4 posts tagged fibromyalgia
When I was a freshman in high school, I was diagnosed with a disability that’s “traditionally” tied to middle-aged or elderly women: fibromyalgia.
He thought for a few minutes. I imagine it was hard to put aside all his history with me – I’d been ill for much of my time as a child, suffering from other chronic health problems that were linked to my prematurity (I was born three months early and had multiple surgeries thanks to my preemie status). Finally, he sighed and said, “Well, we usually only diagnose middle-aged women with this, but I’d say she has fibromyalgia.”
Finally, all of my symptoms fit into one clear-cut, clean box: the constant-pain, the daily level-ten migraines, the vomiting, the anxiety, the depression, the swelling, the insane amount of absences from school, the sore throats, the arthritic joints…all of it made sense. And it was a relief, but also a life sentence: I had a medical condition that fell under category of disability, and I was only a freshly-minted teenager.
The symptoms didn’t go away – they still haven’t completely, even though I take a cocktail of drugs every night and go see specialists relatively frequently, but to say I’ve learned a lot from my disability is the understatement of my entire life. It’s made me stronger, even in my weakest, most vulnerable moments. And I’m thankful for that, even if I hate my disability’s rotten guts.
After missing more than 200 days of high school, college was a dream. Not to say I haven’t missed a ton of my college classes – I have – but really, it’s been a dream. Especially after having my high school counselor and principals tell me I’d never graduate high school, let alone get accepted into or be able to attend college. So this is for all my HATERS. (Sorry – I just had to. One of the things that gets me through my rough days is laughter, even if it means laughing at my own jokes or…gasp…laughing at myself.)
This is going to sound crazy, but I’m thankful for my disability. It’s made me learn some huge life lessons, in my opinion, apply to anyone going through a rough patch in life – like we all do, at one point or another. Here are a few of the big things I’ve learned.
It’s OK to ask for help.
Learning this was a big challenge for me. Especially when my parents were sick. I felt guilty asking them for help, but I needed it, and it was OK to need it. We all need help sometimes. Sometimes asking for help is the bravest thing you can do! So just do it! And know that you are strong because you know when and how you need help – and are brave enough to ask for it. It truly never hurts to ask. Knowing yourself and your needs takes strength, so asking for help is strong.
Take time to relax.
We all need relaxation. Taking time to relax is good for you. Sometimes, it is better to be lazy! So take a step back, do something that makes you happy. Read a good book, check your Facebook, call your mom, watch TV, or – by all means – take a nap! I tend to get behind with my schoolwork, studies, or commitments because I need more “me-time” than other people, but I’ve learned to be OK with that. Like I just said, asking for help is a sign of strength and self-love, and letting people know that you may need to extend some deadlines or might need to cancel a meeting because you’re either going through a rough patch or have a disability – well, that’s also a brave and strong thing to do. And, though I know this is most likely a cheesy thing to say, you’re worth it! It’s true!
Saying “no” is a good thing.
I touched on this before, but having different limits and abilities in life has meant learning to say “no.” This has been a hard one for me. I’m a people-pleaser by nature. I want to be able to do it all and I don’t want to let anyone down, but I’ve learned to say “no.” It’s a huge coping mechanism for me and keeps me healthy. I let people know that upfront. Being honest with yourself and others is a huge sign of maturity. It’s also a way to honor and know yourself – something we all need to learn. Saying “no” is a tool I – unfortunately – have to use on a daily basis, but it’s also the simplest way I know to stay healthy and in control of my disability. Sometimes I give people an explanation, but it’s also important to note that you don’t always need to. That’s something else I’ve had to learn. Sometimes, an apology just isn’t warranted! It’s OK to put yourself first – easier said than done, I know, but it’s important to TRY. Especially in those rough patches!
Know your limits, but also know when to push yourself.
This probably sounds totally contradictory to what I just said, but honestly it’s not. For the longest time, I let my disability disable me. I let it run the show for fear of a flare up (AKA my fibromyalgia symptoms rearing their ugly head…AKA pain, insomnia, vomiting and lots of tears). It kept me from seeing friends or trying new things way too much. I said “no” all the time for a long time. Then I got sick of it. I wanted my life back, even if it meant dealing with more pain than usual. So I went to Paris. Literally – I went to Paris. (You can read a post about it here.) And I was scared! But it was also the best thing I ever did in my entire life. I was in a ton of pain from all the walking – I went with a class last Spring, so it was basically like an extremely amped up field trip – and the seven-hour time difference. I had tons of flare ups while I was there. Sometimes I cried. But I also had the best time of my entire life. I made some of my most favorite friends and my breath was constantly taken away from all the joy I experienced in Paris. I loved every second. Even the teary seconds. Even the painful seconds. Every second. I could go on and on. Want to know the biggest thing it taught me? It taught me that I was strong and brave and in-control of my life! My disability didn’t run the show, even when it was making my life more difficult. I was still capable of happiness even when I was in pain. I was still capable of doing amazing, wonderful, adventurous things. It forced me out of my comfort zone, and I am forever grateful to myself for it! (And you know what? Turns out you can say “no” even when you’re in Paris. I did. But I also learned to say “yes” again!) It really will all be all right – eventually.
