Good Morning,
I am in year 18 of chronic back pain, complicated by the lasting mental effects of a concussion I got 2+ years ago. My profession is a professional fundraiser for well known educational institutions (Milton Academy, Mount Holyoke College, and Boston University among others). I have been "laid off" 5 times in the last 17 years starting from the onset of my chronic pain. I have been unemployed since my latest "layoff" for 7 months and counting. I have been fighting against the idea that I am disabled, but am now certain that my pain, and the mental effects of dealing with it, have been at the root of my career instability. Given my financial obligations, primarily a mortgage and supporting my wife who is paying 80% of education loans for her kids, my stepchildren, I am constantly stressed by continuing to pull my weight in the family and managing the physical and mental stresses of my pain.
My questions are:
a) In the pain vs. work dichotomy, have you been successful handling the stresses of high demand work with your pain issues? If so, how?
b) What role do (does) medication(s) play in your protocol?
c) Are you able to maintain an intimate relationship given the challenges of your personal issues? My wife is ready to divorce me because she thinks I am addicted to my medications; I believe I am still managing my pain so as to be able to be an equal partner in our household. We are not communicating at all about this, and she has for all intents said "get off your meds, or our marriage is over." I know my personal situation is just that, but any information in this area might broaden my perspective.
I live in Boston, so am looking for options in this area. If anyone can help with these questions and my profile, I would appreciate it greatly.
Many Thanks,
Paul Levinson
Hi Paul,
You ask some very good questions. I'll be happy to share my personal experiences in relation to your questions and hope some others will join me and do the same.
a) When my pain issues (eventually diagnosed as fibromyalgia) first began nearly 20 years ago, I was in a very stressful, high-demand job as Assistant Director of a statewide nonprofit for the developmentally disabled. I usually worked a minimum of 60 hrs. a week. Although my social life pretty much disappeared, I continued to push myself and maintain my work standards for several years. Eventually, though, I had to accept the fact that I couldn't continue at that pace and I took a somewhat less demanding job as an Office Manager. I was able to work at that level for a few more years. I left that job to care for my mother when she was diagnosed with terminal cancer. After she passed away, my small inheritance gave me the opportunity to pursue my dream of working from home as a writer, which is what I am still doing.
For me this is an ideal situation. I'm still able to work and support myself, but I can do it on my terms – resting when I need to and working when I feel best (which is usually late at night). People frequently ask me why I don't just file for disability. But I find that continuing to work is important for me – both physically and mentally. Working helps me to focus on something besides the pain and sometimes I'm even able to forget the pain for a little while and get completely involved in a project. It also makes me feel useful knowing I'm still contributing something to society and hopefully helping others in the process.
b) The treatment protocol that works best for me is a combination of medication, acupuncture and myofascial release therapy. I've been using that combo for about 7 years and it seems to work better for me than anything else.
c) I'm afraid I can't be of much help on your question about maintaining an intimate relationship. I was divorced when my chronic pain problems began and quite frankly haven't had the energy to pursue an active social life, which makes the chances of developing an intimate relationship pretty slim. I feel sure if I were married, I wouldn't be able to work the hours I do as I would have to reserve more energy for the relationship. I do try to set aside some time and energy for my children and grandchildren, but that's not the same thing as maintaining a daily relationship with a spouse.
One thing chronic pain did for me several years ago was force me to reevaluate my life and decide what my priorities were. I had to accept that I was never going to accomplish everything I wanted to both personally and professionally and I had to make some tough decisions. Thankfully, I've never regretted those decisions.
You mentioned your wife's concern about your medications. Please read Opioids: Addiction vs. Dependence and share it with your wife. It may help her to understand that medications are necessary in order for you to function as normally as possible. If you haven't already, you might also consider taking her with you to your doctor so he can help her understand what you need to do to control your pain.
Good luck to you, Paul. I hope you're able to find some workable resolutions.
Karen
Good Morning, Karen
Thank you so much for taking the time and sharing so personally. We are so trained by society that if we are not functioning at 150% of capacity, we are not good people. Which of course is nonsense. If working that hard was good for us, shrinks in our society have many fewer clients.
I think I am reaching the point of accepting my limitations and finding a way to build a life around them. I might be offered a part-time job which will let me manage the unpredictable nature and flow of my pains. The hit to my income will be significant, but I'll dig into my retirement fund for now, and hope to build it back up. Besides, in this economy, none of us is going to be able to retire, so we might never use the $$ anyway.
I appreciate the referral to the opioids article. My wife is no longer willing to accept that medication, especially narcotics, can still leave me functional. On my good days, I know this is because of her family history, not because she is trying to be cruel to me. That said, her apparent choice to end the relationship instead of getting some benefits from our deep knowledge and support of each other for almost 17 years is very difficult to accept. I know the marriage contract is written in small type, but the word commitment is almost always BOLD and underlined.
You have really helped me, and I am deeply grateful. Wherever you are, I hope you are not getting the 14th snowstorm in the last 28 days, which is what it feels like here in Massachusetts.
Be Well and Stay in Touch if You Want,
Paul