Why I Keep Working

When chronic pain struck, it drove me right off the track of my life plan. I had been driven, motivated and excited by life. I had started my own business and was passionately pursuing a career in the mental health profession. Getting struck down almost took me to a complete stop. But it didn’t. It just slowed me down so much that I could barely recognize myself. I went on medication that clouded my brain. It put me in a double whammy state of pain and then the brain fog that came with the only thing that minimized the pain. The failure of two surgeries to get me out of pain added a sense of hopelessness and discouragement to my already knocked down state. But there were some ways in which I was lucky: I was lucky enough to have a few good hours a day during which I could think and work. I was lucky enough to be my own boss and was able to set my own hours. I was lucky enough to have a very supportive and loving husband, friends and family.

In my darkest, most painful, most discouraged hours I contemplated going on disability (among other even worse options). But I continued to work, albeit with greatly reduced hours.

The defining moment was when I contacted my office landlord and asked about getting out of my lease early. When he said that I could, I hung up the phone and began to cry. The potential loss of my career, of the people I worked with, the clients who were like family to me felt worse than any of the blows so far. I realized at that moment that the work I was doing, being there for other people, was actually saving me. I realized that I never stopped loving my work and I couldn’t lose that. It gave me purpose, meaning, and identity. It was a thread holding me on to life.

That’s Crepitus!

I’m still dealing with the physical and emotional implications of my most recent setback which was caused by a massage therapist working, apparently, outside of his scope of practice. After the useless massage: big meaty hands moving randomly over my back, not finding or understanding my pain; he decided to have me seated and twisted my torso as far as he could both right and left, over-stretching my joints. According to my chiropractor, I now have inflammation and crepitus* in my T/L Junction. I had never heard of crepitus before. It sounds like something you might try to put into a really scary Halloween Costume. “Would you add some crepitus to this scar to make it look really gory?”

But seriously, I am pissed about this, and it is hard not to let that frustration, anger and resentment consume me or make me feel worse. I am getting treatment for it and being very careful. I can’t twist at all or do any exercise that uses my arms or it will flare me up, which I learned after doing 10 minutes on an elliptical machine and getting extremely sore. I just keep telling myself that this setback is temporary and I will get back to dealing with only the usual pain, the “ice pick” feeling in my lower back, right side.

I talk about being angry, but chronic pain has an emotionally numbing effect on me. All my energy goes to the very basics of functioning. Get out of bed, feed pets,  have coffee, eat breakfast, take a break, get dressed, do something with my hair, put on some make-up, go to work (part-time), come home, rest, rest, rest, play some games on iPad, rest, figure out dinner, make dinner or allow DH to make dinner (I’m lucky there) or order delivery, eat, rest, rest, rest, feed pets, go to bed. Repeat.

It’s a moment to moment kind of life. I try to find balance between rest and gentle movement, between isolation and connection, between work and self care; each focusing on either distraction from pain or gearing my energy up to do the next thing.

I have a friend who is really sweet, but when something goes wrong, she says “That’s Crap!” There is something hilarious about it, and cathartic. Perhaps crepitus should be a new curse word. That’s CREPITUS! I feel a little better now.

*Crepitus: A clinical sign in medicine that is characterized by a peculiar crackling, crinkly, or grating feeling or sound under the skin, around the lungs, or in the joints. Crepitus in soft tissues is often due to gas, most often air, that has penetrated and infiltrated an area where it should not normally be (for example, in the soft tissues beneath the skin). Crepitus in a joint can indicate cartilage wear in the joint space. (medicinenet.com)
 

The Ups and Downs of Recovery

Today is a pretty good day. I have a wonderful massage therapist who comes to my home. With her help I have been able to get off all pain medication except Meloxicam, an anti-inflammatory, which I am not even sure helps with the pain. My massage therapist is a genius. She can feel my back and tune right into what hurts and what will help. This is as close to a miracle as I have come in my journey towards healing. What medical doctors don’t know or understand is the role soft tissue plays in many pain syndromes. They think if something doesn’t show on an x-ray or an MRI, it doesn’t exist; or if something does show, it must be the pain generator. What I am learning is that scar tissue after an injury or surgery can press on a nerve and cause pain, and that muscle can trap a nerve, or irritate a nerve.

When she first felt my sore area, she could feel exactly where it hurt. This was so validating that I welled up with tears. It had been years of doctors speculating, ‘it could be this, it could be that…”, or ‘it is this” or it is that”, or this or that should have helped. “But it didn’t!” “Well, it doesn’t always… let’s do it again and see if it helps a second or third time!”

A few weeks ago, I was unable to see my massage therapist and I tried someone else two weeks in a row. He managed to throw my middle back out of alignment causing a pain so severe that I worried he had hurt my kidneys. My chiropractor observed that I had destabilization in an area she had never felt before. Great. Thanks massage therapist.

But the truth is, this has been the pattern of recovery for me. Two steps forward one step back, or one step forward, two steps back. Up and down and around. Slow and oh, so frustrating, – and I have been hurt by so-called “helping professionals” probably more than helped when all is said and done. But still, I keep going.

Today I am recovering from my setback. I am back on the right track, a track that took me 4 1/2 years to find. I am glad I didn’t give up. I will never give up trying to get well. At the same time, I am doing my best to live with the pain and focus on having a good life. It feels good to write this blog. Thank you for listening.

Friend on the Shelf

My first inspiration for this blog came from my desire to write a letter to my close friends. To my friends, I feel like I have become the friend put away on the shelf. Let me be clear, you haven’t put me there! I have put myself on the shelf. Since developing severe back pain at the beginning of 2011, and having that pain become  constant and chronic, I have not been able to be the friend I once was; engaged, interested and available. I have been focused on myself, my pain and my endeavors to get out of pain. I have been tired, grumpy, boring, avoidant, apathetic and just basically not there. I don’t like this about myself. I don’t want to be just this memory of a friend. I keep waiting for the day I am back, full of life, and fun again. I think, “after this treatment, I’ll be back,” or “after that surgery, I’ll be back,” but that day hasn’t come yet.

As for you, my friends, you have been loving, patient, supportive, available and interested. You have never made me feel bad for being in the situation I am in. You have never blamed me, discounted my experience, or made me feel like I have lost my worth to you. I count myself very, very lucky to have such wonderful friends. I hope you know I still care very much about you! My absence is not personal towards you. I am the same person you always knew, but with this added burden of pain, I do not have the incentive to engage.

Please know that I am working very hard to get better, to be stronger, to learn from this, and to get myself off the shelf. Please know that when and if you need me, just reach out and take me off the shelf and know that I am there for you. I have not stopped caring. I am just presently in storage.