Ever heard the saying “this too shall pass?” It’s totally true. Sometimes I get so overwhelmed by the fact that I will spend the rest of my life with this disability. Sometimes I cry – well, I cry a lot – and tell my mom and boyfriend that I feel like I’m dying. Sometimes I get super-dramatic about it and feel like my life is over. Dramatic, right? Well, it happens. And that’s OK! Because you know what? It will be all right! It all will be all right. The flare ups and freak outs will pass. Though rough patches will, too. Eventually. Sometimes, you just have to give it some time! Patience is a really hard virtue, but it’s necessary. I really do promise it will all be all right. Pinky swear.
You are a strong person, even when you feel weak.
Man, oh man! I feel like a total weakling sometimes. And physically, I probably am in a lot of respects. But I’m also strong – even when I’m at my most vulnerable. And so are you! I’ll pinky swear about that, too. It takes a strong person to learn how to be happy in this life! It takes a strong person to say “no.” It also takes a strong person to say “yes.” We’ve all been through the rough patches of life. They make us stronger. I know I’m probably sounding cheesy by now, but I think that it’s so important – and brave – to recognize that. Give yourself a pat on the back. Do it. You deserve it.
You are loved, so love yourself.
Think of all the people who love you. And yes, your mom and dad count, too. So do your dogs and cats. So do your fish. So does your pet…monkey…? It’s truly an epidemic in this country – the whole low self-esteem, low self-worth thing. I mean that. It makes me sick and sad and angry all at the same time. Self-love is low around these parts. So let’s all take a moment – or a bunch of moments – to give ourselves a huge hug for all that we do for others and ourselves on a daily basis. You are so loved – each and every one of you! So love yourself. Easier said than done in our society, I know. But learning to love myself and celebrate my achievements – even the tiniest ones – is the best thing I’ve ever done for myself. It’s still a huge learning process and it’s still a struggle, but all kinds of love take devotion, so let’s all become devoted to self-love, too. (If you need some more encouragement, check out my friend Cortnie’s blog. It rocks my socks.)
I asked my readers to share some of what they’ve learned from their disabilities or from their loved ones having disabilities – which I prefer to call different abilities (I learned that from my Women’s, Gender and Sexuality Studies classes), but for the sake of non-WGSS students out there, I’ll use the traditional D-Word for clarity’s sake. Because trust me – you learn a lot from being a disabled person, or loving a disabled person – especially if you are a young person who is affected by a disability, I’d say. That also goes for young people who love people with disabilities, too. I learned so much about myself taking care of my parents – who are both cancer survivors. Probably more than I learned from my own disability, so for everyone out there who is a caretaker, I think you are the strongest people around. That also goes out to my parents and my boyfriend, who are my caretakers on my rough days. Unconditional love gives me the most strength I could ever have – which also takes form in loving yourself unconditionally – don’t forget that! Learn to do that! PRONTO! Anyway, when I asked my readers and friends to share their stories regarding disability, I received some beautiful, wonderful and amazing responses. They made my heart happy.
Gabrielle Walter, who is also a blogger and UC student, gave a response that took my breath away. I didn’t even know she had an invisible disability like me, so it was a real eye-opener. Her comment was especially beautiful and relatable.
“Many times disabilities aren’t easily seen or noticed by people you work with everyday,” she said. “I was officially diagnosed with narcolepsy, a rare sleeping disorder, about a year and a half ago. I’m unable to regulate my sleeping patterns aka I fall asleep at the most inopportune times. At first the hardest part was coping with the fact I couldn’t live up to society’s expectations. I’d fall asleep before deadlines, classes and while working. In about 6 months I went from very involved, successful student to a part-time struggling-to-stay-in-school student. Once I got past the importance of grades, I had to accept I couldn’t do everything I wanted to be able to do for myself. That was by far the hardest.”
Gabrielle and I both used to be editors at our student newspaper, which takes a lot out of you, so hats off to her – and hats off to me, too. Because I’m a firm believer in exercising self-love.
