girl lying on ground in pain

5 Things I Don’t Admit on My Bad Pain Days

Have you ever had a day when you just stared off into space? Not staring and thinking deep thoughts about your future. Just empty, with random thoughts floating around occasionally. But nothing coherent. And definitely nothing cheerful. This is the place I am in right now.

My brain has just shut down. The disease has become too much to handle any more and my brain went bye-bye. So, I thought I’d let you into the taboo side of chronic illness and pain. The stuff we really don’t want to admit. The thoughts we may have when our brain and body are at their lowest.

1. I am tired. That’s why my brain shut down. Fighting pain is hard. And those of us in daily pain don’t ever get to rest. The constant struggle of trying to stay physically in control of pain is draining. Add to that the daily demands of running a home and raising kids and you have the perfect storm for extreme fatigue. And extreme frustration. And we crack. Because being nice and patient and understanding is also hard work. And when our brains get tired of fighting our disease, we may not care about the niceties anymore. My brain already fled so only fight is left. And it doesn’t matter who gets in the way (sorry)!

2. I am sad. It’s emotionally drained. It’s extremely hard to deal with an illness every day and then still be able to deal with what comes in every normal relationship I know of. Disagreements. My husband and I are no different. We argue. It’s not always roses and chocolate. And to be honest, I don’t always have the fortitude to deal with any discord, whether it’s about a burnt dinner or the several hundred bucks he just lost at the casino. I’ll end up in a puddle of tears. (And if it’s about the kids, fuhgetaboutit!) Pain makes everything personal and much more intense. So the small stuff becomes huge and nastiness becomes much more easy.

3. I am depressed. It’s hard to stay positive and accepting of a disease that causes so much pain, weakness, degeneration, loss, forgetfulness, uncertainty… I could go on, but you get the point. Obviously, I have accepted my illness. I’ve had to. I would never have gotten out of bed otherwise. But these diseases are progressive and constantly change over time. So we have to constantly readjust our mindset. And let’s be honest, it has to become part of who we are. We can’t exist by putting on rose-colored glasses and ignoring it. So the feelings have to be accepted and allowed to come out, too. But that can cause intense fear that can leave us overwhelmed to the point of motionlessness.

via For Grace

5 Things I Don’t Admit on My Bad Pain Days

4. I am confused. And confusion is very frustrating. And time-consuming. You see, my body remembers everything it used to be able to do. From dancing to walking miles to rearranging furniture all by myself carrying pieces up and down stairs. So sometimes, I still think I am capable and try to do those things expecting that I will be able to. And when I can’t, I either end up hurting myself or I have to find someone else to help me.

5. I want to give up. I know the facts about my disease. I know what my back injuries mean. I know what the future probabilities are for disease progression and pain management. And I worry about where I will end up when I can’t care for myself and who will care for me. I worry about that when I’m tired, hurting, or alone. And I’m alone a lot. And I’m scared. I think about giving up a lot, too. I don’t talk about it, but I think about it. And honestly, in some ways, giving up feels equivalent to being pain-free again and on days like this, that’s all I really want.

When my brain gets like this, what I really need is some sort of regeneration. I’ll watch a movie, find funny shows on TV, watch kittens on YouTube, or bundle up and sleep! These “lost brain” days don’t last forever. And they’re not as common as they may seem, though they do tend to come in clusters. But after 20 years of this, the silver lining seems to be the fact that by letting these days happen, you allow for a mental reset. The negativity gets acknowledged, then let go – and that’s exactly what needs to happen.

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Why I No Longer 'Fight Against' My Pain

I’ve lived with pain for a long time. Since my teens, in fact, and I’m now 50. So I guess that is a fairly long time.

I used to be such a fighter. I was determined to live a normal life despite my pain. I fought against it all the time.

When I was 30, I was in hospital, and I met a woman who had arthritis in her shoulder. She told me that she would never let it beat her.

She was never going to let it beat her. She was going to fight against that terrible pain.

Her words changed something in me that day.

I had been fighting all my life – trying not to let the pain beat me. Constantly fighting against severe chronic back pain. Fighting against it day in and day out. The thing was, I never won the fight. Never.

