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6 Things to Remind Yourself When Chronic Pain Wears You Down

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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.

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The Unique Challenges of Being Young and Chronically Ill

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I think sometimes people forget that a young person can also have a chronic illness or chronic pain. It’s hard having to explain that I am in constant pain at such a young age. I always get, “But you’re so young!” Or, “You don’t look sick,” or even better, “You need to tough it out sometimes. Just think how it is for people who are older than you.” These comments are hurtful. It is hard enough dealing with medical problems at such a young age, and also dealing with other people’s opinions of my sickness. I realize that I am going to spend the majority of my life struggling with my illness. That’s not easy to swallow in itself. As a young person, I wanted to be able to do anything and everything I could before I aged and became less mobile. Unfortunately my body had other ideas and with the crushing diagnosis of fibromyalgia, that is not possible.

Being so young, I also get a hard time from doctors. I was told only a few months ago, by a pain specialist I was seeing, that I was too young to be taking pain medication. I have tried every therapy and drug out there for relief with no luck. It seems like some doctors think you have to be older to deserve pain relief. Why is my pain not as important to treat as someone’s who is older than me? Doctors seem to have the impression that young people should be tougher as well, or that stronger medication is not needed. Going in to the doctor complaining of pain will often get you labeled a drug seeker or you will flat-out be refused because of your age. The stereotype that young people are the only drug abusers is simply not true, and doctors should treat people with chronic illnesses with respect and compassion no matter their age. Respect and trust between a doctor and their patient is vital to receiving good care.

My social life is very small due to my pain. It seems like telling friends or some family that you are tired, in pain, or don’t want to go out and put yourself in pain isn’t a good enough reason to miss an outing. If you’re young, you’re supposed to be able to go strong and party hard… right? Not for young people with chronic illness. Everyone thinks young people bounce back faster from strenuous activities or late outings but the truth is with chronic illness, that doesn’t happen for us. For myself, recovering from sharing a bottle of wine with my girlfriend takes a good two days of rest and non-strenuous activity. That’s only sharing a bottle of wine sitting in front of a nice relaxing bonfire! For more strenuous activities, such as swimming or bowling, it takes even longer to recover. I have to pick and choose what to do based on how much time it’s going to take to recover and whether the pain and exhaustion that follows is worth it or not.

I feel that the young part of the chronic illness community often gets ignored, or treated as not as important because we are young. This is another hurtful thing to see. Young people are not faking it, or lesser because we are younger. I wish everyone in the chronic pain community would respect each other equally. We are all fighting a battle against an illness and should band together. Young, old, and everything in between, everyone with a chronic medical problem deserves to be equally respected, listened to, and trusted. Don’t you agree?

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To Someone I Love Struggling With Chronic Pain

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To someone I love struggling with chronic pain,

You wake up in pain. You go about your day in pain. You go to sleep in pain. You say your life is mostly misery. I wish I could take all of it away. I wish I knew the cure or even a way to lessen your pain. I wish I could fix it. I wish you at least felt loved.

You might think everyone around you is frustrated and mad at you because we don’t care.

Nothing could be further from the truth.

We are not mad at you. We are indeed frustrated, but not at you and not because we don’t care. It’s because we care so very much for you that we’re so frustrated with what you’re experiencing.

It’s not fair what’s happening to you, that life has left you with so many challenges. It’s not fair we can’t fix it. It’s unnerving to be so helpless. I know I can’t fix it. I can’t do a damn thing for your pain.

All I can do is not give up on you.

I can listen when you need to talk.

I can talk when you need a distraction.

I can cry for you and send all my positive energy your way.

I can’t help but feel like you still have life left to live, that you’re not finished doing everything you want to do. I’m not done learning all I can learn from you.

So I will continue doing everything I can for you, even if those things are seemingly small and insignificant. They are the only things I can do and they allow me to feel like I’m doing something at least.

Please know how loved you are. How grateful I am for everything you’ve done for me, everything you continue to do. Know when I lose my patience, it’s not with you, but with the situation. Know even though I can’t feel your physical pain, I can see it and what it’s doing to you and I ache with you. I don’t doubt for even a second that you’re feeling all the things you say you are, things I wouldn’t wish on any human being, especially one so dear to me. Know my heart breaks for you daily and any anger that comes from me is just part of the grieving process. Know if there was anything I could do to stop your pain, I would do it without hesitation. Know that I love you and will never give up.

