This is a note from the web-editor I have the illness Fibromyalgia Syndrome. (FMS) and Pernicious anaemia (pronounced as per-NISH-us uh-NEE-me-uh) This is a condition in which the body does not make enough red blood cells due to a lack of vitamin B12 in the body. It usually occurs in people whose bodies have lost the ability to absorb vitamin B12 from food.
(So I thought it would be a good idea to cover poems on FMS as well).
*The poems below are referring to Fibromyalgia (FMS).*
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 anyhow I please. I can
cause severe pain or, if I’m 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. Try to have fun now!
I also took good sleep from you and, in its place, gave you 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 recovered from, or that car accident, or maybe
it was the 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 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.
You will be put on pain pills, sleeping
pills, energy pills, told you are suffering from anxiety or depression, given a
Tens unit, get massaged, told if you just sleep and exercise properly I will go
away, told to think positively, poked, prodded, and most of all, not taken
as seriously as you feel when you cry to the doctor how debilitating life is every
day.
Your family, friends and co-workers 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 they will say things like “Oh,
you are just having a bad day” or
“Well, remember, you can’t do the things you use 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, (I was hoping that I kept this part a secret), but I guess you already
found out...the ONLY place you will get any support and understanding in dealing
with me is with other people with 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.
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 fibro fog. 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, odours. 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.
Author's note: This letter is based on communications with people throughout the
world, males and females, who suffer from fibromyalgia. It does not represent any
one of the over 10,000,000 people with FMS, but it can help the healthy person understand
how devastating this illness can be. Please do not take these people and their pain
lightly. You wouldn't want to spend even a day in their shoes... or their bodies.
I have this awful caller who keeps popping
round
His name is Mr Fibromyalgia,
I really don't like him at all
He comes to poke my eyes and blow horns in my ears
He shouts nips and grinds my bones
Pins and needles dizzy spells what else has he in store
Sometimes he even sends electric shocks
Up and down my spine
He makes me jump and twitch he also makes me cry
Sometimes in the morning I am feeling quite good
He's not come calling yet
But he'll be back ready to attack
Then I have a familiar feeling
Tingling in my hands and afternoon fatigue
Then he comes a calling dancing on my head.
He's even at my hair now pulling from the roots
Strange irritation itching on my scalp
Why is he doing this with all these strange attacks?
Mr Fibromyalgia why do you have to be so mean
You're clever and deceitful
You're never ever seen
You confuse even the wisest of people
Doctors, family and friends
You even confuse me and you're with me most of the time
You are always hanging around
And I really don't like you at all
You're like a heavy weight wearing me down
Beating up my body and driving me insane
So Mr Fibromyalgia
Take all your troubles and disappear
you're not welcome here.
What is this thing that lurks inside?
It steals my body and my mind,
It leaves me with a fear so strong
I think and wonder, what is wrong?
I cannot walk the way I should,
I cannot run, I wish I could.
My eyes do not see like before,
I can't remember anymore.
What else will it steal in the morning light?
I cannot let it, I must fight.
How can I fight what I cannot see
This monstrous thing inside of me?
I must go on living and fighting this beast,
I will never give in, I must not cease.
Till one day I hear the words, so clear,
Like an angel whispering in my ear.
Fear not this beast; it will go away.
There will be a cure one special day.
So I fight and I wait and I don't give in,
I wait patiently for this miracle to begin.
I'll run to a field spinning round and round,
A field of violets that surround.
I'll lift myself up and run through the trees,
With a smile on my face, I'm Free, I'm Free!
When you see me on a "good day"
I may look as if nothing’s wrong,
But I, myself, am very aware
That the energy won’t last long.
You may think that I am lazy,
Or I just don’t like to try,
Or maybe I am just depressed,
When sometimes you see me cry.
You may not understand me,
It’s not easy to explain,
The struggles that I so often endure,
As I live each day in pain.
People may offer their opinions,
Thinking that I just need some advice,
Yet they don’t really comprehend,
Although they are trying to be nice.
What for some may be so easy,
Is almost impossible to me,
But because I may look healthy,
Many around me fail to see.
Perhaps it seems that I’m sloppy,
If I would only take more pride,
It’s sad that many don’t stop to see,
The person who is inside.
Planning things is so hard to do,
With each day uncertain fate,
The best that I can do is try,
And oftentimes I have to wait.
Life can be so stressful,
Even when you have your health,
Many people cannot even imagine,
Giving up their dreams and wealth.
While some people may worry,
How to fit everything into each day,
Others of us must struggle,
To even find a way.
So often misunderstood,
Some say that is must be "in my head,"
Yet there are days that it takes all I have
To even get out of bed.
You’d think that if one is weary,
Then why not just take a nap,
But the fatigue at times is so severe,
That nothing seems to help.
If exercise were the answer,
I would just move into a gym,
But intolerance and unbearable pain
Makes it difficult to stay trim.
That’s alright just take a pill--
Medications can always do some good,
However, sometimes the effects are far worse,
Oh, but how wonderful it would be if I could!
Living each day fighting defeat,
Knowing that you can’t give up and quit,
Even though it gets hard to do,
Find ways of accepting it.
I guess it would be a better thing,
If there were a little more support,
Everyone longs for acceptance and love,
As they keep their life in sort.
If I could make the world aware,
Help them to see things in a new light,
Be careful on what they base their view,
That they may receive a new insight.
Then maybe when someone else comes along,
Who is going through something unknown,
They may not feel so hopeless and scared,
And will know that they’re not alone.
Whether it be a terminal thing,
Or something chronic with no known cure,
There are many processes that will be faced
In this we can rest assured.
The grieving over loss is hard,
Whatever the loss may be.
What may be just a bump for you,
Could seem like a mountain to me.
Everyone responds so differently,
We all have our own ways to cope,
But the one thing that we must never do,
Is believe that there’s no hope.
For I faithfully trust in God above,
And no matter what the future may bring,
I know that He is holding my hand,
And He’s in control of EVERYTHING.
This page was last updated on 27/11/2009 14:42:04