When I was a teenager, I wouldn’t even admit that my back was hurting. I just wanted to be “normal,” whatever that is. I went through my teens and my 20’s struggling against pain most of the time, but I wasn’t going to “let it beat me.”

But it did beat me.

It made me faint. It made me cry in toilets. It made me lie in bed for weeks unable to move.

It beat me alright. But I kept trying again. I kept forcing myself to get back up and fight again. Then that woman said those words: “I’ll never let it beat me.”

I realized then that I was stuck in a boxing ring, fighting with every ounce of energy against my pain. It was my pain against me. But my pain was mine. My own. Therefore, I was fighting with myself. And my pain was so much stronger than me. I had never been able to win a fight against it and I never would be able to win a fight against it.

I think that was the point when I realized that I would have to learn to live alongside my pain rather than be in a constant battle against it. Fighting is negative and by nature, I am a positive person, so why should I have so much negativity in my life? And besides that, fighting uses up so much energy.

via For Grace

I had a lot to learn though.

I needed to learn that living with chronic pain would have to be part of my life.

I needed to learn to listen to my body so much more.

I needed to learn to trust what my body was telling me.

I needed to learn to do what my body was suggesting.

Doing this hasn’t taken my pain away, but it has made life easier. Definitely less exhausting. But it is an ongoing process. I make mistakes. I forget sometimes. I do too much and just like before, the pain wins. It gets worse and it steals my energy. My pain is always happy to remind me that we are supposed to work as a team. And once I come back to my senses, I’m happy to comply.

I’m glad I don’t venture into that boxing ring these days. I’m really not a “fighter” when it comes to living with my pain… but that doesn’t mean I’m weak. It just means I have found a way of living with my pain which suits me.

Everyone has to find their own way to live with a chronic pain. Some people might be fighters, but for me, life is so much easier when there is no fighting involved. Especially when the opposition would be myself.

Fighting uses up so much energy, and trust me – when you live with constant pain, you need every ounce of energy.

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two girls with their arms around each other, back view

How I Explained My Chronic Pain to My High School Peers

The other day, I was sitting in my psychology class, listening to a lecture on sensation. My teacher was discussing touch and pain, as well as coping mechanisms for people suffering from chronic pain disorders. She then posed a question to the class: can you remember how you felt in the moment of your life where you felt the most intense physical pain?

I thought to myself, for me, that wouldn’t be one moment. For me, it can last weeks at a time. And then I realized that, most likely, the other students in my class really don’t know what invisible illness looks like or feels like. So I raised my hand, and I shared with them the things that I think are important for people to understand about chronic illness. Here’s what I told them:

1. Invisible illnesses are real. Just because you can’t see it doesn’t mean you can question it.

I’m very open about my medical issues, but I rarely tell people exactly what I feel on a day-to-day basis. That being said, if people show the courage it takes to express what they are going through, don’t make them regret it. Invisible illnesses carry a heavy emotional component since many of us automatically default to the “no one understands what I’m going through” mindset. Be sympathetic and willing to learn and listen. I will never expect another person to understand what I feel, but I do expect respect.

2. There are millions of people who experience chronic illness, but no one feels it the same.

It is amazing to be in a classroom where we are having an open discussion about chronic pain. But this list of treatments for pain management (acupuncture, massage, electrical stimulation, etc.) does not solve our community’s problems. Acupuncture might bring one person to a state with almost no pain, while for another person, it could intensely aggravate their symptoms. Just like there will never be a person exactly like you, there are no two people who experience chronic pain, or any other illness, in exactly the same way. “One size fits all” does not exist here.

via For Grace

3. Am I too young for this? Yes and no.

From the bottom of my heart, I often feel that I am way too young to know that I will face this long list of symptoms for most of my adult life. I often feel like I was cheated out of my adolescence and my high school experience. But regardless of how I feel, the reality is that there are millions of teens just like me who live with chronic pain, in addition to dozens of other chronic illnesses. You might not know them, but believe me, they’re out there. Take a second to imagine how different your life would be if you were within these millions. Maybe that’ll help you feel for a second how so many others do everyday.