Follow this journey on Mel’s Empty Journal

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

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When Chronic Pain Took Away My Identity

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On February 7, 2013, I woke up, got dressed, went to class like any normal college student and returned home. I went for a jog and did some studying in the duplex I lived in that I had nicknamed “The Cave.” There was only one window in the common area of our part of the house, and it was mostly covered by a bookcase, making our home quite dark most of the time. I hated that about that house. I had no idea I would be so thankful for it later.

On February 8, 2013, I awoke with a strange one-sided headache, but I didn’t think much of it. I got the occasional headache like any average person, and I figured a couple Tylenol would kick it, and I would go about my day as usual. I went to class again and had a fairly normal day, but the headache didn’t want to budge. I tried some Excedrin and turned down a dinner invite from my grandma so I could try and sleep off the pain. I had no idea that was the beginning of what would be my new normal for years to come.

Once the headache had lasted for a solid week with no change, my mom suggested I go get my eyes checked out. I made an appointment with an ophthalmologist in town, and a few days later, I was told my eyes looked completely fine and not to worry. The ophthalmologist thought it was probably just some sinus pressure and told me to take Advil twice a day for a week or so and that should take care of it.

I’m sure you can guess the Advil didn’t do a thing, and I was referred to neurology. The neurologist ran some tests, and when everything came back clean, he told me he suspected I had new daily persistent headache (NDPH). I’d never heard of it before, and the more I researched it, the more upset I became. How dare he diagnose me with something so poorly understood with no clear treatment plan and very little relief even with treatment. How could he tell me that the past month I had endured with this pain was likely going to be something I just had to live with? Did he not know that I was going to be a Fightin’ Texas Aggie next semester, and I was going to get my degree, have a family and live happily ever after? Who did he think he was to derail my plans with that diagnosis?

The next few years of my life were spent fighting for an explanation that would never come while trying my best to keep all my hopes and dreams on track. I did become an Aggie (Gig ’em!), and I learned my passion is in agriculture. I did my best to hold on tight to my life as I wanted it to be. I learned to juggle medication changes and hospitalizations with being a college student and tried my best to have a social life.

However, the headache was relentless in demanding more and more of my life, and I eventually had to withdraw from the university of my dreams after a two-week hospital stay during the middle of a semester.

Since then, the pain has claimed so much more of what made me, me. I’ve had to give up school. I’ve lost relationships. I’ve lost my energy. Friendships that were once easy are now strained simply because life with chronic pain is so hard to understand. More recently, the mystery headache has claimed some of my eyesight, and I usually have pain in my eyes that feels like there’s a knife behind them.

I have had to mourn the loss of my old life and try to learn how to accept my new one. Sometimes I miss my old self so much it physically hurts. I miss feeling productive. I miss feeling spontaneous. I miss feeling energetic. I miss not being exhausted constantly. I miss feeling like I had a future outside of doctors and medicine.

I’m trying hard to find my identity again. I have lost so much of myself after I worked so hard to become who I was. It’s hard to accept who I am now. It’s as though I used to be a tree with branches and leaves all over, and then chronic pain came by with a chainsaw and left me with just a stick.

I’m slowly growing again, but my tree looks very different than it did before. I have learned to be happy with the low-pain days and not angry that I don’t have pain-free days. I’ve learned what I’m willing to fight through the pain for and what I need to let go in order to function.

I’ve been shown great love and support from people I never knew even thought about me. I’ve learned being someone’s aunt is absolutely one of the greatest sources of joy I’ve found in life so far. I already knew I had a wonderful family, but it has been proven to me over and over since this roller coaster began.

I miss who I was and I hope and pray that someday I’ll be able to feel like I can take on life again, but for now I’ll live in the small triumphs and do my best to see the silver linings.

