Tuesday Tip – The Good Days

When I first became ill, over 16 years ago, I rarely had “good days”. I’m not sure if that pattern is the same for everyone, but CFS hit me like a brick wall and was unrelenting for about 18 months. As time went by, I learned more about my body and how to handle the exhaustive list of symptoms. I learned little tricks and helps along the way that has allowed me to live a full (not symptom free) life. I am ever so grateful for that! I can’t control this illness, but I do know that stress makes it worse. So, I am constantly in a state of stress prevention and energy preservation. Anyone else live like this? It’s kind of a necessity and mentally exhausting. Although this can be helpful in preventing flares, sometimes it just takes away all the fun.

The Good Days. Ah, the good days. They come few and far between, but do you ever have them? These are the glorious days where you actually feel “normal”. No pain, no fatigue, no digestive trouble or aching muscles. No headaches, muscle weakness, ears ringing, brain fog, or insomnia. No dizziness, light headedness, nausea, depression or anxiety. Just normal. Just like everyone else, normal. When these days come, instead of fully appreciating them, I sometimes allow them to make me mad. Crazy, right? Why would I waste energy on being upset? Well, because it is these days that make me realize how sick I really am. When I get a taste of the energy levels that most normal people have everyday, I become envious. I can’t even imagine feeling like this everyday!!!! Oh, the things I could do! Still working on these feelings….

Anyway, this tip is about how to handle those good days. I used to live in such a state of stress prevention that I was afraid to expend energy on the good days, because I was scared that if I overdid it, I would pay dearly for it. I am a very cautious person by nature. This strategy of living is necessary when living with cfs and fibro, BUT I have also found that when the rare good day comes, I should TAKE ADVANTAGE!!! Get up and go and do and enjoy! You can’t predict when the bad days will come, maybe they will come because you overdid it, but maybe they’ll come just because. When you have some energy, my advice is to go and do. Don’t be as freakishly cautious as I have been. I am learning. Always learning. And this is one thing that I recently have come to enjoy. Not worrying so much about tomorrow’s consequences and enjoying my life today. Any kind of energy when dealing with these syndromes is pure BLESSING! 🙂

When the really good day strikes, and hopefully you occasionally get those days, go get that room painted, or shop all day, or bake dozens of cookies, or socialize with loved ones, or spring clean, or work on a project, or stay up late, or do whatever it is that you dream of having the energy to do! Enjoy it and then when the bad days come you can remind yourself that a good day just might be right around the corner. And that just may be the only thing that can get you through your day!

Blessings, friends!

-Ann

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Peace, Be Still

My Inspiration:

Then He arose and rebuked the wind, and said to the sea, “Peace, be still!” And the wind ceased and there was a great calm. But He said to them, “Why are you so fearful? How is it that you have no faith?” And they feared exceedingly, and said to one another, “Who can this be, that even the wind and the sea obey Him!”
Matthew 4:39-41

My Thoughts:

What brings you peace? In a physical sense. What do you like to do that makes your body feel peaceful, relaxed, and tranquil? A massage? A nap? A good book? A nature walk? And does finding physical peace bring peace to your soul? For me it does! Putting myself in a position where my surroundings are peaceful, brings a peace to my heart and mind. An ability to think clearly, meditate, pray, or express gratefulness. To weed out the stresses and worries of life and bring a renewed focus on the things that are important.

Most of the time physical peace, for me, is silence. Pure, sweet silence. I crave it. (Kids are noisy!) Other times, I long for nature. Walking on a dirt road in the forest, sitting on top of a mountain and enjoying the view, watching the sunset at the beach or overlooking a field covered in fresh, white snow. Just the thought of doing these things make me feel more peaceful.

I am writing this blog from a bench that is along the bay waters of the Gulf of Mexico. I am overlooking a marina filled with beautiful, expensive yachts, listening to the birds, feeling the warm afternoon sun on my skin, and enjoying the ocean breeze. I feel peaceful. My body is relaxed. I am breathing fresh air and getting Vitamin D on my skin. I can hear my thoughts. They aren’t cluttered with the business of life. I thank God for this moment. I wish I could do this more often. It feels like therapy – medicine for the body and soul. God’s creation is so amazingly complex. At times it is powerful, today it is peaceful. I am reminded of the time that Jesus and His disciples were in the boat and a powerful storm was raging all around them. The disciples were scared, fearful. And Jesus calmed the raging seas with a simple “Peace, be still.”

Oh, Lord Jesus, let there be peace and stillness in my heart. Even amid the crazy and loud lifestyle. Even when there is pain, fatigue, and uncertainty. Even when the frustration over a body that won’t work is overwhelming. Even when there is deep heartache and loss. Even when the stresses of life seem so important. Help me to trust not only in the good times, but also in the storms. And to know that You are in control of it all.

