Julie Ryan

@julie-ryan | contributor
Julie Ryan is a freelance writer and blogger that lives with fibromyalgia, migraines, cluster headaches and endometriosis. She shares her inspirational view of living with chronic illness on her blog, Counting My Spoons. She invites you to connect with her on Twitter, Facebook or via email (julie@countingmyspoons.com).
Community Voices

What do you do for dry eyes

I've been struggling a lot lately with my vision. Dr says it's likely dry eyes. But, I can't seem to focus well on anything. It affects me most when I'm on the computer as that's the time I most need to be able to focus on something very specific. So far none of the drops have helped. She had me try hot compresses and those didn't help either. If anything, it seems to be getting worse. Any suggestions?

3 people are talking about this
Community Voices
MiaB

Do you work a "regular" job, get disability, or work for yourself?

Before I stopped working it had become increasingly difficult for me... having attacks at work, missing work because I couldn't get out of bed, having to take medical leave. If any of you know firsthand, the process of applying for disability is long and drawn out. So I'm at the point where its it's either find a different career path that I am able to do or wait out my disability case, either way I need something to happen soon because believe it or not, I need money to survive and take care of my family. So I have an upcoming job interview for a bank (I have experience in the finance industry) and I am terrified. If I do get the job we all know there's that 90 day wait for health benefits.. and you have to wait a year for FMLA.. idk what I'll do in the meantime if I have any health issues. We all know how unpredictable chronic illnesses are. A lot of people keep telling me to look into work from home jobs but a lot of those are call center type positions (which I also have experience in) but may prove difficult with my hearing loss (and fluctuating hearing). I just feel so overwhelmed.. my migraines, Ménière's, chronic pain, and anxiety are farrrrr from under control but I don't have many options at this point. What do you guys do? #InvisibleIllness #Disability #Anxiety #MenieresDisease #bilateralmenieresdisease #vestibulardisorder #innereardisorder #Migraine #HearingLoss #HardOfHearing #Vertigo #imbalance #dizzy #Tinnitus #nausea

39 people are talking about this
Community Voices

Chronic Pain is like a nagging child

Chronic pain is like a nagging child... eventually you get used to it and just kind of tune it out. But sometimes it gets so loud all you want to do is scream. #ChronicPain

3 people are talking about this
Community Voices

What do you do for dry eyes

I've been struggling a lot lately with my vision. Dr says it's likely dry eyes. But, I can't seem to focus well on anything. It affects me most when I'm on the computer as that's the time I most need to be able to focus on something very specific. So far none of the drops have helped. She had me try hot compresses and those didn't help either. If anything, it seems to be getting worse. Any suggestions?

3 people are talking about this
Julie Ryan

Ways to Stay Positive About Chronic Pain

Chronic pain and fatigue can really wear you down, whether it’s fibromyalgia, chronic fatigue syndrome, lupus, or something else. Living in chronic pain can start to tear at your soul, it can make you feel worthless and unworthy, but you are not. As I’ve talked with many chronic illness warriors, there are a few thoughts I feel like we all need to be reminded of. 1. You are good enough. It seems like no matter how hard we try, those of us with chronic illness constantly struggle and think that our best is not enough. We are not good enough. But, we are good enough! As Stuart Smalley would say “You are good enough, you are smart enough, and doggone it people like you.” Stop focusing on what you aren’t able to accomplish and think about all the amazing things you are doing despite your illness. You are not just good enough. You are amazing! 2. You can overcome this! It’s easy to let chronic illness bury you, to decide that it’s not worth fighting and to just give up. But, you can overcome this. You may be stuck with chronic illness for life, and you can’t control the pain or the fatigue, but you can control your response. You can choose to be happy despite the pain and illness. 3. You are not to blame for your illness. But, you are responsible for your health. Educate yourself about your diagnoses and look for treatments that may not be offered by your doctor. You are not responsible for your illness, you didn’t cause it, and you certainly don’t deserve it, but you do still have some control. You can choose to either just follow along and take whatever treatments are given, or you can become an informed patient and seek out the best treatments for you. Stop trying to take responsibility for things outside of your control, and take control of the things you can. 4. You need to keep living! Keep feeding your passions and find new ones. Find reasons to keep fighting. So many Spoonies I’ve talked to have found new passions after they became ill. They discovered things that they never thought to even try, but when they found themselves limited by chronic illness they tried something different — they picked up a camera, they tried digital painting, they took up knitting, they started a blog — and now they not only have something new they enjoy, but in many cases they’ve found ways to turn those things into an income stream. You aren’t done yet, you just have to find the new direction. 5. You can control how others treat you. How others treat you is within your control. When people treat you poorly you can walk away. You can set boundaries with those around you, even those closest to you. It’s not easy, especially when you are dealing with people you live with or see every day, but it’s never too late to let others know what you will tolerate, and to stop tolerating those who would overstep your boundaries. 6. You still have something to give. I think when we feel we have nothing left to give, it can become really difficult to hold on, and a lot easier to consider letting it all go. It’s often hard to separate yourself from who you were. We often wrap out identity around what we do, how we make a living, the roles we take, rather than who we really are. Even if you can’t do the things you used to do, you still have much to give. Even if it’s nothing more than a smile, a kind word, or an ear to listen. You have something to give. This post was originally published on Counting My Spoons.

