Q&A: Step Outside of Your Pain with Julie Ryan — Chronic Illness Warrior & Count My Spoons Blogger
Julie Ryan is the renown creator and writer of Counting My Spoons, a blog she began in 2010 at the start of her journey with Fibromyalgia — a diagnosis that began with temporomandibular joint dysfunction (TMJ), endometriosis and thyroid issues. These conditions do not define this psychology degree holder, freelance writer, and online marketer — they are just what she has to live with.
The Huntsville, Alabama, resident is more than her illness. From hopeless to hopeful, and sad to inspired, she's discovered how to live her best life despite her illness with the mission to do the same for others.
Counting My Spoons originated from the Spoon Theory by Christine Miserandino — (The spoon theory is a disability metaphor used to explain the reduced amount of energy available for activities of daily living and productive tasks that may result from a disability or chronic illness). When Julie was first diagnosed, the formula inspired — after the words resonated, she knew what her title would be.
You can expect to see this chronic illness warrior enjoying life. Julie stays busy motivating others while fulfilling her passion for writing on countless well-known websites, including ProHealth Inspiration Corner, HealthyWay.com, HealthLine, Answers.com, Natural Awakenings Magazine as well as The Chronic Illness Blog, that she started early last year. Julie has also been a guest on a number of podcasts, Facebook Live sessions, and Fibromyalgia summits.
Sharing her journey in an attempt to educate and inspire others who are dealing with similar health issues is her mantra. The strongest people are not those who show strength in front of us, but those who win battles we know nothing about. Fibromyalgia is an invisible disease which Julie battles every day, not only fighting but winning. Join the fight today and visit http://countingmyspoons.com to be inspired by Julie's story.
Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.”
Q: Julie, can you tell us a little bit about yourself?
A: I’m just another chronic illness warrior just like you guys at BackerNation. My journey started with TMJ and then turned into fibromyalgia, endometriosis and thyroid issues. I also have cluster headaches and chronic migraines to deal with. But, that’s not who I am, that’s just what I live with.
As far as hobbies go, work is a hobby for me. To be honest with you, I spend about 90 percent of my time online, between my blog, Counting my Spoons and Chronic Illness Bloggers, the blogger network I started last year.
I love working with others to help fellow bloggers and chronic pain patients live their best lives. We may be in pain, but we are not going to stop living. That's essentially my mission. I share my journey in an attempt to educate and inspire others who are dealing with similar health issues.
When I'm not writing, I'm usually still online (Julie said while laughing). I can't lie, I just love online poker and am pretty good at it, too.
I also read a lot — normally two books at once. I enjoy fiction before bed and nonfiction when I'm relaxing in the bathtub. I love leaving my reality for a while and being engaged in someone else's. I think that's why anyone loves to read. You get to enter another world without leaving yours.
Q: I hear you are a renowned blogger and writer, can you share how it all came to be (inspirations/how it got started)?
A: I began the blog in 2010 when I started my journey with Fibromyalgia. The title of my blog originated from the Spoon Theory by Christine Miserandino. She’s an amazing writer and has inspired me in so many ways. When I was first diagnosed, a friend introduced me to this “theory” and it really resonated with what I was going through, so I adopted it (as many others have) and when I thought about what I would name my blog, I realized that it had to be “Counting My Spoons.”
I’ve learned how to manage my illness, and I hope that I can help others do the same. At the very least I hope I can help people live an inspired life despite their chronic illness.
Q: What is your official diagnosis and how long did it take to pinpoint the cause of your symptoms?
A: My primary diagnosis is Fibromyalgia, but I also have TMJ disorder, chronic migraine, cluster headache, endometriosis, IBS, and a thyroid disorder.
I think I got really lucky. Yes, I made my rounds of doctors — one after another, the next one more confused than the last. Blood test after blood test. I remember everyone first thought I had MS. The tests were negative so it was back to square one. The neurologist ran so many blood tests after that it wasn’t even funny. I remember them trying to pull blood from me. After 16 tubes of it, my body couldn’t take it. We had to stop in the middle. It started getting difficult to get the blood out because I was so dehydrated. I needed water. I needed food. I needed a break. The doc got as much as he could and then finally said to take a break. Still, everything was negative. No one knew what was wrong with me. It was frustrating because they knew I was in pain, I knew I was in pain and no one knew why.
Ironically enough, it was a good friend of mine who put two and two together. This friend was a fibro patient and ran a local fibro support group. She had thought I had fibro for a while but didn’t want to be the bearer of bad news. She didn’t want to be the one — the messenger. Don’t kill the messenger is what she must have been thinking. But, when the doctor said, I don’t have any answers, to another doctor I went. Doctor visit after doctor visit, I was then sent to a rheumatologist and decided to take what my friend said seriously. Thank God for this friend.
