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Sagey

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"The Fibromyalgia Letter"

"The Fibromyalgia Letter"

Hello Family, Friends, and Anyone Wishing to Know Me!

How do I explain this to you my family and friends? This is very difficult to do as my illness is "unseen." So allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person's time is their most valuable asset and yours is appreciated

{{{Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points - places on your body where slight pressure causes pain. Myofascial pain syndrome is a chronic form of muscle pain. The pain of Myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points in your muscles can be painful when touched. And the pain can spread throughout the affected muscle.}}}

I want to talk to you about fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this, judgments are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.

I cannot show you a physically open wound to show how much pain I'm in. If I could you would take one look at that, tell me to sit right down, get me a pillow, offer me something to eat or drink and have that concerned and understanding look on your faces. However with Fibromyalgia, you will hear from many people that they would rather have a broken leg any day than suffer the kind of pain these disorders inflict. To me, a broken leg is even a poor example to compare suffering to these disorders and an insult to those of us with those disorders.

You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who's attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You won't see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can't see it and do not understand....

You must see with your ears and your heart what your eyes cannot see. You must listen carefully to what I am telling you. What I describe to you may not make much sense to you and may be difficult for you to understand. Sometimes it may seem to you to be a different universe that I discuss. Know that it probably is. You don't have to fully understand my universe and you cannot possibly. However hear my pain, listen for red flags always of any danger signals where you may need to help with added assistance. I like to call it "sending in the troops." Anytime I do not seem in touch with reality.

Please don't get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die. You will hear many things from me that to you seem as easily resolvable. You may wonder why I make the same "wrong" decisions over and over again. Why haven't I learned by this time? Why can't I see the senselessness of my behavior? I may seem to be getting my life together and them bottom out all over again.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding

better!" I am not sounding better, I am sounding happy.

What is happening here? Am I lazy, stupid, etc? Nope. My physical brain and body is very different than yours. I experience life different than the way you do. I feel different than you do. Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another's sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because of the burning and pain in my legs or arms and shoulders. The pain can be so intense that I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm. Do I experience mood swings? If I am hurting I may be angry, sad, depressed, or any of the hundred moods in the world. I'll never know what mood I will wake up with? I may treat you cruelly and say horrible things to you; I may ignore you completely, or cry on your shoulder unstopping when I'm in Fibro Flair. You may wonder what you said or did that made me this way. Well you did nothing it's the Fibromyalgia and all its underlining factors causing this.

{{{While the most predominant symptoms of fibromyalgia include widespread pain and persistent fatigue, the resulting cognitive impairment of this condition may be its most maddening. Commonly referred to as fibro fog, this symptom is a conglomeration of cognitive challenges. Fibro fog is understood to be a physical symptom of fibromyalgia, not a psychological one. Just as no two individuals experience fibromyalgia in the same way, fibro fog also has a varying range of indications, including: Mental confusion, Fuzzy thinking, Short-term memory loss, Inability to concentrate or pay attention, and Language lapses}}}

This is why I feel like a child at times. Just the other day I put the egg's I bought at the store in the pantry, on the shelf, instead of in the refrigerator. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to "lose" the keys, only to find them in the freezer. As I try to maintain my dignity the Demon assaults me at every turn. I have a physical illness and it isn't my fault and I didn't ask for it I don't want it and I don't deserve it.

{{{Occurring at the deepest level of the sleep cycle, individuals with fibromyalgia typically lack sufficient restorative sleep. We know that at the deeper levels of sleep, called delta wave sleep, a person's mind conducts internal housekeeping. During delta wave sleep, newly acquired information is assimilated and integrated into the brain. The inability to get sufficient delta wave sleep impairs the ability to recall information and operate at a normal level of mental efficiency.}}}

Sleep, when I do get some, it is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

Just because I can do a thing one day, that doesn't mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say "but you did that yesterday!" "What is your problem today?" The hurt I experience at those words scars me so deeply that I have let my family and friends down again; and still they don't understand.

On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another's face light up and smile at my wit. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

All I ask is that you become educated about fibromyalgia. I am someone in your life that suffers from fibromyalgia. You may think you know everything there is to know about it, but there is more information out there than you think. It is more complicated then you think, and it is more life changing then you think.

{{{Lend a helping hand. If you want to be helpful to someone with fibromyalgia, just ask what you can do. Be flexible with invitations and plans that you have made. Understand that sometimes the pain of fibromyalgia is overwhelming. Be active. Accompany them to a doctor's appointment and take an active interest in their treatment. You can take notes at the doctor's office and then review your notes together at home. Don't take things personally. Some people with fibromyalgia suffer from sudden mood changes. Try not to take these mood swings personally as they are part of the syndrome.}}}

So you see, you and I are not that much different. I too have hopes, dreams, goals and this demon Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now.

