My name is Norman and I have Fibromyalgia.
What is a day in the life of a fibromite look like?
A day of fibromyalgia, can change from day to day. One day I may be in low pain, but have no energy, to the point I can take care of my basic needs, and maybe some house chores. The next could be a low pain and good energy, where I can do basic house chores and extra tasks around the yard. Or I could have a day of high pain & low energy, when I can barely take care of even the most basic of tasks. To add to this, of the 3 types of day, I could be having a good day with low pain, high energy, then it turns on me to a high pain and low energy day.
Who is on your support team?
My support team starts with my beautiful Wife Stephanie, followed by Luna my service/nurse dog, and her team of Winchester, Kimber and the puppycat Muggins. Also the team of the SAZVAHCS Ironwood Pain clinic.
What do you do to help your fibromite?
My Wife Stephanie also has Fibromyalgia, fortunately to a lesser symptom degree to mine. However there are days when I am in a flare, where I have to push my pain aside and become the caregiver. As a house husband I do my best to keep the daily chores upto date, have meals prepared, and keep it as simple as possible for her when she comes home from work.
How has your life been affected?
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! So here I will get long. Starting with the ok, bad, ugly, to my road towards better health and some recovery.
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.
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 five, almost six 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.
How do you approach the treatment of fibromyalgia?</strong
Treating Fibromyalgia, I am learning is like pealing an onion. There may be and probably are other underlying conditions that have been overlooked because of the fibromyalgia Diagnosis. So when it comes to treatment, I always look at all other known conditions, as improving overall health will help with the fibro symptoms. Also I research new treatment options, as well as other possible Co-Morbid conditions that I can be tested for.
I Know that in living with CFS/ME, Degenerative Disk Disease, Rheumatoid Arthritis, Migranes, Fibro, etc ad nausiumn, that I did not get all these conditions overnight. Some are due to lifestyle (IE Hard Training as a Marine), some due to lack of self care, and some just happened. But not overnight. So like the increase in pain and fibromyalgia symptoms over time, it will take time in finding the right treatments, to treat my overall health, to allow my body to help heal, and return to 50%, 60% … 100% of normal. I know I may never get back to 100%, but I do know, in being willing to become my own best advocate, researching different treatments, lifestyle changes, and in general taking charge of my health and health care, that I CAN AND WILL get to at least 50% of where my mind and body once was.
How has fibro made a positive impact on your life?
Without Fibromyalgia, I would never have become an online advocate, I would not understand about self care. I would not have had this opportunity, like Job in the Bible, to grow my faith thru illness, and in so doing become a blessing to so many others. When I first posted my Fibro story in a FB Mens fibro group in 2014, there were 75 members. All wanted me to help tell their stories, that was when MenWithFibromyalgia.com was born. That same Men’s only group, of which I am now the head admin, has over 2000 members, our FB page has 1800 followers.
I am humbled and amazed daily at how much people look for my posts, and when I do not check in for a day or two, reach out just to make sure I am ok.
Fibromyalgia has exposed my fair weather friends, and brought to my new Family that not only support, but stand beside me, thru all things. Good and Bad.