Living with Fibromyalgia and Chronic Fatigue Syndrome - May 12th is Fibromyalgia Awareness Day

Show your support by making this invisible illness visible 

May 12th is Fibromyalgia Awareness Day

The one thing that makes fibromyalgia so hard to live with is the fact that you do not look sick. Fibromyalgia is also called the invisible disease, so even the people closest to you have a hard time to understand your situation. Someone who's suffering from fibromyalgia, try their best to give an appearance that nothing is wrong with them. They take extra care to look their best and when they meet people, they sound and look very cheerful, hiding the pain and exhaustion they really feel. However, masquerading as a normal person day after day is exhausting, so we often try to avoid socializing all together. This behavior usually after some time becomes a quality of life, where you get more and more isolated from family, friends, and finally the world.

Except for the physical torment, there is also the emotional pain of misunderstanding and/or lack of knowledge from family and friends. If someone in your family, a friend, co-worker or neighbor have fibromyalgia, you'll help them tremendously by taking the time to learn about this chronic, debilitating and invisible disease. It will help them not to feel so alone.

So for all of you who thinks fibro is just about pain, I just want to say, it is so much more. During the National day of Fibromyalgia Awareness Day, I hope that non-sufferers will take the opportunity to learn and understand better what it means to live with fibromyalgia, and how it affects our everyday lives. Only then you'll understand, there are painful tears behind that smile. 

Please support research to find the causes of and a cure for fibromyalgia. Show you care by wearing purple today.

Living with Fibromyalgia and Chronic Fatigue Syndrome - Am I cured?

Yesterday morning I woke up and felt absolutely great. Now don't get me wrong, it's not like I did not feel any pain. The pain was there, but just on the surface. I almost felt like I used to do, years ago, before I was struck with Fibromyalgia and Chronic Fatigue Syndrome. My mind was clear and I felt rested, something I have not felt in years. I was so happy, I was floating on air. I felt like such a burden had been lifted from my shoulders. I started to have these thoughts whirling around in my head; Am I cured? Perhaps this nightmare, I'm living night and day was now miraculous over?

Right after my morning coffee, I started do things, I had not done for so long. I baked bread, (no, I did not use a bread maker), I cleaned those hard to reach places, that's otherwise just too tiring to do by myself, I took a long walk with my dog, and I was actually running a few meters, just to remember how it felt like. I came back in, started to draw my illustrations, with no pain in my hands. I made a really nice dinner, because it was fun to cook again. I did all this in one day without laying down to rest in between. I felt like I had run into an old, dear friend, who I had not seen for years, and who had been dearly missed. Oh god, how good it felt to feel like the old me again.

Around two o'clock last night, I woke up, realizing the old Sannel was suddenly gone again, and I was back to my living nightmare. I can't help to wonder; what on earth did I do that actually made me feel like my old self yesterday? I wish I knew, because then I would do it again in a heartbeat.

Living with Fibromyalgia and Chronic Fatigue Syndrome - I'm Not Giving Up!

Thank you Max for helping me through my days!

One year ago today, on April 17th, 2012, I was urgently hospitalized for severe depression. Years of pain and exhaustion, going from one doctor to another, who did not believe me, or having me try out medication for about anything and everything, that in the end made me feel like a test-lab rat, finally made me lose all my will to go on living. By not eating, I figured my heart would not take it in the end, and then my everyday excruciating pain and exhaustion would end. 

If it had not been for my husband at the time, and my best girlfriend, I do not think, I would be sitting here today. Because of their action, by taking me to the hospital where I was put under close surveillance and regularly fed, until I was strong enough - in my mind and body – I was then able to bounce back and
continue living my life again.

Being hit with Fibromyalgia and Chronic Fatigue Syndrome has completely changed my life. From being a very active woman all my life, being in charge of myself, confident, self motivated and fun, I now feel useless, dependent and boring. I get really frustrated because I still feel like the old me but my body can't keep up. I get really tired and feel nobody really understands what a struggle it is to keep going. Life is not too much fun any more.

Not a second, a minute a day goes by, that I am not in pain. However, I have found ways to cope with most of the pain. But living in a permanent fog where I can't even think straight is affecting me and life in general. I am so tired all the time that I can't do much and I have stopped socializing more or less, due to widespread pain.

Looking back over the year, I'll admit, it has not been easy. I still suffer with excruciating pain and debilitating fatigue every single day and night. I still feel the depression creep up, and I have to fight it off through prayer, and my love for writing keeps my mind on track.

