Living with Fibromyalgia and Ankylosing Spondylitis - My story

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I've wanted to do a video about Ankylosing Spondylitis and fibromyalgia for quite some time, but after some fairly harrowing news from the Hospital yesterday, I figured I'd finally get something done.
While I know there are crazy helpful people out there wanting to offer suggestions, CBD oils, Low/no carb diets, Swimming and a bunch of more ways of treating these illnesses more 'holistically' are either how I've coped for as long as I have or have had no effect whatsoever (such as CBD).
This is no-where near as short as I'd have liked it to be, neither does it cover every aspect as I'd have liked, but hopefully it's something that helps someone through inspiration, understanding, or simply the feeling of not being alone.
For those of you that watch the channel, this is also why sometimes my upload schedule is a bit up and down.
One of the reasons I choose Patreon and Paypal.me is to help keep me going through the fog and lack of mobility etc. Your support keeps this dodgy old cripple getting up in the morning, and for that I thank you.
Apologies for using the wrong lens and being a bit out of focus at times.
The background music used was:
Title: A.W.A.R.M. Signal Long
Author: P C III
Source: www.pipechoir.com
License: Creative Commons Attribution 4.0
/ awarm-signal-long-1-ho...
+++ SUPPORTING THE CHANNEL+++
If you wish to donate to the channel as a one off, here's a PayPal.Me link - www.paypal.me/...
and here's my Patreon page for continued support and special access - / vapingbiker
+++VAPING BIKER PRODUCTS+++
MERCH - www.vapingbiker...
VAPE MATS - www.vapemats.co...
Social stuff to follow right here ...
www.vapingbiker...
/ vaping_biker
/ the_vaping_biker
/ vapingbikerdeano
Unless otherwise stated, all music used is Royalty Free and included in Final Cut Pro editing software.
Motorcycles I have currently:
Honda Shadow VT750 Black Spirit (Phantom in the USA), highly customised - • Sunday Vlog on a Monda...
Honda Shadow VT1100 ('93 I think, 4 gears), chopped and goosenecked, still in build stages, I made the tank and tins before illness stopped me progressing.
Equipment I use:
Main Camera: Canon EOS 200D / Samsung S8
Stills capture and thumbnails: Samsung S8
Microphone: Blue Yeti, Boya BY-PVM1000, Rode Video Mic Pro
Audio Capture: Zoom H1 or Camera
Computer: Late 2014 iMac
Editing: Final Cut Pro X
Audio Editing through FCPX
Stills editing through Snapseed or Affinity Photo

Опубликовано:

11 сен 2024

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Комментарии : 719

@VapingBiker 6 лет назад

Thank you to everybody that's watched and to all of you for commenting. I'm humbled to think it's helped as many people as have commented below, as well as the barrage of emails and private messages I've received. I'm sorry I've not replied to everyone, but know that I've read all of your comments, and whether you suffer from illness as well (regardless of the condition), or you know someone that has similar challenges, you're all superstars. Don't let it define you, be strong. Love and respect, Dean, the Vaping Biker

@vapelifewithjarret4386 6 лет назад

Vaping Biker your the Man Dean and we all hope to hold you up when your down and maybe i can put out reviews of your quality some day... hang tough Man

@may_beck6224 6 лет назад

Dean Im an occasional viewer of your channel and found this while poking about looking for something to watch while I sit here too knackered to do anything . I too have fibromyalgia and something with my back as yet undiagnosed ( my discs are starting to degrade and herniate ) ) Im guessing that it will have to get worse before anyone takes a blind bit of notice as usuall ! I am lucky in that I can still work and have a sympathetic work place that will let me do admin on days when I need to sit but 5 hours a day especially now in mid winter when Im at my creekiest boy its taking some doing right now. I am though good at hiding it and only a select few know I have anything, so what I wanted to say was well done to you fella I wouldnt of been able to show that side of myself to a thousand people well done to you.

@broken1965 6 лет назад

Vaping Biker the depression is so bad also 20yrs with fibro an low back surgery shoulder surgeries an I still work as a machinist but with alot of missed FMLA days Im in the states

@randyparks8719 5 лет назад

The only medication that works for me is pot , I tried every medication in the Dr's medicine cabinet they worked good at first but in a short time I was in bad shape once again . Trust me brother I know you pain hang in there .

@tensaru 5 лет назад

Hey vaping thank you for you video it helped me alot i and 20 years old and i was diagnosed with ankylosing spondylitis and fibromyalgia when I was 18 been fighting it for 2 years now and seeing your video helped me realize that my pain is not in my head. And it is REAL so i thank you so much and keep up the good work

@LegionsLair 7 лет назад

Dean, I'm not ashamed to admit that watching this brought me to tears. As I type this now I continue to cry...not just for you but for the many people who suffer this and similar conditions and feel lost, hopeless and powerless. You are such a strong, wonderful person and an inspiration. No one deserves to go through what you must every day but thanks you for sharing this with us. I am certain your words, your honesty and your attitude will inspire many people to get through another day...and another day...and on. All my love and best wishes for you. Also....extra love for your wonderful supportive wife!

@soowoo8627 7 лет назад

Legion Vapes! Cowboy up. Life moves on.

@soowoo8627 7 лет назад

Franck Lamonica Thats really hurtful. I am now crying. Oh wait no im not.

@soowoo8627 7 лет назад

Sorry that you give people on the internet the power to make you upset. Have a nice day.

@soowoo8627 7 лет назад

You tell me you're not upset, then go on to explain why you are upset. Nice.

@BaddaBigBoom 7 лет назад

Thoughtless, intolerant AND passive aggressive. Not a good combination, maybe you should go off and think about it.

@jasonbuhagiar4714 5 лет назад

I have ankylosing spondylitis and fybromyalgia. It's a real trial through life , it affects your mental state too . The anxiety created from being in pain for long periods of time is incredible

@SuperLawz 3 года назад

How did you get diagnosed with AS?

@danplantman62 Год назад

Me also .The pain never goes away .