While at the rheumatologist, I said to the doctor, “What about fibromyalgia?”
The doctor actually thought about it for a while and said, “Well, maybe.”
He gave me a pressure point test, which I failed. My body reacted to literally every pressure point. He came back and said, “Yes. You have it.”
My official diagnosis is fibromyalgia, endometriosis, hypothyroidism, TMJ, migraines and cluster headaches.
Q: How long have you been a chronic pain patient? It doesn't have to be the start of your diagnosis just when you started feeling pain all the time.
A: Looking back, I feel like I’ve had symptoms for over 15 years. It seems as if I’ve been in pain forever. I remember even in high school when I had chronic mono. I’m pretty sure that’s how everything else began.
Things really came to a head in February of 2010. I remember this week very well — it was a week of what I thought was the flu. At that point, I was in school so I pushed through the pain and carried on despite how awful I felt. It appeared to only be aches and pains with cold-like symptoms along with a fever. I remember when I finally realized I had a fever, but other than being cold and achy I really didn’t feel that bad so I just kept pushing.
When the fever went away, the aches never did. The fatigue and tired feeling got worse. It felt like I constantly had something poking in my eye. I’d wake up with my arms and hands totally numb — the symptoms just kept piling up. That is when I started doing research and advocating for myself. I knew that no one was going to fight for me but me, so I took it to the internet and began learning about chronic pain.
Q: What exactly is Fibromyalgia?
A: I think I’ll stick to a textbook response. Fibromyalgia is basically a form of widespread chronic pain. As simple as that sounds, it’s so not. The pain travels throughout your entire body. Pain is everywhere — everywhere. Most of us spoonies tend to carry it more so in one specific place as most of mine hangs out in my neck and shoulder regions.
Q: What is the most common misconception about Fibromyalgia?
A: I’d say the biggest misconception about fibromyalgia is that it isn’t real. Plain and simple — our pain is real. It's essentially an invisible disease so no one can physically see the pain I'm in, but I know it's there.
This is a very big thing. Society needs to understand that it’s going to be different for everyone. Just because I can do things, doesn’t mean everyone else can. And just because I look healthy and am staying active, doesn’t mean I am not in pain.
Q: Can misconceptions about Fibromyalgia be harmful and if so, how do you deal?
A: Anyone doubting you can be hurtful. The fact someone either you know or a stranger is doubting your truth — yes, that hurts.
For me, other than a few online trolls, most people in my life including my family have been very understanding, so I consider myself lucky to not have to deal with this at home.
Every once in a while, there will be someone who will write something to me online saying that I’m faking it. They write something along the lines of, “If you are so sick then how are you able to keep up with this blog and stay active like you do?” Something like that.
When that happens and if that happens to anyone else, I say to kill them with kindness. They don’t know my daily struggles. They don’t know my bad days. They only see what’s out there and not inside my head — inside my pain. I try to write back as nicely as possible and explain that I’m not faking it and try to have them understand that not everyone is in the same place.
Hey, if this was six or seven years ago, I would have looked at my blog with the same thoughts and the same doubt. I was in an awful headspace back then. Depression doesn't even come close to describing how hopeless I felt. It’s hard to see someone who can thrive with fibro while someone else is stuck in bed. Just know your truth and all else will fall into place.
Q: What treatments have you tried? Is one treatment regime better than another, in your opinion?
A: I’ve tried just about EVERYTHING — literally everything. I am thankful to my doctor who recommended physical therapy. Staying active and moving as much as possible really plays a big role in feeling good. My favorite form of therapy was actually aqua therapy and this water-based massage. In the early days of my diagnosis, this was the best thing. I honestly couldn’t stand to be touched. Everything hurt and a touch just made it all that much worse. I would float and let the water move and massage over me. Not only was it pain relieving, it was really relaxing. That was pretty much the only time I felt okay.
Besides that, I tried all the standard pain and fibro meds, but honestly found no relief from them. My body is very sensitive to medications and it seemed that every possible side effect that could occur, common or uncommon, affected me, even more so than my pre-med symptoms. The pills were just throwing my body more out of whack. If the side effects were making my body worse off than just living with fibro, I knew I had to stop them. They were essentially adding symptoms that weren’t already there and trust me, I was in enough pain.
Treatment wise, 2012 was a great year. I opted for diet and lifestyle change over medications and as a result, I lost 40 pounds, managed to decrease or cut several meds, and felt better than I had in at least two years.
It wasn't until I changed my diet that everything started to come together. It really is all about lifestyle changes. I eat differently. I juice daily. I avoid dairy and eggs. I am now able to make the right choices in order to avoid stress, which essentially worsens the pain.
