement, but I want to have the voices of others represented and I am hoping some of you might want to participate.
You can answer either or both statements below as a way of helping me create some abstract artworks to represent our illnesses. I can't make all of them - it is a small space - but I would love to include as many as I can.
So... here's what I am hoping you can do. Complete either of these statements:
I believe ___________________. (I believe tomorrow will be better or I believe in the power of positive thought or I believe that no one will ever diagnose me - it can be positive, neutral, negative, whatever!)
I feel ________________. (I feel sick all of the time or I feel hurt when people forget about my diagnosis and just get mad at me for bailing on them - same rules as above.)
Those chosen and eventually used will have their name and their statement included in the exhibit and, if possible, a photo of you with your statement, too - still working on that part.
Thanks in advance for helping with this - I can't wait to see what everyone comes up with #InvisibleIllness #ChronicIllness #ChronicPain

30 people are talking about this
Community Voices

Need Your Help - Art Installation

As a fibromyalgia sufferer, I am acutely aware of what it is like to live with chronic and invisible illness. I have thoughts and feelings that go along with living this way that often remain hidden from others. I use art as a way to express myself and feel like my old self.  Moving into 2020, however, I have been given an amazing opportunity to create an installation for a gallery in Madison, WI, all about what lies under our skin as people with invisible illnesses.  
And now I need your help. I want to have other voices, feelings, beliefs, etc... represented in the artwork. I'll include my own statement, but I want to have the voices of others represented and I am hoping some of you might want to participate.
You can answer either or both statements below as a way of helping me create some abstract artworks to represent our illnesses. I can't make all of them - it is a small space - but I would love to include as many as I can.
So... here's what I am hoping you can do. Complete either of these statements:
I believe ___________________. (I believe tomorrow will be better or I believe in the power of positive thought or I believe that no one will ever diagnose me - it can be positive, neutral, negative, whatever!)
I feel ________________. (I feel sick all of the time or I feel hurt when people forget about my diagnosis and just get mad at me for bailing on them - same rules as above.)
Those chosen and eventually used will have their name and their statement included in the exhibit and, if possible, a photo of you with your statement, too - still working on that part.
Thanks in advance for helping with this - I can't wait to see what everyone comes up with #InvisibleIllness #ChronicIllness #ChronicPain

30 people are talking about this