@clare_eliz 6 лет назад

I want to thank you so much for opening up and making this video. I personally really needed to see this at this exact moment in time. I have ankylosing spondylitis and fibromyalgia (with some other fun more diseases thrown in). I'm twenty. I was diagnosed with AS officially at about 14 and was officially diagnosed with fibro four months ago. I've just started treatment for my AS again after 4 years of just trying to grin and bear it. I had my first Humira injection today and at first was extremely excited to be in treatment and to get to feeling better until it set in that the medication will take months to begin to work and I've been struggling with that concept. I needed this video to remind me that I've just got to keep working and not let my disabilities overcome me, no matter how much I want to give up. You've helped me so much in this moment. Thank you from the bottom of my heart and I wish you luck with your continued journey.

@Apathymiller 7 лет назад

i completely understand Dean. I like you look fine on the outside with my clothes on, but have been thru 13surgeries and all sorts of rehabs. i was in a car wreck that killed my brother driving and the 2 guys in the car that hit us. i was the only survivor. its been 20 years and my body has just detoriated, ive now got 5 ruptured discs and 3 herniated discs as well as being paralyzed. spinal stenosis, degenerative spine disorder, and osteoarthritis. i completely empathize and sympathize with ya my friend. Very big of you to put this out there. i hate talking about whats wrong with me, but if you dont people just think we're normal and unfortunately we have become far from normal physically. i wish you the best.

@johnstinson893 7 лет назад

I'd like to say thank you Dean. My uncle was diagnosed with Ankylosing Spondylitis in his early 40's. He is currently 53. He now has multiple spots of spinal fusion, and has walked with a hunch for almost 20 years. As long as i can remember. He has had this disease for a lot of years and recently has just been discovered. Keeping people informed is the MOST important thing. Recently my uncle took a bad fall. Hit his head and managed to have a seizure. Now due to his fall he actually broke his neck, and is paralyzed from the chest down. He is currently in rehab and has just started being able to use his arms and head again. I never knew anything about this disease until this recently happened. And as much as I am sad about the situation, I am glad that you are strong enough to talk about it. You Dean are a fighter. Don't ever stop fighting. You are an inspiration to myself. I wish you well. Thank you for this video

@sick_of_all_the_lies4207 7 лет назад

Wow dean, I knew you had some medical issues but I seriously feel for you. I hope you can keep moving forward with your head up man. I speak for all of your subscribers when I say we love you and we wish you the absolute best. We are all here for you dean.

@Ch1ckenp0pper 7 лет назад

Inspiring words to anybody with chronic illness. You are a good man.

@Kenwaldek 7 лет назад

Thank you Dean, the past two weeks my fibromyalgia is bad. I feel your Words 100%

@stevegeal9882 7 лет назад

Hi Dean, thank you for posting this vid. I have suffered with ME (Chronic Fatigue Syndrome) for 20+ years. Only your partner really understands these types of condition! They are truly awful and life changing. I’m with you all the way bro. Bless you mate. Steve.

@Smail1024 7 лет назад

Thank you so much for this Dean so many people just don't understand I've dealt with fibromyalgia for 7 years now and it's complete hell

@sideswipe1261 Год назад

I recently started year 41 of my 44 years on earth. And it is indeed hell. Even if we’ll intended, so many people are far too uneducated and it gets old extremely fast when someone reads a 1/2 page Reader’s Digest article on Fibromyalgia, then speak to you (often DOWN to you), the actual sufferer. No, eating a salad and going for a jog is not going to fix this. ANY relief is welcome relief, and when opioid haters (because they’ve been told to hate them though again have no real idea what they’re talking about or how they work *without* making any responsible patients “high” at all, just functional enough to CARE about being alive is a tough reality for for ignorant people to wrap their brains around. Methadone has been in SAFE USE for chronic pain relief for over 90 years now. Lyrica, Cymbalta and whatever the other 3rd FDA approved “Fibromyalgia Treatments” are nothing but RENAMED ANTIDEPRESSANTS. Same rules apply, like the LEGALLY REQUIRED SUICIDE WARNING LABELS, extreme weight gain, wreck your organs, kill your soul and are neck-n-neck with PLACEBOS which carry NO side effects, and best of all DO NOT EVEN WORK. Then your doc will up your dose 2-3 times. Then change your medication. Each time requiring you to wait 4-8 weeks to see if it has any benefit (it’s placebo effect, folks. No “Diet/Zero Calorie” beverage has ever been proven to help anybody lose any weight whatsoever- but they’re GREAT IF YOU LOVE CANCER!). “Side-Effects” is a weak attempt to just reword “Direct-Effects” so they don’t sound as nasty (unless you listen closely and read the actual horrible, permanent things like brain damage, permanent spasms/twitches, loss of motor control, severe headaches, induce or worsen arthritis, slash your quality of life, make you gain 80lbs in 4 months or less (stressing the rest of your body’s systems out extremely + begging for diabetes), and of course make you kill yourself (the labels aren’t “watches”, they’re “warnings”. Meaning enough people already have done it BECAUSE they took these “medicines” but would not have if they hadn’t. I’m searching for Ketamine therapy. It can knock out severe chronic pain, anxiety, depression, suicidal ideology, PTSD ALL FOR A FULL MONTH with ONE DOSE, and NOT make you loopy or groggy or compelled to buy glow sticks. All without messing with any autonomous functions like heart/vascular, pulmonary, digestive, kidney or liver functions whatsoever. Safely. Why aren’t more doctors leaping on this treatment? Why not kill 2-5 “therapy resistant” birds with 1 stone vs chugging piles of mixed danger/suicidal pills every day for life only to become more miserable? The science is there. The doctors are dragging their feet (fewer Rx’s written and filled monthly = less $ for docs and BigPharma). But it IS FDA APPROVED!

@thewrenchreviews9986 7 лет назад

Thank you Dean. Thank you for your story, which is both heart rending and a soaring inspiration. Your courage and boundless enthusiasm is evident in all the things you do and the countless souls you have touched with not only your knowledge and experience, but also the wisdom you have amassed while fording the difficult waters you must traverse. My thoughts and prayers are with you sir.