4. Just because I am so open about my illnesses doesn’t mean there isn’t more to me.

I feel a responsibility to show people that, while I am a teenager who has a chronic illness, you wouldn’t know I was sick unless I told you. Yes, I am extremely open about my experiences with chronic illness. But do not mistake this for insecurity or selfishness. There is so much more to me than my illnesses, and part of that is my wish to open this conversation. I never want to be labeled by my medical history, but it is a part of my identity. A part I do not want to ignore, but a part I also do not want to dwell on. I have a whole life ahead of me that I am planning with chronic illness being only background noise.

5. I would be thrilled to talk to you about chronic illness any time.

In my lifetime, I would be honored to see more people, especially young people, educated about chronic and invisible illness. Please ask me questions. Allow me to help you understand. I want to eliminate the stigma that surrounds chronic illness and talking about chronic illness. If you want to learn, I am here with open arms.

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5 Things I Wish I Knew When I Started Having Chronic Pain

There are a few things I wish I had known sooner in life. The majority of them relate to my mystery illness. I am in month 13 of my journey for a diagnosis, and I learn new things about my illness and how my body should be functioning every day. Many aspects of whatever this is that is plaguing me are things I have actually been dealing with for a lot of my life but never knew they were an issue – I just thought everyone had the same problems. It was only when these things really began interfering with my regular life that I began to see how extreme the issue really was, and now I do not go a day without pain.

I cannot help but feel that if I had learned somewhere about the “normal feelings” of the body, I may have started this process long ago, and I could be in some kind of management regimen rather than the mysterious diagnosis limbo I am in today. I hope someone else relates to this list and shares it so maybe someone else who is struggling with the same things that I did will be able to seek medical help sooner.

1. I wish I knew my knees weren’t supposed to hurt. It started in middle school really – my knees ached under pressure. I would run up the stairs like all of my friends and feel pain with every step. I just thought everyone felt that when they went up stairs; I never thought to mention it to anyone. What I didn’t realize is pain like that may be normal if you’re in your later decades of life – not when you’re only just beginning your second decade.

2. I wish I knew my metabolism wasn’t just “really high.” I have family members who have “really high metabolisms” so they were always hungry and always small in stature. I went through my life with people constantly commenting on how thin I was, or how much I would eat and how frequently. I even had times when I would feel faint or nauseous but didn’t realize there was actually a medical disorder behind it.

via For Grace

3. I wish I knew I had to push doctors for more when they would dismiss my leg pains as “growing pains.” Throughout my life, I would get severe musculoskeletal pain. When I was young it was once a week and always quite obvious, because I was hardly even 10 years old and felt pain, so I would cry and look to my mom for an answer. When we went to the doctors, they said, “It’s just growing pains… they’ll go away.” So, as I got older, I also got better at hiding my pain and continuing on with my life despite it. Then, in my later years of high school, it began to be more frequent, twice per week or so, but I always just went with what the doctors said: “It’ll go away eventually.” Then I turned 17 and realized I had been the same size since I was 14; I wasn’t growing anymore, but I figured it would all catch up eventually. Then I turned 18 and the pain kept getting worse, more painful and more frequent. And so I went to the doctor again after my pain came every day for several months and was so debilitating I could hardly move. As soon as I mentioned it, my doctor looked at me in surprise. I was almost 19 and had been the same height and weight for five years. Now I’m 19 and am in pain every day, but no one knows why.

My older brothers and I before the start of my senior year of high school (nearly 3 years ago).
Me and my older brothers before my senior year of high school.

4. I wish I knew it was OK to tell the people around me about my pain. If I had talked about my pain, I may have mentioned it to someone who had a similar experience, or someone who would have told me it wasn’t normal. If I had talked about my pain in the later years with my family, then maybe this wouldn’t have taken them by so much surprise. If I had talked about my pain, I might have a few more answers.

5. Finally, I wish I knew earlier how much other people can come to support you. I have always been independent, but since this pain has become so severe I have had to become more dependent. But it was hard at first. I would only talk about the pain or ask for things with my mom. But that was an extreme burden for both of us. I would avoid telling people about the pain so they wouldn’t “judge me.” I was terrified it would change the way people thought of me if I had to begin asking them for help. It is still difficult at times, but I have seen how willing my family and friends are to help me. I have seen how hopeful they are in my journey. I now know that I am not in this alone, and I never really was – I just thought I had to be. One of the most important things this mystery illness has taught me is how much is truly possible. It has shown me how much love is out there and how much I can still do despite my illness. I wish I had been able to begin my search for answers sooner and I wish I had adjusted to life in pain more quickly. The biggest lesson by far? Talking is vital. No one will help you if you do not ask for help. No one will look for a solution if they don’t even know there’s a problem.

