2015 Fibromyalgia Awareness Day

FMS-AwarenessDay2015

Tomorrow, May 12th, is designated as Fibromyalgia Awareness Day. There are too many people who live with this disease. I have had to count myself among them since 1999, when I was diagnosed with Fibromyalgia Syndrome (FMS) plus Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)—also known as Chronic Fatigue Syndrome (CFS).

“Fibromyalgia (pronounced fy-bro-my-AL-ja) is a complex chronic pain disorder that affects an estimated 10 million Americans. While it occurs most often in women, it strikes men and children, and all ethnic backgrounds. For those with severe symptoms, fibromyalgia (FM) can be extremely debilitating and interfere with basic daily activities.

  • The FM diagnostic criteria, established by the American College of Rheumatology (ACR) in 1990, includes a history of widespread pain in all four quadrants of the body for a minimum duration of three months, and pain in at least 11 of the 18 designated tender points when a specified amount of pressure is applied.
  • Since people with FM tend to look healthy and conventional tests are typically normal, a physician knowledgeable about the disorder is necessary to make a diagnosis.
  • Physicians should rule out other causes of the symptoms before making a diagnosis of fibromyalgia.”

Read more here.

One of the most distressing things that people with FMS experience is disbelief from family and friends because we mostly look normal, that is, like there’s nothing out-of-the-ordinary wrong with us. The common phrase we hear is, “But you look so good!” I have often replied, “Thank God for makeup” although I seldom wear makeup these days.

The truth is this: My hair may be nicely fixed and I have taken the time to do my eyebrows and apply some lip balm or lip color. I may even put in some earrings if I feel up to it. My hubby frequently compliments me on how good I look.

But most days when I look in the mirror what I see is a tired and wrinkled old hag. Really. Because that’s how I feel inside.

A typical day for me begins with my daily migraine (usually with nausea) and includes extreme pain in joints and ligaments. I often have pain in my chest similar to what a heart attack feels like. But it’s not a heart attack. It’s called Costochondritis and is one of my FMS symptoms. Even though I am used to these episodes, I still wonder every time if this is the day I am having a heart attack.

Stressful? You betcha!

And I haven’t even touched on the debilitating fatigue that is part of both FMS and CFIDS. No matter how much sleep I get, I always—and I mean always—feel like I haven’t slept at all.

I normally wake up between 6:00 and 7:30 a.m. but a couple of hours later I’m already thinking it’s time to get back into bed. Some days I do. Other times I keep pushing myself to get a few things done until lunch time. After lunch I either get back into bed or slide into my recliner for a snooze in front of the TV. Even though Rick is always volunteering to do things for me, I thank him and reply that I need to do as much as I am physically capable of doing, for as long as I am able to do so.

When Rick and I have planned activities such as going out for a meal, meeting up with friends, going to church or even just grocery shopping, I have to prepare myself beforehand with plenty of rest. That doesn’t guarantee that I’ll actually be able to get to any of these planned events, but at least I try. And if I do make it, there’s the payback afterwards—sometimes for days (or weeks), especially if some traveling was part of the activity.

I happen to be blessed with a family and many close friends who do their best to understand all of this. I have had to cancel or reschedule countless activities with them, yet they still stand by me. And for that I am truly blessed. 

Thank you for taking the time to read this and visit the NFMCPA site (National Fibromyalgia & Chronic Pain Association) for more information.

God bless you all!

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No Time to Rest

Today I’d like to talk about physical rest.

I used to be quite the multi-tasker, but then I believe most women are very good at doing more than one thing at a time. It’s the way we’re wired. If we’re not working on at least two things at once, our minds are whirling with thoughts and ideas for what needs doing next. Some nights all those jumbled thoughts keep us from getting to sleep.

Can I get a high five here? Oh, sorry. You probably don’t have a free hand what with having to juggle all those tasks.

I can still remember when I was able to do about five things at the same time and actually wonder what else I could accomplish?

That was then. Fast forward to my “new normal.”

About twelve years ago, after many lab tests and doctors’ visits, I was told that my daily severe all-over pain and mind-numbing fatigue were the result of Fibromyalgia (FMS) and Chronic Fatigue Syndrome (CFS). While I was somewhat relieved to have some kind of a name for what I was going through, my mind refused to believe it. I was only working part-time then—3 days a week for 4 hours a day—but it got to the point where I was spending all  my days off recuperating from working those 4 hours the day before. And I was still a newlywed whose husband was probably wondering what he had gotten into!

Even when I finally quit my job, my mind still refused to wrap itself around the fact that I needed to change my habits. I remember that I quit working around mid-November and then spent the next month sewing Christmas gifts for my friends and family for hours and hours each day. By Christmas I was beyond exhausted and starting to realize I needed to rethink some things.

Easier thought than done.

