Credence Poem

I have Fibro-my-algia

And ALGIA means Pain,

So why do you treat me

With haughty disdain?

I am weak and I'm tired;

I struggle to think.

My balance is poor,

But you don't make the link

To genuine poor health;

PAIN

When you see me how do I look? I can answer that, I look fine. Get to know me and you will find out different. Every day some part of my body hurts, one day my legs one day my arms another day every part of my body. How would you cope with it? I struggle every day to get out of bed with pain stiffness or just to tired. Over the years I have learnt to put up with the pain whether it be low moderate or high.

 I use crutches on the really bad days to stop me from falling over because my jelly wobble legs don’t want to hold me up or to move. I beg of you legs please move, take one step at a time, that’s it just one foot forward then the other, that’s right just like you use to. It is not hard to walk for you, try having my legs for a month you would soon want yours back. I love going out shopping, can you carry your shopping bags because I can’t. What is a jumper in a plastic bag? To you it is jumper to me it is a bag of bricks. The pain in my shoulders and in my hands goes down my spine and into my legs that is what carrying a jumper is to me.

Do you find it hard to peel a spud? I do the pain in my fingers and hands shoot up my arms and into my shoulders, yes then into my spine down to my legs. Yes I could sit down to peel them I hear you say, but that won’t stop the pains in my hand as I struggle to hold the spud.

Just sitting here writing this puts pressure on my spine my shoulders my wrists and fingers. I use to write stories but now my fingers hurt to hold the pen, the pain shoots up my fingers into my hands, they start to stiffen my hand writing goes to a scribble I cannot control the pen. At my age I cannot control the pen. Do you know how that feels?

 I love to watch films but I can never remember what they were about when they have finished. I could be talking to you having a great conversation then suddenly stop, what were we talking about I have forgotten. No I am not going senile, no I am not stupid and most of all no I am not kidding.

Your in pain, your body does not want to work all you want to do is sleep. Can you sleep for days on end? I can. When you wake you don’t know what day it is or how long you have been in bed. The tears roll down your face, is this what my life is all about.

All of this and more just because I have an illness called fibromyalgia. What is that I hear you say, it is a miserable lonely life that unless you know someone with it or have it yourself you would never know or understand. What can we do about it, what do the doctors say? The doctors say you have to live with it because we don’t really know enough about it to take it away. Isn’t life fun.

pain.pdf

Letter from my pain

Hi...

My Name is M.E./CFS /Fibromyalgia, and I'm an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.

 Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn't ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay!

I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.

 Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of they will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "Normal" person, and can't remember what you were going to say next! ... See more

In closing, (I was hoping that I kept this part a secret), but I guess you already found out... the ONLY place you will get any support and understanding in dealing with me is with Other People With M.E./CFS and Fibromyalgia

pain letter.pdf