The True Invisiblity of Fibromyalgia

Fibromyalgia is called an invisible illness because you can't see it on someone. Unless I tell you, there is no way to tell I have fibro. I am learning more and more about this mysterious brain illness with each day. There is so much that a brain that doesn't function properly affects. In fact, the name was officially changed to FMS, fibromyalgia syndrome, because syndrome more clearly describes the broad spectrum of symptoms & diagnosis that accompany fibro than the term disease. I am sure I have much more to learn...a lifetime more to learn.

My most recent discovery is how many things, especially people, have become invisible to me.
I have always been most bothered by the brain fog or fibro fog. I have a few people, my safe people, who I don't mind knowing I have no idea what is going on or acknowledging that I need help thinking with. But in general, it bothers me to forget things...all the time. Easy words escape me. I stutter now. I can't follow conversations well. I think more slowly. Drives me crazy! This fog also causes me to not see or hear things...for a few reasons, I think.

First, sometimes a task takes so much energy that I have to focus hard and push through fatigue and pain to complete it. I don't mean something hard. I can break a sweat walking from my bed to the bathroom some days. Folding laundry feels like running a marathon.
Second, pain is distracting. For me, pain is a constant. I can't remember a day that I have been completely pain free in months. I have hours without pain but not whole days.
Third, I can't remember people's names. I don't mean random people that I met once or twice. I mean people I've known for years. I absolutely hate that.
Fourth, talking takes energy. See my first point for why that complicates things.

Let me put this all together for you in the context that I hate it most. Church. My people. My FAVORITE people.
On a typical Sunday morning, I wake up and start the getting ready process. I almost always mess this up somehow...today I washed my face three times because I kept forgetting I'd already done it. If my make-up looks weird, now you know why. I probably forgot a step or did something multiple times. By the time I am ready, we are usually late and I need a nap. If I have remembered to take my meds, I have an upset stomach. That is how I arrive at church. To get to my Sunday School class, I have to walk from my car up the stairs while carrying stuff. That is a real hike for me...especially if I already need a nap. If we meet on the way, I might not see you. The true invisibility of fibro. My Sunday school class is awesome! It refreshes me spiritually, but doesn't last long enough to give my body a rest. It is also a LOOOOOONG way from the sanctuary. Walking from my class to the sanctuary, I might not see you....if I do, adding trying to remember a name and talk might be more than I am capable of...I hate that. The true invisibility of fibro. The morning continues on...I think you get the picture.

Some things about fibro I have accepted well. This isn't one of them. I need my people. I wonder if you knew I wanted to say hi...or ask about your life. Let me sit down, take a few deep breaths and I will stutter through a conversation with you. Will you be safe for me to really be me with? I promise I will be safe for you.

another peek into my life with fibromyalgia

 Troy found this for me on a blog called Fibro Relief. It is completely, scary accurate.

I’m not taking credit for this letter, I did not write it, I found it online and sent it to everyone I know to help them understand what I was going through. I wish I knew who did write it, I would love to give them the credit here on my blog! (If anyone knows, please let me know and I’ll be more than happy to post the credit!)

A LETTER FROM FIBROMYALGIA

Dear Miserable Human Being,

Hi, my name is Fibromyalgia, and I’m an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.) Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn’t ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me. I’m ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you’ll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You’ll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you’re just having a bad day”, or “Well, remember, you can’t expect to do the things you used to do 20 years ago,” not hearing that you said “20 DAYS ago”! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can’t remember what you were going to say next!

In closing, you’ve probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People with Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.

Remember, I’m stuck to you like Velcro – and I expect we’ll be together for the rest of your life.

Have a nice day!! (ROFL),

10 best things about Fibromyalgia

(from Zazzle.com amazing website of super cool products)

1. I save money on magazines. With brain fog, I can’t remember what I just read!
2. I am a cheap date. No alcohol, no dessert and I still feel drunk or hungover.
3. On ‘good day’s I feel wonderful. Other people need a much better day to feel that way.
4. I am easy to find…I’m either at the Dr’s office or at home.
5. I never have to make my bed because I’ll probably be right back in it.
6. I have acquired a great lounging/sleeping wardbrobe. I rarely get dressed as nobody ever sees me.
7. Disequilibrium saves money on amusement parks. I get the same sensations every time I stand up!
8. I feel smarter than my Doctors…all they say is ‘I don’t know’
9. With short-term memory impairment I can hide my own Easter eggs and Christmas presents.

trials of many kinds...