Julie Ryan

How Fibromyalgia Can Affect Sex Life

Sex. It’s not a dirty word, yet it’s a topic we seem to want to avoid instead of deal with. We ignore it and try to pretend that the giant purple elephant is not in the room. When I talk to friends with fibromyalgia, the topic of sex rarely comes up, but when it does, it’s always in a negative light. “He wants it, but I just can’t.” Occasionally, I hear from someone who began their marriage with fibro, and sex was never a big issue because it was never a part of the relationship. However, I’ve found that’s rarely the case. Many of us started off somewhat healthy, with at least some level of sexual drive and enjoyment. Relationships often start with lots of sex in the beginning and then might slowly decrease as the relationship matures. This can be true regardless of health issues. For those of us with fibromyalgia, however, sometimes the decrease is sudden, not gradual. Just as with everything else in our lives, we may have gone from 60 to zero in no time at all. Why does fibromyalgia have such a big impact on our sex lives? Pain: I believe the biggest reason our sex lives are affected by fibromyalgia is simply pain. Often it hurts even to be touched. This affects not just our sex lives, but our overall intimacy. When you can’t even be touched by the person you love, it’s really hard to have any sort of physical intimacy. No hugs, no kisses! It sucks. It’s not like we want this; we want to touch the people we love, we want to hold them and have them hold us. The worst part is that we are in a state where we need that the most, but we can’t have it. Even if we can handle basic touch, our muscles are often so sore that the positions required for sex are difficult and often painful. And we haven’t even gotten to insertion and what sorts of pain may be going on there. Fatigue: Chronic pain is the hallmark of fibromyalgia, but fatigue comes right along with it. Honestly, most of the time we just might not feel like doing anything, and sex is the last thing in our minds. Depression: More often than not, after dealing with pain and fatigue for months on end, depression can follow. Without depression, we might think more about the impact of fibromyalgia on our sex lives, but depression can actually affect sexual desire as well. When we experience depression, sometimes we don’t care about anything, including sex. Honestly, in my opinion, fibromyalgia and sex go together like oil and water. They don’t play well. Even if we can make it through sex without being in agony, we often end up so worn out by it that we can’t do much when we are done. And, this doesn’t even take into account the many other co-related issues that often come with fibromyalgia that impact sex, as well, such as endometriosis and vulvodynia. So what can we do about the impact of fibromyalgia on sex lives? Talk to your partner. It is so difficult to be vulnerable and honest about what is going on with our bodies. However, being honest and open with your partner about how fibromyalgia is affecting your desire for sex, or causing you pain during sex, can help them understand and lets them know you aren’t rejecting them. When we turn down sex with our partner, they might see it as a personal rejection. They could turn it inward, thinking we don’t find them attractive anymore or some other such thing that isn’t true. We need to be honest with our partners. Find other ways to be intimate. Being vulnerable is a good start towards creating new intimacy, but we all still need physical touch. If you can handle being touched, allow them to do so in any way that works for you. Even if all you can do is lie naked beside each other in bed and have a conversation, that’s something. Kiss and hug your partner daily (if you can do so without pain). Intimacy isn’t just about sex. Talk to your doctor. Be open with your doctor about how your pain and fatigue are impacting your sex life. If you have pain during intercourse, seek a pelvic pain specialist. Your pain might not be “just fibromyalgia,” and there may be other treatment, such as physical therapy in some cases. There, I said it. It’s out there. I have fibromyalgia, and sex hurts. It sucks. I hate the impact it has on my marriage, but I love my husband. What ways have you found to combat the impact of fibromyalgia on sex? I’d love to hear how you tackled this tough issue in your relationship. Please share your thoughts in the comments below. A version of this post originally appeared on Counting My Spoons. The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines. Lead photo source: Thinkstock Images

