|Letter to Normals
|and who want to get to know/Understand me.
I was born With EDS3 / meaning I am extremely hypermobile, my joints,
muscles, skin etc… are not stable, constantly moving about and leaving
me with a predisposition to CWP ( chronic wide spread pain ) and extreme
fatigue (CFS/ME), not to mention IBS and Gastritis, along with having
Severe Raynauds just to top it off. I might look normal ( what is normal ?
<VBG>) but its that, that I suspect was behind the reason It has only taken
decades of these mysterious, often crippling symptoms and bouts of
misery from it all, to finally be diagnosed and have my problems
recognized/understood. I borrowed the following letters from another site
and Whilist its not eactly the same, it can give a pretty good idea of how
one copes with being in pain and how not to put or have unrealistic
expectations on/of me , I might look ok when you see me out but you can
bet I am in bed for a few days after my excursion recovering ......and if you
think well why do I bother if that is what happens, well its because I can't
let life pass me by or stare at the house walls 24/7.....
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 ME (CFS- Chronic Fatigue Syndrome) and EDS /
Chronic Pain . 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
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
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 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…
Copyright of www.fibrohugs.com Written by Ronald J. Waller
Open Letter To Normals.
Explain your condition to the healthy people in your life.
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 that 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 that 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
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
Fibro 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
I depend on you - people who are not sick - for many things.
But most importantly, I need you to understand me.