In May, I was diagnosed with fibromyalgia.

The benefit of hindsight tells me that I have been dealing with symptoms for as many as three years or more...not understanding that seemingly unrelated annoyances, like hip pain or anxiety, were all pointing in the same direction. In January, Troy and I decided it was time to figure out what was going on...my symptoms were increasing in severity and I kept telling Troy I think there is something wrong with me. Those four months were spent in doctor's offices, sometimes having as many as four appointments in a week. They were also spent in uncertainty. It was a beautiful opportunity to exercise my faith...to consider a new kind of trial joy.

Did you know that nearly ten million Americans have been diagnosed with fibromyalgia? Chances are I am not the only one you know suffering from what is described in Medical News Today as a severely debilitating affliction characterized by widespread deep tissue pain, tenderness in the hands and feet, fatigue, sleep disorders and cognitive decline.

It has been an interesting challenge to learn how to live with an illness that affects nearly every part of my life and even more challenging to explain it.

I get tired now doing the smallest of tasks. Sometimes getting ready for my day so exhausts me that I need a nap. Earlier this week, talking on the phone for no more than 5 minutes drained all the energy from my body. I get frustrated at times when standing and singing in worship require more energy than I have.

Pain is a constant companion. I seem to rotate through seasons with which body part will hurt. Currently, my arms and hands seem to be most affected.

Most troubling is the cognitive difficulties that I experience. Anxiety was one of my earliest symptoms increasing in severity as time went on. I often have problems thinking clearly especially the earlier in the morning or later in the evening it becomes. I sometimes get words jumbled or misspeak...even stutter. Conversations are difficult because I can forget what we are discussing in the middle of a sentence...or not be able to follow the flow a conversation takes. Unfortunately, this makes me even more introverted than I already am...which is is almost hard to imagine.

God has chosen to make Himself completely known on my journey thus far, and I am so grateful.

God, in His sweet sovereignty, moved me into the perfect job at just the right moment. It is part time...which is certainly all I could handle. My coworkers are absolutely wonderful. My tasks are challenging and fun. My job is such a joy.

Jesus prepared Troy's heart. My husband has filled every gap that my limitations create in our home with a servant's heart and loving attitude. He is so supportive and kind. His tenderness is clearly God given and his willingness to serve me in my illness blesses me daily.

God is teaching my children about His purposes and plans for our lives and how they aren't always what we might choose, but they are always good.

Jesus is showing me His faithfulness and teaching me how precious and necessary it is to depend on Him. There have been nights when I have driven to Bible study in tears because I cannot rub two coherent thoughts together begging Him to lead through me. He always does. He shows me that His grace really is sufficient and He has provided every bit of mercy I will need...His thoughts are better than mine any day.

Jesus meets me in the middle of the night when I cannot sleep but know my body needs to rest. We spend precious moments together discussing the day to come, loved ones and how good He is to me. There are some nights when sleep robs me of this intimate time, but I praise Him for that much needed relief as well.

God brought a crazy dog into our family to provide distraction and companionship. Lily doesn't care if I stutter or forget what I was saying as long as I rub her belly!

God chose an exciting time in medical research about fibromyalgia for me to be diagnosed. Just last month, researchers were finally able to determine the biological cause of the disease which will lead to medicines that actually treat fibromyalgia and not just the symptoms. Hopefully, this research is also the beginning of finding a cure!

Jesus is teaching me to rest and focusing His call to ministry for me. He is making it clear where He wants me to serve and providing for any gaps. In rest, He is teaching me to seek Him. Our time together has been more rich and abundant than I can ever remember.

I thank Him for the good days and praise Him on the bad days. I am asking Him to give me wisdom in how I spend the energy and feel good that I have each day. I have learned that there is a balancing act I must participate in to have more good days. On those days when I feel energized and like I can take on the world, I must restrain my enthusiasm and pace myself, resting often or I will have more bad days. On those days when I feel weighed down and getting out of bed is a struggle, I must push myself and maintain some activity level or I will have more bad days. I have learned to seize the moment, laugh at myself, live with less and seek Him first.

Debilitating illness.

That is not how I saw the rest of my life...but in the last two months, God has been showing up and showing off big and I can take a lifetime of that.