@Walramirez 6 лет назад

Dean, thank you for posting this. I took suffer from both fybro and AS, and your video is the only one I’ve come across that describes what I too have to endure on a daily basis. Thankfully I don’t need the assistance of a cane or chair at this time, but this is an unpredictable disease that no one can truly predict the future. I too have a pharmacy of medications that I must take on a daily basis and infusions every six weeks to simply keep me going and alive. I don’t wish for anyone to have to go through what I feel when I open my eyes in the morning and have learnt to embrace what I have and not let it define me as a person or beat me. Sure there are mornings I rather just lay in bed with the covers over my head, sure it takes me close to two hours after awakening to be able to move and get myself to a situation where I can now step out of the bedroom and begin my day, and sure I dread closing my eyes at night because I know when I awaken, I have to go through it all again. But again I don’t let it define or break me! I have found that mountain biking helps to stretch everything out and keep me limber as much as possible: though not taking wicked jumps because I know the pain I have to endure if I take a fall. I am fortunate to be able to ride my bike and if that’s taken away from me, well then I’m not sure at the moment how to handle that. So I’ll ride as long as I am able to and take the massive pain that comes after I cease my activity, but it is a small price that I pay to still keep my whits about me and my optimism despite the anguish and pain. So thank you again for this and keep strong. Do whatever you can for yourself that will keep you going one more day and simply take life, one day at a time! 🤟

@nathanvaughan6070 7 лет назад

DUDE!! i dunno how you do it going through this and still smile like you do! hats off to ya! this made me cry :(

@georgelovesnopain 2 года назад

Thanks on behalf of our AS-Fibro warrior community. So glad that you shared your story. I have been fighting this for the last 25 years. The fatigue really gets you. The pain I could still fight.

@say10mgtow33 7 лет назад

Cbd is a life saver,but I know it doesn't work for everyone.Don't really know what to say.Would say my prayers are with you but I don't pray.But you are definitely in my heart.Dean you are honestly a good-hearted person I can hear it in your voice.Keep your head up and keep pushing forward as you do everyday.

@karenpetriecreighton8692 7 лет назад

Dean I want to thank you for opening up and sharing your story. I admire your courage and strength. I my self deal with pain everyday. I have simular issues I have been diagnosed with fibro .... but I do not accept that, have had a neck fusion due to herniated disc as well arthritis and I do have crohns disease. I fight everyday to deal with pain issues and fight very hard with battle. My husband James has simular issues as well. Pain is a huge struggle. I do maintain a full time job and there plenty of days I want stay in bed and hide from the world. I enjoyed watching your video not for pleasure ....but for the subject matter. I thank you again for opening up and sharing to the world!

@BaronCorrino 7 лет назад

Dear Dean,Thankyou for sharing this with us.The fact that through all this you still have a tender smile and twinkle speaks volumes about you. Keep it up and stay strong.

@GRITTSTAR13 7 лет назад

Dean, sorry for your recent news, I’m lost for words really but please know this, you are the best at what you do, and a throughly nice bloke on here. Keep doing what you are doing!

@freilichwurscht 7 лет назад

I would never have expected that a man who suffers from this diseases can be that positive and happy like you. thx for sharing

@deborahconner2006 7 лет назад

omg i have so much respect and admiration for you to live daily with the things you do. i for one am happy that your fighting and trying to continue to do what you do for vaping we all appreciate it very much.

@gordonstevenson9909 7 лет назад

Dean you have left me speechless and in tears at what you live with every day. More now than ever I will appreciate your videos knowing the struggle and effort that goes into each and every one. Keep doing what you do with the knowledge were all here to support you

@howardlenow 7 лет назад

Thank you for this eloquent and painful story. I am a trade union lawyer in the United States and have represented a number of union members with your issues. It was very hard to convince the employers that these problems were real and debilitating, especially in the years prior to effective identification and diagnosis. Your video should go viral because of the power of your personal description of the challenge of performing common daily functions. Hurrah for you. I am sure you have touched those of us who do not suffer from your conditions. More importantly, you have provided validation for so many who suffer without recognition or identification. Amazing work. Just truly amazing and inspiring.

@tROCKxBitE 7 лет назад

brother, I wish that I can empathize and help you but I can't.......but I love your vids and you seem to have one of the most outgoing, loving, happy personalities out there! stay strong. as someone with ptsd I know what its like to have social disconnect and I hope, I pray, that that others can find, through any illness, a way to continue life and you my friend are an inspiration to me that tells me I can still be a happy and friendly person in life!

@drummergav 7 лет назад

A very honest and to the point video. Thanks for all the information you gave us all on your ailments. Your ability to be so cheery and positive in your other videos and in real life at the events is amazing considering whats going on. Never feel embarrassed about your condition, we all love you and "get it" so much more now you put this up. Take care dude, Gav

@BrokenString18 7 лет назад

Your efforts are not in vain, Dean! Keep the struggle! We're behind you 100%. Smiles from a grown man who you made cry.

@SparkyDecay 7 лет назад

Why would someone dislike this?I have chronic fatigue syndrome and hypermobility and totally agree dean with how difficult life can be with this as I had over a year of being misdiagnosed many times with fibromyalgia and M.E . Great video mate

@terjibeder6871 6 лет назад

This really is the most relatable video I have stumbled upon so far. Thank you for sharing your story. I wish you all the best.

@dragontattooee 7 лет назад

Thanks for sharing ...as a fellow Ankloysing spondylitis sufferer...I. know how bad it is ...I never knew about the Fibromayalgia ..

@talesfromtheleashbernieamy1960 5 лет назад

fibromyalgia is a very misunderstood disease. the slightest pressure even the lightest touch of a finger touching you causes extreme pain. it seems crazy, but it's TRUE. Someone can tap you on the shoulder and I can help in pain. IT IS THAT PAINFUL!!!! You wouldnt wish it on your worst enemy.

@tammy-lynnstewart5677 6 лет назад

Brought me to tears. Not only your story but knowing so many people suffer. I have my own share of health issues but no one deserves what you & others like you are going through. Stay strong. Love your vids. Such an awesome attitude towards life in general!

@englishmaninsweden 7 лет назад

Dean, I’m sure that was hard to make. I know you have mentioned your health challenges in your videos, but I had no idea it was that bad; you put on such a brave and cheery face. You know that all of us here in YT land will keep watching and supporting you. You are an inspiration.

@mattriley798 7 лет назад

I've suffered AS for as long as I can remember, and I'm now 31. Nobody has ever been able to explain what I feel and live with (including myself) but you have hit the nail on the head. It's hard that you can't truly describe the many problems. Stay strong brother👊

@BuckInchuteranch1 7 лет назад

Damn Dean, I didn’t know your disorders were like that, hat off to you brotha!! My psoriatic arthritis seems like a walk in the park compared to this. They cycle me through Enbrel and Humira and Cosentyx injections. Keep your head high we are all here for you my man. !!