Julie Ryan

What to Stop Doing If You Have Fibromyalgia

This story is based on an article I read called “30 Things to Stop Doing to Yourself.” As I read it, I couldn’t help but think just how true so many of them are and that certain ones are especially appropriate for those of us suffering from fibromyalgia, chronic fatigue syndrome and other debilitating conditions. Here are 16 things I believe those of us with fibromyalgia need to stop doing: 1. Stop putting your own needs on the back burner. If you have any sort of chronic debilitating condition, you need to put your own needs first. Even if you are the healthiest person on the planet, you shouldn’t let your needs go to the back of the line. Since fibromyalgia is most common among women, this is especially true as women seem to be told that their needs should come last after their husband, children, church, jobs, volunteer efforts and anything else that could possibly come before themselves. It’s any wonder we give ourselves any time at all; sadly, too many of us don’t. 2. Stop spending time with the wrong people. If someone is adding stress to your life, that stress is making you sick. Remove the stress by removing that person. You may not be able to completely remove them, but you can choose to avoid them when possible. 3. Stop holding grudges. Holding a grudge is an unnecessary stress. It causes us to create negative thoughts about a person and focus only on those negative thoughts when we should be trying to find ways to focus on more positive things. Let go of the grudge. You’ll still think of the person on occasion, but when you do, just shrug it off and replace it with a thought of someone you care about who makes you smile. 4. Stop trying to be everything to everyone. The ability to say no is highly underrated. Too often those of us with fibromyalgia are unable to say no, feeling guilty when we can’t or won’t say yes. We can’t be everything to everyone — we can’t even be everything to ourselves, and we don’t have to be. 5. Stop lying to yourself. You don’t feel great, and someone asks how you are. You answer with, “I’m OK,” but it’s not the truth. It’s not the truth when you say it to them, and it’s certainly not the truth when you say it to yourself. 6. Stop wasting time explaining yourself to others. If you can’t do something, keep it simple — just say no and move on. Don’t try to explain why you can’t do it because they might not be listening anyway. 7. Stop trying to hold on to the past. While you may be able to find ways to improve your symptoms, you’ll likely never be 100 percent again. There will always be limits. Stop trying to regain the levels of life you had before your illness and realize that was then and this is now. Focus on what you can do instead of what you used to be able to do. 8. Stop berating yourself for old mistakes. Guilt and blame are our constant friends. Stop beating yourself up over things you’ve done in the past (or things you wish you had done but didn’t). It’s in the past, let it go and move on. Again, focus on what you can do in the future. 9. Stop being jealous of others. It’s so easy to be jealous of what others have or what others can do. Little do we realize that they have limitations, too. No one sees the true life of another, their abilities or disabilities and their limits. Don’t judge your life based on the “Jones,” real or imagined. Focus on what you have that is wonderful. 10. Stop complaining and feeling sorry for yourself. It’s OK to throw a pity party once in a while, but I believe it should never last for more than five minutes, and you should never invite friends.  Focus on the positives in life — there are many. 11. Stop overlooking the beauty of small moments. How many times have we heard that we should stop and smell the roses? You don’t really appreciate those small things until you can’t do them anymore. So, take a few moments each day and really think about the small things you were able to enjoy. Write them down so you can look back on them later when you are contemplating that pity party. 12. Stop trying to make things perfect. They already are. OK, maybe they aren’t perfect, and maybe they can even be better than they are now. But the point is that you need to focus on reality instead of perfection. Take small steps to improve things and get closer to the idea of what you want your life to be like, not constantly worrying about how far from perfect you still are. 13. Stop acting like everything is fine if it isn’t. If everything is not OK, it’s OK to tell the truth. When a real friend or someone who really cares about you asks how you are, be honest. Stop answering with “I’m fine” if you aren’t. 14. Stop worrying so much. You feel like life is out of control, and maybe it is. So don’t worry about it. Let life be what it’s going to be. Control the things you can control and let the rest go. Constant worrying will only make you feel worse. 15. Stop focusing on what you don’t want to happen. You don’t want to wake up tomorrow in a flare, so it’s all you think about and you end up keeping yourself from sleeping, which results in waking up in a flare. Sound familiar? Well, stop it. Instead of thinking “I don’t want…” think “I want….” Focus on the good night’s rest you know you will get and how great you will feel tomorrow because you made the right choices about the things that are in your control. 16. Stop being ungrateful. Be grateful every minute of every day. There is something wonderful to be grateful for. Say “thank you” for the small things and mean it. Instead of getting upset that someone did something you intended to do because it made you feel “useless” or like they thought you weren’t doing your part, be thankful they just freed you up to do something else you wanted to do. Follow this journey on Counting My Spoons. The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines. MORE ABOUT FIBROMYALGIA: Fibromyalgia, a chronic illness with three main symptoms — widespread pain, chronic fatigue and cognitive trouble. Fibromyalgia is a complicated illness that’s not well understood. In the past, it was mischaracterized as a mental health disorder. Even today, some doctors wave off fibro symptoms as being “all in your head.” This isn’t the case. Read The Mighty’s comprehensive guide to fibromyalgia here. Click here to join our fibro community and connect with people who get it.

