2 days ago I sat for a half-hour interview with Dr. Gomez from CBS news. This was part of a segment he was doing on the effectiveness of firbomyalgia and TMS - a technology that uses a magnetic residence like device to target specific areas of the brain.
I guess I should go back a bit. I was diagnosed with fibromyalgia when I was 18, over 20 years ago. The condition is, as best as medical science can determine today, caused by a malfunction in the brains neurological response to pain, mainly in the system that creates seratonin and neuroephin. There currently is not a treatment which has proven effective over long the term.
Over the last 20 years I have tried just about every form of conventional and alternative treatment. While I found temporary relief with some of them, nothing brought permanent relief. The intensity of the pain tends to fluctuate over time. A few years ago I had what was perhaps one of my worst flair ups of the symptoms in years. It really forced me to take stock and change the way I was living.
One of the ways I coped with this condition prior to that was simply to pretend it didn't exist. For about 5 years I didn't talk about it to anyone except maybe my acupuncturist and chiropractor. I held this condition as a weakness. Something to be ashamed of, something that left me feeling less than adequate. I tried to compensate by doing more than most people would think sane on any given day. Combining work, education, community service projects - I would leave the house at 8am and finish my responsibilities most days after 9pm.
Even for someone without this kind of condition, day after day, week after week, a schedule of this kind would take its toll. It eventually caught up to me. I had, after a noble effort, run myself into the ground and had to really take stock of what was working for me and what was not.
One of the first things I realized was that I needed to begin talking about my condition and how it was affecting me to the people close to me. Keeping it all in ended up keeping people at a distance. I felt if you got too close to me you would know I was really weaker than I tried to prove I was.
It wasn't easy for me to make that shift - to learn to communicate my limits. It was necessary. My employer needed to know how much work I could put in. My family and friends needed to know that when I said I needed time to rest it wasn't about them - that in resting I would be able to be more present with them later.
So what got me from a stoic, 'I'll deal with it myself' point of view to agreeing to be on national TV talking about my pain and weakness?
A lot of things really. First, I needed to find a way to reduce the pain I was in (which for me includes this TMS treatment, acupuncture, yoga, nutrition and few other things). Second, I had realize that I needed help and that it was important for the people around, those close to me and who needed to rely on me, to know what I was going through - not so that they could save me or fix me, but because we needed to be able to communicate, to make plans, to know what I was able to do and what I couldn't. Wrapped up in all of this is that I needed to know what changes I should make in my life to better manage the condition.
Once the pain was down it was easier to get back in the habit of regular exercise, getting better sleep, and acknowledging my limits to myself. This last piece was so much easier to do after I discussed it with other people. Admitting my weakness to others allowed me to recognize it in myself, which allowed me to take better care of myself, which made it less of a weakness.
The final piece though is that it is helpful to others. Whatever you are using to manage the pain, to reduce or try to remove it, if its working keep at it. If its not try something new. What I can offer as a coach is support in making these decisions (What is going to be best for you?), in finding ways to better communicate what is going on, and in structuring your life in a way that is supportive and active and connected to the people you care for.
For more information check out my Coaching & Chronic Pain page.
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