@PaulIbberson 7 лет назад

Much love Dean.... I know you've suffered, and continue to do so, which is why I'm constantly amazed and inspired by how you approach life; I watch your videos, and think you're a natural as a content creator and video-maker.... keep ya' pecker up mate!

@leelak9763 5 лет назад

I know you posted this video a long time ago but thank you thank you thank you....I have had fibro for 7 years and I’m 39. I’m currently waiting or testing for AS....I’m no longer working or the past six months and I’m so depressed because of it....this video gives me hope I’m not alone...people don’t understand when they don’t have it even doctors especially because I don’t look sick most of the time....I also have tried every medication including diet, CBD, MJ, chrio, acupuncture, physio and massage and wasted so much money....I have found a few thing that help me survive...but it’s a hard lie to live.....I’m waiting for injections in my SI joint as we speak as well....hope you are doing well.....thanks again for this video....

@VapingBiker 5 лет назад

Thanks Leela, I wish you the very best, and try not to let it control you. Sadly it's just something we have to live with and hope for more good days than bad

@andrewhenderson6032 7 лет назад

Dean you have been thought the wars your still here and your still fighting it and we will always be here for you bro 😀😀

@4BillC 7 лет назад

Holy hell! My words can not come close to describing how I feel right now. That has to be absolutely terrible and feel for anyone that has to deal with it. My heart goes out to you and I truly wish you more good days than bad.

@horseshoe_nc 6 лет назад

Dean, thank you for posting this. I have a friend that was diagnosed with A.S. at about age 30. And also had to have a hip replacement at about age 30. I am going to send this video to him. Hopefully it will help him in some way. Again, thanks for posting this. Hopefully it will help raise awareness for A.S. and Fibro.

@eddietazmaninc6447 7 лет назад

Hi mate it's Eddie from Eastbourne thank you for doing the video I'm a big strong person I'm a security dog handler with 3 crushed vertebra in my back and in pain most of the time but watching you getting up hit me and I admit I had a tear in my eye mate stay strong keep up the good work we all love your vlogs and all the work you do

@moose3968 7 лет назад

I'm truly at a loss for words... I've been sitting here staring at my first sentence for nearly 20 minutes in tears. After a long time watching your videos I am only just now aware of your illness and I am dumbfounded. Your cheerful and upbeat nature has brightened my day over and over and now I truly can not wrap my head around how you do it. It makes me a bit ashamed of myself for ever complaining about my day. I will no longer watch your videos simply for vaping advice but now will be watching for inspiration to make the best of every day. Thank you for all that you do and I pray that a treatment or a cure is found for these horrific conditions.

@MyVapingPlace 7 лет назад

Hey Dean, WOW, That was TRULY, one of the greatest videos/films I have EVER SEEN mate, both in the telling of your story and from an artistic level, and I have to say that took one hell of a set of BIG F-ING BRASS ONES, really, and all I can say is KUDOS mate, KUDOS!!!!! I'm sorry if that sounded patronizing or trite, it was NOT meant to, but I just simply DO NOT have the words (after SIX times and over an hour of free typing and backspacing everything out just to TRY to express what I'm feeling) to say how just how much respect I have come to have for you, seriously! I can see, hell the whole world can see, if they have even the slightest iota of humanity in their system, just how much pain it took for you to make this, not just physical pain, which must have been horrendous, but mental pain it took to tell your story as well, and IF, IF, it helps JUST ONE other person out there who suffers with these "things," then my friend, you have done well, no, more than well... And I commend you Sir in words that simply do not have. Take care, and God bless brother, and know that this is, and has come from the heart; let me know if I can ever be of help, Being in the States is a long ways away, but keep it in mind any way. L8R Bro, Joe M.

@roy4090 7 лет назад

Dean I thank you for this video and how strong you are, I have been at the point of thinking there is only one way and that was down, and that may in the long term be the case we can try to slow the drop. I have been dealing with the pain for 13 years now 10 since the diagnosis as you no not the easiest to get at that time. I really didn't know if there was any reason to go anymore but there is its me I am not the only one Thank you so much the timing of this for me was amazing my friend good luck to all.

@ericangel2984 4 года назад

Thank you so much for sharing your story. My wife is going through nearly the same situation. It is hard to watch her go through this. To know what she was capable of 10 years ago and then to see how hard it is for her now and know that there's nothing I can do to help make it any easier. I've had to adjust my thinking a lot. I have my own issues with pain. I jokingly say everything I own hurts. But it's not the same as what you and my wife go through. I don't think most people get that. I kind of have the mentality of "drive through the pain". I think this comes from having been in the military and year's of heavy labor jobs and working out. But for people that don't have these disorders, there is a major difference between my pain and what you are going through. I can rest. I can pop a heavy dose of "Vitamin I" (ibuprofen) and my pain dulls down to a tolerable level. People need to understand that for folks like you and my wife, this never shuts off. It is constant. There is also the severe depression that goes along with this. Again thank you. I will keep you in my prayers.

@puzzletherapy4u Год назад

Has your wife tried a carnivore diet

@ericangel2984 Год назад

@@puzzletherapy4u no. Haven't heard of that. Is it what it sounds like, all meat?

@143lovemusic 7 лет назад

Oh Dean, I'm so sorry you go through this. But I related to what you said when you stated that people look at you and think you're fine or ok. I have degenerative disc disease, and panic disorder. People look at me and assume I'm fine. I'm not. My mind is always going and at work I'm on my feet and I count down the seconds to break time. Unfortunately once I sit for break, Im done. Getting back to work is near impossible. I get what I call lightning strikes through my spine....it's unbelievable. The panic disorder is a whole other story. What I go through pales in comparison to your stuggles. Just wanted to share. God bless Dean! Keep your head up! 💜✌

@TaokosOg 5 лет назад

Thank you for making this video, it can be a very lonely and painful existence. I too suffer from AS and fibromyalgia. I co-sign and empathize with everything you're going through. When I see videos like this it makes me feel like I'm not only. It's difficult to have people truly understand what it is like on a day to day basis, many times I've been made to feel as if it's all in my head and even been referred to as lazy or just not trying hard enough. It's easy to get discouraged but I understand that everything I accomplish is through the lens of pain, so it keeps me going knowing that what I do not many can accomplish being a healthy individual. I truly believe that dealing with all this has made me a more compassionate human being. Much love for you and all that are suffering...