Just a note…

No Tuesday Tip today! It’s spring break here in Florida and my kids and I spent the morning at the beach and I am looking forward to a dinner date with my husband tonight. I’m having good energy this week, so I am taking the time to invest in my family!  I hope you’ll understand!

II Thessalonians 3:16 Now may the Lord of peace Himself give you peace always in every way. The Lord be with you all.

Love, prayers, and hugs to you all! – Ann

P.S.  If you need a fun, pick me up type song that will bring a smile to your face, listen to this. My daughter and I have fun singing this in the car together! 🙂
Hold Me by Jamie Grace

Inspiration From An Author

My Inspiration:

Here is a link to an interview with Laura Hillenbrand, the best selling author of the book, Seabiscuit. She has suffered with chronic fatigue syndrome for over 24 years. The New York Times interviewed her last year about the release of her new book, Unbroken, but during the interview they spent a lot of time discussing her cfs. It inspired me. You can read that article here:

http://well.blogs.nytimes.com/2011/02/04/an-author-escapes-from-chronic-fatigue-syndrome/

My Thoughts:

Today, I am using Laura Hillenbrand’s way with words as my inspiration. It’s not so much spiritual inspiration as it is just life inspiration. Her cfs story is so similar to mine. Her way of using words to describe cfs were inspiring to me. I found myself reading this article and saying, YES, that’s exactly how I feel! Now, why can’t I say it that succinctly when I am questioned about my illness? Perhaps it is because she is a best selling author and words are her life! Ya think? 🙂

I encourage you to go read the entire article, but if you don’t have time, let me quote my favorite part:

It’s exasperating because of the name (cfs), which is condescending and so grossly misleading. Fatigue is what we experience, but it is what a match is to an atomic bomb.  This disease leaves people bedridden. I’ve gone through phases where I couldn’t roll over in bed. I couldn’t speak. To have it called “fatigue” is a gross misnomer. Most people, when they hear the disease name, it’s all they know about it. It sounds so mild. When I first was sick, for the first 10 years or so, I was dismissed. I was ridiculed and told I was lazy. It was a joke.

Dismissed, ridiculed, and labeled lazy. Can anyone relate to that? I sure can. I’ve always hated the name Chronic Fatigue Syndrome because in today’s society everyone is “fatigued”. I was trying to explain my illness to someone years ago and they snickered, “I think I may have that because I am tired all the time”…followed by laughter. I felt belittled. I don’t even tell people about the cfs anymore. If and when it comes up, I prefer to just use the word fibromyalgia because then the hurtful, judgmental, labeling comments are a little less severe. (Notice I said less severe because I know that this same type of thing happens with the word fibromyalgia too.) In the UK, they’ve stopped using the words chronic fatigue syndrome and instead have labeled it myalgic encephalomyelitis or ME for short. That name is starting to catch on in USA, but the illness is still primarily known as cfs of cfids.

I am inspired by Laura because she is choosing to use her platform to spread awareness about cfs. Obviously this is something she has wrestled with and it is something I struggle with too. I don’t necessarily have a platform, but I do shy away from cfs/fibro awareness because of the vulnerability that comes with it. She has been hurt before by drawing attention to her cfs and so have I. She is using her voice to educate, perhaps a lesson I can learn from her.

I also admire that she continues to pursue her passion in spite of her illness. Easier said than done for most of us, but I believe that part of taking care of ourselves on this journey includes embracing the talents/passions that God gives us. It would be very easy to abandon them, but that would be neglecting a portion of our souls – a part of who we are and the way God made us. I hope and pray that illness doesn’t completely rob you of these gifts and that you find a way to keep them in your life. For Laura, it is writing. For me, it is singing. Yes, much, much less than what I would like to do, but still a big part of who I am. What is it for you?

I thank Laura for stepping out of her comfort zone to speak publicly about cfs. Many diseases have a celebrity name attached to it to bring awareness. I think it is time for cfs and/or fibro to have someone like that. Laura Hillenbrand just may be that person for us.

Tuesday Tip – Finding Support

This is my precious family – all of them!  What a blessing to have this many people in my life who love and support me!  I am blessed! (and exhausted!) Someone commented to me that we look like “the perfect” family.  Well, let me just tell you that we stood there and took 55 photos in this same spot and only ONE of them turned out! 🙂  Does that tell you anything?  And if you need any more assurance that we are not the perfect family you can go read my husband’s humorous blog stuffboysdo.com.