What is is about resting that many of us have trouble with? Is it because we have never really learned how to rest? Could it be that we need to fill every minute with something because it keeps us from thinking too much? Or maybe we believe we’re worth more if we’re producing some kind of work all the time?

Chalk up that last one for me.

Except for a few years when my children were very young and a sabbatical in 1996, I had worked my whole adult life. When I was forced to stop working in 2000, I felt… worthless. I had always seen myself as proficient, reliable, hard-working—you know, a “can-do” kind of person. Someone everyone could always count on.

And that’s exactly when the Lord showed me that instead of relying on Him, I was relying on my own strength. And guess what? That strength was gone.

Beloved, maybe you see yourself in one or more of these scenarios. It’s okay. You can admit it.

Even though I was in denial for many years about this, I finally get it.  Where before I could easily clean my entire house in a couple of hours, these days my house is never completely clean because I can only do one thing at a time and then I need to rest. I’m talking about sweeping the floor one day and wet mopping it the next (or the next) day, depending on how I’m feeling. Some days the only thing I can accomplish is nuking something for dinner.

And that’s okay!

My hubby is fond of quoting a line from a M*A*S*H episode to help me slow down:

“I do one thing at a time and I do it well.”

Next time we’ll talk about how physical rest goes hand-in-hand with emotional rest. For now, I’d like to remind you of this truth:

Praying for all of you…

http://www.whatchristianswanttoknow.com/bible-verses-about-rest-20-important-scriptures/

My Hair Hurts!

I couldn’t believe it when I found this image at A New Kind of Normal. Jamee lives with multiple chronic illnesses so she understands the sentiment in this image.

I can’t tell you how often I have said that my hair hurts, or have had to change clothes because seams and tags cause extreme itchiness and sometimes even pain. I have cut the tags out of most of my clothing and am thankful for the companies which are now imprinting clothing with the information in lieu of a tag.

These are just a couple of my symptoms of my Fibromyalgia Syndrome (FMS) and Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Oh, and let’s not forget the chronic migraines that are liberally sprinkled in with everything else.

Next week is National Invisible Chronic Illness Awareness Week. Please check out the Invisible Disabilities site to find out more about what’s going on next week, or just to learn more about chronic illnesses that seem invisible to others but are very real to those of us who struggle with one or multiple of these illnesses every single day.

Apparently this flareup I’ve been going through has affected me more than I realized because I thought I had already composed this post and scheduled it for today but I had only started it, typing in only a few lines before laying it aside several weeks ago. But that’s the way my body works in these “new normal” days. As I type this, I am struggling for each word so I guess it’s time to stop typing and publish this.

Before I go, though, I want to keep it real by saying that throughout my many struggles with these chronic illnesses, I have many days where despair threatens to take over. Sometimes it does. But most times I can think clearly enough to remember that I have a Hope that doesn’t quit and never fails me:

But those who hope in the Lord will renew their strength.
They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. —Isaiah 40:31

Beloved, no matter what you’re going through, hold on tight to that Hope! One day all pain and suffering will be erased for those who believe in the mighty and saving power of the Hope of the world: our Lord Jesus Christ! Those who trust in His saving grace will be able to live pain-free for eternity. The physical pain we feel now is nothing compared to the extreme joy we will experience in our heavenly homes.

To find out more about the saving power of Jesus Christ, please read this or contact me. I would be so happy to answer your questions!

In His powerful and comforting grip,

Recovery Mode

Reblogged from October 22, 2011: an ongoing issue for me in my new normal…

CRASH AND BURN

It has been a very busy week for me and I’m grateful I was able to do everything I did, but… now I’m going through the crash and burn phase—what I call my payback days. Living with multiple chronic illnesses is no picnic. It’s very discouraging to look around the house and see everything that needs doing but only being able to do the minimum to keep up. I try hard not to think back on how much I used to be able to do, seemingly simple things like cleaning my whole house in one morning.

Those days are long gone.

Now I can only do one thing, such as dusting one room, and then have to stop and rest for awhile before doing anything else. And quite often, dusting that one room is the only task I am able to accomplish that day.

Take something as enjoyable as having company. Rick and I have friends over for coffee on Thursday mornings, and I love my time with these close friends whom we call “family.” But when everyone leaves, I suddenly realize I am wiped out! If the migraine I woke up with hasn’t completely left me, then it feels horrible by that point because of all the talking and laughing during that sweet fellowship. I wonder if that’s what the phrase “hurts so good” means—well, maybe not.