@mrjzchan 7 лет назад

Dean.. I really salute you. Knowing as a reviewer and your life is really an extraordinarily person you are. Is really my honor to know you.

@caolanmaher5907 6 лет назад

As a sufferer of fibromyalgia for two years now I found this video extremely inspirational and h helpful. Two years before my illness began I was popular active and filling my dream of running an events company. Since the illness I have stopped all of that but this video change my perspective. It made me realise that I must accept myself And just do the best I can do, even if it is small in comparison to what I used to do. Thank you and God bless

@Indominuswhips 7 лет назад

Man, I am speechless. You seem like such a jolly guy, so seeing you like this is just horrible (I believe for most of us subscribers of your Vaping channel)... I have to say: Hats of for you courage to talk about your disability and being so damn strong. I just want you to know that - eventho I do not have Fibromyalgia or A.S. - I feel incredibly sorry and sad at the same time to have to see you go through all of this. My thoughts are with you and probably will be every time I see you smile in your videos. Your strength will give other people that share your diseases so much strength as well and therefore (eventho - again - I am not one of them) I wanna thank you for being so open and forward with sharing your story. This video lets me see you in a different light. It lets me see you as a very strong and focussed man. Something that lets me admire you for it. Thanks Dan. I wish you many nights of good sleep and hope that your pain will not take over any more. Be strong. I know you are!!! Love from germany.

@vaperp.1078 7 лет назад

Hans Dampf sehr schön geschrieben!!!!👍

@wittpiper 7 лет назад

Mehr kann man nicht sagen, gut gesprochen für die deutsche Dampferschaft.

@ellisfield159 7 лет назад

Dean i knew you where sick just from context clues in the many videos and i knew you also had a form of arthritis based on a vlog where you where unloading the car. I am a EMT in the US and i am very familiar with the effects of fibromyalgia and i will say the rapidness of your progression is insane. I feel for you dean this is a message in life everyone needs to take. Ive gotten some of the best advice from people who suffer from major illnesses. I want to commend you on your impecable stregnth and your incredible work ethic. I want you to know that you have developed distant relationships with alot lf your viewers. This was a hellaciously strong and brave thing you just did.

@ShawnHoefer 7 лет назад

I watched my father suffer from a form of rheumatoid arthritis from before I left home until he passed in 2014. One day, his left hand would swell and cause him no end of agony. The next day, it would be his right knee. His doctors called it welder's disease as he was a welder for most of his adult life. I can't imagine the pain he suffered, and I can't imagine what you're going through. Thanks for your honesty, courage, strength, and, oh yeah, the reviews.

@skyedreams28 2 года назад

I had reactive arthritis in my early 20’s-when that cleared up I was diagnosed with fibromyalgia-I am so grateful to hear someone else’s experience-thank you.

@andyfairchild2383 7 лет назад

Thanks for sharing that Dean. I've been here a while, so knew you were quite unwell. But I'm saddened to hear the true extent. I'm impressed though, by your spirit in not letting it define you. Stay strong my friend and much love to you and Mrs. Biker x

@982golfer 7 лет назад

Oh Dean I feel for you. Just love your attitude and the way you manage your life. We have some things in common. Apart from vaping I share your love for photography and was semi pro at one point. I was an avid motorcyclist too. The bad stuff we have in common are several of your symptoms. I have progressive MS and I deal with daily life like you do - very positive and retaining a sense of humour which is so important. Love your presenting style on vaping video's and our community is richer for it. If it gets too much I'll come over and present with you. We could do a live wheelchair race! Carry on the way you are and you won't go far wrong mate. :)

@Sinnistral 7 лет назад

Dean, you are an inspiration. I can't fathom how you can be such a spark in front of the camera and in the background be in such a terrible predicament. Keep your chin up - science and medicine never stand still and so just because you've hit a bit of a dead end at the moment doesn't mean that there isn't something just around the corner that can help you out. Always remember that you're still a strong man and you have 54 thousand voices cheering you on. 💙

@ShiteLines 7 лет назад

Actually in tears. I really shouldn't have watched this in work. I knew things were difficult. I didn't realise how difficult. I know your health has failed in the time I've known you as I've saw the things you post, the scooter then the wheel chair, the change in personality when you're sore. This is a fantastic thing you've done. I had no idea what these were and this has explained them perfectly. This will be a massive help to anyone suffering from these diseases. In fact not just these diseases. I love you mate.

@devgron 7 лет назад

Dean You are a awesome. Cant put my words together after this vid... And Your wife! She must be the strongest women of them all!

@magmakum4628 7 лет назад

My gf has fibromyalgia. She has her ups and downs. Now she's working on her thesis about 10hrs a day in a lab, studying and doing chores the rest of the time, living alone in a big city (unfortunately we go to different universities). I can proudly say she is MY FUCKING HERO. Don't ever take anything for granted, every small little insignificant thing can be a real effort for someone else. Thank you for making this video, I hope it will spread some knowledge on this obscure subject (let's not forget that even diagnosing fibromyalgia is a struggle, we spent 3 years running around and going to doctors). Keep it up, and good luck Dean!

@Michijuan47 7 лет назад

I also spent my time with the doctors. They told me fibromyalgia and a few more things. The anesthesia did not do the same thing to me as everyone else, the internal scars do not heal like it should be normal. The continuous pain of the joints, early osteoarthritis and a good amount of symptoms. For your next medical examination you could consult your specialist about Ehrles-Danlos. When they diagnose Fibromyalgia many times it derives from another thing and to me at last they were diagnosed to me, Luck and mood.

@thehatemeister3062 7 лет назад

We love you Dean! Stay strong man.

@purplesmurf8913 7 лет назад

I’ve been waiting for this video dean , very we’ll explained. I suffer from AS and have done since my mid teens (started very young) it started as stiffness and progressed to not been able to move at times. Some days I look normal fit and healthy but the pain is always there and mine is not as bad as yours I feel for you dean I know how much mine hurts so I can only imagine the pain your in , and your right dwelling on it doesn’t do you any favours but sometimes it’s hard to find the energy or the motivation to do simple tasks but nobody seems to understand they just think ur lazy and can’t be arsed and then there’s the sleep to top it off can’t sleep at night but can sleep all day ........ Thank you for everything you do your awesome , chin up and stay strong

@HaloClouds 7 лет назад

Dean, I'm inspired by your strength. Congratulations on finding the courage to share this with the world. I too suffer of joint pain and the doctors have not found a reason why. It’s not as bad as it is with you, but I’ve had to stop using a hand for a day because of the pain. Or have to walk slower because of my knee. I thank you for your openness and I truly hope that you can overcome the pain doing what you love the most and with the people that love you the most. Keep the chin up my friend and I will see you on the internet.