But as imperfect as we are, I love them all so much and I am so thankful! I don’t take for granted that I have people in my life that will love and support me through all the valleys of life.  It is a gift that I treasure.  I cannot leave out my parents who are a HUGE support system for me as I raise five children and struggle with my health.  I am so thankful for all their love and support.  I often wonder what people with cfs or fibromyalgia do when they don’t have that support system in their lives.  Maybe some of you fit in that category.

I don’t believe I have any great words of wisdom on the subject, I just want to make a point that a support system is necessary.  If you have cfs or fibromyalgia, you need or will need people in your life to support you through the very tough times.  We know that God’s grace is all sufficient through all of life’s trials, but I believe that He uses others to help us along the way.  You may ask, how do I find support if I don’t have any?  or I’ve tried, but no one really understands.  Here’s just a few things that come to mind.  I hope it is useful to you today.

1.  Pray about it.   I once spent years praying that God would bring me a friend that could understand me just the way I am.  Illness and all.  I said YEARS!  And in His time, He brought me just the person I needed.

2.  Seek it.  Investing in relationships is hard.  It takes a lot of energy and sometimes it just doesn’t work out and that can be discouraging.  A man who has friends must himself be friendly…(Prov. 18:24)  I think the best support comes from people who can relate to what you are going through – someone who perhaps has an illness as well, a compassionate friend from church, a person from a support group, an online friend that has fibro, a family member who loves you unconditionally and wants to help.  You have to proactively seek these people out.

3.  You need the outlet.  Having someone who can help you physically is a huge blessing, but more than that, I think most of us just need a place of understanding.  A safe, soft relationship where you can vent, cry, pray, and be understood.  I believe that having that outlet helps with the stress which ultimately helps with wellness.

4.  Fight discouragement.  I’ve read on numerous social networking sites that so many of you struggle with family members not being supportive and just down right not believing you.  WOW!  That has got to be so hard and so discouraging!  Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand.’ ( Isaiah 41:10)

5.  Lean on the Lord.  …But there is a friend who sticks closer than a brother.
(Prov. 18:24)
  God has promised to always be there for us.  We can always call on Him in our hour of need.  Even when we don’t feel His presence, He is there, and we need to cling to His promise.  Be strong and of good courage, do not fear nor be afraid of them; for the Lord your God, He is the One who goes with you. He will not leave you nor forsake you.
(Deuteronomy 31:6)


I pray you have found a support person(s) for your journey of illness.  If not, keep asking the Lord to bring that special person to you.  With or without earthly support, our greatest help comes from our Lord.  I will lift up my eyes to the hills, From whence comes my help? My help comes from the Lord, Who made heaven and earth. (Psalm 121:1-2)

Tuesday Tip – What Have You Tried?

Given that both fibromyalgia and chronic fatigue syndrome do not yet have a known cause or standard treatment, there have been a variety of so called “cures” and “no fail treatments” that have emerged over the years.  I am a believer in staying up to date on the latest research and trying new things to help alleviate symptoms, but if each of us tried all the latest fads and ideas for treatment that is ALL we would be doing.  It would be exhausting.  So, this post is not necessarily a tip, but a way to share with you what I have tried or thought about trying.  I’m not talking about certain meds or supplements, but actual treatment plans that claim healing.  I would love for you to share with me what theories you have bought into over the years that promised relief.  Some of you may have even tried some CRAZY stuff, that you can laugh about now! 🙂  Or perhaps you’ve found something that works!  I’d love to hear it!

1. Something I tried.
Have any of you heard of the guaifenesin protocol by Dr. St. Amand?  It is a pretty convincing sounding treatment.  There are hundreds of testimonies of people who have used the treatment and have found what they call a “reversal of symptoms”.  If you’ve never heard of it or would like to read more about it you can visit their website. fibromyalgiatreatment.com/GuaiProtocol Dr. St. Amand theorizes that fibromyalgia bodies cannot rid itself of phosphates, so they build up in body tissue and cause pain, fatigue, and all our other symptoms.  Taking guaifenesin supposedly helps our kidneys get rid of these phosphates and reverses the damaging effects of fibromyalgia.

Anyway, my mom and I tried this treatment for over 2 years back in the 1990’s.  We were very diligent in following the guidelines and rules (there are many!), but never found the “cure” that so many have claimed.  I’m not calling it a hoax by any means.  If it has helped hundreds maybe thousands of people with fibro and cfs, then I am all for it.  It just didn’t work for me.  It is not an expensive treatment and they are in process of trying to get some published studies done to prove their theory.  If that happens, I will be tempted to try it again.  Any of my readers have any experience with this protocol?

