Fighting To Keep Myself Alive Is Exhausting...
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- Äas pĆidĂĄn 12. 03. 2022
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#spinalcordinjury #paraplegic #wheelchair
whenever people are like "we all have the same 24 hours!" it's like no. no, we damn well don't.
I haaaate that! I have heart and lung failure. I sleep/nap a good 14 hours a day, and still exhausted. It takes me forever to do simple chores, because I have to stop every 10 minutes (at most) and rest for 5 minutes (at least).
I agree we're all human except for everybody's different
I guess in math we doooo⊠but in how long stuff takes me & how exhausted I get sometimes
I wish we had a âtime stopperâ to average that out.
I just spent over an hour in the bathroom, went into a ridiculous spasm, banged my leg on the chair, cursed like some raving manic..
BUT Iâm all fine now, except I forgot deodorant and to brush my teeth. I know⊠Iâm going.
One quote that irks me. đ€
â@@vividdawn913it's even worse when you can't sleep, I've seen that, people dying that can barely sleep at all
Bro itâs been a year since you made a video. Please let us know that you are still with us đđŸ
@ember4288yeah just noticed the Instagram account is gone too. I hope heâs okay!
true
I fucking appreciate this video so much. The frustration is beyond real.
People need to do MORE of these videos. All the disabled "influencers", don't show how "happy pappy" everything is, show the true reality of our suffering, just like here! Finally! A topic that truly matters!
Oh and also we have to be hostile to the world! They're beyond apathetic and hostile to us! FUCK THE WORLD!
Same. I have been hung up on, I have called repeatedly, I have gotten treatment only because I started crying in the doctorâs office, yelled and ranted and begged. Somehow, it does help to see that someone relates.
@@bryanlittle7940is there not a group chat where we could all talk. I know I sure could use some advice and maybe a laugh.
This type of treatment is exactly why Iâm becoming a Social worker to go into the medical field for patients. Specifically, chronic pain and chronic illness patients. They need more support and they deserve it because this takes so much of our energy and itâs been too long that this community has been overlooked. Thank you for making this video. From one chronic pain/illness person to another. đ
I have SCI and chronic pain. And Iâve been treated like an addict because of the CDCâs 2016 prescribing guidelines. We warned the CDC chronic pain patients would be negatively affected but they didnât care. But now, 6 years later, the CDC will come out April 11 saying they were liars and stupid basically, and that they caused harm to chronic pain patients, and the opioid epidemic is a myth because itâs illicit drugs causing overdoses, not prescriptions. Addiction doesnât even start out with a prescription like they would have everyone believe. But the damage has been done. Itâs not fair and it makes me so angry.
Many years I thought social worker meant socialise lol like communicating with people I donât know it meant helping people in need
I love my social workers, they helped me get things done. Appreciated
just have to say: i literally went back to school 15 years ago in order to have the power to be a social worker, thinking "social worker" title like LICSW would make other organizations listen better to me when trying to help others. sort of it did, but in no way was it very powerful. now, 15 yrs later i am on the other end, needing help from social workers, and still, omg, still what i learned 15 yrs ago is outdated, and it does not matter that i once knew how to help a little.... my final thought: the system is broken even though the kindest people are helping out. am shocked now to find that what i was able to acquire for disabled clients 15 yrs ago when i did now have sci is no longer even helpful info, omg so, dear rachael, would love to know if you achieved your social worker goal, and i wish you all the luck in the world!!
Your awesome đ thank you
This is so true! Disabled people are not angry, they are just utterly frustrated with 1) pain, 2) inconvenience, 3) extra bills, 4) struggle to make an income, 5) problems with doctors, 6) wrong medication, 7) discrimination , 8) fear of the unknown, 9) pressure to perform as a person normal abled person, and the list goes on... đ
The most painful is when loved ones get irritated cause they don't fully understand what it is ACTUALLY like constantly living with a problem that we don't want in our life đą
Indeed
Iâve been trough all that shit and it is really exhausting, sometimes i just want to give up. Thanks for letting the people know what a disabled person has to deal with.
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I'm not paralyzed but I'm disabled since I was born. I definitely relate to this video. At one point my mom almost went to the newspaper because my insurance refused a new wheelchair when mine was broken down and i didn't fit in it anymore, i was literally sitting on the wheels. Their logic was that I could crawl to the kitchen and bathroom and back to my room so i didn't need it.