Whether it’s eating right, letting go of toxic people, pacing myself, or simply listening to my body, you have to change the whole picture and not just one photo.
Q: How does diet and nutrition affect your pain and what do you do to limit flare ups from not eating a well-balanced diet? Is there a diet for Fibromyalgia?
A: Oh, yes. Diet and nutrition play such a pivotal role in managing chronic pain. Back when I first started different treatment regimes, someone approached me asking if I considered a diet change. Besides my fibro symptoms, they knew that my stomach had always been very sensitive. They recommended I stop eating dairy. I ignored that advice for a long time, but after two years of this, I was ready to try anything.
I basically did an elimination diet and also had food sensitivity tests run to determine what foods were bothering me. In the end, I found that I needed to cut out gluten, yeast, dairy, and eggs. As a result, I cut out most processed foods as well.
Eating clean isn’t the answer for every fibro patient, but eating clean decreases inflammation, which can be a major cause of pain. If you want to limit your flare ups, it’s definitely worth it to eat clean.
For me, I started my juicing journey back in 2012 and it has changed my life for the better. I created my own elimination diet to see what foods I could eat and what foods I had to stay away from. The first week of juicing, my energy levels were high, my pain was low. I couldn’t believe it. The link is real.
The next week, I added fruits and veggies along with the juicing. This is when the food sensitivity test came back. The results, sensitivity to gluten, yeast, eggs, and dairy. I knew juicing was helping greatly and now I knew exactly what foods I could eat and what ones to avoid.
By week three of my juicing and the elimination diet, I was feeling so much better I even drove from North Alabama (where I live) to South Carolina. It was an eight-hour drive and I did it alone. That in itself was a reason to celebrate. I was en route to stay with some friends who are gluten free. They would show me the ropes because I knew I needed the help. We can’t go through this journey alone and I wasn’t about to. After my visit, I knew I had the tools to do this. I knew this would have to be a lifestyle change, but I wanted to feel good so I accepted it.
In the end, I determined that gluten was the thing that affected my fatigue and chronic pain the most. Other foods bothered me too, but not nearly as much. They mostly just impacted my IBS symptoms.
Q: You seem to have it all together, how do you do it?
A: I always laugh when I hear people ask me that. Sometimes I feel like I really don’t have it all together. (Julie said with a chuckle). I guess we are all faking it until we make it, and I'm no different. I do the best I can with what I have and I think that’s all anyone else can do. I don’t have all the answers nor do I pretend that I do. Some days are better than others. It’s all about pacing, planning, persistence and paying attention to your body. (I chimed in and said the four P’s; Julie laughed in agreement.)
Q: Is it difficult to manage your commitments while being a chronic pain patient? How do you not let it get in the way of fulfilling your goals?
A: There are days when I wake up and I’m like my brain isn’t working. They call that fibro fog. On those days, it’s hard to read an email or even a tweet. And those are the days I say to myself, “It’s okay. I’m not going to get this done right now. I will move the to-do list until tomorrow. And, that’s okay.”
Then, I’ll come back the next day, or sometimes just hours later as things begin to turn on. I try to focus only on the things that I can do. Everything else can wait until I am alert enough to complete them correctly. The more you fight your body, the more pain and frustration you will feel. You have to let it go. You need to take a step back and focus on what you can do. Don’t get hung up on the things that you cannot. Do the things you can and then go back. Sometimes you really need rest. This is where listening to your body comes directly into play.
Q: As a blogger in today's society, what is your connection with tele-medicine?
A: Before we knew what was wrong with me, I said that I did research upon research to try and figure out why I was in such chronic pain. If it wasn’t for the online information, I don’t think I would have been able to pinpoint my symptoms and then report what I found online to my doctor. I thank the internet for all of this and my good friend who alerted me of fibromyalgia.
Q: What's your position on tele-medicine and what are the benefits of online education?
A: I love the idea that online doctors are available if anyone needs them. For chronic pain sufferers, it can be hard to leave the house to make it to a doctor's office. So, the very fact that you don’t have to leave the house to get medical advice is miraculous.
Q: Has tele-health positively affected diagnosis and life with chronic pain? If so, how?
A: Yes. I will say that tele-health did positively affect my diagnosis and life with chronic pain. The fact that online doctors and libraries of information are out there, is so helpful to me and others to learn as much as possible without leaving the house.
From time-to-time, I’ll go to Web MD for a quick check on any new symptoms that may occur. If something comes up, I plug it in to see what the possibilities are. I try to not get sucked in because if taken out of context, the information may have you thinking you have a brain tumor and sometimes, it really is just a headache. We've all been there (Julie added laughingly).
Q: Relating to your specific illness, what does your body feel like on a daily basis and how do you deal?
