Re: my day to day life

[Guest guest]

> I feel so alone right now. I am so lonely. I feel like I am not

> important. I hate feeling this way!

>

> ka

I understand how you are feeling ka. It took a long time for my

friends and family to accept that FMS is a real illness. Alot of my

co-workers still think I'm faking. It's not fair but they don't get

it. They just don't understand. You can write to me at any time if

you need to vent or just want to talk. (((((HUGS))))) P.

[Guest guest]

I think people are subconsciously afraid of illness.. afraid that they too could

be affected. People tend to lash out at what they don't understand and can't

see. I think this is the first cause of racialism and much other bigotry. Its

a sad human instinct to fear the unknown. I think people close to you

sometimes feel on the same subconscious level that if they ignore an unseen

illness in someone they love it may go away. None of this makes sense in a

logical discussion but it still exists. I am afraid I can't help with answers..

my own family and friends have accepted my illness for what it is.. I do

however have neighbours who get very angry with me just making my way painfully

to the car! They shout at me and leave anonymous notes. I am told to get

control of my life.

I manage to ignore this animosity most of the time.. I am on a very low dose of

anti depressive, perhaps that helps.

I hope you can manage to overcome your natural unhappiness about these ignorant

people. We all understand and are here for you.

Hugs

Penny UK

[Guest guest]

ka. We have all cringed a thousand miles in your shoes. I wish I could

take out my big wand and wave it around and we would all be healed... (it's a

pretty wand, too!) I feel like you do lots of days. Just know that somewhere

in the fog, out there, there are many of us for support and listening. Maybe

some day, when they all have a FLIPPIN' CLUE they will all be sorry and want to

massage our feet... and we won't let them. BWAHAHAHAHA. Sorry - my evil side

must be out on the computer tonight.

Hang in there. Seriously. I truly know how hard it is. I can literally

medically prove this back to when I was 8 years old. The depression and pain

and everything that goes along with that are more than we can tolerate

sometimes. Adding arrogant and insufferable idiots to that mix don't make it

any easier.

Lynn

my day to day life

Every day I have to live threw somebody telling me that I am a

hypocondreact. I must be faking. I need to suck it up. I am fat and

am using fibromyalgia as an excuse to get out of doing things, or I

am using fibromyalgia so I dont have to work. I wish for one second

these people would stop take off their blinders and see the big

picture. Fibromyalgia is real! Its not a figment of my imagination.

Im not crazy! I wouldnt wish FMS on anyone! So why would I act like I

have it if I didnt. Why would my doctor who I have been seeing since

I was 12 tell me I have this if I didnt. I just dont understand. why

are people so mean? I am so depressed right now. I feel fat and like

I have to justify why I cant do certain things, and even when I do

explain I feel like everything I say falls on deaf ears. I shouldnt

have to explain myself, and I shouldnt feel like nobody believes me.

I feel so alone right now. I am so lonely. I feel like I am not

important. I hate feeling this way!

ka

1. While it is wonderful to share our experiences with everyone on the list as

to what treatments do and don't work for us, pls always check with your dr.

Some treatments are dangerous when given along with other meds as well as to

certain health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't

be afraid to ask for help. It is the first step to trying to make that

situation better.

Have a nice day everyone.

[Guest guest]

I second all of these comments. It's true. No one can truly understand

what we are going through unless they experience. It's the human condition

really. But, can I exactly understand the pain of another disabled person?

Not really--because in some cases the disability is not 100% visable. If

you have no legs, that's visable, people usually help you. If your legs

hurt so bad you wish you didn't have them, no one notices, because the signs

of pain and injury are internal. You can necessarily blame everyone 100%,

but it's okay to become frustrated, angry, and upset. That's your right as a

feeling human being. I'm young, only 22--but have had this disease since my

2nd year of college. I was working through a competitive private school to

become an English teacher. This is no easy task anyways, but with this type

of illness it was terrible. I had about 11+ surgeries through these last

three years of college and throughout all the hours I had to do in public

schools, including full time student teaching for no pay. I walked in the

snow and rain to school with open incisions and worked through every bit of

pain. To be honest, it was hell. I was in terrible amounts of pain much of

the time, but the pressure from teacher's, classmates, parents, and myself

made me push myself harder than I thought I could push myself. There was no

option of not doing something to me regardless of how many times I had to

re-dress a surgerical wound, or of how much it hurt to sit in those hard

class room seats, or how difficult it was to remember what I'd learned when

I was on so many meds. and in so much pain.