@makis206 7 лет назад

I hope that our love that we send from Crete makes you feel a little better Dean. We love the real way you smile, we love the way you just "talk" to all of us, really hope that this message will make you feel a little bit STRONGER my friend. Stay strong, keep just to "be" the guy we are happy to watch in every new video of him! You are a wonderful person, just keep "being" near us. It's very nice to "have" you in our lives, do your best to continue to do that my friend! :)

@Alex_the_Dude-1084 6 лет назад

Much love, Dean, truly an inspiration! I suffer from a mental illness that can manifest as extreme physical pain and can make it hard to do anything, nothing close to what you deal with though. You are one of my favorite reviewers and I love watching your videos! Keep on pushing! Cheers!

@dominicpelosi6591 7 лет назад

My wife fibro.she was diagnosed 3 years ago. Even though I know what she goes through I was stunned to hear of all the effects the illness is having on your life.we know from your posts on Facebook that there is days that you can not do reviews but never in a million years would I have thought it was that bad.all I can say is my heart goes out to you and Mrs biker. Your illness dose not just efffect you but her as well.for someone so ill I am amazed that you comes across as such a happy guy on the reviews.as some one who has being watching you for quite a considerable time because 1 I actually value your opinions.2 you always come across as someone you be happy to share a pint or 2 with so more of a friend than just as reviewer. I am more than happy to wait for your reviews .i especially like the live reviews with mr Todd. I have rambled on enough , I send all my love to you and mrs biker,we will be here for when ever you do your reviews

@cornishholly 7 лет назад

Typical my brain fog has kicked in the moment I want to write something! I have M.E and fibromyalgia and everyday is a constant battle, it would be very easy to go to bed and stay there and believe me some days I want to, but then I don’t want to waste my life lying in bed. So the quandary is battle through the pain etc so you can go outside or just give up? To me the answer is go outside, do what you can whilst you can. Having an illness that no one can see is another battle because if you can’t see it, it must not be there. Thank you for making this video Dean I imagine it was difficult for you, thank you for speaking about your illnesses the more people hear about them the more people will be informed and maybe become more accepting of them.

@melindaloo 6 лет назад

Great video for raising awareness about Ankylosing Spondylitis - sorry you are dealing with this rotten illness and for the severity of it. I've had AS for 37 yrs but was fortunate to be diagnosed quickly (after 2 yrs) - very quick for a female. The first 24 yrs, I was on Voltaren and Sulfasalazine which did little to help with the pain and nothing existed to slow the progression of damage. In 2004, I was able to try one of the biologic medications, Infliximab (aka Remicade) and within 4 days after my 1st infusion, the pain slowly began to magically decrease. I was stunned. After so many years of pain, plus many years battling iritis (inflammation that attacks the eyes in 30% of AS sufferers), I was amazed to find a medication that was actually effective for me. 13 year later, I'm still on Remicade, off all other meds, and deal with only a fraction of the pain I used to live with. It also seems to have slowed if not stopped the damage to my spine. I'm not sure if you have access to biologics in the healthcare system where you live (I'm in Canada), but with the severity of your condition, I would imagine that you'd be a candidate for either Remicade or Humira. These medications don't work for everyone with AS but I always wish others might benefit as I have. I wish less pain on everyone with AS! There is an AS forum (KickAS.org), lovely community of folks if interested ... as you say, "You are not alone".

@wilbearworks 9 месяцев назад

Thank you for taking the time to explain these terrible diseases. I have suffered for 25 years now and you are the first one to get close to how I feel. Thanks again for putting this out there.

@SavvySkyLady 2 года назад

I suffer with both of these greatly. I also have Sacroiliitis. I have a high pain tolerance and I thank god for that now a days. The last 3 years for me have been hell. Between the pains,flare ups,resting only to swell up,muscle pain,sleep no sleep, exhaustion, shattered hip feeling every day, muscle spasms and lock ups, brain fog, migraines…I’m just miserable. I’ve had to take myself off all medications except Tramadol for extreme days/nights because my gut is trash. I also just got my dream job handed to me and am running my own store. I am so afraid of losing my dreams to these diseases so I keep pushing myself into a state of pain fog where it just takes over. No one can see my pains, so I have been reduced to being called and assumed a liar of the extremes, a faker, attention seeker,the list goes on. I’m not at a loss, I have life to keep me getting up and out of bed in the mornings, but it’s getting very heavy and tiring. Anyway I’ve said too much. Thank you for your video, it is nice to not feel so debilitatingly alone and hopeless.

@mrvispillo6282 7 лет назад

This is one of the most encouraging, powerfull, honest and touching videos I saw in the last years. I will not give you sympathy, because I think you do not want it, but I give you all my respect and strength to stand what ever you will face. Even if I am just one of those subscribers, I feel proud to know you at least a little.

@SingerOfTruth76 7 лет назад

Man, this is hard to hear. Especially from such a good dude as you yourself are. Thanks for sharing your story with us, Dean. You’re in our thoughts and prayers 100%! Keep pushing, brother.

@cuzsteve 7 лет назад

You only touch briefly on your channel on the subject of your ailments and tend to make light of it - the explanation helps us understand the compounded issues you face. The fact that you rise to the challenge and win, even if not every time, shows a strength of character you should be very proud of. The content you create really helps others in many ways (you helped me drop the cigs in a big way from your work by explaining the workings of vaping better in your own style) THANK YOU Dean, and I wish you all the strength you need for the future.

@richardstead4062 7 лет назад

Dean, I can empathise greatly with your challenges. As a 54 year old man that's has had AS for 30 years. The pain is not explainable...there are no words to describe it. On a personal level I have recently suffered 4 strokes, but I find that after many many years of horrendous pain I find that it's all about the mental and emotional stability gained after years of going total mad about my situation. LAUGHTER (I laugh all the time)...a sense of proudness that I am still keeping on keeping on. My inner strength is like a house made of steel that will not break through anything. My joy of living has never been better...its a beautiful thing despite the pain and fatigue. You may friend are an inspiration to many...I hope my words are an inspiration to you. Peace brother!

