Guest Posts | Living with Chronic Illness

Be Our Guest Fridays {17}: Journey through Chronic Pain by I’m Lost in Books

Welcome to Be Our Guest Fridays!

Be Our Guest Fridays is a weekly feature where we feature guest posts by our favorite bloggers and authors. We started this feature as a fun way to give back to the blogging community. We are excited to share with you these creative, inspiring and knowledgeable bloggers.

Today’s Guest Post

Today, I have my lovely Travel the World in Books Reading Challenge co-host Becca from Lost in Books as my guest blogger. I have been following her blog for several years and participate in the Book Bloggers do it Better Google + group that she runs. Not only is she an amazing book blogger but she lives with chronic pain and invisible illnesses. FIVE chronic pain illnesses to be exact. She does not talk about her illnesses on her blog much, if at all, so I’m honored she shared her deeply personal and emotional words with us. I think it’s important to share people’s stories of how chronic illnesses first appear, to raise awareness so readers to know to be vigilant about warning signs. I give you Becca’s story….

blanksidebarbanner

Journey through Chronic Pain by Guest Blogger Lost in Books.

Journey through Chronic Pain

by Becca from Lost in Books

I want to go for a run.

I want to go rock climbing.

I want to be a teacher again.

I want to be able to stand for more than 45 seconds.

I want to remember what it is like not to be in pain.

I want to remember what it’s like not to be tired.

I want my body to do what I tell it to do.

Such is the life I now find myself. For the past 15 years I have lived in chronic pain. For the last 2 years I have barely been able to do much at all the pain is so bad. I live with Degenerative Disc Disease, Fibromyalgia, Chronic Fatigue Syndrome, Myofascial Pain Disorder, and Osteoarthritis. I am 35 years old.

When I was a teenager, I was full of energy. I played sports. I loved to snow ski and hike. I swam like a fish. I was always on the go. When I was 19, I fell down some icy stairs at college. I was a little bruised but thought I was fine. Over the next 2.5 months I would find my foot falling asleep more and more. I found the back of my leg to have a sharp pain that kept inching higher and higher. By the time I went home for Christmas, the pain was so bad I had barely made it to my classes for final exams.

I went to the doctor to discover I had ruptured 2 discs in my lower back. Not just bulging, but full on ruptured. I needed surgery. I had to wait until after Christmas to have surgery because doctors were on vacation. I had to take the semester off from college. By the time January 15th rolled around I was in so much pain I woke up from dead sleep screaming. I got the surgery and did my physical therapy and was fine for about another year. I started noticing more pain in my back again and began to freak out I needed more surgery. Doctors did MRIs and found that because so much of my discs had ruptured and were now removed, my vertebrae had begun collapsing. I developed osteoarthritis and was diagnosed with Degenerative Disc Disease, 2 pain syndromes that would last the rest of my life. I was 21.

I did another round of physical therapy which helped for a long time. I finished college. I managed to swim and go dancing and still keep in relatively good shape – as long as I had pain medicine. My last year of college I was taking 18 hours a semester trying to finish and get the heck out of there. Between having had to take time off for my surgery (and my ex-fiance’s near fatal car accident months later) and changing schools, I was in my 6th year. I had to take 18 hours each semester and graduate in May or graduate in summer. I started to find myself getting tired more often. I was practically dead at the end of each day, but I chalked that up to my demanding schedule. I was working a part-time job, as well, and dating a guy who lived 2 hours away. No wonder I was exhausted, right?

That summer I moved to Charlotte to begin working in the school system there as a teacher. It was also where my bf lived so that worked out well. We got engaged, I loved my job, and things seemed to be going in the right direction for me. But I was dead tired. All the time. I began crashing immediately after the school day was over. But teaching pre-k is exhausting, right? Then I began getting tired during school. One day in about November I fell asleep while teaching. No joke. Thank goodness that I had an assistant who helped me by taking over the lead position for the rest of the day. My muscles were sore ll of the time, too, which worried me. I got myself to the doctor where he did a test on me called a Tender Point test. He said, “That was a test to see if you have Fibromyalgia. You need 11 of the 18 points to be diagnosed. You have 15. I am sending you to a specialist.”

