The other day, I went to see my pain management doctor for trigger point injections. I got about six of them, and after they were done, my doctor said I did amazing for someone who had never received them before. He remarked on how I didn’t even flinch — not once. I kind of chuckled and said I had a high tolerance for pain. He responded that perhaps I was a bit “clandestine” about my pain.
I had to look up clandestine. It generally means secretive, especially with illicit activities. Well, my pain is not illicit, and I think he really meant that I’m just secretive about how much pain I am in.
I’m the kind of person who has random bruises, but has no idea how they got there. I’m the kind of person who subluxated my patellas, thumbs and toes and just kind of went on. I’m the kind of person who doesn’t realize she has a second-degree burn because it “just hurt a little.”
Pain is white noise in my life. It’s in the background — always present. So present, in fact, that I often don’t realize when I’ve injured something or am seriously ill. I attribute things to my “normal” when in fact they can be much more serious.
When I had pneumonia last year and almost died, I thought I was just a little bit sick and had the flu or something. It wasn’t until my oxygen levels were in the 80’s and I couldn’t breathe that I went to the doctor. Until then, I had been using breathing treatments and was just going about life as usual.
And I almost died.
When you are chronically ill, when you’re always in pain and you don’t always have the best mind-body connection. It is just that — white noise. It is always there, so you learn to tune it out. I often remark that I’m at a 3 or 4 on the pain scale, but upon looking at various pain scales and what the numbers actually correlate to, I realize I live my life somewhere in the 7 to 9 range on a daily basis.
When I go to the hospital, I never tell them my pain is a 10. A 10 to me is dying. But in reality, I’m often at a 10. My pain gets so high that it starts disrupting my breathing and sends my heart rate soaring as my body tries to regulate my pain.
Most of the time, I just keep pushing through. Most days I’m in bed, but I know that moving helps. I was doing a lot of stretching, but then I found out I have Ehlers-Danlos syndrome and suddenly I’m not allowed to stretch like that anymore.
I’ve found various ways to help with the pain — topical creams, elevating my legs, alternating ice and heat and essential oils. I also take some pain medication, but I’ve gotten so used to being in pain that it just sits there in the background, occupying my body but at a disconnect with my mind.
I go through the motions of my day, nursing my sore body along, but I’m always willing to push myself when I have rare moments of fun. I live each day with a constant headache, which can morph into a serious migraine at any time.
I’ve developed a good mask. It protects me pretty well and doesn’t let on how bad my pain is. I’ve learned that when I want to go out that I need to put some extra effort into my mask and make it a little stronger in order to make it through the outing.
The pain is here, and it’s here to stay.
I take solace in the fact that the static of it is always there — sometimes on mute, sometimes on surround sound. It makes me appreciate my good days more because I know how bad a bad day can be.
Pain will always be a part of my life. In order to deal with it, I have to tune it out. I have to put it on mute. But it’s always there, and sometimes I just can’t turn it off, no matter how hard I try.
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Iris is somewhat of a unicorn — a zebra unicorn even! Born with a congenital heart condition, she survived two open heart surgeries before age 4. She was diagnosed with a mood disorder and anxiety in 2008. After recovering from several hospitalizations, she went on to get a B.A. in Child and Adolescent Development and then an M.A. in Psychology. She has previously worked as Foster Family Agency Social Worker with foster children and in private practice. Iris is also an Invisible Illness Warrior. Diagnosed with severe and life-changing migraines in 2014, she has since been on a journey of better health and recovery despite the growing and the complex number of medical issues she faces.
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