@jameswhiting7113 7 лет назад

Lost for words mate... Whatever else, never feel embarrassed with your disability, everyone who knows you, know its not your fault and just want to help. Everybody else, don't matter. Thanks for this video, I hope all who see it find it as inspiring as I have. I have type 2 diabetes and a heart condition and sometimes it is difficult to do what is necessary to keep both under control, but at least I can, with life style and medication. Stay strong bud, you are in my thoughts.

@terrygupton1397 7 лет назад

Hi, my name is Terry and I’m soooo glad you did this video, I was in a accident with a cement truck back in 07 and ended up having to have surgery on my back, 3 months later I was told I would be disable the rest of my life. The reason I’m so glad you did this video is I have many of the same problems that you’re talking about and one thing that ring out was when you said and that’s such a treat, I know Exactly what you mean. I’m going to let my doctor is in pain management doctor I’m gonna show him this video so he’ll understand because I’ve had a hard time putting into words how I feel, and the brain fog just is a killer, anyway just wanted to say thank you and as always hope the pain goes away, thanks.

@mumsiedarkdragon2296 2 года назад

Had a wee cry watching you get out of your chair, not cos I feel sorry for you (I do tho) but because that's me getting up out of a chair. Diagnosed last year with AS and Fibro just yesterday. It's so defeating some days. I try not to cry from the pain but it doesn't always work. I know this video is old but I hope your diseases haven't progressed too fast since. Thank you for sharing your story 💪

@KarynHill 6 лет назад

I deal with an excessive amount of pain, brain fog, and fatigue. I'm sorry to hear that you do as well, and worse than what I face. You've been my favorite vlogger for a while and this just puts you, and now Mrs. Biker, more solidly in my heart.

@aussiecamperman8382 7 лет назад

Dean. You are a very brave man, Kudo's to you brother. I know how much it must of hurt , not only physically, but mentally to make this video and you Sir deserve a medal. Unless someone is in your shoes, they do not know what you deal with on a day to day basis. Not to take away from your inspirational video, but i can sympathise with what you are going through. I have had 3 Spinal fusions, soon going for a knee replacement, had a Cancer scare as well, living off Morphine Tablets twice a day just to function, i suffer from depression as well and to top it off, i am also a Full Time Single Dad, and i have done it all on my own since my daughter was only 18 months old, and now she just turned 14. The way i deal with my life, is over 2 years ago i became a Australian Scout Leader, and that has helped my state of mind immensely. It gave me something to do, and the best part is giving back to the community in the sense of watching young scouts grow in so many ways and that in turn helps with my state of mind and what i can achieve with my disabilities. So Dean, i totally understand how you feel, not only physically, but in the state of mind battling every day as it comes. All i can say is, Dean, you are a very strong man, you are not alone, and it is OK to ask for help or share your feelings, and you know what, by doing this video, you may not know it, but it is also helping your self in so many ways and others. You brought a tear to my eye watching you get out of your wheel chair and im a grown man ( 47 ). I can not say it enough, you are a very Strong Inspirational Person. Forget about yesterday, do not worry about tomorrow, live for today.

@neurotoxic6407 7 лет назад

Dean, my mother-in-law has Fibromyalgia so I undetstand that part of things and I know what that alone can do to a person. I can't even imagine how much worse it must be for you. You are a fucking warrior, my friend. Even though you endure all that you do, you still do work with charities, the RU-vid/vaping bit which has helped so many people make the change to a much healthier alternative. That takes a strength that not everyone in this world has. From Ravenna OH, we're sending every bit of love we can for you.

@Lets_Go_Carlitos 7 лет назад

Dean, I'm so sorry you have to deal with this, it's alot more serious than I thought. You are a very brave man and an inspiration not only to fellow sufferers, but to anyone going through difficulties in their everyday lives. Keep having it large!

@The_Spectre. 7 лет назад

Dean, after watching this, I respect you a great deal more. I never knew the constant pain you have to endure. Thank you for sharing your reviews and your knowledge with us. Most of all, thank you for sharing your story. My best friend has crippling rheumatoid arthritis, so this hits very close to my heart. My thoughts and prayers are with you.

@dougwatkins5441 7 лет назад

Hey there Dean so glad you told your story I am sure it took a lot of courage and I'm sure it will help people understand what we go through. I am a 56 y/o man and I've been disabled since 2010 with severe stenosis, arthritis to the degree i've had a total hip replacement, my spine has auto fused itself. And as far as fibro. All the Dr's. Here in the States will tell me is they are not sure but that I do have an autoimmune disease. I worked as a welder and heavy equipment operator since I was 16 y/o and this has put me down to the point that I feel worthless to my family and a burden to my wife of 36 years. Who never complains.. your story has touched me and somehow I don't feel as alone. I've enjoyed your vaping videos for a long time and I have nothing but respect for your opinions and for your guts to tell your personal story. I'm not religious but I am spiritual so I felt I should say may God bless you and help folks in our condition and all who suffer. Doug.

@vikramchanna5571 7 лет назад

Man, I really appreciate you doing this vid, because it takes a lot courage to speak out on a subject like this in a public space like youtube. I think a lot of people can relate to this, in one way or another. Many people suffer from some illness that deeply affects their lives, whether it's fibro and AS like you, or something else. Much of the time it may seem like we're like everyone else, just doing well. And other people doubt there's anything wrong, perhaps even say we shouldn't complain. But what they rarely see are the times that whatever we suffer from acts up. The times when that illness really gets to us, puts us down, hurts us, and makes normal life impossible. That's what living with a handicap is like. It's taking medication, living with the pain, and embarrasment. That's the side of us that people can't see, what we sometimes try to hide or downplay, but is very real to us. But you're right. It's not what makes us who we are, we are not our illness. It's how we deal with it that defines us. I really wish your condition will improve, and I hope you keep doing what you do, because what you're doing doesn't just mean something for you. It means something to us as well. Thank you so much for this vid.

