Don't Judge- the saga of chronic pain

[angelbear42001]

wow!!!!! thank you!!! i have a group on fb fibro and chonic pain!! they will love this!!!! thank you:):)

[cheshielynx]

Thank you for creating a voice for what it's like to live in chronic pain. I have Ehlers Danlos Type Three. Some days the pain is unreal. I am not one to usually open up to the pain I feel. I posted your video on my fb account to express things I can't always express for myself. Thank You...

[mrshypno1]

Very good video,I've just completed a pain mangerment course at st Thomas's London,this course has helped me to live my life in a more positive way,I explain in my video check it out.

[jeanneendo]

I'm looking forward to the guest blog you mentioned. :) :)

[booknhorsefreak]

I was just re-reading all the wonderful comments left on this video. Thanks for all your support. I'm doing a guest blog on a chronic pain site soon, look out for it, as it talks about the inspiration behind the making of this little slideshow.

[sevensplace]

Thank you SO much for this. It rang true to every step I've taken in the past 9 years 11 months. My gratefulness is never ending....much like my disease

[foggytube]

Thank you for doing this video. You have shown me in just over 4 minutes how to be courageous and creative about telling others what we need from them. I downloaded your video and will try to use it with the people I know. I try to say what you say in it, but I always become so angry because of all the blaming and judging. Thank you so much!

[AtheistJames]

I've lived with horrible chronic pain for 8 years - I'm currently 24 years old - and it's stolen my youth. I feel more and more like I'm turning into a feeble old man. But nobody understands or empathizes. The few friends I have get mad at me when I say I'm not up to going out with them, insisting that I've just conditioned myself to believe I can't participate. They have no idea what it's like feeling like the back of my leg is cut open, my entire spine aches, my back and neck hurt relentlessly

[AtheistJames]

My family keeps badgering me to "get out there" and go to school, get a job, and just learn to deal with it. They're all certain that I've just convinced myself of a delusion of limitations; they have no idea how constant, unrelenting pain saps everything in you: your energy, enthusiasm, will to live. How terrifying the prospect of going out can be, when I know that going out will hurt my muscles and make me suffer for days afterward. Yet they continue to insist that I MUST get off disability.

[AtheistJames]

Just because being poor and on disability is a lousy lifestyle, I should go out and get working just because I HAVE to. Reality doesn't even factor in for them; it's just living on disability is unacceptable, so you have to just magically go back to working or school, even though I've tried both countless times, and the pain I had to feel for hours and hours at class or work - with nowhere to rest, no access to a full array of painkillers, ice packs, and most importantly, a bed to lie down in.

[AtheistJames]

Meanwhile the Doctors have me on every painkiller under the sun; including the only one that works enough to let me go for a short walk, or a quick shopping trip: Oxycontin. But there's such an unfair stigma on me, being a 24 year old male, that they're always suspicious that I'm trying to score drugs to get high. I've been oxy high, and there's nothing enjoyable about it; it's actually quite a horrible feeling. But they continue to under-medicate me with sub-therapeutic doses.

[foggytube]

James, I'm so sorry for your suffering my little brother. My symptoms didn't onset until I was nearly 30 years old (12 years ago this month). I have heard every one of those blaming and demanding comments that you mention in your posts from my own family and friends. I wish I had a key that I could turn to help people "get it". But I haven't found one yet. I read all your posts on this page--I'm so sorry, man.

[sniperhavoc]

I too am 24 yrs old, male and in chronic pain from a Herniated l5-s1, sciatica w/nerve damage. Suffering for two years, its torture. Its stolen my youth, vanity, happiness, friends and even family. It's frustrating, having been a soldier, athlete, runner, salsa dancer and outdoorsman, pain ended all that . My family gives me the same role "its all in your head".blah blah. Keep fighting man, people will always judge. Let them.. only we know how it feels to live day a day with chronic pain.

[plezstopthepain]

awesome.Thank you... This is me...God help us!

[mojm2threeinaz]

Well done video. I have been living with RA four 4 years now. Probably longer than than that as it took me a year to get my diagnoses.