What has changed during this past year? Well, I'm not ready to give up. I love everything life has to offer. I was blessed with a life, and I'm so grateful waking up every morning to a new day. Yes, I admit, I really want the old me back, but until then, I will not give up on life that's so very precious.

Haiga by Sannel Larson

Living With Fibromyalgia and Chronic Fatigue Syndrome - Take a Couple of Tylenol's and You'll Be Fine

. . . Take a couple of Tylenol's and you'll be fine

. . . Oh, I have those pains too 

. . . Everyone has pain

Meditate and yoga are all you need

Living With Fibromyalgia and Chronic Fatigue Syndrome - I'm Still in Pain!

Even after all this time since I was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome, I can tell that most of the people who are close to me, have absolutely no clue what it means to live with these illnesses.

Perhaps it's my own fault, I may not have explained thoroughly what kind of effect these two illnesses does have on me and my life? After all, most of the time, I'm embedded in this thick fog, called fibro-fog, with the outcome, my mind and speech does not cooperate, and often, I have difficulties remembering words. When I try to explain, it usually do not come out the way I had planned it in my own head, and it may sound unclear and confusing to you, and believe me, it's extremely confusing to me, with the outcome, I feel dumb and slow.

Perhaps it's because when my friends and family do see me, they see me only on those days when I feel fairly well, not realizing, my pain is still with me and so are my exhaustion. They assume, I must feel fine, pain free and full of energy, since I join them for a stroll in the park or go shopping together. They do not understand, it's tiring and exhausting to present myself to them as normally as possible, not letting them understand how much pain I'm in.

This chronic fatigue and pain-based illnesses can fluctuate quite rapidly from one day to another. Or from one hour to another. Just because, I took a nice walk in the forest yesterday, doesn't necessarily mean, I can repeat this today. And since I took that nice walk in the forest yesterday, my pain and fatigue have escalated. and I'll pay for it dearly today, the day after, and many times, even longer.

On those days when I'm up and around, I feel strong mentally. That's the only difference from those days when I can't crawl up from bed, but remember, I'm hanging on by the thinnest of threads since my pain and exhaustion are pretty bad. Each step I take in the park are filled with pain and exhaustion. The loud noise in the movie theater is terrible painful to my ears, and  it will take days to recover from it. All those cars and people on the street, leaves me unfocused and tired. The bright lights and loud noises in the stores, turn my fibro-fog into a nightmare. Trying to follow a conversation leaves my mind and body exhausted .

So please, do not assume I'm fine just because you see me up and walking. Do not assume I'm pain free and full of energy. In fact, nothing could be further from the truth. It takes all of my willpower and energy to be up and out of my safe, quiet environment. However, I too, want to live once in a while, so I push myself to do things, but please remember, I'm still in pain, and tomorrow, I'll pay for it dearly.

Living With Fibromyalgia and Chronic Fatigue Syndrome - Sorry!!

“A true friend 

will follow the trail of your painful and sad tears, 

carefully collect them, 

and return them as tears of joy and laughter.” 

~ Sannel Larson

I must offer my sincerest of apologies for not publishing any post today about " Living with Fibromyalgia and Chronic Fatigue Syndrome (CFS)"  Unfortunately, I'm not having a good day. Instead, I ask of you to have a moment of caring thoughts and  prayers for Jami Pereira, who is diagnosed with stage four Advanced Adeno Carcinoma of both lungs. Cancer Care for Jami  

You can read about Jami on my blog: Sannel's World of Poetry 

Thank you, 

Hugs and God Bless,

Sannel 

Fibromyalgia and Chronic Fatigue Syndrome - Stress is one of my biggest enemies

My apologies for being one day late with this blog post.

As some of you may know, I am dedicating Tuesdays to write about my two illnesses, Fibromyalgia and Chronic Fatigue Syndrome (CFS). However, when you are living with FM and CFS, things usually do not go as planned. There will always be the usual obstacles in the way, that will make it hard to finish anything at all, like pain, exhaustion, brain fog, anxiety and so much more.

Then there are other unexpected obstacles and interruptions like the internet connection is down, too many phone-calls, too many emails that needs to be replied to, too much pain which in turn will make my writing slow. . . and all those expected and unexpected obstacles will as a result make my stress levels to rise, and my Fibromyalgia symptoms worsen.

