Not written by myself but I relate in a very large way
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.
*by Jeanne Merrifield Graves, an FM Network Facebook Member
Showing posts with label how people perceve fibro. Show all posts
Showing posts with label how people perceve fibro. Show all posts
Tuesday, 8 November 2011
one for the nonbeliever
If you were born with healthy genes, you may know me but you don't
understand me. I was not as lucky as you. I inherited the predisposition to
chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia
(FMS) after months, years or even decades of mysterious physical and
emotional problems. Because you didn't know how sick I was, you called me
lazy, a malingerer, or simply ridiculous. If you have the time to read on, I
would like to help you understand how different I am from you.
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
1. FMS is not the newest fad disease. In fact, it isn't a disease at all,
and it isn't even new. In 1815, a surgeon at the University of Edinburgh,
William Balfour, described fibromyalgia. Over the years, it has been known
as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do
not have a known cause, but they do have a specific set of signs and
symptoms which, unfortunately for the patient, take place together.
Rheumatoid arthritis and lupus are also syndromes.
2. The many physical and emotional problems associated with FMS are not
psychological in origin. This is not an "all in your head" disorder. In
1987, the American Medical Association recognized FMS as a true physical
illness and major cause of disability.
3. Syndromes strike life-long athletes as viciously as they do couch
potatoes. They can be disabling and depressing, interfering with even the
simplest activities of daily life.
WHAT YOU SHOULD KNOW ABOUT ME
1. My pain - My pain is not your pain. It is not caused by inflammation.
Taking your arthritis medication will not help me. I can not work my pain
out or shake it off. It is not even a pain that stays put. Today it is in my
shoulder, but tomorrow it may be in my foot or gone. My pain is believed to
be caused by improper signals sent to the brain, possibly due to sleep
disorders. It is not well understood, but it is real.
2. My fatigue - I am not merely tired. I am often in a severe state of
exhaustion. I may want to participate in physical activities, but I can't.
Please do not take this personally. If you saw me shopping in the mall
yesterday, but I can't help you with yard work today, it isn't because I
don't want to. I am, most likely, paying the price for stressing my muscles
beyond their capability.
3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may
not remember your name, but I do remember you. I may not remember what I
promised to do for you, even though you told me just seconds ago. My problem
has nothing to do with my age but may be related to sleep deprivation. I do
not have a selective memory. On some days, I just don't have any short-term
memory at all.
4. My clumsiness - If I step on your toes or run into you five times in a
crowd, I am not purposely targeting you. I do not have the muscle control
for that. If you are behind me on the stairs, please be patient. These days,
I take life and stairwells one step at a time.
5. My sensitivities - I just can't stand it! "It" could be any number of
things: bright sunlight, loud or high-pitched noises, odors. FMS has been
called the "aggravating everything disorder." So don't make me open the
drapes or listen to your child scream. I really can't stand it.
6. My intolerance - I can't stand heat, either. Or humidity. If I am a man,
I sweat...profusely. If I am a lady, I perspire. Both are equally
embarrassing, so please don't feel compelled to point this shortcoming out
to me. I know. And don't be surprised if I shake uncontrollably when it's
cold. I don't tolerate cold, either. My internal thermostat is broken, and
nobody knows how to fix it.
7. My depression - Yes, there are days when I would rather stay in bed or in
the house or die. I have lost count of how many of Dr. Kevorkian's patients
suffered from FMS as well as other related illnesses. Severe, unrelenting
pain can cause depression. Your sincere concern and understanding can pull
me back from the brink. Your snide remarks can tip me over the edge.
8. My stress - My body does not handle stress well. If I have to give up my
job, work part time, or handle my responsibilities from home, I'm not lazy.
Everyday stresses make my symptoms worse and can incapacitate me completely.
9. My weight - I may be fat or I may be skinny. Either way, it is not by
choice. My body is not your body. My appestat is broken, and nobody can tell
me how to fix it.
10. My need for therapy - If I get a massage every week, don't envy me. My
massage is not your massage. Consider how a massage would feel if that
charley horse you had in your leg last week was all over your body.
Massaging it out was very painful, but it had to be done. My body is
knot-filled. If I can stand the pain, regular massage can help, at least
temporarily.
11. My good days - If you see me smiling and functioning normally, don't
assume I am well. I suffer from a chronic pain and fatigue illness with no
cure. I can have my good days or weeks or even months. In fact, the good
days are what keep me going.
