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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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!

Everything New

Things have seemed to get away from me lately. I’ve been dealing with a CFIDS flare for several weeks … in waves. Yesterday was another day of nauseous migraines on top of this flare, and last night I caught myself sighing in frustration as another wave of nausea joined the pounding in my head. Not again!

When I’m in a CFIDS flare, my entire body aches as if a huge semi is driving back and forth over me. When I’m feeling like this, I often wonder if I will ever feel normal again.

So, what is “normal” anyway? About 20 years ago, normal for me meant working 50 to 60 hours (sometimes more) each week while still taking care of a big house, carting my children to and from their activities, and exercising at least 5 days per week. These days what I call my “new normal” involves getting plenty of rest and monitoring my daily activities so that I don’t overdo.

I once heard a friend say that normal is just a setting on the clothes dryer. Did that ever put things in perspective for me! It helped me understand that normal is different for each one of us. Some people work Monday through Friday at a “9 to 5” job; others work nights. Many drive cars while there are those who ride motorcycles. Some individuals hardly ever smile, but there are also many people who smile no matter what is happening in their lives, good or bad.

Today I feel somewhere between the green smiley face and the red one, but no worries. I am still thankful that the God of all creation has made us a wonderful promise in this Scripture verse:

He who was seated on the throne said, ‘ I am making everything new!’ Then he said, ‘Write this down, for these words are trustworthy and true.’ —Rev 21:4

Some day we will be with Him in a new body completely free of pain. Everything will be new!

God is Trustworthy

HAPPY SUNDAY

This is a great sign that pretty much sums up this last week for me. In the midst of difficult, quiet and painful moments, I am thankful for a couple of happy moments.

As I shared in yesterday’s post, I am in the middle of a CFIDS flare that is the worst I have ever experienced. My head feels twice its size and on the verge of blowing up. And the nausea! It just overwhelms me. I’m glad I don’t mind drinking plain old seltzer water because that seems to be the only drink I can tolerate, besides water.

However, on this Happy Sunday I am choosing to be happy while patiently (and yes, sometimes impatiently) waiting for this troublesome time to pass. Why? Because during every one of these moments, no matter how painful, I have still felt God close by.

I’m thinking that without Him holding me during these tough times, I’d be a complete train wreck!

You will keep him in perfect peace whose mind is stayed on You, because he trusts in You. —Isaiah 26:3