I have severe
Fibromyalgia (herein referred to as Fm). All of my senses are heightened. It's like they are on DEFCON 5 all the time. Nothing tastes like it used to. I smell things no one else with me can smell. Hugs are limited (I choose when) and you can't just walk up to me and grab me, even if your intent is to help me (you will only hurt me). The only fabric I can tolerate is cotton. I am 53 and I wear tri-focals. My hearing is excellent: I can hear a whispered conversation 5 feet away. This said, any gathering in small rooms is like being shut inside a box with the speakers blaring.
Most of the stuff I learn about Fm is through my own online research as the doctors I have been in contact with are clueless. There are many networks available to share and vent, but since Fm affects us all differently, there is little you can do but trial and error when it comes to taking care of your illness.
That being said, you need to learn or relearn
basic anatomy and internal infrastructure. I think the first thing any of us need to learn, before we learned to read and write, is how our body works. So we won't be alarmed by change; that we are not only ready for it, but looking forward to changes. Instead of being filled with panic, anxiety and fear, we should
anticipate with joy the suffering (changes) our bodies go through. Yeah, I know, it sounds crazy. It's true, though, you know.
We plant seeds in their season and anticipate the taste of sweet corn, fresh tomatoes and peppers, strawberries on the vine. Nature fashions their nests and hives. We build houses, fill them with people and create homes. The changes in a woman from child to young lady are visible to all. The changes in a man are not. But he does change. We all know how we felt when it happened to us. Some of just weren't ready. We should have been made aware by the caring adults in our life that we weren't going to stay children and that change was not only inevitable, but a good thing. Just like the changes many of us are going through now.
"I will praise You; for I am fearfully and wonderfully made: marvelous are Your works; and that my soul knows very well." Psalm 139:14
I have had the opportunity to undergo many tests to determine what it is exactly that is causing so many changes at one time in my body. Most of you know the routine: CTs, MRIs, blood work-ups, brain scans. Then there's the psychiatrist (who is either a pill pusher or thinks I am crazy), the psychologist (who thinks I am fine); the neuropsychiatrist (who agrees I don't need her services); the neuropsychologist (who runs cognitive tests to see how my brain syncs), the oncologist (who clears me); the arthritis specialist (who treats me), the family doctor (who refuses to see me any more) who sent me to the orthopedic doctor (but I have no breaks or fractured bones) who referred me to
aquatic therapy, which did not help me.
"Heal me, O LORD, and I shall be healed; save me, and I shall be saved: for You are my Praise." Jeremiah 17:14
I don't cry. I haven't cried in six years. Not since I buried one of my sons. That's change, too. Death affects life. Twenty-one years ago I married the father of my twins and became a stepmom to his 2 kids; six years after that we separated and the following year we divorced. While I was single my relationship with God remarkably increased.
"From the rising of the sun unto the going down of the same the LORD's name is to be praise." Psalm 113:3
Photo by my sister Laura Bavetz, as seen on Capturing My Arizona
During this time many changes took place on all levels of life. And then seven years ago I remarried. He proposed and six months later we were married. My life changed again. Now I had a new husband and stepson; my boys had a stepdad and a new place to live. The following year my son Nick died. And the year after that I my body forgot how to stand up or even walk. Perhaps the trauma of life impacted my body so much that it just broke down. I have offered this as a solution for the stuttering and stopping of speech and thought, but been rejected or referred by so many doctors to so many others, that I have decided to not even broach the subject again. But I still do my own research.
"Greater is He that is in me, than he that is in the world." I John 4:4
Some of the sites I have found helpful are listed below. But mostly, it is the spiritual side of my life that has been the most help to me. It is my friendship with Christ that gives me strength to go on, to persevere with determination the chores He has lined up for me to do. And while each new day brings its own challenges and changes, the day also brings its own rewards.
"My mouth shall speak of wisdom, and the meditation of my heart shall be of understanding." Psalm 49:3
Today, for example, I got 7.5 hours sleep. I fell asleep around 3AM and woke up at 11:25AM. This was restful for me. I would prefer to go to sleep sooner, but this seldom happens. And, no, I do not want to take sleeping pills. I will retrain my body to sleep at a normal time. I eat
foods my body can tolerate. I drink water all day long and have milk with my meals. I take the pain meds the way they are prescribed and do not experiment by taking other peoples' meds; nor do I share mine. I read nutrition
labels.
I am using the Trial and Error method of taking
supplements and
vitamins I am missing in my diet. Before
you do this, you need to
research them. Many supplements, vitamins and
herbs interact with prescription medication. While some reactions are subtle, like a rash, many more are life-threatening: you could stop breathing, give yourself a heart attack or bleed out when you cut or scratch yourself.
The only doctor whose care I am under is the Rheumatoid Arthritis specialist. She diagnosed me with
osteoarthritis and is treating me for that and for the Fm. Right now her only Rx is pain meds. Everything else is up to me. I knew I had
osteoporosis; have had it for a while now. I adapted. To diagnose this the doctor runs a
bone density test to determine the thickness of your bone structure. As I stated previously, I am 53; my skeleton is 80 years old. While the reason is undetermined, I believe it is due to the early hysterectomy I had and the subsequent HRT I was on for five years.
"
I can do all things through Christ Who strengthens me." Philippians 4:13 There is an old hymn which states: "He is my strength from day to day, without Him I would fall". Though the line refers to falling back into sin, I also believe that Jesus keeps me from falling physically. Should I ever fall down again, it will be because God is allowing me to fall down to fulfill His purpose at that time. Yes, it will hurt; I will be in extreme pain. No, I don't want to fall down; I do my best to remain upright and balanced at all times, though I have a tendency to tilt my whole body, not just my head.
Motion is an affirmative action on my part. And yours. Just how much exercise you implement into your daily routine depends on you. I was referred to
The Balance & Wellness Center to gauge my ability to function around the home, my mobility and balance. The results were not only shared with me, but sent back to the arthritis doctor who referred me there. They taught me basic yoga, stretching exercises and some Pilates. These are things I do every day now. I break up the time, though; while there, my sessions lasted 45 minutes; here at home I break the time into 15 minute intervals. If I don't do the whole 45 minutes, I don't stress it either.
If you and I don't take care of ourselves now, someone else will. And, perhaps, not the way we want to be taken care of. That is a change I would prefer not to happen, with or without joy.
In addition to the links scattered throughout the above article, I would also like to include these helpful sites:
Food Substitutions
Living with Pain
Click to Donate Mammograms
Avon Skin-so-Soft Oil
50 Bizarre and Unusual Facts About the Human Body
Not a Wheelchair
Neuropsychology Central
Unsafe Foods Farmers Won't Eat
The Incredible Human Body
Pioneer Thinking
The other blogs I enjoy reading that help me, in addition to the links on the right side of this blog:
Joni and Friends
22 Reasons to Never Give Up
Praise As a Weapon
