I SCREAM!
I scream
just scream
they tell me it don’t hurt that bad
how could there be so much pain
you look so damn incredible
stop complaining and they turn their head
I scream
Just hold my hands beside my fears with your judgment still ringing in my ears
I scream
I kick out all the windows and from inside myself escape
Shattered from the bits of glass so deep you can not see
when I leave your view the pain of me is gone
I scream
I just hold my hands beside myself and try to comprehend
this madness deep inside my head, too deep for it to mend
don’t dare to touch it hurts to holdso deep inside you think you see
someone strong and brave in me
no pills for piece of mind
no bit of words you say
even though you’ve the degree
don’t stand and be the judge of me
you, you know me in a minute
I ask once more did you hear me sir
as you walk me to the door
I’m sorry miss
You’re much too young
your referral’s at the desk
I know he thinks as he walks me to the door
God, she sure is beautiful can’t believe she could be ill
my life will never be the same,
even if I stick around to live it
I’ve lost that one thing your supposed to hang on to
and sometimes the strength to be without it
Today again, I try to look my best and burst right through them doors
I came in so determined and again, you knocked me to the floor
you think that I will go away crawl into a hole
someone, someday will understand
the me beneath an illness that has consumed me with such fury
shut your folder sit and relax you’ve done your job you think
you only dabble in that this week
I could hardly keep my emotions together
but hey, what must it be like living in such pain 24/7
besides you think, if she’s in so much pain, she should be kissing my feet,
and stop that damn complaining
oh well, five o’clock, time for you to head home, your family and a good night’s rest
without the worry of me, after all, I’m out of view
Copywritten Rebecca J. Burns – please email to use poem or at least give credit and link to site
Dear Andy,
You make the choice to give up or not, I say not. Even with pain, there is so much joy in my life. Find ways to keep your mind at peace.
Love & Peace,
Rebecca
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I have fibromyalgia.. my life will never be the same… now isolation…. humiliation…….just can’t believe this is life. thank you for your poem… I used to write…..I admire you this is a painful life we lead emotionally and physically.. I have my husband… not sure who talks to me anymore or who to trust… my heart is confused…I had a family once… now they apparently thought it would be easier to humiliate me than talk to me… thumbs up! gang up on me when it was only the truth… maybe I should just go..poof disappear…better for everyone involved… I would miss my Andy and My Charlie… they keep me alive for now…
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Dear Leesylou,
Thanks for writing back and telling me more of the chronic pain you are dealing with. Sadly, after reading your email I found that there are few support groups for children in chronic pain, the following link was an open chat about this topic and treatments, ways to deal with stuff and such.
This seems to be a new area for medical professionals, they now realize that the children suffering will grow to be adults that weren’t not properly assisted in dealing with the pain that will then be adults unable to cope with their pain as well. They are doing more to support children but from what I find online, not enough and not now.
I was thinking, since you do like to be online, especially when you are stuck in bed, are you interested in starting a support blog to help children in pain? Just a thought. You are better equipped to help. For example here, I can’t solve the issues of those that write about abuse, pain or struggles, but I am here to offer what I have been through and offer advice on what I have tried. That is what support is, not feeling so alone.
You are not the only child living in daily chronic pain, reaching out to others in your situation will help you develop a support system. You will find ways that they are coping that may work for you.
How do I deal with the chronic pain? Finally my meds have stabilized enough that the pain isn’t always the first thing on my mind. The mornings are hard, I sleep on ice packs or heat, depends on that days pain. Then I take pain medication about 20 minutes before I know I have to get up, give the medicine and the heat/ice time to kick in. Then if needed, hot shower or bath. By this time I am usually feeling a bit better equipped to handle my day. I do this too at night, then I do a 15 minute stretch, very important.
I coach and sit most of my day at a computer, so sitting is a big struggle for me. I have a ice pack that I fill at work and take it most places, or course I have a heating pad in my bag too. I try to get up every hour or two, just for quick walk to stretch the muscles and back. Some days nothing helps, I am bed bound, can’t work. On those days, i have learned to simply surrender. I used to get depressed, angry that the pain was keeping me from going out, cancelling plans. I felt hostage to the pain. Now, since it has been so long, I have learned that my body wants me to stop. I read, watch movies, blog, listen to music. Just give in, the more that I would fight it the more depressed I got and the pain won. I do things that I know I like to do from bed.
Then on the good days, I do everything that I can until I drop. Later I may regret it, but at the moment, I feel the energy to continue. Personally, I started juicing, just google, juicing or check out this link, not my link but it is a start
I am working on starting a site called juiceme.org to help other newbies learn to juice for all the benefits, pain relief being the top one. I found that everyone has inflammation that increases all pain. The juicing has been a fast, natural way to bring down my inflammation and reduce some of the major muscle pains. I have been doing this for a good 5-6 months and it is night and day if I go a week without it. My pain returns worse. This has greatly, greatly improved my overall mind clarity and energy.
I will do my best to support you here and will do what I can to support others in your situation. Together we can find solutions or at least offer a safe place for children to come and be heard, find tips and just others to share their pain with. Letting the mental pain out by talking and sharing helps more than you know.
I hope to hear back from you, you have touched my heart.