I had never even heard of Fibromyalgia but I was relieved to have an answer for why I was exhausted and sore all the time. Fibromyalgia is a genetic disease but it can lay dormant until either a trauma or a large amount of stress brings it on. Well, the stress of school, planning a wedding, moving, and starting a new job are all stressful on their own, nevermind all of them together. So yet another illness I would have for the rest of my life. Awesome, I thought. I had just turned 26.

I got on some new meds and did pretty decently for the next couple of years, though that guy decided not to marry someone with another chronic illness. It crushed me at first, but now I am very thankful I did not marry someone who couldn’t cope with the worse part of “for better or worse”.

By the time I entered my fourth year teaching, at age 29, I was getting worse and worse. I’d somehow gotten into an abusive relationship and that stress made me much worse. I got out of the relationship when my father got diagnosed with cancer and was told he had months to live. I was flaming out hard at work and my back was getting worse, as well, so I decided to quit a job I loved to move back home and take care of my dad and rest up my own body.

My dad passed weeks later but I never did recover my body back. I kept getting worse and worse. I managed to work for half a year here, half a year there but eventually my body would give out again. My last job I was actually fired from because my body could not keep up with the demands of the job. I had a flare-up (where symptoms are exasperated for a length of time, usually days or a week or two) for I think it was 2 months.

I have been unable to work since. My discs are gone completely in my lower back and my vertebrae are sitting on top of one another. Picture that for a second. I have bone spurs coming out of my spine as long as a pinky finger. I have constant nerve pain. I have migraine headaches. I have muscle soreness, akin to the soreness of the flu, all day every day. I have pain in my joints, muscles, soft tissues, and ligaments all day every day. I have something called subluxation that makes my skeleton shift to the side because of my spine being messed up and I have to go to a chiropractor and get an adjustment regularly. I have arthritis in my back, right ankle, and both hips now and they think I am getting it in my hands.

I have issues with the fascia in my body and they have to be massaged and spread out weekly
because they bunch up and do not allow blood to flow from my heart to my muscles. My muscles have to be massaged weekly, too, or I can’t get out of bed (it really annoys me when people think I am so lucky to be getting a massage – it’s the opposite.) I have dull achy pain, sharp stabbing pain, shooting pain, tingling pain, throbbing pain. I have a fatigue that I carry around like a burqa. I am in physical therapy for the 6th time trying to get the symptoms to stay calm and avoid a second back surgery. If I have to have another surgery I will need to have my spine fused, which will get rid of the present pain but will create a different kind.

I don’t like telling people how much pain I am in all of the time. I don’t like people pitying me. I don’t like thinking about how these are degenerative conditions (fibro is, I don’t care what they say. Everyone I know with it gets worse and worse) and I will never get better. I don’t like admitting that I am not in control of the way my body works. I can tell my legs and back and hips to stand there and cook an egg for dinner all I want, but it doesn’t listen to me. There is a bit of mind over matter and I use it to my fullest extent, which is how I am still as mobile as I am.

I don’t tell my story so that you will feel bad for me or for attention. I am sharing this because I want people to be aware that there are people out there who would love nothing more than to live a typical life but cannot. I share this because I want people to realize that invisible illnesses exist. Just because someone is not in a wheelchair does not mean they don’t need one sometimes. It doesn’t mean they are one bad week away from being in one permanently. It means that every single person you meet could be fighting a battle you know nothing about. Be kind to other people you meet. Be thankful for what you take for granted every day. I know I am.

I am thankful for the ability to walk very short distances.

I am thankful for family to help me out financially. I’d be living on the street otherwise.

I am thankful for supportive and understanding friends.

I am thankful for a supportive boyfriend (of nearly 6 years) who will never understand my ex-fiance’s reaction.

I am thankful for blogging which helps me to feel useful.

I am thankful for social media which fosters my social life when I am bedridden.

Even though life is way off course from where I would be if I was healthy, I am thankful for a lot. My motto: It could always be worse. Take nothing for granted.