Thank you for spending your time with me today. I hope we can work through this thing, you and me. Please understand that I am just like you.

So I Need You To Please Understand Me.~Author unknown
 

Lou38

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Omg sagey. I could hardly read the last paragraph through my tears! This is so true & explains how I feel & probably every other person with fibro does. Thanks for sharing.
 

medicmurphy

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Wonderful, wonderful letter. What especially hit home is the feelings of letting others down and the relentless guilt that plagues us because we appear "unreliable". Living with FM is challenging enough but to let those we live down is heart breaking. The peripheral domino affects leaves so many casualties in its wake. Excellent letter!!
 

diamond

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Yes its v good thanks Sagey..Im sure many new members will appreciate....i posted the same letter on the site last year. There are a few out there that explain things so well. :)
 

vickythecat

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I needed this letter more than usual today. I had a horrible few days, with family members not showing any sympathy towards my illness. It makes me realize once again that I am all alone in this. All alone in this world. It is a hard fact to accept, but maybe acceptance is better than being disappointed each time that the only people that I love and trust in life treat me like 'all of this' is my fault. I may be alone, but I am glad I have this forum to read inspiring posts like this. It gives us all some hope...
 

Lou38

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Sorry you've had a tough few days vickythecat. It's so hard sometimes & a very lonely place. I too wish people could understand more but no matter how hard they try, they'll never get it. I feel really isolated sometimes but I also feel for my husband who has taken the brunt of my mood swings over the years. He can be a grumpy old man sometimes lol but has done well lasting almost 18 years! I hope you feel a bit better soon, or at least a wee bit happier. Tomorrow is another day & hopefully a bit easier than today ��
 

diamond

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My lifes pretty much going like yours vickythe cat..other people have affected me so much that i know its why my fibro got so much worse and stayed stuck..i know im a really good person but sure has bashed the confidence out of me and unlike them the consequences are im housebound .Ive given up trying and switched off the phone today as someone in my family took out there own problems at me and now i feel worse but they are apparently feeling much better and fine!

I got an apology but that doesnt take away the severe flare and lack of sleep as a consequence! :(
 

Janette Holzer

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I am so sorry to read that Willow. I hope you feel better soon. Great letter and post Sagey. Sometimes I feel particularly at the moment in a non flare period do I have fibromyaglia
 

Janette Holzer

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cont. and then when I read this letter it's all confirmed . Yes I do.
 

DoobieBrother

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Sagey, thank you for taking your time to post this. May I copy this for later use ? I have a long list of people who would be greatly 'improved' by reading it.
 

Sagey

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Hi DoobieBrother,

Of course,I copied it too lol.

We all have the same sadness and how others affect us. (Willow and Vickythecat and everyone).
I understand because I'm home most of the time too. It just takes soo much energy to get up and get moving.

Of course your a good person(Vicky).I feel all Fibromyalgia people are caring and sensitive people.

Other people just don't understand our loneliness and suffering.Its not only the pain and fatigue, it's longing to be our old selves again.

To run around and shop,cook meals and work would be a dream.But I'm not sure if I'llever be back there again.

Family will tell me I look great too! and It bothers me because I feel weak,tired and very old.

Our families don't get it,because they are in the middle of this fast past life.We were all there once and didn't have a lot of time for others.

They might not call u for months and act like they just spoke to u yesterday.And if you tell them " I feel good today"
They think your cured.

My husband tries at times, but I really don't think he gets how sick I really am.Because I try so hard to be "normal."
I remember running to work, running the kids to baseball,and then trying to cook.It was so fast paced, but that's life.But I enjoyed every minute of it.

We have to just try to keep talking to each other,and realize there are people out there. A lot of people that are just like us.And hopefully that will give some comfort.

I have to remain positive and hope for some kinda of treatment that will make us better.

I want to enjoy the rest of my life. There's only one life,and even though we have a chronic illness, we can still enjoy it in our own way.


Sagey
 

diamond

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Lovely true post Sagey..only thing i would add is i think i did have time for others but i know exactly what you mean illness only has the hugest impact when its yourself ...or maybe your child or partner...you can sympathize and be kind to other people who are unwell in the moment but then your day carries on...off out and about and busy and they are not at the forefront of your mind and you cant feel their physical or emotional pain every minute.

I am grateful for this site its been a life line some days...especially when even my own family say dismissive things..they dont realize the hurt they cause.
 
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