The secret cost of chronic pain

I recently saw photos of a friend who has been going through some very serious medical challenges. The physical transformation caused by the medical treatments was unbelievable. She doesn’t even look like the same person. We became “sisters” via social media, so my love and concern for her has never been based on her appearance. I know that I don’t think differently of her. Yet my heart aches for the loss she must be feeling.

Waking up every morning to see a stranger in the mirror is something I struggle with, too. It is hard to accept that the person I see is really me. In my head, I still look like the photo on the left. Yet the mirror says that after 41 years of migraine, I really look like the photo on the right.

June 1990

Young, skinny, beautiful me wasn’t nearly as healthy as she looks.  At the time that photo was taken, I was in the middle of Chronic Migraine complicated by Medication Overuse Headaches and Cervicogenic Headaches due to neck damage from multiple car accidents. Undiagnosed for decades, symptoms of fibromyalgia and the early signs of osteoarthritis had already been creeping in.

January 2016

The second photo was taken just a few days ago on a really good day. I had just received my 5th round of Botox injections two days earlier and it was starting to kick in. There were no migraine attacks to spoil that beautiful day. It was 60 degrees and sunny in the middle of January. I spent the day cleaning up the garage and enjoying visits from both of my adult kids. Except for some low back pain late in the afternoon, I felt great. It was nice to feel productive and useful for once.

It isn’t just the weight gain brought on by years of inactivity plus countless rounds of prednisone, antidepressants, anticonvulsants, and blood pressure drugs. The change goes deeper. You can see it on my face. Living with pain has changed facial expressions, my skin tone, my posture, and so much more. In both photos, I am smiling, happy, and feeling good about myself and my life. Frankly, I understand and like myself a whole lot more now than I ever did in my 20s. Still, there is no denying that living with chronic pain has changed my appearance in ways I would prefer others not to see.

So why publish these photos online for the whole world to see?

I’m taking a chance that I am not the only one with this experience. Some might think that I’ve “let myself go.” That is simply not true. I’m not lazy and I don’t overeat. I am as active as my body will allow. I drink lots of water and take herbs, vitamins, and minerals. I juice, too. None of that ever changed the frequency or severity of my pain. Thanks to Botox, I have even been able to wean off most prescription medications. Where once I swallowed over 20 pills a day, I now take only two…and neither are for migraine. I do still have a few PRN prescriptions that help to manage symptom flare-ups. I rely most frequently on a weekly dose of triptan to abort the few migraine attacks I still experience.

For 41 years I have been telling myself that I will do more and do better if I can just get these migraine attacks under control. Now that day has finally come. Yet I have discovered that my body will not do the things I dreamed of doing. When you are forced (for decades) into bed for days at a time due to unbelievable pain, getting exercise is hard to do. It’s as though I have been dreaming for over 40 years and suddenly woke up from that nightmare, wondering, “What the hell happened to my body?”

Regardless of how it happened, I am now living in a body that I do not want. I didn’t create this problem intentionally by abuse or careless neglect, yet I am the only one who can change it. I don’t know what will happen on this journey. All I know is that I have to try.

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