Stress Is One Of My Biggest Enemies 

When I notice, I'm not able or have the time to go through with what I had planned, then my stress level hits the roof and that's when I lose control over myself. I stop function all together, and I go into this foggy world of so much sadness, confusion, aggravation and worthlessness. When I'm in there, it takes all my willpower to try to find the opening and get the hell out of there as fast as I can, or it will trap me in there for days and days.

The Person I Once Was
Nobody knows me better than I know myself, so when I see myself in my own mind's eye, it's rather frightening. How can this person possible be the same efficient person who once could do multitasks like no other. Quick, hardworking and full of energy. Stress – No problem! There was always thousands of projects going on at the same time. There was no limit to what I could accomplish in one day, and look at me now, I can't even complete a freakin' blog post.

Stress Triggers Fibro Flares
In order to better cope with my Fibromyalgia, I have to eliminate as much stress from my life as possible. I have to stop delaying things until the last moment ( like a blog post) and start organize my life in order not to trigger any stress. I should start making lists and finding ways to get things done without the pressure of a ticking clock and get my stress under control. I just wish, somehow in my foggy brain, I could remember all those things.

As Soon as Stress Enters My Life - My Symptoms Escalate

People who suffer from Fibromyalgia experience pain, exhaustion, sleep disturbances, fibro-fog, indigestion, headaches and much more. When stress is added, our symptoms escalate, and then we get more stressed as a result. This is what happened to me yesterday, with the conclusion, I could not finish writing the original blog post that was intended, and nothing else for that matter. Hopefully, that post will be completed by next week, as long as I do not let stress enter my life once again.

So for all of you who thinks Fibromyalgia is just about pain, I just want to say, it is so much more.

Living With Fibromyalgia and Chronic Fatigue Syndrome

So where exactly does it hurt? 

Uhh. . . well, where should I start. . . . 

                                                                                  

 if that does not answer your question, maybe this will. . . 

Living With Fibromyalgia and Chronic Fatigue Syndrome

I do not blame my family, friends and neighbors if they are feeling confused, many times when they see me. There are times, I can feel quite wonderful, even if my pain is constantly with me. Other times, I can feel so sad or confused. Then there are times, no one sees me at all, since I can't bear to meet, be seen, or even talk to anyone. These stages in my mood can change rapidly from day to day, or from hour to hour. So how can anyone possible understand what's going on with me? One minute they see me like a vibrant, fresh rose, the next minute, I'm wilting, fading away. . .  

~ My Day As a Rose ~

Monday

Tuesday

Wednesday

Thursday

Friday

Saturday

Sunday

~Monday~

Yesterday, moist with morning dew

Today, I'm withered up, with pallid hue

~Tuesday~

Yesterday, a beautiful rose

Today, of my beauty no one knows

~Wednesday~

Yesterday, I touched the glowing sunrise

Today, I'm slowly fading before your eyes

~Thursday~

Yesterday, my sweet fragrance scents the air

Today, my lovely perfume, I can't bear

~Friday~

Yesterday, a joy to behold

Today, I feel dull and oh, so cold

~Saturday~

Yesterday, vibrant and unique

Today, tranquility is what I seek

~Sunday~

Yesterday, gracefully standing tall

Today, my gentle petals fall

© Copyright 2013 by Sannel Larson. All rights reserved

Fibromyalgia and Chronic Fatigue Syndrome - Is it Really Worth it to Have One Day of Fun?

Is it really Tuesday again? Where has the time gone. . . well, I know where half of my week went.

It was spent in bed in a dark room, too tired and in too much pain, to do anything else but sleep the hours away. When pain woke me up from my sleep, I stared into the wall, wishing I could fall asleep again, just to get a break from the horrible pain.

After three days in this state, I'm starting to wonder, if it's really worth it to have one day of fun, knowing I'll pay the piper for it the rest of the week?

So what was this "fun" you did, you ask.

I celebrated my birthday by spending some hours with my childhood friend, chatting over a cup of coffee and cake, held a newborn baby in my arms, took a short walk in the forest, stopped to pet some horses. In the evening, I enjoyed a lovely meal in a restaurant with my family.
For most of us, it does not sound too exhausting, but for someone who's suffering from Fibromyalgia and Chronic Fatigue Syndrome, it means way too much!!

Anything that will alter my immobile, everyday routine, will have a negative impact on my mental and physical health. I do know my limits and I try to plan around it. However, it does not take much to have me fall into complete exhaustion and into the black hole of depression.

