Hi, my name is Norman Hanley, founder of Men With Fibromyalgia. This is my story.
I once saw someone say “Well, it is like Samson, when Delilah cut off his hair.” but it is more than this. For me, Fibromyalgia was at first a slow onset starting sometime in 2008/09, being extra tired after physical labor, pain lasting a little longer than it should, and not sleeping well. But that’s just part of getting older right?
So, as a traveling salesmen I started to see my sales decline, I was not able to focus on my job, and just keep feeling more and more run down. So in 2012 quit that job so I could find something in my home area, thinking it was just to much travel all the time. But after finding a PT Job, getting promoted to full time, then to a even higher position within the year, life was looking great, my career was back on track, money was flowing again, and my wife and I were in a great place. Then my crash came hard in 2013…
As I tell this story I have to look back and know you cannot read my mind, or know the time frame, so please know that as a man I was raised to be the provider, the hunter, the protector, the head and leader of my family. I am supposed to be able to do anything!
I was used to being respected and called upon by my peers for help. I had friends and was active in life, from hiking and camping, to playing sports, even being a local motivational speaker! But as my crash came, I not only was in a quit or be fired situation, I was in constant pain, and crying like a little girl 2-4 times per day as my emotions and pain were all over the place!
This was a very low time in my life, and I had many theory’s as to what was wrong with me. I just knew that a Doctor could give me a pill and I would be fine. But until then how can anyone respect what I have become? I was in pain night and day, exhausted all of the time, and emotional wreck, and not enough energy to do anything. Who could like much less love anyone like that? I saw my friends start pulling away, less calls to go “hang out” and my life falling to pieces around me.
The pain I have, never seems to go away. Day and night, from a throbbing dull ache to a sharp stabbing that seemed to move around my body completely at random. As for the exhaustion, I would be chugging along fine, and all of a sudden I felt like my brain literately just switched off… What am I doing? What was I doing… Even with the task right in front of me. What Is WRONG WITH ME???
Sometimes when the pain was just to much, I would lash out in anger towards my friends and my wife, my frustration in not being able to handle and finish a simple daily task like cook a meal, completely infuriated me! This is not me. What happened? And when did it happen?
I used to have friends, but now, so many assume that I am “sick“ so they never call anymore. I felt so
alone, and yet at the same time I did not want anyone around me, as “hanging with friends takes so much energy that I do not have.
Fortunately, because my wife’s best friend (Spoongeek Lissy) has Fibromyalgia, she suggested that I get tested for it. My first thought was, “How can I be so weak that I got a woman’s disease?” But as my doctors were not able to find anything on x-rays, MRI’s, or in my blood work, I figured it was worth a shot. Now I am a veteran so the VA is my medical team. Because of my chronic pain I was in their pain clinic and brought up fibromyalgia there. BOY WHAT A SURPRISE I GOT! In my medical file was a note from my main Doctor and the Rheumatologist, that I “might have Fibromyalgia”! Neither of these Doctors said anything to me about this, but my pain Doctor did the pressure point test and sure enough I got Fibromyalgia, moderate to severe at that! (Note, I now believe that like many Men I waited to long to go see a Doctor and get this checked, maybe I could have caught it sooner before it became so bad.)
Great I have Fibromyalgia! Now what? My emotions of fear, inadequacy, weakness, loss, & anger, led my in a total emotional spiral. I am a United States Marine, how can I not be able just to plow thru this and get well? I was afraid of being alone, being forgotten, being unloved and unwanted, afraid that my Wife would leave me, that I would not be able to provide, for anything. Work? That is almost funny. I was losing one job after the other, even did some Temp jobs that let me go, because I can’t seem to work, or maintain focus enough to complete even the simplest of tasks! My endurance was at best 4 hrs of work per day with a 2-4 hour nap right afterwards because I was just so exhausted!
After a while, the realization that I knew very little about fibromyalgia settled in, so I asked myself what can I do? I knew then that I had to be the Marine and find a way to improvise, adapt and overcome! I don’t deserve to live like this. So I dove in online, in chat groups and more, to figure out the how! This started our first web Vlog series about Invisible Illness, the SpoonGeeks on YouTube, with my Wife Stephanie, our friend Lissy, and I as hosts.
Now, some may say this is a bit warped, but I don’t know what life would be like without the constant exhaustion and pain. Both have become my constant companions, and in the beginning I tried to fight them both and just made them worse. Now that I have some acceptance of them, like family members I don’t like but they are still family. I am learning volumes about fibromyalgia, and other chronic yet invisible illness’s, like Chronic Fatigue, Lupus, Thyroid issues… this list just goes on and on.
On my personal journey to understanding Fibromyalgia, and my, what I call “New Normal” thru many different Fibro groups on Facebook, I learned that so much compassion is out there, not just from others with Fibromyalgia, but friends and family members who do care, and do want me in their lives. I realized that I was still me, I just had to take a smaller bite out of life than I was used to. I understand now after two almost three years of accepting and living with severe Fibromyalgia,
that it is okay to have limits, to say no sometimes, and to say YES to. The pain and exhaustion are always there, so if I go out will I really be more in pain or more exhausted because of it? It’s a chance, but spending time with friends is worth living life again, even if in a smaller way.
I now work a part time job (4-10 hrs per week) with a boss who understands and accepts my limits, my wife is very supportive, as are many of our friends. I Blog and Vlog about Fibromyalgia and specifically MenWithFibromyalgia.com Even though, I sometimes hang on to the belief I am useless and weak, I don’t’ have to take it out on the world, or into the world any more. I can participate in the world on my terms and within my limits, I can accomplish things, It just takes a little longer. I can regain my life, by accepting the “New Normal” of the Me and other Men With Fibromyalgia!
About Norman Hanley:
Norman Lives in Tucson AZ, With his loving Wife Stephanie, their Rescued Beagles Winchester and Luna, as well as their two cats Missy, and Muggins. Along with Fibromyalgia, he has Chronic Fatigue Syndrome, as well as constant chronic pain from his time with the United States Marine Corps, and 2 Motor-vehicle accidents.
He is a Blogger and Vlogger with SpoonGeeks.com, and when he was going to branch out to tell his own story from a man’s viewpoint of Fibromyalgia, many other men from Facebook groups wanted to do the same. So Norman started Men With Fibromyalgia as a place for Men, Spouses and family members can share their stories and experiences, with others in the hope of spreading not only awareness of this devastating disease, but in the hope that a cure will be found!