“Your prescription is ready.” Her voice sounded like she was speaking through a tin can, but her words were clear. The refill I’d been waiting for—that I thought I wasn’t getting because my doctor’s office didn’t get back to me for days—was granted.
No words have ever been so sweet.
After waking up in the middle of the night yet again in agony, the constant pain in my hip was taking its toll. Normal, healthy people can’t possibly understand what it’s like to be in pain all the time. The people around me don’t quite know what to do with me. I don’t even know what to do with me, so I can’t blame them. Chronic pain isn’t something that gets better. We can hope to feel a little better, given some time and maybe nicer weather. But it’s always there, in the back of your mind: This will come back.
And it has.
After my longest flareup—November 2014 to June 2015—I had a few weeks of general comfort. Sure, my hip still hurt, but my hands and ankles and knees and shoulder blades felt like normal joints. In the last couple of weeks, the pain has crept back in.
I try to fake my way through my days, because I’ve noticed that it makes everyone around me more comfortable. It’s easier for the people in my life when I’m not sobbing in the middle of the night or canceling plans at the last minute. But there’s only so much grinning and bearing you can do, until it all becomes intolerable.
Winter is coming, and with it, that unbearable level of pain. I know not because I am in a negative mood, but because I’ve been living like this for over eight years. I’d just hoped that I’d have a bit longer of a reprieve. But summer doesn’t last forever.
In the throes of this chronic pain, there are four words that I most need to hear, aside from “Your prescription is ready.” They are: “I’m here for you.”
No words have ever been so sweet.
When I started tweeting for #ChronicLife, I hoped to give relatively healthy people a glimpse of what it’s like to live with invisible chronic pain. I wasn’t prepared for what I would learn! It was truly an amazing experience. I was able to connect with other people living with chronic pain—even some people I was already following. All this time, and I had no idea that so many other people were dealing with the same things. I also got a lot of good advice from other spoonies (people with invisible illness).
I also posted a basic day-in-the-life on my personal Facebook. I think a lot of my friends and family gained a better understanding of what I go through. Through all of this, though, I learned some important things about myself.
- I am coping better than I thought. I’ve developed quite the tool kit for combating the pain: heating pad, Tiger Balm, pain medications, electric blanket, journaling, and more. I’ve learned to rest when I need to. (Well, okay, I’m still working on this. I do tend to push myself to get “just one more thing” done.)
- Letting my body get extra sleep is nothing to feel guilty about. I tend to sleep in a lot. I have a hard time falling asleep and wake up in pain several times throughout the night. I always feel ashamed when I wake up in the afternoon, half the day gone. By talking to others, though, I learned that I’m not the only one who needs the extra sleep, and that it’s totally okay to allow myself to rest.
- I am able to see the positive side of my condition. Yes, I have lost a lot—including jobs and the ability to get my Bachelor’s degree—but this has also been a blessing in disguise. If it weren’t for my illness, I would probably still be in the web design industry, working at a job that I hate. Now I’m able to dedicate my time to writing. Being without the steady income is a little scary, but I’m happier than I’ve ever been.
- I am so blessed to have so many amazing people in my life. I truly have a dream support team. From my husband doing little things like opening jars before I even ask, to my therapist offering suggestions to keep my spirits up, to my friends understanding when I’m too sick to get together, I am one lucky girl. Throw in my awesome readers, who cheer me on, and I could not ask for more.
- There are endless resources for support and management on Twitter. I sort of already knew this, but my mind was blown by how many more I discovered in the last 24 hours. I can already tell that people like @ArthritisAshley and @RA_Kitchen are going to be very helpful.
I think I’ll be using the #ChronicLife hashtag more often. I heard others say the same.
Do you live a #ChronicLife? Do you know someone who does? What have you learned?
PS: Big thanks to Britt at Hurt Blogger for starting this movement! You should be proud, lovely!
I use Twitter—a lot. Mostly, I use it to connect with other spoonies—people with chronic invisible illnesses. (Read this to see how the spoon theory started.) It’s been a huge blessing. Living with undiagnosed chronic pain can feel quite lonely. The people in my life are incredibly supportive, but at the end of the day, they don’t completely understand what I go through. Twitter has helped me find people who get it. The #spoonie hashtag has gotten me through these last 7 years.
I stumbled upon Britt while skimming through the #spoonie hashtag, trying to give back some of the support I’ve received. She announced that she would be tweeting every moment of her day for the next 48 hours. I thought this was a kick-ass idea. Here was a chance to help people not living with chronic pain to understand what it’s like. There’s a mega stigma around invisible illnesses, even more so around pain. I cannot count how many doctors have accused me of hunting for narcotics or brushed me off because they couldn’t see anything wrong with me.
During Britt’s 48-hour period, something amazing happened: other people began tweeting their #ChronicLife experiences, too. I didn’t realize that anyone could jump in, until my pain buddy @DerekActual gave me the heads up. @HurtBlogger encouraged me to join and offered to add me to her list.
I will be tweeting a day in my #ChronicLife for the next 24 hours, but thought I should give you the Sparknotes version of my condition.
- My joint pain started in 2007, in my hands and wrists. It first manifested as numbness, but quickly changed over to pain. Initially, my doctor thought I might have carpal tunnel.
- In the last 7 years, I’ve developed pain in most of my joints: feet, ankles, knees, hips, lower back, elbows, hands, wrists, shoulder blades. Sometimes my ribs and jaw even hurt.
- My old PA suspected it was something autoimmune, but my blood work is always borderline or negative.
- I have seen dozens of specialists, including several rheumatologists. None of the rheumatologists wanted to diagnose me without a positive rheumatoid factor. There is great debate among specialists as to whether someone can have RA with a negative RF.
- I am currently in my longest and worst flareup, which started November 18th, 2014.
- My pain decreases when I am on Prednisone, but as soon as I finish it, the pain comes back with a vengeance.
- I recently had an MRI of my right hip done, because it’s been so painful. It came back with some baffling results that none of my doctors can seem to explain: “small synovial inclusion cyst or herniation pit” and “subcortical bone marrow edema.” I am currently waiting to see an orthopedic specialist, in the hopes that he can explain it.
- Personally, I think that I have Rheumatoid Arthritis. I have all of the symptoms, except for the positive blood work. According to an NIH article, 60% of RA patients are seronegative. I am concerned that my MRI results are signs of RA degeneration, and am looking for a rheumatologist who is more willing to diagnose me based on my symptoms, rather than just my blood work.
It’s been a very frustrating last 7 years, to say the least. I can’t work a “normal” job because of the pain, but haven’t been able to get a diagnosis and treatment. On the bright side, this has left my days wide open for writing. 😉
Follow me on Twitter for my #ChronicLife story.