People just do not understand chronic pain. My husband doesn't get it either. He totally thinks it's all in my head or for attention. Sometimes life gets unbearable.If it wern't for my faith and my kids I'd have checked out by now..

[wizardman42]

Imagine grown man crying for no reason. Imagine standing with one leg in a bucket of boiling water. Iamgine getting fighting mad over nothing. Imagine your wife of 33 years leaving you because you no longer laugh.Cancear can be cut out, an infection can be cured. RSD ia for life, and takes your life. and unfortunatly many with RSD die , not from the disease either. Those of you tha have RSD , keep the faith , it dose get better , life dose go on!!

[jeanneendo]

"caiquecrazy",

Thinking of you and still loving this video!

Jeanne

[pupudwagon]

love this - well done! I have Ehlers-Danlos and can totally relate!

[Kaarin452]

Thanks for making this video. <3

[ladyDevious1]

Hey...just showing a fellow spoonie some BYDLS love. :-)

[ufarted]

wow, this video is really good. thanks for uploading it.

i have fibro and it really has changed my life. i went from being very active (riding 4+ times a week & walking my dogs 3 times a day) to sitting in a chair all the time. i miss my active life alot, & i'd give anything to get bakc to it. but with no pain relief that works, i have been told just to work through my pain & it will go away or i will grow out of it. at 14 i feel this is stealing my childhood, but thats fibro eh!

take care x

[sarahbaro]

I'm only fifteen, my pain started last year. Get a mobility aid: crutches or a wheelchair or something. Paradoxically, it will help you gain your childhood back.

[SANDMANCASTHISSPELL]

What a great video.

[motoryachtkarilla]

I have lived with CRPS for 4 years now, it has generalised and doesn't respond to any ttreatment. The last resort is the ketamine coma, but I can't put my family through that right now. Your excellent video has put much of what I feel into words. I wish you peace and relief. x

[AmyDale71]

((((Hugs to all of you))))

Well wishes.

I know also how hard it is to live with Fibro

[roobs69]

life changed with a bang..i fell from my 4th floor to the concrete below..i broke my back twice,both wrists shattered and still being rebuilt 3yrs later(the fools!!), broke left hip too..now have a drop foot(luckily not both).i suffer from severe CP.and can so relate to your feelings,i may have to borrow yr words to explain to others.i watch people run and jump and so miss it..lyrica600mg,dyfene150mg and a fentanyl patch.. and still have this shit!!be strong!life is shite!and unfair,good luck x

[Scrappyjrt]

Thank you. I had to give up my beautiful Arabian mare due to illness. I still cry for her and the freedom I have lost.I will remember you in my prayers.

[sarahbaro]

I have been suffering from chronic pain for eight months now. My diagnosis jumped from "plantar fascitis" to "we don't know". I'm still trying to get in to see a pediatric pain specialist. Although my pain is not horrible every day, and eight months is hardly any time at all, my journey feels like an eternity and I identify with every word you've written here. Thank you! Remember you are not alone. I'm here tonight as well.

[artbydevon7273]

Hi, Your video was beautiful. I have Fibromyalgia so I know the pain you speak of.I have a hard time putting to words my thoughts and feelings.You have said it all so eloquently.Thank-you and Take Care.

[MerAngel72]

Wishing you a huge case of spoons!!! - the video is good, the song just really tops it all off. I sat here with my headphones on and my hubby asked my why I was crying. All I could do was point at the screen. The song really topped it off for me. I have always loved horses and being out there with them is special time for me. I just can't do it anymore... Many blessings and many spoons to you!!!

[veelighted7]

Blessings. I apprec your bravery of sharing...

I too live with CP: Whiplash: Neuropahty; severe Fibro/seizures/Myofascial/musc­les spasm..

It's so hard to be "invisible", people think I'm weak, I was not like this before the accident. I pray you feel better soon.

Vee(co

[JoeyLightning19]

My wife has a lung ailment called bronchiectisis. We have been married nearly 9 years. He condition seems to worsen with each passing year. Her pain comes upon her with every breath she takes. Sometimes the pain is only mild, other days it is severe. Just watching her makes me empathetic to those with other pain issues.