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When fatigue makes you dehabilitated….

Saturday, June 08, 2013

Fatigue is such a simple word. To most it means “hey I’m just worn out I’ll recharge and be fine.” Sadly this is not the case with those who suffer a chronic illness, such as chronic fatigue syndrome or fibromyalgia. The sheer thought of moving a muscle to get out of bed is more than one can handle. Placing the feet on the floor is undesirable. What is one to do? Many do not understand this overwhelming feeling fatigue gives us. Fatigue leads to depression. You find yourself depressed because you are too “tired” to get up. You look around the house and see family doing what you used to do. Or you look and it’s not getting done. Sadly this issue is a vicious circle. Solution? Got me I only know that when the fatigue hits me I turn into someone I hate. I’m cranky, irritable and angry. I snap at the merest of things and then spend the next two days apologizing. Then there are those still like I said “just don’t get it” because it’s not cancer, heart failure or something they can “see” they don’t understand and cruel comments are made. I was asked once if I could speak to God on one subject what would it be……….It would be “why fatigue?”

  
  Member Comments About This Blog Post:

LINDAF49 6/10/2013 9:55PM

    Gentle hugs - keep trying, fine tune the diet, the supplements and the rest : activity ratios until you can find a way to live positive and paced life! 13 years since diagnosis and a long trail before that! and I still go day by day ... learn to set those boundaries and have FAITH! Love to each of you that must suffer this non-and-mis-understood part of our lives.

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CANDAATTHESHORE 6/9/2013 4:37PM

  Before fibromyalgia I was athletic, intelligent, active,etc. This morning it was all I could do to get out of bed. It literally took me an hour from the time I woke up. Some people understand, others don't or can't. It may not be their fault. In the beginning I thought I had to try harder or find the "cure". It took a loooong time to learn to live with it.

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SARAHTAIT 6/8/2013 12:22PM

    I totally understand fatigue and I didn't. Some part of me deep inside thought that maybe it was "weak" people who got fatigue...I truly think I thought that they could push themselves out of it. BUT this past fall I developed fatigue so debilitating that I could'nt get off the sofa....I couldn't do anything...I could NOT push through it or make myself feel better. It really opened my eyes as to what the fatigue people talk about really is....it is like being dead only you are alive...you can't move or function. No one will really know how terrible this fatigue is unless they experience it themselves....it is beyond words.

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Thought at this time

Friday, May 17, 2013

When love dies was a phrase I thought I would never hear or deal with again. Yet, I find myself in the throes of the experience. As I woke this morning I think for the first time in a week realizing life will go on, I had to stop and remember a few key things taught to me by my loved one. I was taught even though we spent years apart and away from a love that started, we had 28 years to build a friendship including a love. I was taught that disagreeing is sometimes better than agreeing. I was taught simple things in life matter more than the huge things.

What are some of the simple things? Oh the soft still sound of a new morning as the birds chirp is one simple thing. This small sound represents the life we are given and each new day is one of hope. The small smile on a strange day is another. This smile as I close my eyes I can still see although it usually meant “really? Should we rethink that comment?”. The simple thing of an old movie on a cold day as you ate popcorn together and laughed at the corny areas. A movie I mentioned earlier this year Song of the Season had the song “Love changes everything” in it. I will admit watching this movie has been emotionally challenging but something J said to me a few days before my world stopped came to mind this morning “Love changes everything……..Love doesn’t stop just because the body does.” As tears stream down my cheeks, an adopted brother watches in silence He only said “Love did change everything.” 28 years ago this August we met as a group. Two years ago our preacher of that group died a love for you. You took a huge risk to love again. We all watched you and Jeff grow more closer each day. Never had we found two individuals who could read a look the way you two did. So yes Love changes everything.” Now the funny thing is if you knew this adopted brother he hates anything sappy and well close to a chick flick. But he sat watching this movie today of all days as I watch a birthday approach in a couple weeks never imagining I would face it without J………

These words made me freeze as they were sung at the end:

“We are all driven by the winds of change. Seems like nothing ever stays the same. It’s faith that guides me around the bend. Life forever beginning and Beginning again.”

Yes I am at a new beginning. Yes I will mourn a while more but faith got me this far it will guide me again. I made promises when J got sick. The hardest promises in the world when you are trying to grasp he will be gone. My ministry will go on maybe with an added department. Betty Boop will continue to bring me a smile as I remember the first Halloween she entered our lives as a joke. The hardest is the one not to hide and ignore the world. But the world as the song says brings us troubles……….but the Greatest love of Christmas with the birth of an infant boy gave me reason to know “Love Changes Everything.”

  


A sudden Thought

Thursday, April 04, 2013

I sat thinking today about those with chronic illnesses. I suffer from fibromyalgia. No, can’t say I went looking for it, or that I fully yet understand it. I was diagnosed in 1997 after 4 years of a back and forth battle to find out what exactly was wrong with me. See the problem is you can’t do a blood test, an x-ray or some scan to find this syndrome. Some doctors believe it is real, others do not. I found in 1997 most do not. The medical doctors sent me to psychologists and psychiatrists because they knew there was nothing physically wrong with me. The psychologists sent me back to medical doctors because I had passed every mental test there was to give so of course it had to be physical. And this seesaw went on for four years. When our new family physician, that I was forced to go to because of insurance change, looked at me and said “there is nothing mentally wrong with you but I do believe you have a syndrome that is not easy to explain.” He went on to explain the syndrome of fibromyalgia and how he was going to refer me to a rheumatologist that he trusted (ok he trusted…..never have I said yet I did). My first thought was “here I go again……the seesaw I wanted to stop”.