Julie Ryan

To-do List for People With Chronic Illness

My goal is to show how you can live positively despite chronic illness. We may be ill, but that doesn’t mean we can’t be happy. 1. Say no. “Just say no.” It’s more than a slogan. Unfortunately, it’s an ability many of us simply don’t seem to have. One issue I believe many of us with fibromyalgia have is that we’ve said yes to everything our whole life. It’s OK to say no. You don’t have to be everything to everyone. 2. Prioritize your own needs. You are important and need to treat yourself that way. Even if you have to schedule time for yourself in your calendar, do it. Do whatever you have to do to find a way to include time for yourself in every day — even if it’s just taking 15 minutes to meditate. 3. Spend time with the right people. Who are the people who make you happy? The people who give you energy and not take it away? These are the people who you need to spend time with. Find a way to make that happen. 4. Accept yourself as you are. Your life has changed, so it’s time to accept it. Once you’ve taken time to grieve what you’ve lost, it’s time to focus on what you still have and move forward in your new life. 5. Release the past. Holding on to the guilt and fear of the past is one of the worst things we can do. So is getting stuck in the loop of regretting the life you used to have. Get counseling if you need to, but find a way to release the past and move forward. 6. Live in the moment. Each moment has something valuable, so focus on the beauty in it. When you are limited, it’s all the more important to take some time, each day, to think about what is still there and enjoy the little things. 7. Be honest. Be honest with yourself and with others. Don’t say you feel great or OK when you don’t. No one can help you if they don’t know you need help, and they’ll never know if you always tell them you feel good. 8. Focus on what you want. We move in the direction of our eyes. If we look towards what we actually want in life, we are more likely to get it. Focus on the positive and think happy thoughts. If nothing else, it will help to reduce stress. 9. Control the things you can and release the rest. You can’t control everything, so only worry about the things you can control. Whether it’s your diet, taking time to rest or spending time with family, focus on the things you can do to make yourself feel better. If you can’t control it, let it go. 10. Ask for help. Rarely do people help others without being asked first. Don’t let your pride get in the way of getting the help you need. Whether it’s a friend to watch your children for a day, a ride to the doctor because you just can’t drive that day or just a hug from a friend, don’t be afraid to ask. In addition to asking for help, you also need to learn to accept help when it’s offered. For some reason, help for ourselves is the one time we are more than willing and able to say no. But it’s the one time we need to say yes. 11. Be grateful. Above all else, be grateful. Be grateful for the small things and the big things. Be grateful for the life you had and the life you will still have. Be grateful for the time you had with things you may have lost and be grateful for the things that can never be taken away. It seems like many of these can be summed up with that last one. Be grateful for the little things and the big things, even for the pain. Because without it, we wouldn’t appreciate the wonderful days when we feel great. Follow this journey on Counting My Spoons. Lead photo source: Thinkstock Images MORE ABOUT FIBROMYALGIA: Fibromyalgia, a chronic illness with three main symptoms — widespread pain, chronic fatigue and cognitive trouble. Fibromyalgia is a complicated illness that’s not well understood. In the past, it was mischaracterized as a mental health disorder. Even today, some doctors wave off fibro symptoms as being “all in your head.” This isn’t the case. Read The Mighty’s comprehensive guide to fibromyalgia here. Click here to join our fibro community and connect with people who get it.

