Giving in to the condition?

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GemmaRowlands

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I was talking to a friend a week or so ago, and telling her about how I was struggling to get out of bed. She accused me of "giving in to my condition" and I will admit that I took offence to that at first.

But it made me realise just how little understanding there is about it, and how I would really like more people to know just what it is like (without actually having to have the condition themselves, of course).

So, can anybody here help me with a way to describe life with fibro in a way that could get across that I am NOT being lazy or uncooperative when people suggest meeting up or other social plans?

Help here would be most appreciated, thank you very much!
 
The best thing is to educate such a person on your condition. Most people are judgemental due to ignorance and this can be infuriating. It also pays to be assertive and stand your ground to make people know that you have a valid reason for your inactivity. Its not possible to live through this life without a thick skin both physically and psychologically. Don't become bitter but be more determined to prove them wrong and to stand up to FM by refusing to have a victim mentality. Best regards.
 
I've tried some light activities like washing dishes, sweeping floor, walking for 10 minutes, driving and climbing stairs. Yes. At first, I didn't feel pain at all but after some period, I started trembling. My whole body started ache here and there. I am forced to rest by my own body. And at night, it feels like hell. I can't even sleep due to extreme pain. This sickness is invisible. We cannot compare this sickness with any terminal illnesses because their symptoms are visible and can be detected by medical equipment. We only can be detected by rheumatologist. Even me, after 4 years of pain still not referred to rheumatologist. The doctors said my symptoms are not strong enough to be referred to rheumatologist. While I feel like dying bearing with this pain. So, it is not important for you to prove to anybody about your sickness. The most important thing is you should find the best way to reduce pain and depression (if u have). Find activities that u can do and don't overdo. I hope my answers help. Pray for all of us, that we stay strong in coping with this condition.
 
I am not sure if there is much we can say to make others understand. Hopefully you have understanding friends, that you don't need to convince. I bet your friend was only trying to help. I know that it is hard for me to look at my mom and complain about my fatigue or pain, while hers is visible. You can look at my mom and see her arthritis you can see her walk and tell she is in pain. So if she has a hard time getting up, no one questions it. If I talk about my fatigue, I get weird looks because I look *normal* and I am youngish. I just stopped telling people that didn't need to know.
 
Aside from my partner I have stopped telling my family or the few friends i have left...they aren't interested and can't see it because the only times i have ever seen them in the last 9 years is on better days when i could walk a bit and sit in a comfy chair ok.

No one visits me so they don't see me in my pjs every day and hobbling around.

If you want to inform people in your life more about fibro and how it affects you maybe try showing them a video i can recommend its called voices of fibromyalgia by Haullie Volker...it's only plays on windows not android so no good on a phone or tablet.

There is also so much info on the web and various forms of a letter for family or friends about the changeability of our illness. Maybe google letter describing fibro and you should find it.

Good Luck
 
I just found this


A LETTER FROM FIBROMYALGIA


Dear Miserable Human Being,


Hi, my name is Fibromyalgia, and I’m an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.


Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.) Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn’t ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me. I’m ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you’ll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You’ll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!


Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you’re just having a bad day”, or “Well, remember, you can’t expect to do the things you used to do 20 years ago,” not hearing that you said “20 DAYS ago”! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can’t remember what you were going to say next!


In closing, you’ve probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People with Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.


Remember, I’m stuck to you like Velcro – and I expect we’ll be together for the rest of your life.


Have a nice day!! (ROFL),
BRAINHEARINGCHILDB
 
The Letter To Normals

Hello Family,

Friends, and Anyone Wishing to Know Me,
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.

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.

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 wont 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....

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....

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 the burning and pain in my legs or arms is so intense 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.
I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. 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 laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand….

Sleep, when I do get some, 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.

And 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. And 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 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 love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. 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 love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? 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.

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. Please understand….

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



A Letter To the Normals

These are the things that I would like you to understand about me before you judge me ...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

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. If you want to comment on that, you're welcome.

Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing the five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something. Fibromyalgia does not forgive.

Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend

some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FM then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro.If something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don't expect me to rush out and try it. If I haven't had it suggested before, I'll take what you said and discuss it with my doctor.

Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.

I depend on you - people who are not sick - for many things. But most importantly, I need you to understand me.
 
Sorry if these previous posts are too long. Once i found them i couldn't resist posting them as they are so accurate.

Maybe they will help you and others explain to family and friends.
 
I just found this


A LETTER FROM FIBROMYALGIA


Dear Miserable Human Being,


Hi, my name is Fibromyalgia, and I’m an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.


Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.) Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn’t ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me. I’m ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you’ll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You’ll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!


Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you’re just having a bad day”, or “Well, remember, you can’t expect to do the things you used to do 20 years ago,” not hearing that you said “20 DAYS ago”! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can’t remember what you were going to say next!


In closing, you’ve probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People with Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.


Remember, I’m stuck to you like Velcro – and I expect we’ll be together for the rest of your life.


Have a nice day!! (ROFL),
BRAINHEARINGCHILDB

Wow, this is brilliant. I can't believe that I have never read this before! It sums up exactly what I feel as though I would like to say to my friends who don't believe that my condition is real, and maybe if they would take the time to sit down and read this, they might understand just a little bit more about what I am going through. Thank you for posting this, it is so helpful, and I finally think that I might be able to make them understand.
 
Glad if it helps. May i just ask did you recently get diagnosed with fibro as it says you are a relative of someone with fibro on your profile and in some old posts. i read....hope you don't mind me asking...just curious?
 
Look up the ten spoons ,it's about lupus but applies to Fibro just as well
 
Willow, thank you for posting that. If I can get my husband to take two minutes to read it maybe he will get a clearer view.

A quick reply is this fibromyalgia is invisisable to your eyes, if I where in a wreck, both legs shattered and doped up on pain meds you wouldn't think I was giving in, you would understand that I'm broken and healing. It is just a never ending cycle. Some days better then others.

If you catch the flu are you giving in or getting better?

It is invisable and long term. We didn't ask for it, we don't want it and we ask that if you can't understand it to please love us anyway. Please go enjoy your life, but don't make me feel even worse because I can't.

You stated you wish other could understand how it feels without having to feel it. I wouldn't wish this on my worst enemy, but I think if every doctor, loved one, friend and employer had to exsperiance just one day of my worst days they would view us all in a very different light.
 
Willow, thank you so much. At least I know that this pain is real.
 
This article has been really helpful to make people understand what it's like for me in my daily life: But You Dont Look Sick? support for those with invisible illness or chronic illness The Spoon Theory written by Christine Miserandino - But You Dont Look Sick? support for those with invisible illness or chronic illness

The author suffers from lupus, but it is similar with any invisible chronic condition. I refer to it a lot now... When I tell my partner I don't have enough spoons to do this or that or I'm out of spoons for the day, he understands. It's hard for people who are healthy to get what it's like to live with chronic pain. Having to plan ahead for every little thing down to whether or not you want to shower that day or make it to the grocery store, they don't have to do that. We all have different limitations of course, so it's different for everyone.
 
I find that usually it takes a while for people to absorb all the aspects of fibromyalgia. I know it's taken me a long time, and I'm the one experiencing the symptoms!
 
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