Much of this is due to my own stubborness, but much of the pressure I felt

was from the outside world. There is a lack of knowledge out there about

illnesses, diseases, and situations like ours. I eventually learned that I

must put my pride to the side and that I must educate others about the

difficulties of living like this. It has continued to be difficult, but

after I started being open about my disease, rather than trying to hide it,

I have found a couple people along the way who have been supportive and who

have been advocates on my behalf, when I couldn't do it.

So, there is hope. But, it's not easy. It takes a lot on our parts to not

only live through this, but to educate others about it. I hope that every

time I put my personal experience out there, that someone else won't have

to.

Good luck to all!

D

>

>Reply-To: Fibromyalgia_Support_Group

>To: Fibromyalgia_Support_Group

>Subject: Re: my day to day life

>Date: Sun, 15 Aug 2004 23:40:59 -0500

>

>At 08:32 PM 8/15/2004 +0000, ka wrote:

> >I have to justify why I cant do certain things, and even when I do

> >explain I feel like everything I say falls on deaf ears. I shouldnt

> >have to explain myself, and I shouldnt feel like nobody believes me.

> >I feel so alone right now. I am so lonely. I feel like I am not

> >important. I hate feeling this way!

>

>ka,

>People are like that. It's sad, but true. I got fired from my job because

>of it. I was 5 minutes late because I just couldn't drag myself out of bed

>that morning, and when I did I had to have a hot bath to get me moving. I

>was out of FMLA time, and I'd suspected for a while that they were wanting

>to get rid of me. Every year they have reviews where you sit with the

>supervisor and discuss your performance of the past year, and they never

>did that with me. Also, I kept asking for credit for the extra classes I'd

>taken for my job, and I didn't get credit for that, either. I knew it was

>just a matter of time. I tried my best to be the perfect employee.

>Unfortunately, I'd fall asleep at my desk, and sometimes I'd spend my lunch

>hour sleeping in the " quiet room " . I had my palm pilot alarm set to wake me

>up, but I'd sleep right through it, and they'd have to send someone to wake

>me up. When I told them I was sick they refused to believe me. I couldn't

>walk standing straight, I'd hunch over because I was in so much pain. I

>couldn't sit at my desk in " normal " positions, and would sometimes sit with

>my feet over my head and the keyboard in my lap. They just thought I was

>being weird, and when I told them I was hurting they thought it was just an

>excuse to get out of work. The walls of my cubicle were papered with

>commendations from customers I'd helped, and I received special awards for

>my work, but in the end it didn't make any difference.

>

>cyn

>

>

>

> cyn

>

>clmerritt@...

> " Not bad for my first time with a gun. I shot that sucker right in the

>gumpy. "

>-J. Evaovich

>

>

>

[Guest guest]

Hi D,

You have been through so much my dear. I'm so happy that you found us.

Your experiences will help others I am sure. It's so difficult to get

to that point in life where you stop caring what others think... but

it's pretty much the place we have to find somehow. After all my

therapy, I'm finally at a place that I can sit back and say ... well...

these are my limits and that's that. If others aren't happy with that..

oh well... that's their issue. It is our responsibility to ourselves to

let others know what our limits are though.

When people ask me to do something that I'm not sure I'm capable of

accomplishing... I tell them straight. I'm sorry, due to my illness and

physical limitations, I would not be able to do what you are currently

asking of me. Then proceed to tell them what I CAN do. I don't always

say no... but I do let them know that if they can be happy with what I

AM capable of... then I will be happy to help.

We have to be responsible to ourselves, our health , and our

limitations. Those that can't understand have no business in my

personal life. Family or not. We have to take an assertive (not

aggressive or passive-aggressive) stand and not waiver. Otherwise we

end up suffering and those that asked us for help believe we are

unreliable or worse. Communication solves every problem... The trick it

for us to learn how to convey our messages, our needs, and our limitations.

Yes.. another long-winded e-mail from me ... hehehehe.. sowwie :-)

loving hugs,

Norah

Norah Bleazard - Burlington, Ontario Canada

www.bleazard.net ~ www.janorlites.com

E-MAIL=

norah.fibroyahoo@...

CHAT=

MSN = black_dak_98@...

Yahoo = drazaelbn

AIM = black98dak

ICQ = 105346330

Fibromites_Fighting_Weight:

http://groups.yahoo.com/group/Fibromites_Fighting_Weight

http://fibromites.ath.cx

DS D wrote:

>I second all of these comments. It's true. No one can truly understand

>what we are going through unless they experience. It's the human condition

>really. But, can I exactly understand the pain of another disabled person?

>

>

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