About Becca

becca-lost-in-books
Photo from Lost in Books

From Becca’s site:

I am a book blogger and enthusiastic reader who loves to meet new people. I have serious obsessions with both yoga and candles. I think I must have been a flapper and a politically-minded hippie in past lives. When I am not writing or on social media, I am either drawing and painting, dancing, singing karaoke, or with my nose buried in a book somewhere. If I had money and health, I’d be traveling the world.

Find Becca on her blog | Facebook | Google + | Pinterest | Twitter
blanksidebarbanner

Awareness is so important for early diagnosis and pain management of chronic illnesses. Becca’s post shows us chronic illnesses tend to multiply, once you have one chronic illness, you are more prone to others. She also inspires us to not judge the appearances of others. These illnesses are called invisible for a reason, pain is not something you can see but it’s something you feel. When I started talking more about my Rheumatoid Arthritis on my blog, it’s incredible how many people have responded that they have a chronic illness too. It’s more prevalent than I ever thought and just goes to show, you really never can know what a person is enduring.

I wrote a guest post on my invisible illness. There are not cures for chronic illnesses and patients need love, respect and empathy from those they meet, know and love. Make it your Random Act of Kindness to show these patients the love and support they need.

This post shared with SITS Sharefest and Friendship Friday.

Are you or do you know someone with a chronic illness? How do you cope with it? Share your story with us and find an encouraging word from our supportive community.

Similar Posts

32 Comments

  1. I think it’s important to share people’s stories of chronic illnesses, especially invisible ones to raise awareness. So thank you Becca for sharing yours.
    On a personal note I SO understand the need to feel useful and how the internet is a saviour for people who cannot function in the other world very well. Blogging has saved my sanity, given me something to do where I feel worthwhile. I will visit your blog now…. 🙂

  2. Becca & Tanya –

    I am just a BIT behind on blogs & just had a chance to read this. Thanks so much for sharing your story Becca. As you know, you and I have a lot in common, though pain has never been a very big part of my illnesses. I really like how you started your post with the things you can’t do and ended with what you are grateful for. I try to maintain that same kind of attitude. I also feel the same way about the invisibility of our illnesses – it has taught me, like you said, that EVERYone you meet could be dealing with all kinds of challenges that aren’t outwardly apparent.

    Thanks so much for sharing and helping to build awareness of invisible illnesses!

    Sue

    Live with CFS

    1. Thanks for stopping by Sue. I agree it’s important to raise awareness of invisible illness of to make others realize you can’t judge a person by their appearance.

  3. Hi Becca, Thanks for sharing your story. We have shared before our chronic pain. But, since the last time through messaging. I just learned in April besides the Fibro, I also have Chronic Digenerative Disc Disease. I am about to go to the doctor for another conditon, constant sinus headaches. Ouch! almost every day. Thank you so much for sharing. I can relate to almost everything you said. Mine silent illnesses came when I am much older than you. Your post brought tears to my eyes. That actually someone is experiencing the same things, and understands what I am going through. I like you don’t talk about it, because people don’t understand. Fibro, is all in your head. It is a women’s disease. Enough about me. .. Keep on truckin’ Becca. Don’t let it get you down. There are plenty of days I feel miserable too. I would love for us and other’s like us to chat sometime on a private forum. Not to commiserate. But learn how others deal with the silent illness, and what others do to tackle it. Because I think we can support each other.

  4. I admire your courage and strength throughout all of this. And your gratitude. It seems as though you are blessed with a great family and friends. Thanks for sharing your story.

    1. I wasn’t always blessed and even a couple of times when I thought I was, turned out I wasn’t. It’s been a long road but I feel in a pretty good place with that now. So many people do not have that. Even people in my extended family think I am making it up or I’m just lazy and not trying. I am thankful for what I have because I know how difficult it is to find. Thanks for reading my story, Savvy!

  5. I’m so glad you shared your story Becca, I don’t know much about chronic pain either, even though I have a friend who has had several surgeries and pain issues since a bad fall too. She is so afraid of the meds that control her pain. Another friend of mine has Crohn’s Disease and it’s so debilitating it’s awful. Your honesty has helped so many to learn about others. You are brave and beautiful!!