What’s a part of your condition you live with every day that others might not see? Explain what that experience feels like. Check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Inside the Mind of Someone With an Undiagnosed Pain Condition

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There are many emotions that come with having an undiagnosed pain condition. For me, the most prominent emotion is fear, because I am in so much pain all of the time and have no idea what is causing it. This makes my mind race, constantly worrying and thinking of the worst possible scenarios. I then obsess trying to find patterns and causes and figure out what makes the pain worse. This causes my anxiety to sky rocket, and although I try to be patient and grateful that the doctors are doing all they can to try to figure out what is going on, it is very difficult to wait for a diagnosis.

I also find myself feeling helpless, because I don’t know what the problem is, no one can tell me how to fix it. I don’t know how to make it better for myself; I don’t know whether to push myself or whether that might make things worse and it is better to rest; I don’t know whether I am taking stronger and stronger painkillers, which may be pointless and causing other problems for my body. I feel very frustrated, because without knowing what I am dealing with, I don’t know how best to manage.

As far as the doctors go, I have been lucky so far, as they are doing their best (with a little bit of pushing) to try to get answers for me. I know this is not always the case for some people, so I do feel blessed in that respect. However, the attitudes of some doctors when I try to explain the pain is everywhere and I have no idea what is causing it, seem to be very skeptical. I get the distinct feeling they think I might be exaggerating, which is confusing and extremely annoying, since I wish more than anything the pain didn’t exist or wasn’t this bad!

Overall I try to manage the best way I can, and be patient in waiting to find out what is going on. I try to remain positive, as I know that I can get through this with the help of my support system, and I just need to keep pushing on.

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The 'Greatest Gift' That Gives Me Hope as I Battle Chronic Pain

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Last night my husband Eric helped me outside, bundled me in the wheelchair and wheeled me about four houses down the block. Other than little trips to sit in our front bench or back deck, this was my first foray into the outside world in seven days. So you can imagine it was glorious.

The world of evening spring grabbed us in a bear hug.  The embrace of reunited loved ones.

It’s rained a lot the past few days: the street smelled like spring’s perfume. It turned the trees hanging above us a brilliant beautiful emerald, a green that evokes long ago memories of my Catholic school teachers telling my child self that green is the colour of new life on God’s earth.  

It all comes back to me so clearly now, on these days I spend much time in bed, willing pain away. I stare darkness in the face, want to scream it down. I want my life back.

The darkness recedes, memories push through. I am back in my second grade Catholic school classroom. Sunlight floats in through the hard metallic window. Endless sunlight. No pain. Only hope and promise.

My stubby 7-year-old fingers push a hard wrinkled brownish bean into a dirt-filled Styrofoam cup. I wait on the promise of a small green bean plant. If it grows, I’ll have a gift to give on Mother’s Day. I learn hope as I wait for the moment when the first small green shoot leaps out of mere dirt toward the sun, like a prima ballerina born for the stage.

Ahhh memories. These days as I’ve slid, as if down a terrible playground’s slide, through pain and disability, the memories are more precious than I knew memories could be. How is it that in a time of physical loss I learn just how precious life is? That what a gift there is in the lives we live? That ordinary life is nothing short of spectacularly miraculous?

It makes me kick my heels into the slide. Makes me pull myself with all I am back up. Against the darkness. Toward the light.

Birds chirp their springtime concerto. The sun warms my face, even as evening wanes. I love that in this part of Canada at this time of year it’s still bright so late in the day.

Our walk/ride ends; the green trees dip down, wave good bye. Grasp my spirit in a “see you soon” hug. Eric returns me and the wheelchair back home.

We pass the little wheelchair accessible garden I began planting a few weeks ago. I was feeling pretty good just a few weeks ago. It is a beacon to where I hope to return.

I point out to Eric: a small, tiniest of tiny little green plant has poked up through the soil! This is sheer delight — whether in a second grade classroom or to a life-aged, pain-battling mama.

“No,” Eric says. “Look again.”  He lifts the pot close up so I can see. And I do see… so clearly.

All over the pot are tiny little green points. They are minuscule, some barely bigger than a pinhead. Too small to be called seedlings. Or shoots. Barely plants, experiencing their first ever taste of sunshine and spring air. Their first taste of life.

And my heart discovers. Sometimes life is hard. Hope seems faint. Pain and darkness seem to win. But those little shoots, tiny as they are, are victory embodied over darkness. They fight pain and herald life.

New life. Green life. The greatest gift of all.

And my heart says thank you.

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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