Every night I dream that tomorrow will be better, and eventually it will. So this morning when I woke up, with my usual excruciating, stabbing, crushing pain all over my body, I was thrilled - so happy, because I felt this morning was different. This morning, I woke up rested which meant, I can manage my pain, so I can once again live my "normal" painful, foggy life.

So today, I have the urge to write on my blog,  read, visit my friends on FB, write a poem, do some illustrations to my book, eat, dream, enjoy the blessings life has to offer. . . .Oh, life is wonderful - and I'm so happy!!

Living with Fibromyalgia and Chronic Fatigue Syndrome "Today is not a good day"

If you have read my other Fibromyalgia and Chronic Fatigue Syndrome posts, you know that I'll share with you my own ordeal with these illnesses, and also provide you with important facts about Fibromyalgia and Chronic Fatigue Syndrome. 
Hopefully, by sharing my everyday struggle, I may help someone in the same situation, not to feel so lonely. I hope, too, that non-sufferers of these debilitating and often "invisible" illnesses, will learn and understand better what it means to live with this, and how it affects our everyday lives. 

Living life one hour at the time

Living with these illnesses makes it difficult to plan ahead. I have no idea how I will feel in a week, day or even one hour from now. I have learned to make the most out of the hour or hours when I feel almost like my old self - like calling my friends on the phone, do the dishes, write, go shopping, draw my illustrations and take a walk.

However, I tend to overdo it because I'm so extremely happy and excited that I'm able to do something other than just lay in bed, so the next day, the pain and exhaustion will get even worse, and forces me to be completely inactive for days with a mental state of complete exhaustion.

Today is one of those day's - Not a very good day! 

Today it takes all my energy and willpower to write these few lines here. The pain in my hands does make it really hard to type, and my mind is exhausted so you'll have to excuse me for making this blog post rather short. Hopefully, tomorrow will be a "good day."

Living with Fibromyalgia and Chronic Fatigue Syndrome "But You Don't Look Sick!"

If you read last Tuesday's blog post, you know that I began my very own, Fibromyalgia and Chronic Fatigue Syndrome awareness Day. Every Tuesday, I'll share with you my own ordeal with these illnesses, and also provide you with important facts about Fibromyalgia and Chronic Fatigue Syndrome. 
Hopefully, by sharing my everyday struggle, I may help someone in the same situation, not to feel so lonely. I hope, too, that non-sufferers of these debilitating and often "invisible" illnesses, will learn and understand better what it means to live with this, and how it affects our everyday lives. 

Tough pill to swallow

Last week, I mentioned that it took many years, before I finally was diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. As soon as I was diagnosed, it helped me mentally, because I finally knew what was wrong with me, but it also brought me grieve. The thought of never feeling "good" for the rest of my life is a tough pill to swallow. 

I'm a person that hardly ever complains when I'm having a flue, or a headache, or any other aches or pains, so when the symptoms of chronic pain, aches and exhaustion started, I never let anyone knew about them. I figured, I had been working too much, or had been under too much stress, or it was the signs, that I was getting older. 

Even the tears that trickle down my cheek are painful. . .
However, the weeks and months past by, and so did the years. It was exhausting years, filled with frustrations and chronic pain. It did not matter how much I rested, I was constantly exhausted and in pain. Many times as I did a chore, I just fell to the floor and cried, and even the tears that trickled down my cheek was painful. However, I would never let anyone see me in this state of mind, or show in any way that I was suffering. Instead I put on a bright smile, and told everyone, I was fine. 

Surrounded by a thick, gray fog
In addition to the pain and fatigue, I developed symptoms of memory loss, hard time to concentrate, sensitivity to bright light and noise ( watching TV was not enjoyable anymore,) nervousness, anxieties and apathy. My surroundings appeared very diffused and muddled, like I was embedded in a thick, gray fog all the time. I had a hard time focusing when people spoke to me, and I had difficulties to find words when I spoke. 

People closest to me started to lose patience with my loss of time, memory and my disability to focus. My chronic pain woke me up constantly during the night, which left me exhausted in the morning. Any kind of stress and anxiety would make my symptoms even worse. I avoided more and more to socialize, and my ability to work and pursue any quality of life, became radically affected. 



The severity of Fibro-fog varies from day to day and from person to person.