2. Something I strongly considered trying.
There are so many claims out there to cure fibro.  Of course, you have to be skeptical and wary of those who are seeking to take your money, but what about those that don’t want your money, they just want to help?  A few years ago I visited this website, fibromyalgiafullresolution.com and was fascinated with what I read.  This man is a massage therapist who uses a systematized protocol of frequent, neuromuscular massage to cure fibro.  Claiming something about the spine and soft tissues and the connections to our brain and our muscles.  It’s all pretty scientific sounding, but made sense when I read about it.  He is working with a retired Doctor who has agreed to be his credibility and sounding board for this treatment.

I was so intrigued by his ideas and website that I sent him some emails and inquired about his treatments.  I ended up paying him for one hour of his time and we chatted over the phone.  (He is in Ohio and I am in Florida.)  He was easy to talk to and answered my exhaustive list of questions.   Could he be on to something here?  He has many testimonies that claim they are “cured”.  His per hour treatment cost was very reasonable, but I would have to travel to see him for an extended period of time.  He’s clearly not in it for the money, so he just wants to help people.  I strongly considered leaving my family for two weeks to go see him, but ultimately decided against it.  I concluded that if his theory carries any weight, his plan for a published study and a book would eventually emerge.  If and when that happens, then I’ll buy into it.   It was worth looking into and I’ll keep my eyes out for that study!

3.  Something I would like to try.
My latest interest is in the Fibromyalgia and Fatigue Treatment Centers that are popping up all over the country.  Have you heard of these?  Here’s a link in case you are interested in reading about them. www.fibroandfatigue.com  (Dr. Teitelbaum is one of my favorite resources for fibro and he is involved with this organization. His website is endfatigue.com.) They claim that by doing all kinds of blood work, surveys and testing that they can tailor a treatment just for you that will reduce your symptoms, and maybe even eliminate them.  They believe that every case of fibro and cfs is different and can be caused by different things, so you need an individualized plan.  Again, hundreds of testimonials claiming that this works.  If I had the money and a center near me, I believe I would give this a try.  Closest one to me is in Atlanta and that is a five hour drive and raising five kids is not cheap – I don’t happen to have an extra $5000 laying around! 🙂  This is definitely one I am keeping on my radar though.  Maybe someday…

When you’ve been ill for as long as I have, you wake up everyday hoping that sometime in my life span they will discover the cause and cure.  In the mean time, I let myself daydream that one of these claims for improvement in quality of life will actually work.  Which ones should I try? or invest in?

I’m curious to know, if any of you have tried or read about these and other treatments that claim to “cure” you of fibromyalgia.  There is a ton of stuff out there if you dig around long enough.  Anyone want to share their experience?

My Beloved

My Inspiration:

My Beloved
By Kari Jobe

My Thoughts:

Last week, I had a day. A day where I let the pity party set in. You know the ones where you allow the bitterness to sneak in. Why is illness being allowed to prevent me from enjoying my life? It keeps me from doing things. Good things. God honoring things. Why would He allow that to happen? Doesn’t He want me to use my time and talent for Him? Why would he throw an illness at me that often prevents me from serving Him? I allowed myself to be angry, to vent, to feel, and I sat in it for a little while…

Then the answers came to me, as they always do. His purposes are different than ours, greater than ours. His ways are good and right. He loves me far beyond what I can imagine. In my earthly mind, I cannot comprehend why He allows “bad things” to happen to His children, but I trust Him. I do. He is God, He knows, and He has a plan. A plan that brings good out of things we can’t understand.

My favorite section of this song is:

I’ll breathe My life inside of you
I’ll bear you up on eagle’s wings
And hide you in the shadow of My strength
I’ll take you to My quiet waters
I’ll restore your soul
Come rest in Me and be made whole

These lyrics are taken right from the pages of Scripture. I’ll restore your soul – I’m really fond of this one, especially on the bad days. But amid the self pity, doubt, and temptation of bitterness, He still loves me and He calls me His beloved.  This song makes me cry. (Don’t they all? 🙂 ) A love song from God to us.  Listen, meditate, praise, and know that you are a beloved child of God.  I hope it encourages you today.

You’re My Beloved
You’re My Bride
To sing over you is My delight
Come away with Me My love

You’re Beautiful to Me
So beautiful to Me

Under My mercy
Come and wait
Till we are standing face to face
I see no stain on you my child

You’re Beautiful to Me
So Beautiful to Me

I sing over you My song of peace
Cast all your care down at My feet
Come and find your rest in Me

I’ll breathe My life inside of you
I’ll bear you up on eagle’s wings
And hide you in the shadow of My strength
I’ll take you to My quiet waters
I’ll restore your soul
Come rest in Me and be made whole

You’re My beloved
You’re My Bride
To sing over you is my delight
Come away with me my love