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young woman sitting on her bed and looking away, her reflection is seen in a mirror

Practical Tips for Remaining Self-Sufficient During Chronic Pain Flare-Ups

Being diagnosed with chronic pain or fatigue can be devastating and even life-changing. Whether you are single, married or have kids in your home, you can still live a life of self-sufficiency by discovering shortcuts that can transform your daily routine.

Meal Preparation

Cooking at home is supposed to be much healthier than ordering out or even purchasing frozen meals which usually contain extremely high amounts of sodium and can have a negative impact on your health. So when a pain flare-up strikes, you can be prepared ahead of time. Instead of buying whole fruits or vegetables, opt for pre-cut fruits and vegetables instead. A more affordable option to consider is buying frozen fruit pieces, veggies, onions and peppers. If you like using fresh garlic when preparing meals the alternative would be a jar of minced garlic. Invest in a slow cooker for make-ahead meals. It only takes minutes to add the food and spices to a slow cooker and program the time and temperature settings.

Have a Seat

Starting or even completing house chores can be cumbersome when chronic fatigue or pain strikes. Standing and moving around for too long can easily take its toil on you. By using a chair or a stool as an aide, it will help you to not over-exert yourself. You can position a chair in the middle of a room to vacuum your carpet or a hardwood floor. Place a stool in front of your kitchen counter or stove while you prepare your meal or if you have to keep an eye on the stove frequently. Sit down while you do your hair or makeup. Even if you do not have an already designated area, find a place you can turn into a multi-use area. Use a chair as you go around your home to dust and wipe. If you have a front-loading washer or dryer, pull up a chair to get the clothes in and out of the machines. Invest in a table top ironing board to sit while you iron instead of having to stand when you need to conserve your energy.

via For Grace

Online Shopping, Curbside Pick-Up and Delivery

When you live with chronic pain and fatigue it can be very difficult to drive to a store, park, walk through the parking lot, get a cart and have to walk from one end of a store to the other. How often have you managed to complete a successful out-of-the-home errand since your health significantly declined without experiencing repercussions for doing so? A lot of companies now offer online-only specials and discounts when you order items through their website. You can opt to pick up your order at a local store or you may even receive free delivery to your home if your order is over a certain amount. If there are things you routinely purchase, this might be a good option for you and might also give you additional incentives or rewards for purchasing online.

Many pharmacies and even some grocery stores now offer curbside pick-up where you can place an order, pay for your items online and drive up to a designated pick-up area outside of the store where someone will bring your items to your car. Most first-time users may even receive a complimentary percentage off the total bill or a coupon for the first time you try their service. Delivery services are also becoming the latest fad. Companies such as Postmates offer you the ability to have someone go to a store, shop for you and deliver the purchased goods right to your front door. This service isn’t offered in every delivery area so you would have to check to see if this is available to you.

Have a Plan of Action for Relaxation

A lot of people who find themselves in the midst of a pain flare-up might not be able to get any relief from their prescriptions alone. So having your own plan of action for relaxation can help you get through some of your flare-ups. Try soaking in a warm bath filled with scented epsom salt to assist with relaxing tight muscles and help bring down your pain level. Invest in a heating pad and electronic massagers for the areas of your body where you experience the most pain and discomfort. Because many people with chronic pain also have additional health issues, medical treatment and prescription drugs can become rather expensive. If you do not want to spend a lot to purchase these things at a store you can often find heating pads and massagers at your local thrift store for next to nothing.

Discover Your Own Way

Just because you live with chronic pain or fatigue does not mean you can no longer continue to lead a “normal” life. You may just need to make some adjustments to your routine so that you can still be as self-sufficient as possible. You owe it to yourself to find ways to live your life as the warrior you are. Discover your own way to stay positive and live life on your terms.

