One to show the non believer's

All your fibromyalgia experiences, questions and answers.

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One to show the non believer's

Postby shazq » Thu Jul 23, 2009 4:27 pm

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.

My life has been turned upside down, i dont really understand it myself,
so i will try my best to explain to you how my body has changed and how
some things that have never affected me before do now.

Below is just a very short view into part of my/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.

Clumsy- I know there are days when you think i am clumsy, i really dont
mean to be, i know i drop things but it does not give me pleasure doing it,
My hands dont want to grip things, all the strength has gone, wish i knew where.
My legs feel like they have been set in concrete and i have to drag my legs.


Lunch- Peeling veg is getting impossible as i cant grip the knife, this might seem
a small thing to you but its a big thing to me. I want to prepare the
dinner for you all, i am not getting out of it, its the pain stopping me.
I might blame the onion for the tears running down my face but i dont
like to keep showing you my weaknesses, i feel useless.

This heat- is killing me, i cant cope with it, i know i used to be a sun
worshiper but now my thermostat is broke i cant control my temperature.
Dont keep telling me to wipe the sweat from my face, i know its there
do you think i like people looking at me.
the fatigue is so bad all i want to do is sleep but it`s so hot so i need the fan
on me all night, sorry if this bugs you, i dont do it to annoy you.

This cold weather- is really getting to me, i cant seem to get warm
my bones really hurt today, that might sound strange to you, but its
real to me. My fingers and toes hurt with pins and needles, oh why
is all this happening to me.

IBS-bloats me and makes me feel sick,no 2 days are the same one day
i might be constipated and in bad pain but the next i might be on the
loo 5 times. I cant help that i have had to change my eating habits,i
have to learn what is best for my stomach to handle.


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.
Written by Shazq.
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.
Fibromyalgia Awareness Day May 12TH.
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Re: One to show the non believer's

Postby gillshutt » Thu Jul 23, 2009 5:36 pm

Have stickyed it so it doesn't disappear down the board. Thanks Shaz.
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Re: One to show the non believer's

Postby Gracie » Thu Jul 23, 2009 7:25 pm

I think this has to be the best thing i have read yet i would love to have a copy of it last nite when i went to a and e i would actually love to send a copy to the doc who treated me so badly i say it every day its my body and nobody knows what it is like to be in my body i wouldnt wish it on my worst enemy maybe just taht doc last nite to be me for a day or maybe a week as he was so mean.

That meant alot to me so thank you so much for putting it up.

love Gracie xoxox :grouphug:
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Re: One to show the non believer's

Postby princess » Thu Jul 23, 2009 7:57 pm

Wonderful honey just wonderful - keep it to the top!
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Re: One to show the non believer's

Postby juliem » Thu Jul 23, 2009 9:44 pm

This really does sum it all up. I'd love to print it off to give to my family to say what I cannot say.
Thank you.
Julie
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Re: One to show the non believer's

Postby jay79 » Fri Jul 24, 2009 3:17 pm

brilliant post...what i would like to say but i cant.
really uplifting to know people can read this and think twice before they judge us
jayne
x
:clap:
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Re: One to show the non believer's

Postby iwh54 » Fri Jul 24, 2009 7:08 pm

That is great,perhaps we should take this to the numerous medicals we have to go through just to prove we are ill. It might help some of the non believing doctors to understand what this illness does to us. One day we are O.K, the next few days we cant manage to do anything useful.
:clap: :clap: :clap: :clap: :mrgreen: :mrgreen:
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Re: One to show the non believer's

Postby shazq » Fri Jul 24, 2009 9:13 pm

If you have a non understanding GP, Then print it off and give it them to read, it might help them to start to understand how we are feeling.
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.
Fibromyalgia Awareness Day May 12TH.
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Re: One to show the non believer's

Postby hamstergirl » Sat Jul 25, 2009 10:04 am

Thats amazing, it describes us perfectly

have copy and pasted this onto microsoft word and printed it off

I'm going to carry this around with me just incase i need to describe myself to anyone

Thanks
xxxx
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Re: One to show the non believer's

Postby Happygolucky85 » Sun Jul 26, 2009 8:59 pm

That is brilliant

xxx
Take each day 1 step at a time
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Re: One to show the non believer's

Postby worf » Sun Jul 26, 2009 9:39 pm

:clap: :clap: :clap:
Nice one Shaz, this should be compulsory reading for all non belivers. ( my boss as well )
How many doctors does it take to get a diagnosis? 11!!!!!!!!!!!!!
Learn when to stop, What ever it is will keep for another day!
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Re: One to show the non believer's

Postby smiler22 » Mon Jul 27, 2009 9:02 pm

that is great. well done. i still get many people who look at me in a strange way. if they suddenly see me in a wheelchair they look at me like im an alien. i often say if you havent gotthe time to ask me whats wrong but just stare at me why should i take the time to tell you what wrong.
live life to the full as life is what you make itxx
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Re: One to show the non believer's

Postby Mamush » Tue Jul 28, 2009 5:13 pm

This is fabulous, thank you. Is it ok to copy and paste it so I can print it out for those who need it?

Jill
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Re: One to show the non believer's

Postby shazq » Tue Jul 28, 2009 5:43 pm

Yes, print it out as many times as you like, it`s one of the reasons why i put it up, just to show the non believers it`s not all in our heads.
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.
Fibromyalgia Awareness Day May 12TH.
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Re: One to show the non believer's

Postby abelarde » Wed Jul 29, 2009 7:00 am

This is REALLy GREAT!!! I was thinking how to explain to my husband who works overseas about FM. I can't wait to show him this post as it is so close and so real to us.
Great job, Shazq :hugs:
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