To this “get it all done now” turned “maybe tomorrow” person, it has been a slow process. From denial to frustration to understanding and finally to acceptance, this journey has not been easy. However, I’ve learned some things that work for me:

  1. Accept what you can do and don’t worry about the rest — it will eventually get done.
  2. Make yourself rest often, even if you don’t think you need it at the time. If you’re like me, your mind wants you to keep on going (like that Energizer bunny) even when your body tells you to stop.
  3. Enlist help from your spouse and children for tasks that are too difficult or time-consuming for your energy levels.
  4. Find things to do that you enjoy but won’t add to your pain burden. I can still write, something that fills me with joy, but I’ve learned I have to pace myself  because I could easily go on for hours! I have also discovered how much I enjoy crocheting, especially for others. This keeps me busy, makes me feel productive, and moves the focus from me and my pain to whomever I’m crocheting for at the time. And I have always loved to read and lose myself in a good book.
  5. Be thankful for what you are still able to do, even if it is something as simple as making coffee.

Every so often when I do get out with Rick for coffee or a meal out or to get together with friends, someone will ask how I’m doing that day. My response? “I’m here!” I think that short and sweet statement says it all.

Fibromyalgia Awareness Day

Today, May 12th, is designated as Fibromyalgia Awareness Day. There are too many people who live with this disease. I have had to count myself among them since 1999, when I was diagnosed with Fibromyalgia Syndrome (FMS) plus Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)—also known as Chronic Fatigue Syndrome (CFS).

“Fibromyalgia (pronounced fy-bro-my-AL-ja) is a complex chronic pain disorder that affects an estimated 10 million Americans. While it occurs most often in women, it strikes men and children, and all ethnic backgrounds. For those with severe symptoms, fibromyalgia (FM) can be extremely debilitating and interfere with basic daily activities.

  • The FM diagnostic criteria, established by the American College of Rheumatology (ACR) in 1990, includes a history of widespread pain in all four quadrants of the body for a minimum duration of three months, and pain in at least 11 of the 18 designated tender points when a specified amount of pressure is applied.
  • Since people with FM tend to look healthy and conventional tests are typically normal, a physician knowledgeable about the disorder is necessary to make a diagnosis.
  • Physicians should rule out other causes of the symptoms before making a diagnosis of fibromyalgia.”

Read more here.

One of the most distressing things that people with FMS experience is disbelief from family and friends because we mostly look normal, that is, like there’s nothing out-of-the-ordinary wrong with us. The common phrase we hear is, “But you look so good!” I have often replied, “Thank God for makeup!”

The truth is this: My hair may be nicely fixed and I have taken the time to do my eyebrows and apply some lip color. I may even put in some earrings if I feel up to it. My hubby frequently compliments me on how good I look. But most days when I look in the mirror what I see is a tired and wrinkled old hag. Really. Because that’s how I feel inside.

A typical day for me begins with my daily migraine (usually with nausea) and includes extreme pain in joints and ligaments. I often have pain in my chest similar to what a heart attack feels like. But it’s not a heart attack. It’s called Costochondritis. Even though I am used to these episodes, I still wonder every time if this is the day I am having a heart attack.

Stressful? You betcha!

And I haven’t even touched on the debilitating fatigue that is part of both FMS and CFIDS. No matter how much sleep I get, I always—and I mean always—feel like I haven’t slept at all.

I normally wake up between 6:00 and 7:30 a.m. but a couple of hours later I’m already thinking it’s time to get back into bed. Some days I do. Other times I keep pushing myself to get a few household chores done until lunch time. After lunch I either get back into bed or slide into my recliner for a snooze in front of the TV. Even though Rick is always volunteering to do things for me, I thank him and reply that I need to do as much as I am physically capable of doing, for as long as I am able to. It is important to me to at least try to keep things up around the house.

When Rick and I have planned activities such as going out for a meal, meeting up with friends, going to church or even just shopping, I have to prepare myself beforehand with plenty of rest. That doesn’t guarantee that I’ll actually be able to get to any of these planned events, but I at least try. And if I do make it, there’s the payback afterwards—sometimes for days (or weeks), especially if some traveling was part of the activity.

I happen to be blessed with a family and many close friends who do their best to understand all of this. I have had to cancel or reschedule countless activities with them, yet they still stand by me. And for that I am truly blessed.

As a matter of fact, I almost was not able to travel to Phoenix to be with my children on this Mother’s Day weekend. I have been struggling with bronchitis and a sinus infection that just wouldn’t let up. And the antibiotics have wreaked havoc on my digestive system. It has been a very difficult time for me and I often wondered if I would have to cancel this trip. So I handed it all over to my Lord and as I prayed about it I decided to just pack anyway. I figured it wouldn’t take that long to unpack if need be.

And the Lord was gracious to me so here I am with my children as I had hoped.

The Family & Friends Pledge to Care below is meant to be shared with others who may not “get it” and that is very understandable. There is way too much about FMS and CFIDS that even the medical profession doesn’t understand. And if they don’t see these as real diseases, how can we hope for some kind of a cure? Or at least find out what the cause is.

Read more about the Family & Friends Pledge to Care at
http://www.fmcpaware.org/family-friends-pledge-to-care

Thank you for taking the time to read this and visit The National Fibromyalgia & Chronic Pain Association’s site for more information.

God bless you all!