Well I found myself amazed, she sat with me for 3 hours after poking painfully where I did not need poked and started to explain this syndrome. What I discovered is that one area is never discussed, not by therapists, not by doctors. And that is the emotional imbalance you are left with after the diagnosis.

See, today 16 years later, I sit still battling not the physical symptoms. Let’s face it, those you can’t battle. Oh I’ve tried to ignore the tiredness, the pain levels and dig in deeper and tread forward; but I’m talking the emotional roller coaster experienced. Now don’t get me wrong….in the beginning I saw many therapists for a variety of reasons but not one dealt with the emotions I was feeling because of this syndrome.

I was left with mistrust of our medical profession. I found the roller coaster left me doubting when a doctor diagnosed me with even an ear infection. I had to learn to trust again in the medical field. I found depression in a way I no longer could understand. Some of thepression I could predict and fight. But what about those “fog” days when I woke depressed in a gray cloud and didn’t know why. Then I would spend the day clawing to get out to find I had an increased pain level, headaches, and confusion. This would lead to……

Anger. Oh yes even 16 years later I daily get angry at the limitations this syndrome has placed on me. What I want to do and what I can get my body to do is a dozen different things. I weep in anger over the injustice. I want to scream and yell then realize that accomplishes nothing so I bury it inside. But here’s the problem with this theory and action, the further you bury the anger, the more it surfaces in different ways. See you start to snap yet really don’t understand why, you criticize a normally routine job done by others, again unsure why. You look in the mirror and see a monster “red and full of anger” yet unsure why. This anger turns to bitterness at usually everything for a short while at least around you. But the biggest bitterness is the bitterness and injustice you feel at the syndrome. See it’s not like a person that angers you. You have someone concrete in front of you. This syndrome is “illusive”. You have no picture to place on it, no visual you can use to be angry at it. It begins to feel irrational to yell at something you can’t see.

Then the circle starts again. You bury the anger, it bubbles up, you can’t find a source to yell at so you bury again. This anger is only one of the zillion possible emotions you feel. Yet it seems to be the one I find myself returning to today.

  
  Member Comments About This Blog Post:

LINDAF49 4/12/2013 8:39PM

    I once heard from my dear eldest brother who has degree in psych..."When you see anger, look for the emotional pain underneath it and then look for the companion fear."

After 13 years of Fibro, I still have days of fear when the physical pain gets so big and the element of 64 years of age added, I get scared about how will I continue to care fore myself and my DH???

Then I pull out my scriptures cards for some of the 365 bible commands to FEAR NOT!!! be strong and of good courage and keep pressing forward. Hugs.

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The Face in the Mirror

Saturday, March 30, 2013

I sat listening and attempting to help my daughter with her statistics class and my mind started to wonder. As I wondered through what needs done for Easter Dinner tomorrow, the laundry oops make a note that needs done…I had a memory flashback. Anyone who gets to know me learns I hate mirrors. I hate using them and I never do if I can help it. This is not a new problem. I have been this way since I was a kid. I had someone once tell me how pretty I was. I really have to admit I didn’t and in some ways still don’t. I went to that dreaded glass looked in and said “nope, I just don’t see it”. I figured out while sitting with my daughter why…….

See when we look in the mirror we don’t see the reflection. We see the battle scars, the wounds, the imperfections. We hear the negatives slung at us in anger and disappointment we see the weight gained because of a facet of a zillion reasons and in my case I see failure. I still struggle with my past mistakes and imperfections. My “looking glass” mirror does not reflect those around me. If we could have a mirror that spoke to our emotions, what would your mirror say today?

  
  Member Comments About This Blog Post:

GRANDMABABA 4/1/2013 3:19PM

    Mine would say...leave the past behind and be kind to yourself today.

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Smiling Warm Fuzzy Thought

Friday, February 08, 2013

I have been accused of always being behind the times. Maybe I am but today I felt the need to watch a Christmas movie while writing on “the” book that always gives me that warm and fuzzy feeling. Now it’s a rare movie with Naomi Judd really sappy but then again would expect less from a woman? (The movie is called Song of the Season) As the movie played i started reflecting on the theme of love and the love we seek. I just sat reflecting as the movie rolled along.

Now the end of the movie let me tell you the song at the end “Love Changes Everything” today for the first time took a brand new perspective. See I’ve always thought about love of others when the song was sang. As I sat listening I replayed that portion again when I realized just how much God’s Love changes everything. The pains of the day, the hectic schedule we like to keep, the demands made on us is worth it all when you realize God smiles down with a glow of love because all we did was say “yes God I love you”.

He didn’t look at the physical qualities, or the inside qualities. God hasn’t looked at the mistakes I’ve made as I cried out for forgiveness. He simple smiles down saying you did what you could today and that is all I ask.

See Love Does Change Everything…………………God’s love says “you are mine.” (John 3:16 says it all)

  
  Member Comments About This Blog Post:

LINDAF49 5/7/2013 11:59AM

    I read this blog this morning and smiled...love changes everything...I put on a youtube version and enjoying it as I Spark this morning... Thank you for this ...You have a gift of putting words together and I appreciate you. I wonder if you are still hearing this song today in your time of loss. I reach out with love ... God's Love changes everything even when we have lost an earthly one of love, God is still there and reminds us that he carries us through these hard times and the love you have experienced in the spiritual realm as well of this earthly plain ...Love does change everything...especially You! God bless.
http://www.youtube.com/wa
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http://www.youtube
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eature=fvwp
http://www.youtu
be.com/watch?v=sMyEzfhCjNA&NR=1&feature=endscreen

Comment edited on: 5/7/2013 12:10:32 PM

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