How can I explain this condition to my loved ones

All your fibromyalgia experiences, questions and answers.

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How can I explain this condition to my loved ones

Postby mamamaka » Mon May 25, 2015 9:01 pm

Please can someone help me?
I try to explain to my husband why on some days I cant do everything that I need to do and need extra help with things, don't get me wrong, he really is one in a million, but he just doesn't understand what I am going through and I don't know how to explain it.
The closest I have been to explaining it to anyone is that it feels like I have the flu, which on the whole is what it feels like, although that doesn't explain the really bad, burning joints, the sciatica, and the sheer hard work that is some days.
Can anybody sum it up in a few words???
T.I.A xx
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Re: How can I explain this condition to my loved ones

Postby murph » Mon May 25, 2015 9:08 pm

Hi had the same trouble I found getting them to read some if the post people put on the forum and look at symptoms of fibro might help
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Re: How can I explain this condition to my loved ones

Postby sheen » Mon May 25, 2015 9:53 pm

Oh I understand what you mean.... I have the same problem, always feel like I'm doubted. If you find a way of explaining it, please share.. I've asked my family to read up on it, so far no one has. Xxx
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Re: How can I explain this condition to my loved ones

Postby LibbyWick » Mon May 25, 2015 11:53 pm

The Fibromyalgia Letter
5 January 2015 at 18:36
"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
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Re: How can I explain this condition to my loved ones

Postby Hannah24 » Tue May 26, 2015 12:03 am

Hi,

My son actually summed it up best for me when explaining it to someone else. He said "It's not that she can't do things but when she does it feels like running a marathon whilst having the flu". He's only 10 bless him and he understands my condition better than I do.

I've seen two other posts on here which might help you: Explaining Fibromyalgia to others who do not have it and The Gorrilla in the House.

The first was is a letter describing the condition which was sent to friends and family. There is a copy of it which you could use or even edit to make it more personal and then send them out. I haven't been brave enough to do that yet but hopefully one day.

The second is a fantastic analogy of the condition. It's very funny but also sad because it's true.

In some ways I am lucky that my husband is registered blind and because of this he has a good understanding of what a life changer it is. He also really understands how people are quick to judge because it's not on the ouside. Give a person a wheelchair or a guide dog and people are quick to offer support but when a person with a hidden disability walks into a room people just assume that everything is okay and don't give you any consideration. When I try to explain the condition to someone they either look at me strange because they've never heard of it, think I'm just being lazy, tell me to try the ususal unsuccessful techniques (like I wouldn't have tried them already), forget about it and then wonder why the next day I'm struggling or even worse compare my life to someone they might know with the assumption that we are all the same.

Hope this helps. Hannah xxx
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Re: How can I explain this condition to my loved ones

Postby Subee » Tue May 26, 2015 12:26 am

This is a blog post I did a while back. It seemed to help a few people who read it. I hope it may help u explain it to others. I'm still breathing.

"I can hear myself breathing. I hold my breath for 5 seconds, take stock for that moment. It's there. Still. I think my breathing, or my attention to my breathing woke it from its slumber. For a few seconds I couldn't hear it. I thought I would have a better start to the day but no, not today. Every waking moment is dealing with Pain who is an unforgiving piece of scum. Even my dreams are taken from me, harshly and without apology. It's stark reminder that I am not me any more. I mourn for the me that was happy, carefree and nice. The me that could take on the world and win. Now I am losing every battle. I have no pride, no humanity, no patience and no life. I have only Pain.

Let me introduce you to Pain. Pain this is Reader, Reader this is Pain. A capital 'P' for a name. That is what it is, a thing, not a person but an animal. A savage, rabid animal. He doesn't whisper in my ear or talk to me but shouts and yells, a barrier between me and the world. It's like he is standing in my face shouting. Every minute of every hour.

Pain is most definitely here now. You can't see him but if you pay attention you can see the effect he has on me. Like the wind. You can't see it but you see it bend the trees so you know it is there. You can see the debris it leaves after a storm, the dishevelled look of the land. Leaves strewn everywhere like clothes discarded and not picked up. Trees uprooted with their roots on show, vulnerable to the world. The violence and complete disregard for the world you live in and walk about in everyday. We can mend the world though and it doesn't happen day after day. We are slow at first, repairing the aftermath. Public transport is disrupted, roads are closed and barriers are put up to prevent you harming yourself or others. How long did it take you to go to work, go about your normal day? The endless list of things to deal with. The electricity isn't on because the power lines have been cut. The supermarkets are only selling minimum stock because the frozen food, the food you can store for an emergency meal is ruined or the fresh produce isn't getting through because the roads are still blocked. There is no one to call to help because the networks are down. We pull together because it affects us all. We help each other and agree the weather 'is awful'. We bond over how long it took you to get into work and 'have you heard?' stories.

Imagine the mess we would be in if we dealt with this everyday. Everyday a storm. Waking up to it. Shouting in our faces. Whipping us and buffeting us as we try to carry on as though it isn't happening. Starting from scratch with no reserves in the freezer because they were used up a long time ago. Stop and think of the last storm or high wind you walked in. Think how you felt when you came in. Windswept and tired? Cold and dishevelled? Glad to be in the warm and comfort of your home? Peace.

I can tell you, like so many others; It is exhausting battling the storm everyday. If you want to, you can see Pain just like you can see the wind. That person you tutted at walking slowly, their own Pain shouting at them because the Pain causes fatigue. Not just a 'I haven't slept very well last night' kind of tired but a deep down yawn that makes it an effort to breath. When you walk your legs are like lead, heavy and hard to move and you feel like you can't catch your breath. Pain, just like the storm leaves telling signs it is present or has been. A dishevelled look, vulnerable, wincing, a sharp in take of breath, being slow to react or impatient. Too tired to even yawn because their reserves were used up a long time ago. Not listening properly or not wanting to listen to you. Barriers go up. "Just keep yourself to yourself and it will be better, you won't have to explain yourself, just get through today." Counting down each minute until you can go home or be by yourself. Repeating yourself because you forgot you already asked this or said that.

There isn't much you can do even if you can see the signs apart from be there if we need you. Understand that as much as we bore you with our pain it is real and we wish we were just bored by it too. Understand that some days we won't want to speak or join in but you being there means we are not alone. Understand that sometimes we won't hear what you say first time, not because we are not listening but because you are competing with Pain who is shouting for my attention as well. Understand we may be slower and we are not doing it on purpose, it's just that Pain has left us with little or no resources to be as fast as we used to be. Understand that we are still who we always were, we just can't always be present because we are clearing up after the last storm whilst another starts. Understand that we didn't want this and wish it would stop. Understand that its not that we don't want to get better but that trying that new thing you heard about feels like just another thing to have hope in that will disappoint because its so bloody hard to keep trying. Understand we still love you and wish we didn't snap at you. It's just so hard to be the normal we used to be when our new normal is dealing with the storm called Pain." Xxx
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