By far, the response I’ve heard most often is “I had no idea you were sick!”
It’s understandable. My worst symptom of Mold Toxicity and Hashimoto’s Disease is Chronic Pain. It’s one of those unseeable symptoms. Millions suffer from Chronic Pain every day. But because it’s always there, and often there’s nothing that will help, you can’t stop life to tend to it. Pain has become a constant companion and something that those living with it just become used to.
The pain scale is a completely different thing for those in Chronic Pain. A few years ago, I was working with a migraine specialist. At the time, I was having some degree of migraine every day. (Every. Day. For months.) She asked me where my pain was on a scale of 0-10 with zero being no pain and 10 being the worst I’ve ever felt in my life. I told her that most days my pain was maybe a 4 or so. She just stared at me, shook her head, lowered her glasses and said “Now let’s pretend your neighbor who had never had a headache in their life was experiencing your everyday pain. What score would they give it?” After dreaming about what that life would be like, I said, “Ohhhhhh…. Poor guy would probably give it a 9.” She agreed. She gets it. And she helped me understand that my pain scale had been pretty altered by being in constant pain for so long. Before the migraines took hold, I had spent a full year in chronic pelvic pain due to endometriosis. At this point, I have now spent over 12 years pushing through physical pain of varying kinds. It’s always there and tending to it every day just isn’t in the realm of possibility when working a full time job or having any sort of life.
Chronic Pain looks like:
- Taking hours to get ready in the morning because things like taking a shower or doing my hair is exhausting.
- Walking slowly and mentally gearing myself up if I have to take the stairs.
- Purse ibuprofen, kitchen ibuprofen, bathroom ibuprofen, office ibuprofen, car ibuprofen…plus a Rx for good measure.
- Saying “I’m fine” because it would take way too much energy to explain why I’m not.
- Standing at my desk because it hurts to sit…Sitting at my desk because it’s exhausting to stand.
- Everyday things like a room that is too hot or a surprising cold wind causing pain to ramp up exponentially.
- Doing absolutely nothing on weekends in order to recover from the week.
- Dropping things ALL the time because my tendons are inflamed and my hands are tingly.
- Grumpiness.
- Anger.
- Sadness.
- Grief that you can’t enjoy the life you used to have.
- Disappointment when people ask if I’m feeling better (with big, hopeful eyes) and I have to let them down by explaining that I’m not, and won’t be, for a long time.
- Laughing, smiling, chatting like “normal”
Chronic Pain is often not talked about because those experiencing it can’t explain it to those who never have. It’s not relatable or easy to understand if you haven’t been there.
Yes, all my muscles
Yes, all my joints.
Yes, every day.
There are no “good” days when it comes to pain. There are bad days and there are worse days.
And yes, I still make life work, laugh at your jokes, and even smile at strangers.
It’s hard to believe that a person could hurt that much and still live life. How can I enjoy a laugh with friends or go out to dinner or … you name it if I really hurt that bad? It’s hard to believe that I’m in full body pain AND still enjoying parts of life (albeit at a much slower pace!). But that’s chronic pain. It’s miserable and sometimes debilitating, but otherwise, it’s a constant that is just as much a part of my life as the scar on my knee or the curl in my hair. Chronic Pain often means draining my physical cup in order to fill my emotional cup. Then, to refill the physical cup, I have to say no to things that might be helpful for my emotional state. It’s constant decision making. It’s a puzzle that is hard for anyone to understand, including doctors (not mine, thankfully).
In her podcast “Everything Happens”, Kate Bowler discusses the “Complexity of Pain” with Dr. Haider Warraich. It’s an eye-opening explanation of Chronic Pain and one that I think everyone should hear. (Every episode of her podcast is amazing and has been an emotional buoy for me these days.) I highly recommend taking 30ish minutes to listen and understand if you care about anyone who’s experiencing chronic pain. At the end of each episode, Kate offers a blessing to her listeners. If you’ve suffered from chronic pain, this one’s for you.
“Blessed are you on this pain-filled day. When getting out of bed seems to be an award worthy triumph. When you can’t remember what it feels like to not be so aware of your own body. When you arrange your weeks around appointments or side effects. Or when you stop telling the truth altogether about how badly it hurts, how scared you are of your own mind or the boring details of another non-diagnosis because you’re afraid people have stopped caring. You speak a language of suffering the world doesn’t try to understand. So blessed are you whose world has shrunk to a space so small it’s defined most by what is no longer possible. You count dear one. And so does your pain. It does not and did not disqualify you from belonging. For the truth of it is that life is painful, and what makes it so is the beautiful and terrible living side by side, our loves and our losses. Bless you, loves.”
It’s hard to wrap your mind around if you aren’t living it. So it’s understandable that most folks didn’t know I was sick. And it’s likely that most of us aren’t aware of others we meet who are dealing with similar chronic issues. It’s a good reminder to go a little easier on one another and to seek out moments of healing relief for ourselves. Sabbath is about so much more than resting our bodies, but physical rest is certainly a huge part of it. While my body is now forcing me into this time away to rest and heal, it’s a good time to get in touch with the ways my body is talking to me and to listen in ways I’ve refused to before. Here’s what I’m learning: pushing through isn’t holy; faking it hasn’t earned me any badge of honor; pain isn’t a contest; it’s ok to slow down when your body asks; and it’s ok to say “terrible, thanks for asking” (also a great podcast!) when others ask how I’m feeling, even if it’s not what they wanted to hear. (I’ve turned it into a little game to see who is amused and who is horrified by that response.) Maybe getting these messages through my thick skull can pave the way to a more authentic Sabbath practice once my forced Sabbath is complete. In the meantime, I’ll continue to try and give others grace in our chronic condition called life.
How can you help?
- Financial support is a big need. This treatment is ringing in at around $600 a month and is mostly not covered by insurance. You can contribute to UPC’s love gift here if you feel so moved. Hit the drop down menu and click “Kim Love Gift”. (venmo is @kimunc03 if you prefer)
- There are lots of products I’ll need that can be gifted. Check out the amazon wish list here.
- Send me fun hobby ideas. I need distractions!
- Send me your best book recommendations or loan me your favorites.
- And of course, I welcome hilarious jokes, memes, or stories from your life. As I start treatment and start feeling worse initially, I hope friends will keep me laughing. Tell me what’s happening in your world! Don’t expect a call back – just know I’m deeply grateful to be connected to you.
Seeking Sabbath 