A: These days, my pain levels are pretty low. I can normally ignore them because of my treatment plan and lifestyle change. On a bad day, I can feel tired and weak. It can feel like I’ve overworked my muscles causing spasms and achiness in my shoulders and neck.
As I mentioned before, I was also diagnosed with cluster headaches as the cause for the recurring stabbing pain in the eye, which hasn’t been too bad lately. Still, some days are worse than others and I will say that the fibro fog is real.
Fibro fog that I also mentioned before — brain fog, also known as brain fatigue — can be mild to severe just depending on the day. It causes mental confusion that can strike without warning. One minute you can be with it and then the next, unable to put two sentences together. When it does happen, it is common to experience a lack of focus, poor memory recall and reduced mental acuity. Those are the days I move my to-do list onward and rest until it clears up.
Q: How does your Fibromyalgia diagnosis affect your relationship with your friends and family?
A: During the height of my illness, I started lashing out at anyone who tried to help me. Deep down, I knew their intentions were good, but I wasn’t in the headspace to understand it yet. I was just really negative so it was easy for me to assume negative intentions of those around me. I hurt so bad and as they say, 'hurt people, hurt people.' I didn't want to hurt anyone, but that's the nature of an invisible disease.
I was involved in several groups — running things and my friends simply wanted to take some responsibility off my shoulders so that I would have the time to heal. I saw it as an attack — that they were trying to take everything I worked for away. That was really bad. I hurt some friendships. It was a back and forth for years. Towards the end, I realized they were only trying to help. They set aside their needs to help mine. What we as chronic pain warriors need to do is learn to step outside of our pain and accept the help.
With pain and uncertainty, comes depression and hopelessness. It didn’t just affect my life, it affected the others around me too. At my lowest point, I considered suicide. That was my rock bottom. I think a lot of us end up there because you don’t live like you used to and it’s hard to grasp that. You lose hope and can't see light at the end of the tunnel. I couldn’t give up but didn't know where to begin because I just hurt so much. The pain transferred to my family and at that point, I became willing to do anything. So, to answer your question yes, my fibromyalgia diagnosis affected my family. It’s essentially a family disease.
Q: How does your chronic illness diagnosis affect your financial state? If it doesn't affect you, can you give advice to someone who it may?
A: I love working. I’ve been self-employed for over 20 years. When I got really sick, it affected my income and my ability to work, which then made me even more depressed. I had to be realistic. I sold most of my business and tried to go back to school, but then I got even sicker. I had to put that on hold — again. I was finally able to return to school once I was better and graduated in 2015. While I was in school I started freelancing writing, and then after graduation, I started Chronic Illness Bloggers.
What I did was look at what I could do and what skills I had, to somehow turn that into an income. I’m not dead yet.
I had to let go of everything I couldn't do and focus on what I could. I’ve seen other spoonies do just this and thrive. From freelancing writing and blogging, like me, to online shops like Esty — think outside the box. Turn what you love into an income and everything else will fall into place.
Q: Do you find there is support for individuals living with chronic pain in the medical community as well as people in general?
A: There is a fair amount of support, but you have to look for it. You have to be active in your recovery. Like I said before, no one is going to fight for you, but you. Hey, we are all chronic pain warriors so fighting is essentially in our DNA. You have to be diligent in your recovery and that's what I did and recommend others to do as well.
The amount of support really varies with medical providers. Some have info on support groups and can guide you to getting help beyond what they offer in their office, others not so much.
As for people in general, I do find that support groups are very important. Whether you go to an actual meeting or an online one, it really puts things into perspective. You don’t have to feel like you are alone. On the bad days, it’s nice to simply turn on your computer and be able to talk to others who are going through exactly what you are, without having to leave the house.
Q: Can you name any tips and tricks for obtaining a solid quality of life while living with chronic pain? Some of our readers struggle with the balancing act that is being a productive member of society and staying pain-free.
A: This ties into the support groups that I mentioned before. These groups help you understand that you are not alone and never were. There are options out there. You just need to find them and connect with other people who can help you and even vice versa. It’s nice to think that my struggles can help someone else turn the page to healing. It’s nice to know they are just a click or drive away.
I’d also say to make yourself understand that everyone is in different places. Don’t compare yourself to others because your story is exactly that — yours. I want people to have hope — hope that this isn’t the end of your life — it’s just the start of something new.
BackerNation feels truly blessed to have spoken with Julie. Describing her story as inspiring doesn't even begin to do her justice — it only skims the surface on how much of a warrior she truly is. Julie not only walks the walk but she talks the talk. Do you guys agree? If so, guess what... Okay, we'll tell you!
The Counting My Spoons blogger is actually featuring BackerNation in a writing a guest post on her very own blog that will be available shortly. Look no further Backers. Your guide to Remedies to Explore for Back Pain Relief is just a few clicks away.