@paulwilkins1756 6 лет назад

Dean your a legend mate you have my up most respect and admiration thank you for this video more people need to understand Ankylosing Spondylitis and fibromyalgia

@artbeach1958 7 лет назад

What a wonderful tear jerker this was! I wish you all the best! My wife has Fibromyalgia as well, ( not to your extent) but she is getting worse as time goes on. Much respect to you for sharing your story! You are such an inspiration to me, my wife and many other people. I wish other people could really understand how Fibromyalgia effects a person and just how unpredictable this illness is! As I watched you describe your Fibromyalgia, it was as you was painting a picture of my wife.

@jamesmckay3568 6 лет назад

After watching your reviews for some time... I stumbled across this. I'm still very much processing what i have just watched, and trying to reconcile it with how much empathy i have for anyone living with such a hidden yet at the same time such debilitating conditions. I am very blessed in that i am healthy. I think a lot of this you tuber business is about becoming friendly with an audience, and as daft as it may sound i think i watch your reviews from months ago on products i don't have much intention of buying, simply because i feel a sense of friendship with you as a content producer. The perspective i have gained from you, allowing us all this insight into the struggles you face everyday i feel is something so very valuable. It is inspirational, and of course heartbreaking. I thank you Dean, for sharing something so personal and putting your vulnerabilities out bare for us to see so that others may feel that they are not alone, and that they too can continue to press forward, with purpose everyday. I thank you for carrying on everyday, making video's, getting out of bed... for just continuing as best you can despite challenges that i can't really wrap my head around. Please, continue to "ave it large" and remember that you inspire me and i'm sure a great deal more people.

@SusannBryn 7 лет назад

Thank you Dean for your story,I feel so with you. I have fibro myself. Stay strong

@OphidianVapes 7 лет назад

Words fail me fella, tried to type a wee note here several times. My sister in law suffers greatly from fybro fog and it's hard seeing her frustration and struggle to get meaning out. We are all here for you and greatly appreciate the HUGE effort you put into your reviewing. Shout if we can help in any way at all. 'Ave it large'

@mujiworld3739 7 лет назад

When i met you back in April, in vape Jam UK and then started following you i never had any idea the struggle that you were having. After watching this, which by all means of consideration might be one of the most inspiring stories on 2017 in my book. And even for someone who have constant back pains and bad knees, your words resonates loud in my ears. With all my love and prayers to you Dean. Muj

@CyberBrew 7 лет назад

The brave face I see in your videos would have never allowed me to believe that you were dealing with these conditions. Not only do I now know, but I can truly understand why. I only hope if I am stricken with any illness I can muster the bravery in your heart. Thank you for sharing and allowing us a window into your soul.

@dorothyanderson614 7 лет назад

Hi Dean, Thank you for sharing this. I know it was terribly difficult for you and I am proud of you for having done it. I don't have AS or fibromyalgia but I am suffering from diabetes and neropathy caused by the diabetes and have many of the same symptoms with regard to the pain in the feet and legs as well as the fatigue and insomnia. In fact that's how I found you, late at night watching you tube videos about vaping as I was trying to stop smoking. Anyway I just want you to know that I admire your strength and I stand behind you and wish you well always, your in my thoughts and prayers.

@voskosco 7 лет назад

Big thumbs up Dean! I've been living for 5 years with a person like that and she is a fighter LIKE YOU and that's why i love her! She has been exactly as you describe (with the fatigue, morning muscle stiffness and all sorts of symptoms like said).... I can only be with her, for her and support anyway i can. Wish i could do more.. Great motivation : "Illness does not define who you are!!" You've touched my heart... Thank you and God Bless you!!

@sevencheesepizza3660 7 лет назад

Thank you so much for sharing Dean, you're an inspiration. Not only to the people suffering from similar disabilities but also to "healthy" people to not take their mobility for granted and to squeeze every last bit out of their lives as long as they possibly can. Dean doesn''t need you to feel sorry for him, he needs you to appreciate what you have and get sh1t done. To overcome whatever obstacles lay between you and what you want to do. Think of that the next time you find yourself f4rting around wasting your time.

@joshiles 7 лет назад

Dean just know that you are loved and supported through all of this by your friends and family out there in the community, I consider you as both. Your smile and laughter always brightens my day. I can't say anything that hasn't already been said, I will just say that you have made an impact on my life and how I tend to view things now. To know that underneath that big happy exterior is someone who deals with something that strong just makes me realize how insignificant all my bull shit is. Love you brother.

@BaddaBigBoom 7 лет назад

Don't let it get the better of you Dean, you are a fascinating guy with lots to share, I very much appreciate your presence on YT. All the best.

@edhughes7880 7 лет назад

Dean, all our thoughts and prayers man, keep fighting...

@MsFlame2000 2 года назад

I think you were very brave to come out and talk about these things. I haven't seen too many men talk about their chronic illness. I have fibromyalgia and I have to say, that you are well spoken and concise about the struggles in living with chronic illness.

@Sidday91 7 лет назад

Dean you are now and always will be an absolute gentleman. I would love to shake your hand. Even with the shit you've gone through and are going through you've touched so many people. You're an inspiration and I commend you on your work ethic and your ability to not give up. Thank you for sharing this with us, it's nice to see that while you may not physically be on top form that you've remained true to yourself and never let it best you. Also thanks for making us cry. Much love, you beautiful bearded bastard

@mathiasanders3946 3 года назад

I have RA and Fibro for a few years. It was starting with backpain then a few weeks later, the infektion spreaded out to my whole body. Can't walk, can't talk..can't think. It felt like my body was falling apart..and the pain was unbelivable! Now i'm better under threatment (Cimzia)...but still have bad days and very bad days. The good days were gone and just a shadow of the past. I hope, you're doing well and the best wishes for you!

@JaredTG. 7 лет назад

Holy hell man how do you do it. I couldn't imagine even thinking about life while trying to deal with such things. Thank you for making this video because not only will it help people who also suffer the same things but people like me, who have problems yes but after watching this my problems feel like nothing in comparison. Call it a wake up call or swift kick in the ass if you will, it puts things into perspective for me. You've got to be one of the toughest people I've seen. Always know us subs are here for ya brother we're all one big screwed up family of sorts. Stay strong Dean.

@fishdpx 7 лет назад

Dean, my mom just diagnosed with fribomyalgia and I can feel what you have been through in some way. Keep up the good work and as my mom say "never let anything destroy ur dreams because we only live once and that's why we have to fight. Because the life is a fight." :)