Julie Ryan

The Impact of Chronic Illness on Marriage

Unless you were already sick before you met your partner, it’s likely that your relationship took a drastic change when you became ill. Perhaps you had a great sex life, you went out often and did lots of things together, you traveled, you enjoyed life. I know that’s how it was for us. Then I got sick, and we discovered chronic illness can have an impact on marriage. Since then we’ve had ups and downs. We’ve had times where I felt good enough that our lives (and sex lives) seemingly returned to normal. We put my illness out of our minds and enjoyed life again. And then, boom, there it was. Something would happen that would remind us that it wasn’t over, that I am actually chronically ill and that this illness is going to be a part of our lives forever. In the last two years I’ve been mostly healthy. Thanks to major diet and lifestyle changes, I was feeling good. The pain was minimal, if at all, and energy levels returned to normal. So did our sex life. At least for a little while. Then there was the abdominal/pelvic pain that ruined the fun. Two surgeries later and I was doing well again, and once again things looked normal for a while. And then, boom, there it was again. The the shoulder issue right on top of that = sex life dead. Deny it as much as we might like, but I believe sex is an important part of a marriage, that it’s a need that should be fulfilled. When needs aren’t being met, we struggle, stress and fight. And that goes for any need within a relationship. There are two sides of this coin and neither of them are very pretty. On one side you have the partner with chronic illness. They have needs, too — sexual, physical, mental, emotional, spiritual. Unfortunately, the chronic pain that comes with issues like fibromyalgia get in the way of fulfilling not just sexual needs but physical needs in general. Even a hug is often painful, so we might be left feeling physically disconnected from those we love. That physical disconnection can lead to a disconnection mentally and emotionally, as well, when our loved ones misinterpret our lack of physical contact. That is the other side of the coin. The other side is the healthy partner who, while seeing their partner is hurting, doesn’t always disconnect their partner’s pain from their own. Instead of stopping to think about how much their partner is missing out on because of the pain they’re in, they instead focus on what their partner is not giving them. This can cause them to withdraw. The withdrawal by the healthy partner often leads to a vicious circle where the unhealthy person withdraws to protect themselves, and this can lead to resentment on both sides. So, what can you do to reduce the impact of chronic illness on marriage? It’s easier said than done. However, I’d suggest two things. 1. Every couple who finds they’re facing chronic illness should seek out a marriage counselor to help them work through and voice the feelings that come up in relation to these issues. It can be hard to talk about sex in front of someone who is basically a stranger, but it may be necessary to get a third person involved in order for both partners to be honest. 2. Find a good support group for each partner. Not only should the partner with chronic illness be involved in a good support group of others who share the illness and can relate to what they are going through, but the healthy partner should be actively involved in a “caregiver” support group with other partners who can identify with the struggles he (or she) is going through as well. It’s important that each spouse try to understand their partner’s point of view. The healthy spouse needs to take time to realize that the ill partner is missing everything they are missing, too. Yes, at times we might be so ill that we don’t think about all we are missing (and sometimes that’s a good thing), but more often, we know what we are missing and it can be depressing. On the other hand, those of us who are ill need to take some time to think about what it must be like for our partner, as well. We also have to remind ourselves that they obviously love us. While we don’t have the choice to walk away from our chronic illness, they do. The fact that they stay says a lot about them, and about how much they really do love us. Follow this journey on Counting My Spoons. Lead photo source: Thinkstock Images MORE ABOUT FIBROMYALGIA: Fibromyalgia, a chronic illness with three main symptoms — widespread pain, chronic fatigue and cognitive trouble. Fibromyalgia is a complicated illness that’s not well understood. In the past, it was mischaracterized as a mental health disorder. Even today, some doctors wave off fibro symptoms as being “all in your head.” This isn’t the case. Read The Mighty’s comprehensive guide to fibromyalgia here. Click here to join our fibro community and connect with people who get it.