“While any disability is difficult, you do grow as a person,” Gabrielle said. “Randomly sleeping about 12-14 hours a day makes you make the most of the time you are awake. I focus on doing what I love, and only what I love. I have re-evaluated what I truly consider important in life and have ultimately slowed down to enjoy the simpler things.”
This is evident in Gabrielle’s blog, Profoundly Simple. I check it every day for new posts and information. Gabrielle started the blog in an effort to live more simply since, like she said, making the most of the time you’re awake (or, in my case, not in pain) and enjoying every second of that time becomes so important. Learning to focus my time and effort has been a invaluable skill for me.
Bloggers Ali Stigler and Marisa Whitaker (you can find their blogs here and here) wrote about the life lessons that come with depression and anxiety.
“[Sometimes] you just don’t want to go out and would rather lay in bed trying to figure out who you really are,” said Marisa on her anxiety, depression and ADD.
Marisa brings up a great point. Life with a disability – and rough patches in life in general – really does make you figure out who you are very quickly. Any rough patch tests your emotional and mental strength, but I’ve found that you really find out who you are, what you want and what you stand for when you deal with those rough patches every day, especially at a young age. I really related to Ali’s story; her life has also been touched by disability.
“My mom, like many others, has suffered from depression for about seven years now,” she said. “It isn’t visible all of the time, but sometime you can just tell when she’s upset. She’s on medication to regulate it, but when you can tell she’s having a rough day and not feeling it, it’s hard to figure out what to say to make it better. Because there really isn’t anything I can do to make her feel better. I just try to get her out of the house and take her to lunch or go thrifting (one of our favorite activities). I know those kinds of things make her happy, even if it’s only for a certain amount of time.”
Having a loved one suffer from a chronic illness, disability, or disease while you’re young – or at any age, I’m sure — causes you to grow up fast, as does having a parent or loved one who is ill. Being a caretaker at age 18 and on (I’m an only child) while coping with my own chronic illness made me grow up – or attempt to grow up, whatever “growing up means” – really fast. It made me put my priorities in check. While I didn’t get to party or be a typical reckless teenage girl, I am thankful for the life lessons helping my parents battle cancer taught me. In fact, I’m thankful for all my rough patches thus far in life. They’ve made me who I am and have strengthened my heart.
What are some things you’ve learned from your rough patches in life? What are some skills you’ve learned along the way? What some big life lessons for you? Let me know!
Note: This is a post about body positivity and body image inspired by Cortnie at That Cortnie Girl. So thank you, Cortnie. You are an inspiration to women of all shapes and sizes. I hope this post makes you proud! Because it sure made me proud!
I want to share something pretty intimate yet incredibly rewarding and meaningful with you. Something happened for the first time…well, maybe ever, today.
Before each and every shower I have ever taken, I peak into the mirror before getting in. I usually can find flaws at first glance. I have four surgical scars my eyes tend to gravitate toward. The most pronounced is the scar that extends from one side to the other, all the way across my stomach, dividing my torso into two. I received it when I was only a few days old: a results of bad intestines due to my three months’ prematurity. I have a smaller incision just below that point where my feeding tube ended. On my neck, I have a scar (most often mistake it for a hickey) from where said feeding tube was inserted. A scar on my right breast from an old central line.
My eyes go there first. They always have. Most of the time, I find myself daydreaming of having the scars surgically removed or covered up with more tattoos. This time — for the first time — I didn’t. For the first time, I appreciated them. I think I might have even subconsciously thanked them for saving my life this time. For the first time.
The way I view my body has always been an odd, contradictory hurricane of emotions. I feel beautiful — I always feel beautiful — thanks to my hair and eyes and face. But everything below the face I’ve always felt neutral about or negatively toward.
As I did my typical glance in the mirror, I found myself smiling. I looked at my scars and smiled. I looked at my tattoos and smiled. I flexed an arm and smiled because I knew the muscles that now grace those once-twig-like arms have been a labor of love: they come from days of hard, manual, laborious work on my feet. I lift and lift and lift bins and baskets and tubs — most weighing in at more than 60 pounds — high over my head: I stack them in the warehouse, I organize them to be reviewed and looked over and bought in. Yes, they’re just full of clothes and shoes, but trust me, you’ve never seen so many clothes and shoes in your life. That’s a women’s resale shop, for you. You have to get on your hands and knees and lift, lift, lift and shove, shove, shove and squat, squat, squat to be able to fill your store — no one delivers the clothes for you; you have to find them yourself by sifting through these women’s lives. It’s rewarding and exhausting.
I never in a million years thought my body was capable of doing a job like this and doing it well. Having fibromyalgia, I thought I’d be able to sit at a desk all day clicking keyboard keys for the rest of my life. Or bed-ridden. Whichever came first…or last.