12. My uniqueness - Even those who suffer from FMS are not alike. That means
I may not have all of the problems mentioned above. I do have pain above and
below the waist and on both sides of my body which has lasted for a very
long time. I may have migraines or hip pain or shoulder pain or knee pain,
but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me, but if you still doubt my pain,
your local bookstore, library and the internet have many good books and
articles on fibromyalgia
*http://www.ukfibromyalgia.com/forums/
understand me. I was not as lucky as you. I inherited the predisposition to
chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia
(FMS) after months, years or even decades of mysterious physical and
emotional problems. Because you didn't know how sick I was, you called me
lazy, a malingerer, or simply ridiculous. If you have the time to read on, I
would like to help you understand how different I am from you.
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
1. FMS is not the newest fad disease. In fact, it isn't a disease at all,
and it isn't even new. In 1815, a surgeon at the University of Edinburgh,
William Balfour, described fibromyalgia. Over the years, it has been known
as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do
not have a known cause, but they do have a specific set of signs and
symptoms which, unfortunately for the patient, take place together.
Rheumatoid arthritis and lupus are also syndromes.
2. The many physical and emotional problems associated with FMS are not
psychological in origin. This is not an "all in your head" disorder. In
1987, the American Medical Association recognized FMS as a true physical
illness and major cause of disability.
3. Syndromes strike life-long athletes as viciously as they do couch
potatoes. They can be disabling and depressing, interfering with even the
simplest activities of daily life.
WHAT YOU SHOULD KNOW ABOUT ME
1. My pain - My pain is not your pain. It is not caused by inflammation.
Taking your arthritis medication will not help me. I can not work my pain
out or shake it off. It is not even a pain that stays put. Today it is in my
shoulder, but tomorrow it may be in my foot or gone. My pain is believed to
be caused by improper signals sent to the brain, possibly due to sleep
disorders. It is not well understood, but it is real.
2. My fatigue - I am not merely tired. I am often in a severe state of
exhaustion. I may want to participate in physical activities, but I can't.
Please do not take this personally. If you saw me shopping in the mall
yesterday, but I can't help you with yard work today, it isn't because I
don't want to. I am, most likely, paying the price for stressing my muscles
beyond their capability.
3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may
not remember your name, but I do remember you. I may not remember what I
promised to do for you, even though you told me just seconds ago. My problem
has nothing to do with my age but may be related to sleep deprivation. I do
not have a selective memory. On some days, I just don't have any short-term
memory at all.
4. My clumsiness - If I step on your toes or run into you five times in a
crowd, I am not purposely targeting you. I do not have the muscle control
for that. If you are behind me on the stairs, please be patient. These days,
I take life and stairwells one step at a time.
5. My sensitivities - I just can't stand it! "It" could be any number of
things: bright sunlight, loud or high-pitched noises, odors. FMS has been
called the "aggravating everything disorder." So don't make me open the
drapes or listen to your child scream. I really can't stand it.
6. My intolerance - I can't stand heat, either. Or humidity. If I am a man,
I sweat...profusely. If I am a lady, I perspire. Both are equally
embarrassing, so please don't feel compelled to point this shortcoming out
to me. I know. And don't be surprised if I shake uncontrollably when it's
cold. I don't tolerate cold, either. My internal thermostat is broken, and
nobody knows how to fix it.
7. My depression - Yes, there are days when I would rather stay in bed or in
the house or die. I have lost count of how many of Dr. Kevorkian's patients
suffered from FMS as well as other related illnesses. Severe, unrelenting
pain can cause depression. Your sincere concern and understanding can pull
me back from the brink. Your snide remarks can tip me over the edge.
8. My stress - My body does not handle stress well. If I have to give up my
job, work part time, or handle my responsibilities from home, I'm not lazy.
Everyday stresses make my symptoms worse and can incapacitate me completely.
9. My weight - I may be fat or I may be skinny. Either way, it is not by
choice. My body is not your body. My appestat is broken, and nobody can tell
me how to fix it.
10. My need for therapy - If I get a massage every week, don't envy me. My
massage is not your massage. Consider how a massage would feel if that
charley horse you had in your leg last week was all over your body.
Massaging it out was very painful, but it had to be done. My body is
knot-filled. If I can stand the pain, regular massage can help, at least
temporarily.
11. My good days - If you see me smiling and functioning normally, don't
assume I am well. I suffer from a chronic pain and fatigue illness with no
cure. I can have my good days or weeks or even months. In fact, the good
days are what keep me going.
12. My uniqueness - Even those who suffer from FMS are not alike. That means
I may not have all of the problems mentioned above. I do have pain above and
below the waist and on both sides of my body which has lasted for a very
long time. I may have migraines or hip pain or shoulder pain or knee pain,
but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me, but if you still doubt my pain,
your local bookstore, library and the internet have many good books and
articles on fibromyalgia
*http://www.ukfibromyalgia.com/forums/
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