Drawing on my experience as the adopted infant daughter raised by two wheelchair bound parents, I write inspirational and humorous true stories from childhood. I also share my own survival experiences while coping with multiple chronic illnesses. Coming from a family of survivors, I hope that as you read my stories, you will laugh a lot, cry a little, but always come away with something positive. I've only scratched the surface of telling true stories of a very unique life!
At any moment of any given day I can go online and find support groups for any illness or cause. There are MILLIONS of them. Chances are, each one I will find has all kinds of artwork, clever sayings and symbols that will direct me to take a look at any issue at hand. If the cause you are trying to bring to the public’s attention is complex and difficult to understand, it’s even more difficult to raise awareness and bring attention to your cause that is positive and productive.
Fibromyalgia Awareness is one of those very complex causes. Because no two patients have the same exact symptoms and FMS symptoms are so numerous and vary so much in intensity, I often describe FMS patients, treatments and the impact on their lives to be as unique as a fingerprint.
Not long ago, I happened to come across a comment under a piece of artwork supporting Fibromyalgia Awareness. This is what was stated:
All of us with Fibromyalgia are aware of what we go through. It's the rest of you who need to learn about how we suffer on a daily basis.
As I read this comment, something about it bugged me. I mean it really unsettled me and I wasn’t sure why. Was it that the statement was somewhat defensive or accusatory? Was I feeling anger? Sadness? Confusion? I was so unsure! I couldn’t figure it out!
I don’t mean to be judgmental of the writer. The writer had their reasons and feelings for phrasing this statement in this manner. There is no right or wrong in the statement. We are all entitled to our opinions and our feelings. Feelings are never “wrong”, they are just feelings. Emotion. It’s what we DO with those feelings that can be considered appropriate or inappropriate behavior.
One could ask themselves: “Whom was the writer referring to when they stated the rest of you?” Obviously it meant everyone without FMS, but could it be a family member who hurt them? A friend lost because of the impact of the disease? A spouse who left them behind?
Then I found myself asking another question: “What was the writer trying to accomplish?” If it was awareness, it wasn’t going to be received well. So perhaps they were not trying to accomplish anything. Maybe the writer was just hurting and this was the only way they could express themselves at that time.
As I sat pondering all these questions, the original feeling I had kept pestering me. Why does this statement bother me so much? It was literally driving me nuts. No, I’m not obsessive compulsive, but this was really getting to me. Then it hit me.
I lived in silence for a period of time after being diagnosed. I tried to hide my illness and live a normal life. But the problem was I tried to live the life I had before my wreck. I was trying to be just like everyone else. But I wasn’t like everyone else anymore. I was no longer a member of the “Healthy People Society” or as I have come to call it, the HPS. I use that acronym because it fits so many different circumstances and still applies. For example, I’ve encountered the “Haughty People Society”, the “Hurtful People Society” and the “Hopelessly Pathetically Selfish.” That’s just for starters. I’ve had many different encounters with HPS’s when it comes to my disease.
It is a fact that FMS patients live with chronic pain every day. If it isn’t pain, it may be the relentless fatigue, or migraines, or nausea, or IBS, or sleep deprivation, or severe depression, even panic attacks and medication sensitivities. All these different symptoms combine to make a very difficult disease even more difficult to manage. My point being it’s always something, and its always every day.
It was clear after my diagnosis that the days of “just push through the pain and do it” were forever gone. I can push to a degree, but not without paying for it later. Instead of pushing through the pain, I would have times where I was forced to change my plans at a moments notice. Specifically, changing plans at the most inconvenient, embarrassing, once in a lifetime or turn on a dime moments. Maybe it’s a migraine attack, or any one of the numerous other sister conditions that this disease brings with it. Whatever the source may be, rest assured, if the conditions at that moment is bad enough that I have to change plans, it means I stop and rest or I risk being laid out on the pavement.
It took a long time to wrap my head around that fact. I grieved and hid from the world for awhile, just so I could avoid being put in that position. I was so depressed and lost I shut myself away for 2 years and told myself it was safer than putting myself out there for the world to reject.
But then I realized, unless they find a cure, I’m going to have this disease for the rest of my life. Is this how I decide to handle it? Me. The daughter of the most independent paraplegic anyone could have the honor to meet. The guy who rather than miss a day of work, drove my sisters car using a crutch to work the gas and brake pedals when his handicapped equipped vehicle was in the shop for repair. Possibly the most determined man I’ve ever known. Would his daughter become known as a “VICTIM”!?!
NO! TOTALLY AND UTTERLY UNACCEPTABLE!
Things would simply have to change in my life.
Now, I’m sympathetic to the writer of the original statement. I’ve felt the bitterness of lost friends and the rejection of people I wanted to share time with, but because of a form of HPS the relationships could not survive. I’ve experienced feelings of not being “good enough.” I’ve grieved HARD over the loss of my career and the hopes and dreams that I had planned to enjoy at this stage in my life.
Used by Permission of Artist/Writer: Manuela McPhee
FMS certainly wasn’t part of my midlife crisis! I was suppose to enjoy the freedom of having grown kids! Or deal with empty nest syndrome, or share time with my sons and their girlfriends so I would be prepared for the day my boys would marry and have children of their own. I wanted to travel with my husband. Just the two of us!
It was very clear that unless I made those near to me aware of my disease, I would continue to have problems maintaining relationships and I would continue to be lonely. Which gets back to the subject at hand. What bothered me about that statement?
THIS:
"The implication that those with FMS are DOOMED to SUFFER the rest of their lives as HELPLESS VICTIMS."
