For many people living with this chronic pain disorder it is frustrating because we live in silence.

I live in silence because I don’t want your pity.
I live in silence because I don’t want you to look down at me.
I live in silence because I know you can’t fully understand.
I live in silence because people make me think that they really could care less.
I live in silence because I don’t like admitting I am disabled.
I live in silence because you once referred to me as lazy.
I live in silence because you once told someone it was all in my head.
I live in silence because you tell people I’m not really disabled.
I live in silence because people look at me like I am ok when I am not.
I live in silence because you don’t take the time to get to know more about me.
I live in silence because I’m afraid to let people know the truth.
I live in silence because I am no longer the person I once was.
I live in silence because I’m afraid to be sad, you make think I am weak.

These are just some of many reason’s more people do not share what it’s like living with Fibromyalgia.
Just because I “LOOK” ok does not mean that I am.
I am in pain everyday, some days so severe I can not even be touched.
People’s voices, sounds and one of my favorite things MUSIC now hurt my ears.
If you could “SEE” my pain I would look bruised all over my body.
Along with Fibro come Chronic Fatigue Syndrome, I have troubles sleeping, staying asleep and just getting to sleep.
I am on a drug regimen of over 7 different pills a day, and the one drug that does help my pain to a larger extent in NOT covered by the Ontario Disability Program so I must take a drug that barely works instead.
I cry myself to sleep on a regular basis because some people just don’t get it.
They don’t understand just how much pain this disease causes me and have no trouble referring to me as lazy or a bum who just does not want to work.
BUT what you do not see is me actually WORKING MY ASS OFF to raise a child…with that comes many responsibilities.
I cook, I clean, I bath cloth and change him. I take care of myself and my home.
I pick up after more then one person and YOU may not see that as work but to me it’s excruciatingly painful just to do those things.

So next time you want to pass judgement on me, look down on me, talk about me behind my back GET THE FACTS!
If you have no clue what your talking about shut your face because your not doing anyone any favors.
It’s people like you who make people like me SUFFER IN SILENCE!

Moaning and groaning about it each and every day only takes you back.
Life should be about moving forward not backwards, and until you accept the fact that there are just some things in life that can and will NOT change you will be stuck in a horrible cycle of self pity.

I’ve heard many stories of people saying “Oh yeah this person all they do is complain about how much pain they are in and how they can’t do this or that because of their illness” THOSE people have not yet accepted that they have that illness and are living in the “PITY ME PARTY HAT“.

YES I have days where I will actually complain about how awful I feel at that moment, But you will not catch me going on and on and on and on and on about it, Not now….before when I was still in denial yep but not now.

I do not seek the attention of others, I do not need you to feel sorry for me I can do that pretty good on my own.

Many people do not even know I live in chronic pain, Why? because I don’t let on.
I’ve accepted the fact that for the rest of my live I will be in pain everyday, I have fibromyalgia among a few other things….I’ve accepted the fact that these things will not just magically go away.
There is at this time NO cure for Fibro and I am ok with that….because I’ve accepted it.

So instead of crying and moaning and groaning, so some soul searching and say to yourself .. “OK this is how my life is now going to be, I accept that and now I will live each day the best I can”.
Once you do that I promise things tend to look a little more brighter at the end of that tunnel!

Sadly with this precious joy I’ve become overwhelmingly saddened.
I’ve not gotten over the morning sickness yet and truly have begun to hate it when people ask me about it…like there is no polite way to say “yeah still barfing my fuckin guts out!”
I think whats worse is everyone seems to think something is abnormal about me because it never happened to them so I must have something weird going on with me….and to be honest I do and I am pretty sure my health problems and emotional strain play a big part of why I can’t seem to get rid of this puking all the time.

Normal/Healthy people have more “healthy” pregnancies I am not as normal or as healthy as I would like.
Dealing with the physical pain of Fibromyalgia and the emotional stress of PTSD has become one of my biggest challenges.
With the help of medication I was able to keep it pretty much under control….As many know pills + pregnancy = bad.
So I was taken off all by 1 of my drugs and was no even offered something to help with it.

I did what I had to do to keep my baby and keep it safe and healthy, But in doing so I think I am doing the polar opposite!
I am not sleeping right at all, I have a couple days of good sleep then go a week with poor sleep, I am only eating once a day and when I do manage to eat more often it serves me no good as I bring it all back up.

In the first few months of my pregnancy I lost just over 6 pounds, which isn’t totally uncommon.
And now at 19 weeks I have just gained that 6 pounds back.
Don’t get me wrong I am fat so if I don’t get any fatter I will not complain…lol BUT if I am not gaining a good amount of weight it means my baby is not getting what it needs from me and this causes me even more worry.

I’ve not worried or cried this much in a very long time, I am suppose to be this happy glowing  person but it feels like my emotional and physical problems always seem to smack the happiness right out of me.

I just wish there was more the doctors could do for me to help me regain the control I once had so I don’t feel so lost.
I feel so alone these days, No one understands what I am going through because they’ve not had the same issues I have.
And most of the time I just don’t know how to tell people how I am feeling and when I do find words they are never the right ones and I come off as a bitch and yes I’ve been VERY bitchy lately.

It’s all so scary that I am afraid it’s going to get worse and I am not sure if I can handle worse

But now I am paying the price for having a life and having a nice time.
It’s like my fibromyalgia is jealous and does not ever want me to have fun or be out and about. And having a life or even a day with out pain is an absolute no no.

The pain is just so much right now I almost feel like crying but I hold it in, I don’t want to give in to it.
I feel like if I give in then it wins, I don’t like to lose…so I fight.
Some days are a lot easier then others, but it’s days like today that break me and it’s days like this people fail to see or when I do have these days I don’t let you see.