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selfie of woman in workout shirt that says fighter

How I Power Through the 'Rain Pain'

I don’t know about you guys, but if there’s anything I hate more than the day-to-day pains of chronic illness, it’s what I like to call “the rain pains.” Many people don’t realize the effect that the weather can have on a pain condition, but boy when it strikes, it strikes strong and hard like lightnin’. (See what I did there?)

Let’s start with the science of it all. There are several factors that go into the connection of weather pressure and pain. Now I use the words weather pressure for a reason. While scientists have yet to pinpoint a direct connection between pain and the weather, most theories aim not at the precipitation itself, but at the drop in barometric pressure. This means that our elevated symptoms do not stem from the rain or snow, etc., but from the drop in the weight of pressure in the atmosphere surrounding us. I’m no scientist, in fact it’s a miracle I even passed science in school, so if you’re looking for more information, I found this article to be pretty enlightening.

Now that we’ve gotten our homework out of the way, I thought I would share some
ways that I plan on getting through today’s rain pain.”

1. Dress comfortably —
 I’m very blessed that I work in a casual office. Now typically I do my best to be as business casual as possible, but today was a leggings and Victoria’s Secret sweatshirt kind of day. Layers, layers, layers. Who knows what kind of hot flashes or chills will strike throughout the day, so stack those layers on, take a few off, whatever you have to do to keep yourself comfortable. (But take it easy with the “taking layers off” part, you don’t have the time nor patience on a rain pain day to deal with HR.)

2. Tea, tea, tea 
– I seem to benefit greatly from green tea, ginger tea, and chai tea – though chai tea serves as more of a comfort tea than medicinal. I just love those spices. Make sure that the teas you are drinking are organic, you don’t want to be steeping any pesticides or carcinogens into your cups, especially since we’re using them as therapy! Go with a brand like Traditional Medicinals or any other teas proven to be organic.

via For Grace

3. Don’t strain yourself ­– If you’re feeling like you want to get things done despite the pain today, that’s fine, however, pace yourself. Set distinct goals and let yourself accomplish what you can with the energy you have. If it can wait, let it.

4. Try to move – I know, I know, the stiffness and pain seems unbearable, but moving your tired and aching muscles can be beneficial to you in the long run. Even if all you do today is move from your bed to your couch and back again, you’ve moved. My mission at work today is to get up from this desk as many times as possible despite my pain and fatigue, even if it’s just to grab papers from the printer or fetch the mail. (And, on the days when my pain and stiffness is at its worst, I drag my butt to Zumba class anyway. Sounds crazy, right? But actually, once I get through the first few songs, moving and dancing actually releases the tension and stiffness in my body, and I sleep better that night than I would have if I stayed home)

5. Rest – “But Katelyn I don’t have time to rest; I have work, the kids have extracurriculars, I have appointments, we need groceries” —  Hold it, warrior. There is always time to rest. This may not mean a full 90-minute nap, as glorious as that may sound right now, the focus is to rest your mind when you cannot rest your body. Put on your favorite music while you’re driving around, listen to an audiobook (yes they still have those), take five minutes in the car to do some quick breathing exercises to calm your mind and body. Find something. Anything. Make that your rest.

My final piece of advice to you all on “rain pain” days is this – remember how strong you are. You are a warrior! You are mighty! Your success rate of surviving bad weather days in the past is 100 percent. That’s impressive! Keep your head up, snuggle in, and weather this storm like the mighty warrior that you are. Now, I was going to post some cheesy quote about how rainbows come after storms, but man that’s nauseating. So instead I’ll share a personal story with you all. The last time we had a severe rainstorm, I had just pulled in my driveway from Zumba. I was sore, tired, and man was I cranky. But, my favorite song came on Pandora, I happened to be wearing a shirt that said “fighter,” and I decided, “Ah heck, life’s too short” and I spent 30 minutes in my front yard dancing in the rain. I can’t even begin to tell you all how liberating that experience was for me – plus, I’m sure my neighbors got a good laugh out
of it, too, so it’s a win-win.

woman wearing tank top that says fighter

I believe in you, I know you’re going to get through this, and if you need someone to help you through this thing called life, I’m here 24/7 (because it’s raining and Lord knows I ain’t gettin’ any sleep tonight).

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