looking for an old post - need help

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looking for an old post - need help

Postby princess » Thu Apr 29, 2010 5:09 pm

HI

Do any of you remember a post from one of our members - it was like a letter explaining to the normal person about how we feel and the pain.
If you can find it will you let me know
thanks
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Re: looking for an old post - need help

Postby susie ray » Thu Apr 29, 2010 8:07 pm

It was lady manvers I think who posted it, I copied it to show my doc but Iv lost it as well.
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Re: looking for an old post - need help

Postby princess » Fri Apr 30, 2010 2:15 pm

Yip dont seem to be there any more - ill ask the mods?
Thanks
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Re: looking for an old post - need help

Postby hamstergirl » Fri Apr 30, 2010 2:38 pm

Princess - ive printed off for my family and friends 'one to show the non believer's'. I'm not sure if its that your looking for.

Sorry i dont know how to put a link up so couldnt do it for you.

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Re: looking for an old post - need help

Postby princess » Fri Apr 30, 2010 3:09 pm

That maybe it - i will keep looking through the old posts - any idea who posted it?
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Re: looking for an old post - need help

Postby princess » Fri Apr 30, 2010 3:13 pm

found this - its lovely but not the one i am looking for at all.
But thought i would post it



A thief visited my house today
and stole a most precious thing away
He tired to take away my dreams
and give me uncertainty in its place
But I've learned that tomorrow is promised to none
so I accept that uncertainty is a part of life's pace

He took away my proud walk
and left me a shuffling gait
But he will never stop me from going forward
Even if I have crawl to get there

He took my blessed sleep
and left me painful wakeful hours
So I use them to create beauty in art and prose
and fulfill long forgotten dreams

He took my memory
and left me with blankness
I've learned what a post it note is for
and that its ok if my recall is not perfect

He took my body that could dance all night
and left me one that can't dance anymore
But he will never stop the dance of my spirit

He took away most chances for a mate
As most mates can not live
with the now damaged shell
I've learned that real love, comes from
one who loves me, not my form

He tired to take away my dignity too
but I will as soon see him rot in hell
before I give him that satisfaction

He took my blissful ignorance
and left me starring cold hard reality in the face
and it has made me stronger

He took away a million and one little things,
I did without thought and left me a life where
I have to think to do any of them at all
Which has made me appreciate the
little things that make up our lives

He took from me my Health
but he cannot take my soul
He cannot have my spirit
As I will never give him the victory
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Re: looking for an old post - need help

Postby princess » Fri Apr 30, 2010 3:17 pm

Not it either but a very good article from Shaz.




If you were born with healthy genes, you may know me but you don't
understand me, 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. I hope by reading this it will give you an understanding into our world.

Below is just a very short view into part of our world.

FMS is not the newest fad disease. In fact, it isn't a disease at all.
it is 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.

The many physical and emotional problems associated with FMS are not
psychological in origin. This is not an "all in your head" disorder.

Fibromyalgia is a common condition characterized by long-term pain and
tender points in joints, muscles, tendons, and other soft tissues.
Fibromyalgia has also been linked to fatigue, morning stiffness, sleep problems,
headaches, numbness in hands and feet, depression the list goes on and on.

I think trauma triggered mine.

My pain- is not caused by inflammation.
I can not work with my pain, it`s not because i dont want to
It`s because i dont know where my pain will be i.e;Today it is in
my shoulder, but tomorrow it may be in my legs or even in my arms/hands.
Sometimes i feel as if it`s my whole body.
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.

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,
it isn't because I don't want to. I am, most likely, paying the price for stressing
my muscles beyond their capability.

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.

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
curtains or listen to your child scream. I really can't stand it.
this gets very frustrating, noises that have never bothered me before
do now.

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.

My depression - Yes, there are days when I would rather stay in bed
or in the house or even want to die.pain can cause depression.
Your sincere concern and understanding can pull me back from the brink,
yet snide remarks can tip me over the edge.
I will improve, i dont know when, it might be something little that
will bring me out of it. Its not your fault and its not mine.

My sleepless nights - Don't be put of by the looks of me in the morning, i might look
like a zombie, this is because i have not had much sleep, my brain wont
switch off, i have 100 and 1 things going around and around in my head,
none of it makes since, i used to sleep 8 hours a night, now i am lucky if
i sleep for 2 hours at a time.

Sleepy days- Some days i feel so tired, my body weights a ton, my whole
body aches, i have no energy, even though i have been in bed all night i
am going to have to go back to bed again, please understand how i feel,
i don't want to live my life in bed, it is not my choice, the choice has been
taken away from me.

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.
My hands go numb and i drop things, i don't seem to know how to control my
own body, this is not a good feeling.

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 appetite is broken, and nobody can tell
me how to fix it, if only there could be that magic pill. I dont like my body
like this and i cant help the fact that i crave food all the time, i try my best
but my best is not always good enough.

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. In fact, the good
days are what keep me going.I try to do what i can as i never know when
the next flare will return.

My medication- I have had to try many different medications, i seem to be
very sensitive, not sure why. Please bare with me if i seem ratty the meds
cause all types of symptoms, ie: sickness, headaches, drowsy, legs/arm pains.
Some meds can take up to 4 weeks to kick in but it only takes a few days
for the side effects to kick in.

Cravings- Please dont think i am being greedy, its not my fault its the side
effects of my meds. I try to resist but sometimes it gives me pleasure to
eat that chocolate bar in the fridge, i try to have more control over the
cravings and to eat healthy snacks but you always see me with the chocolate
bar.

Even those who suffer from FMS are not alike.
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, we all
have different pain levels. A lot of the same symptoms yes
but also some different.


I hope this helps the non believer`s to understand just a little of what we
Go through on a day to day basis.

Hope i have not board you with this long post.
Thanks for reading.SHAZ XX
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: looking for an old post - need help

Postby denys » Fri Apr 30, 2010 9:43 pm

How very true :clap:
Denys

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Re: looking for an old post - need help

Postby hamstergirl » Fri Apr 30, 2010 9:48 pm

Hello princess

the one I mentioned was posted by Shazq on 23/07/09 and it was posted in Living with Fibromyalgia.

I'm not very good on computers so can't do a link. Hope it helps.

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Re: looking for an old post - need help

Postby FluppyPuffy » Sat May 01, 2010 2:57 pm

Have found this, if might be what you're looking for

http://www.ukfibromyalgia.com/forums/viewtopic.php?f=2&t=6277&p=63542#p63542
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: looking for an old post - need help

Postby princess » Sat May 01, 2010 5:18 pm

NO thats not it either - i keep thinking it was about the time of, now what was her name?????
The girl who was carer to her mum and sister and her profile had her with a sort of wine coloured dress - oh gosh i cant remember - it was more like a letter to someone about how we feel.
Wish i had kept a copy of it.
But keep looking folks as your comming up with lovely poems about our illness.
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Re: looking for an old post - need help

Postby hamstergirl » Sat May 01, 2010 6:32 pm

Is it titled 'Poem - anon' - lullabybunny1 posted it in February.

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Re: looking for an old post - need help

Postby princess » Sun May 02, 2010 12:31 pm

Could be but her posts are no longer available.
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Re: looking for an old post - need help

Postby princess » Sun May 02, 2010 12:46 pm

When you see me - This is the poem i was looking for :-






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.
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Re: looking for an old post - need help

Postby minnie7126 » Tue May 04, 2010 12:06 pm

hi
i may be wrong but the letter you are possibly loking for is by jackie mills posted on the 29th of march called a letter to mirium stoppard (dr) its a very good letter , hope this is what you have been looking for

minnie x :D
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