I probably will cry myself to sleep tonight, crying seems to drain my body of all it’s energy and it allows me to drift off and sleep better.
It’s pretty sad that I literally have to wear myself out and cry and cry just to get a better night sleep.
When the pain is like this is makes sleep nearly impossible.

I thought I would write again as it for a moment takes my mind of things, and gives me a place to vent instead of screaming out loud.

There are still so many people who think I am full of it and I wish that for just one day you could have a pain day like today so that you can then understand just what I go through on a daily basis.

I won’t sit and bitch and complain though because despite being in this pain I have so much in my life that’s so much more worth while then Fibro.
I got off all my meds for my baby to keep it safe and if this is the pain I must go through to keep it safe then so be it.
Because this April when you join me it will all be worth it.

And yes I may cry and yes I might scream and be a bitch but at the end of the day it’s all going to be ok and I’ve got so much more to look forward too.

Most days I wake up and can barely move, the mere thought of getting out of bed each day becomes a task.
And because I am on such a heavy dose of drugs it takes awhile for my body to actually begin to function.
Some people see this as me being lazy, or sleeping too long cause I do nothing everyday…it couldn’t be further from the truth.

Speaking of sleeping this is a perfect time to enlighten some as to one of the many curses of Fibromyalgia  .. CFS = Chronic Fatigue Syndrome…which means most days I can’t for the life of me fall asleep and when I do sleep I don’t sleep well and then my body has even more pain and I end up being exhausted all day long.
Then when and if I do manage to get a good night sleep I sleep longer then most people I can go anywhere from 10 to 15 hours of sleep….BUT please keep in mind that before those nights I have had many nights of only 4-6 hours sleep and my body by this point is so tired it shuts itself right down.

I am actually thankful to those 10-15 hour days, it’s one of the only times I actually wake up feeling pretty rested. My pain levels are lower as well on the days that I get the most sleep.
But most just see it as me being lazy and sleeping my life away….think again.

I don’t think many understand how their criticism actually hurts me, I don’t enjoy having Fibro and CFS but I have them none the less and I have 1 of 2 choices…lay down and give up OR make the best of what I’ve got.
I choose to do the best with the cards I have been dealt and really I don’t think I do to bad of a job getting through the days.

Yes I can sleep until 3pm in the afternoon but instead of judging that fact ask what time I actually fell asleep! some nights I can’t get to bed til 9am in the morning so if 3pm is my wake up time then so friggin be it!
And that’s only 6 hours sleep which means my body at this point is NOT well rested and I am going to be in even more pain…it also means my drugs are not fully out of my system and I am groggy on top of in pain.

I am so tired of people passing judgement on what they “think” they know but I will tell you this .. EVERY Fibro patient is different.
Fibromyalgia effects different people in different ways, no two people are alike in how they have symptom’s or how they deal with their pain.

So instead of passing judgment try to be a little more understanding!

So today I decided, I can’t sleep *thanks fibro* so why not give people a little lesson on just what IS fibromyalgia.

I came across this youtube link/video that I think REALLY sums up what it’s like for someone to have fibro and how hard it can be to live with it.

http://www.youtube.com/watch?v=941kVoQh9_s

So many people think it’s in your head you begin to get tired of trying to explain….my specialist said “Tami it’s not your job to educate the world, Tell them to get on the internet and do some research!” did I mention my specialist is the LEADING expert in Fibromyalgia AND is also the person who founded the very first ever fibro program for people living with the disease.
He sure knows a thing or two when it comes to fibro so I kind of took his advice but at the same time I am lending you a hand in your education

Here are some other really good links to help you understand what is fibromyalgia.
It’s not easy to live with but I do it…each day is a new day…and with each new day comes a struggle but I work it out one day at a time!

http://fm-cfs.ca/fm.html

http://www.fmnetnews.com/

They said it was because I am on disability and that the money from disability is tax free so that’s why I am not entitled, BUT when I was on on welfare (or Ontario Works as they like to call it now) I received a tax refund of over $400.
$400 for doing nothing, I actually got less when I was working which I think is totally insane but what do I know.

I feel like I am being punished for not being able to work, It’s not a life I choose or like it’s just a fact that I am now unable to hold down a job.
So why am I being punished for that? I am no criminal.

You can sit on your lazy ass and do nothing and get more then I do, Does that on any level seem fair??
I didn’t ask to be disabled it just happened, I didn’t ask to not be able to work I tried for many years to push through the pain, to stop having these vivid flash backs in public but I could not stop what was happening and it eventually took over and I could no longer beat it.

Maybe I should go back to being a lazy drunk and do some drugs and just be an all around shithead and then maybe they will treat me better then they are at the moment.

I just feel so awful at the moment, almost like why even bother anymore.

There is still so much I need to learn about this disorder and maybe through this learning proccess I can help educate other’s in learning to not pass judgement on someone who has it.

Fibro is very real, Take it from someone who has been living with it for many years now.
It started slowly when I was in my early 20′s and just got worse the older I got.
For the longest time I had no idea why I was waking up in such pain, why it had become difficult for me to walk or stand for long periods of time, why it was becoming harder and harder for me to do something as simple as wash my hair or lift a laundry basket.

One doctor’s apointment after another, trying one pill after another and nothing seemed to be working.
I thought I was going crazy.  I had heard stories about fibro being all in your head and when you hear things like that the “crazy” feeling begins to feel true.

I’m hear to share my story and the proccess I went through to get diagnosed with the disorder.
It’s not an easy story to tell, and it’s sure to be a long one but it’s one I am willing to tell if it help’s me to understand more and maybe help someone else.

The key to everything is knowledge and educating myself and anyone else who’s willing to listen is one of the key’s to understanding.