Symptoms of Fibro-fog:

• Inability to concentrate
• Mental confusion and fatigue
• Impaired thinking
• Inability to recognize familiar surroundings
• Inability to comprehend written or spoken words
• Absentmindedness
• Loss of short-term memory
• Disorientation
• Trouble with directions
• Short attention span (seems like ADHD; sometimes speaking over others)
• Acquired dyslexia (includes difficulty speaking known words)

Lack of knowledge
Except for the physical torment, there is also the emotional pain of misunderstanding and/or lack of knowledge from family and friends. Perhaps rejection from spouse or your loved one. In many cases there could be financial and social ruin, since the person with fibromyalgia often lose their jobs. The overwhelming feeling of pain and hopelessness, combined with feelings of failure, guilt and broken dreams can lead to social isolation, severe depression, and even suicide. 

BUT YOU DON’T LOOK SICK!

The one thing that makes fibromyalgia so hard to live with is the fact that you do not look sick. Fibromyalgia is also called the invisible disease, so even the people closest to you have a hard time to understand your situation. Usually, people who are suffering from fibromyalgia, try their best to give an appearance that nothing is wrong with them. They take extra care to look their best and when they meet people, they sound and look very cheerful, hiding the pain and exhaustion they really feel. 

However, all this takes very much of our energy, so we often try to avoid socializing all together. This behavior usually after some time becomes a quality of life, where you get more and more isolated from family, friends, and finally the world. 

More facts on Fibromyalgia and Chronic Fatigue Syndrome, as well as my own story, how it is to live with these illnesses, will appear on this blog next Tuesday. 

Living with Fibromyalgia and Chronic Fatigue Syndrome

Every Tuesday, I will write about  Fibromyalgia and Chronic Fatigue Syndrome. Why Tuesday, you may ask?  Well, I could probably talk about these two diseases any other day, except this day is very important to me. It was on a Tuesday, when I was finally diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. So, what could be more fitting than to make Tuesday's on this blog, into my very own, Fibromyalgia and Chronic Fatigue Syndrome awareness Day?

Years and Years of Not Understanding What Was Going On 
I was recently diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. I was finally given the diagnose in 2011. However, I have lived with it for so much longer. It has been years and years of not understanding what was going on - What was happening to me?  Going from doctor to doctor, getting medication described for all kind of illnesses and diseases. Doctors telling me with irony in their voices and a pat on my back; Oh, just get back out there and work, and you'll be fine!!  
Work!? When just getting a shower and getting myself dressed to go to the doctors appointment had drained me out completely, and was going to leave me bedridden for days. Oh, and I really did not appreciate that sympathetic pat on my back, since that pat had hurt so much that I just had wanted to scream. 

I Pushed Myself to Please Everyone
Even with the pain and exhaustion, I pushed myself to please everyone. I tried to be social, do the work that was expected of me, act like my normal old self, only to cry myself to sleep at night. However, the pain was horrendous and woke me up constantly during the night. With the lack of sleep, I could not handle the pain very well, and it just became worse and worse. 

I lost the excitement to do even the simplest things, since it meant my pain and exhaustion would triple. Soon, I became very depressed. I refused to get up from bed. Finally, I lost the will to live, even though, I did not want to die, I could not go on. I stopped eating, knowing that my heart would not take this punishment for very long, and my long awaited relief would soon arrive and be a blessing. 
My story will continue next Tuesday. . . 

Facts on Fibromyalgia

When you hear the word Fibromyalgia, you immediately think of pain. When you hear the words, Chronic Fatigue Syndrome, you think of exhaustion. However, there are so many other symptoms a person with these diseases has to struggle with everyday, which you may not know about.

Living with fibromyalgia, FMS and Chronic Fatigue Syndrome, CFS- also known as ME, can often take over your life and turn you into a shadow of your former self. Except for pain, you have to struggle with impaired memory and concentration difficulties, apathy, anxieties, listlessness, fatigue, nervousness, panic attacks, irritability, faintness, tremors, painful intercourse, sweating, anxiety, heart palpitations, insomnia, feelings of guilt and failure and even suicidal thoughts. These are some of the more common symptoms one might meet.

There are Varying Degrees of Fibro

To understand fibromyalgia we must first have in mind that there are varying degrees of fibro. To many the fibro doesn’t limit them very much. They can still keep a job, do activities and socializing like normal people. To some the fibro may flare up once in a while and last just for a few days. Others may have just a mild version of fibromyalgia. And to some of us, the pain is so extreme that our lives had to change forever.

More facts on Fibromyalgia and Chronic Fatigue Syndrome will appear on this blog next Tuesday.