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….
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.
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.
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.
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.