    1. Aww, thank you, Anita. My grandmother had Chrohn’s and it can be very hard to deal with! I think it is sometimes hard to understand what people really go through when you can’t see the disability and see the deterioration with your eyes. It’s hard to wrap our minds around it.

  6. It isn’t fair, at all! As autoimmune diseases get better understood, I hope medical research will hit on some help for chronic pain and diseases such as yours. In the meantime, it’s good to keep trying to raise awareness this way, so thank you for sharing with us!

  7. I also have fibromyalgia and a flurry of other random illnesses that perplex my doctors and pretty much cripple me most days, starting when I was only 14 years old. Like Becca, I loathe to talk about pain because then *some* people start up the pity speeches, and a defiant few think your pain is “all in your head” (which, quite literally, any pain is bound to be in your head). What’s not so great about my pain plethora is mine is very invisible- I can grin and bear it, say “I’m good”, look the picture of health, and still be in a lot of pain without anyone the wiser, which leads to awkward questions like “Why aren’t you in school?”, “What do you do for work?”, and “You mean you can’t work?”.
    Sometimes I wish that we were equipped with a pain-o-meter at birth so I could point to it and say, “So could you work or go to school, while being in x amount of pain, while running solely on the boon of caffeine, and while having people like you to deal with?” Luckily, the doubters have mostly been my extended relatives, who I avoid like the plague. There are people who understand out there, but I just wish there were more of them.
    Great and educational post!
    ~Litha Nelle

    1. I did not realize you have fibro, too. ((HUGS)). I so agree that it would be much easier to explain to people if they had any idea the amount of pain we are in on a daily basis. We think a day that’s a 5 on the pain scale is a welcome respite, while typical people would be in too much pain to do anything. I wish I could figure out a way to accurately convey it. On top of that, fibro is so weird because it is a different set of symptoms and varying degrees of intensity on each of the symptoms for every person it touches. I hate being asked “So, what do you do for a living?” when I meet someone new. They are just trying to get to know me but it makes me feel that I either answer a) I’m unemployed or b) I’m disabled, neither of which really makes me feel great. So I say “I’m a blogger.”

  8. Thanks for writing with such eloquence and wisdom about something so important. I especially identified with the impact of your having several orthopedic surgeries. I’ve had two hip replacements for RA damage, and they take a bite out of one’s year each time. Life has to be rearranged. Even with much improved mobility, the issue of mobility is always lurking. But I would just like to say that improvement and reduction of pain may arrive as suddenly (and inexplicably) as decline and I hope for such relief and improvement in your future! Thanks also for sharing your intellectual energy and breadth of appreciation of life and people through your blog. I’ve always admired all you contribute with your lively wit and insight!

    1. I didn’t remember you had RA. Sorry to hear you had two hip replacements but hope they improved your pain. I had hand and foot surgery and it definitely impacted mobility there too. Thanks for sharing your story and encouraging words with us.

  9. Thanks for writing with such eloquence and wisdom about something so important. I especially identified with the impact of your having several orthopedic surgeries. I’ve had two hip replacements for RA damage, and they take a bite out of one’s year each time. Life has to be rearranged. Even with much improved mobility, the issue of mobility is always lurking. But I would just like to say that improvement and reduction of pain may arrive as suddenly (and inexplicably) as decline and I hope for such relief and improvement in your future! Thanks also for sharing your intellectual energy and breadth of appreciation of life and people through your blog. I’ve always admired all you contribute with your lively wit and insight!

  10. I had only a taste of chronic illness while pregnant and it definitely opened my eyes to what someone with chronic pain goes through. While I was always sympathetic it really is hard to fully comprehend till you go through it (or watch someone close to you that you love suffer). Thankfully mine was temporary and did go away. Becca thanks for sharing your story.

    1. Thanks for stopping by Caspette and your kind words. I am sorry you had a chronic illness but so glad it was only temporary. In my opinion, empathy anf understanding are the best things you can give people with chronic illnesses.

    1. Thanks for your strength in telling your story. I am just amazed at all you have been through and still you have such a positive spirit.

      I know it causes me a flare to write about my RA but we do have important stories to tell and bring awareness. There are so many people with chronic illness and hope it helps someone too.

Leave a Reply

Your email address will not be published.