I completely and totally disagree with that conclusion with every fiber of my being! This simple fact remains:
"If we do nothing.....nothing will be the result!"
My fellow FMS Survivors, how will the world ever understand us if we do not show them courage and strength in the face of chronic illnesses and devastating pain? No one listens to whiners and victims, but they WILL stand up and take notice of those who survive the pain with dignity and grace. Choose to be a survivor and never let the pain define who you are! We have a gracious and loving GOD. He will give you the courage you need to endure. This is one of my favorite passages:
"I know the plans I have for you," declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future." Jer. 29:11
In closing, this video is my story of how I eventually rebounded and fought my way back to a new life by God’s Grace. This was my childhood dream. I had never pursued it as I never had the time or gave myself the permission. Had I not been afflicted with this disease, I might never have pursued this dream and had such wonderful experiences with Filly.
Today I want to take a moment to discuss an issue that affects a lot of people that suffer with FMS and other disabling conditions. Before I get to that, I want to share a little of my story with you.
Prior to my car accident and being diagnosed with FMS, I was working 40 + hours a week and was the major bread winner for my family of 5. My day started at 6:00 AM with taking the kids to the sitter and driving 45 minutes to my job. After working a full day, I would return to pick up my children, drive home, make supper, clean up the dishes, spend some quality time with the boys, bathe them and tuck them into bed. The weekends I did the major house cleaning, yard work, tended to the flowerbeds and washed the car inside and out.
My oldest boys are one year and one week apart so they played baseball on the same team. I NEVER missed one of their games. Even after all that, I managed to sing in the choir and play a musical instrument during the service once or twice a month. I look back at those days with a lot of joy and happy memories. Although I was tired, it was nothing like what I experience with the FMS. Now that I have this disease, I’ve given up a lot of things I once completed with relative ease.
I went through a long grieving period of the life that was lost to me because of FMS. BUT, that doesn’t mean my life was over, it just had to change and I had to adapt. Not to mention, my disability check is a fraction of what I use to make. Now, I’m still one of the very blessed few. My husband has a great job and is able to support us with his income alone. He does have some health issues of his own and that frightens me on several levels.
I love him and don’t want to be without him.
If I were to lose him, I would lose everything, my home, cars, everything material.
It can be terrifying at times. We have life insurance, but that would only go so far. So, I try to live each day to the fullest by cherishing every moment; however, when I’m having a severe migraine or a bad flare all these worries really get to me.
What I have learned is that I must trust in God to provide for my daily bread and to take things one step at a time. Some Fibromyalgia patients have more severe cases than others and I feel for those who are suffering or confined to wheelchairs due to their pain. But I have faith that should something happen to my husband, God would provide another way for me to care for myself and my boys. So, what I want to say to you is this: Don’t give up. You have a future and God will reveal it to you when the time is right. In the meantime take things one day at a time and trust in His plan for you. Continue to work with your doctor until you find the right mix of medication and therapy. Remember, no matter how bad your situation is, the sun will still come up in the morning! Never quit trying and never give in. Good luck and many blessings to you all!
Hello Cruel World! Just kidding, welcome to my first personal blog!
Today I want to talk a little bit about unseen illnesses. The people closest to me know that I suffer from severe chronic migraines and severe Fibromyalgia. When I was 34, I was in a really bad car accident that resulted in neck surgery. I now live with a titanium plate in my neck to help support the vertebrae that were fused together as a result of damage from the impact. I recovered from the accident just fine, but then about a year later I noticed a sharp increase in my migraines and a lot of all over body pain and severe fatigue. I went to my doctor and after extensive testing was diagnosed with Fibromyalgia.
Many people don't know what Fibromyalgia is and because it isn't something you can see like an amputated leg or a disfiguring injury, people won't know that you have it unless you tell them. What I have found is that the fatigue and pain slows me down so much that it does get mistaken for laziness or a lack of drive, which is both unfortunate and unfair. I have good days and bad days. On my good days I can function for a short period of time almost as normal as everyone else. On bad days I may not even be able to get out of bed.
On the up side, I try to make the most of each day and on my good days I thank God and treat them as precious moments. They are making advances all the time in the treatment of this unfortunate disease and it is my hope that someday they will find a cure. At the moment, there is no cure. You treat the symptoms and hope for the best. I think my biggest peeve is when someone says, "If I can do it, I don't see why you can't." Well world it's like this. If I only get three hours of sleep or push my body past my personal limits, I can end up hospitalized. Or at the very least in bed for a day or two, perhaps weeks, and maybe even have to take a steroid dose pack to control the pain and regain my ground. Everyone has limits and we need to respect those differences. God did not pull out the cookie cutter from his kitchen drawer when He created man and woman. Not everyone was made the same and we all struggle with different problems, be them physical, mental or family issues, we all have hardships! A healthy friendship is based on respect. Without that respect, the friendship cannot flourish and grow deeper. So before you judge someone because they cannot do what you do, perhaps you should ask yourself if there is more to the situation than meets the eye.
So my quote for the day is from the Bible. "Love one another as I have loved you." The next time you open your mouth to say something about another person, first ask yourself: "Do I know what is really going on in this person's life? Am I being overly critical? What is the benefit of my comment? Am I lifting this person up or tearing them down? Is it possible that I feel that I am better than this person and by stepping on their feelings, I affirm myself?" Hmmm…..food for thought. I hope the right choice is made for the benefit of everyone involved.
Please note that this short story is copyrighted and should not be reprinted in any form without permission from the author Feel free to link to “Bobbie’s World Blog’s”