Love & Peace,
Rebecca
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Thanks Rebecca, My Pain is due to using crutches on and off for over a year because of bone that died in my foot. i had to have my tibia sawed open and a bone graft. I was used to pain before my Chronic Rib problem because of my ankle. I had 3 surgeries and had to be on crushes and had use of a wheel chair. before my last surgery my ribs started hurting so i had an x-ray to see if they were broken but they weren’t they were apparently fine. So after the surgery when my foot started getting better my ribs started getting worse. the current diagnosis is that something is wrong with the nerve. i might have caused nerve damage while on crutches because of pressure and many falls. My current treatment is 3 medications which are Gabapentin, clonodine and endep. also I’m seeing a physiologist, special physio, and a chronic pain team. I may be getting in touch with a neuropathic surgeon.
i can’t home school but its possible that i may be moving schools to get a fresh start.
im a really sporty, musical, artistic and brainy person. I’m a great student in everything and almost always get top marks. and I’m better then that. My pain holds me back. I could be a VERY good netball player but i had to stop due to my injuries. I could be a great singer/actor or guitarist but its hard to do when I’m in so much pain. How did u deal with this, because its so hard to really tell people about it. And everyone tells me i need to pace myself and rest but when i ask to rest and stay home instead of going out, I’m not allowed to and i have to go out and i over do it and get tired and i get blamed for it like its all my fault and its hard to explain how i feel. Give me your email so we can talk if you like because nobody really gets how i feel and how much i deal with. I don’t know anybody with chronic pain and i can’t go to a support group because I’m a kid and there isn’t really a child/teen support group where i am.
thanks for responding
from me
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Dear Lesselou,
How heartbreaking, I am so happy that you reached out there. I can’t imagine living in this pain at 13, can you share more, what is the pain from? Do you have a diagnosis? What is your treatment if any? How are your parents with this? Let’s talk more, I want to be there for you. I had many years being depressed over my pain but have been able to stabilize it with the rights meds and stuff. You are so young but there must be ways to help you manage the pain. Tell me more and I will do my best to advise you.
Can you home school or no? That would eliminate the pain of fitting in at school. Support groups for youth in pain, I will see what I can find. Writing is a great mental head pain relief of sorts. Don’t be afraid, you must have a person to trust to get out the pain in your mind too. Let it out, this is a judgement free zone. We are here to support.
Write back please, you are in my heart and prayers tonight.
Love & Peace,
Rebecca
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hi, im13 and living with bad chronic pain. i get it. it destroys my life. I’m in agony 24/7 with 8/10 pain. but people find it hard to believe I’m in pain because i deal with it so well. the thought of life without this pain seems impossible because doctors don’t want to do anything in case they make it worse. but how can it be worse when i have no friends because i can’t be really outgoing. all i can do is sit and listen and hold myself together. my old school i had a friend who gave me a list of thongs i NEEDED to do to be acceptable. with a bad social life at school coming home goes not much relief when all i can do is lie on my bed or sit and watch TV. My only joy in life is my netball, music, art and cooking which can’t be done often. So what am i to do when i lie in bed at 3 am and think of the next torture day of school. i live in lies to scared to tell anyone what really goes on in my head.
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Dear Mildred,
Of course, feel free to post the poem, it was meant to be shared. I am sorry to hear all that you are going through. I hope and pray that you can find some relief, you deserve it. I have a friend who writes a blog about living in chronic pain, it may benefit you and you her. The blog is athttp://livingwiththepain.wordpress.com/
Love & Peace,
Rebecca
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Rebecca,
I was very moved by your poem on chronic pain. I have COPD, and am a lung cancer survivor of 13 years. I recently had a biopsy for another “thingy” in my lung. We are awaiting results.
It is very difficult to get doctors to hear you, much less read the pain and discomfort that must be in your eyes. There is pain from COPD and the “thingy” that is severe pressure, not sharp pain, but normal analgesics will not temper it. We must resort to begging, or trying the Canadian pharmacies, which I haven’t done yet.
Good luck. I would like to post your poem on facebook, but only with your permission.
Mildred
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Thanks Erica. I miss you girl. I actually wrote both poems for my sister who suffers with Firbo too. I tried to let her know that I too understood her pain even though I did not suffer with the same. I am glad that you could relate. You are one tough cookie. I am so proud of you getting the job that you have worked so hard for.
Love & Peace,
Rebecca
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When I read “I Scream” and “Pain, Pain Go Away” it was like reading about my life. I was diagnosed with Fibromyalgia when I was 20 years old. I had a lot of pain back then but I figured that it was a mind over matter situation and that I could handle it and I did until about 9 months ago. I am now 29 years old and I feel like I am 90!
About 9 months ago, I lost a baby, had what my doctors called was the “Swine Flu” and have never been the same since. Now I am on 3 medications just to try to make me feel less pain. Some days it makes it tolerable, others I want to die.
I remember when I was first diagnosed, I went to my Grandmother’s doctor figuring that she already had the “family” history. My plan was to conceal what was happening from my Grandmother. She had a heart condition from birth and ended up with RA and Fibro. Her worst fear was that either my sister or I would end up like her, hence the secret.
That did not quite work out as I had initially planned. You see, the doctor can’t explain your conditions and what you talk about but they can say “Hi Evelyn, how are you? I just saw your Granddaughter!” Guess who got busted.
People said that I should sue because of what the doctor had done, but she really didn’t mean any harm. As I worked in the building it could have meant several things, but grandma always was a sharp one. She knew as soon as she said she saw me, what that meant.
That was a hard conversation, as again she was keen to the lies. “Now don’t you dare try to lie to me young lady!” she said. Really, how could you? So I told her everything. They didn’t know as much back then as they do now, so she really was of no help as far as the do’s and don’ts but that’s alright.
She was happy to see that it had not really started making it’s mark on me yet and thank the good Lord that she never had to see me like I am today. I know that she is still around watching over me though.
Now I take things a day at a time. Really what else is there to for me to do. People say that you only get what you can handle and although I never asked for this and my best is definitely not what it used to be. With the support of my family and friends,although it is a long, hard painful road, I know that I am not alone. All I have to do is ask and someone is right there waiting to help me along the way.
Anything that you need Rebecca please ask. You know that I am here for you too.
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