But no. My body has impressed me beyond explanation. I am proud of my body. For the first time. I am proud of this body — my body — and all that it does for me. It is able to be stronger than I ever could have dreamed, this body of mine. It is capable of more than mind-numbing, mind-blowing chronic pain. It is more than chronic fatigue. It is capable of so much more. My body showed my spirit this before my heart even had the chance to realize it.
So when I looked in that mirror, I was proud. I couldn’t pick any flaw. I couldn’t pick anything I’d want to change. I didn’t pinch my stomach to see how much flab was there or pat my hips thighs in frustration. I didn’t glare at my stretch marks.
Yes, I have gained more than twenty pounds since my trip to Paris last year. Yes, sometimes this makes my fibromyalgia symptoms worse — more weight to carry typically equals more physical pain — but did I want to change anything because I thought I was less than beautiful? No. For the first time, I saw my whole body as beautiful, and not just from the neck up. For the first time, I acknowledged its strength and knew it had grown stronger than I could’ve predicted. And it wasn’t stronger because of dieting or disordered eating or hours on a treadmill.
It was stronger from working hard at a job I love. Stronger from early afternoon and late night dance parties with my boyfriend. Stronger from more movement and from harder work. How could I not be proud of this fibromyalgia-ridden, chronically-and constantly-in-pain body of mine? It was 20 pounds heavier, but it was functioning and adapting in ways I never thought it would.
Because my body has been so good to me, I want to love it back. I want to start doing yoga again and meditating. I want to work to eat organically, healthfully and holistically. I want to go for long walks and swim. Because my body has surpassed my expectations, I am so inspired to raise the bar even higher for what this body of mine can do.
I thought of all these things as I glanced into that mirror. And I smiled, in shock, and hopped into a shower like any other day, but I knew something had changed. I knew I had changed. I was capable of doing whatever I set my mind to, just like my mother had always taught me. And for the first time, I had proof.
When was a time you felt proud of your body? Do you struggle with a negative self image? What has helped you overcome this struggle? What inspires you to feel and know you are beautiful? Please let me know! Let’s inspire each other. I want you to join me in this road toward body love. Leave a comment below!
A little less than a year ago, I went to Paris. It really changed the way I look at beauty and awakened a sense of travel, as well as a new sense of self. It was my first time traveling so far from my Ohio home — alone, with a group of classmates who I barely knew. It was amazing to me how fast these near-strangers became forever friends. As cliché and overused this phrase is, I truly had the time of my life. I’ll never forget it. I don’t think I have memories any more vivid than those of Paris. I proved a lot to myself during that trip: even with my disability, I could wander and travel and fly over oceans upon oceans. I could wander the streets and…thrive. It wasn’t just a luxurious trip…it was an adventure.
So here I am, waxing nostalgic; missing the markets, the mussels, that random time we went to see The Hunger Games hours before our friends in the United States were able to. I’m remembering the Louvre, the metro, the first real train ride I’ve ever taken. The perfect timing of my 21st birthday right before the trip. Hence the wine. The photography. The croissants and Nutella for breakfast. My odd obsession with photographing every Starbucks I came across. Versailles. The cherry blossoms and the tulips. How much my French improved during the course of the trip. And the walking. All the walking. The bizarre walk through the Catacombs. The scarves. The people. Kissing the tomb of Oscar Wilde for good luck in love. The language barrier. Climbing to the top of the Arc de Triomphe and The Notre Dame. The gargoyles. And even more walking. And coffee. Coffee. Coffee. How cold it was at the top of the Eiffel Tour at night. The most laughing I’ve ever done. And a few tears here and there. I soaked up every minute of it. It was so much more than I expected.
For the first time in my life, I was an adventurer; I was an explorer. Two roles I never thought I’d be able to play. Sure, my feet hurt worse than they ever had before and sometimes I was crippled with pain, but it was a satisfying pain. I’d never experienced that before. I imagine it’s the same sense of pain that a laboring mother goes through — I was laboring a new sense of self; a new sense of independence. I am forever grateful to Paris and its people. In honor of the approaching anniversary of my Paris trip, I’ve chosen a few favorite photos from my time there.
Click the link below to have a look!
Let’s talk about disability. Do you have a disability/different abilities like me? I have a chronic medical condition that affects my day to day life, but before I talk about my disability, I want to hear about yours. If you or a loved one have different abilities, how have you coped with society’s expectations? What has disability taught you? What are some pitfalls and peaks? Before I share my story, I want to hear yours.8BS8YSTDEVND