Sorry to hear that...đ«
yep. I was looking into getting a wheelchair and then I saw that you don't qualify for insurance coverage if you can ambulate around your house. like?? I would like to go outside sir đ
I believe insurance is a scam for many reasons
This is brutal honesty, Iâve been brutally honest with people about this stuff in the past but I think they think Iâm joking, I commend you for not crying Richard, because my frustration turns into tears so very often.
People in the medical (specifically if you get admitted to a general hospital) and supply field act like I chose this life, and I want to be catheterised and scooping out my own shite. đĄđ
Oh I feel you! Recently my family doctor turned me down to prescribe medication - I would have to got to specialists to get the medication. As I am still waiting for my power chair (for months) I need assistance going outside the Appartement. In the email the doctor was really like straight with me. I immediately felt like I should apologize. But what for? For being sick and disabled?? Really unfair! And to me itâs also often that the tears of frustration and sadness are coming. Keep going strong!
âMy frustration turns into tears so often.â So so true. I was treated so badly by an endodontist I left in tears and the staff didnât care. Once they found out I was on Medicaid they practically shoved me out the door. And they said they accepted it. Now itâs impossible to find an endodontist that accepts Medicaid, so Iâll probably have to shell out $1500 for a root canal.
Bro. Had a 90 min bowel moment this morning. It does test your limits. Glad they are n infrequent. Stay strong!!
T7/8 complete para 22 yrs.
Pretty much every year that most people had was represented by the word "fuck."
@@gassman55 I USE A SHIT BAG AND LOVE IT I HAVE NOT SHITTED ON MYSELFE EVER SINCE MY COLOSTOMY PROCEDURE WISH I WOULD HABEEN TOLD SOONER OF THIS LIFE CHANGING PROCEDURE
So Iâm watching this as Iâm on the toilet doing all the same stuff. And just two days ago I too wasted an hour of my life cleaning myself up after what I call a para-poop.
Youâre right. It is so hard to deal with and embarrassing when itâs private. But I canât imagine the strength required to make a video about it all and put it out there for the world to see.
I want you to know that you posting this made me feel a little better about my shitty day, so I want you to know about mine in hopes that it lifts your spirits as well.
Misery loves company right? Even if weâre a few thousand miles apart.
Who can I share this with to make a difference? I don't deal with this, but the employers need to know how bad their companies are. Why are they lying to customers? Maybe the insurance company can organize them.
@@kdcbattlecreek the medical supply company needs the prescription from the doctor. But the prescription needs to have specific information, anything missing and doc has to send it again. The doctor's office usually will say they sent it but don't understand that they didn't include a certain detail. So we call them again and again until they get it right. Quite frustrating for everyone.
I love that you said embarrassing when itâs private, weâre not even talking about when we have an accident in public. Feel your pain but pain is progress
When you rant, itâs my exact frustration. Everything has to be planned, everything is a struggle, everything is ridiculously hard, people who you need to concerning medication, disability aids, wheelchair struggles.
Richard, idk if you still read these comments or if Iâm just putting this out into the void. But your videos have been helping me so much. I have POTS and have been using a wheelchair the past couple of months. Iâve been watching all your stuff to learn how to do life differently. I had enough energy to go out yesterday and was able to pop a wheelie to get into a public restroom and I was so fucking proud of myself. I learned that from you.
I hope youâre in a place where you can put your mental health first. Youâre missed and loved. Thank you for everything. I hope you know how much of a difference you make in the world. Sending you love and light with every obstacle I tackle in my wheelchair. â€
Totally agree with you, they need to start using the social model, not the medical model for all things, it would make somethings more accessible, and perhaps in my dreams that we have an even playing field, I donât think I will live to see it. The costs of being disabled are not appreciated by those who donât have to go through it. All need to experience this, at see what are the frustrations are
Only in the US and Canada, other countries dont even have this barrier
This is so true. I have so much anxiety any time I smell poop or pee and constantly check myself if something came out. Abled-bodied people often say "oh that pace or this place is accessible and wheelchair friendly" while I know very well that is totally not. I think when everyone turns 21 it should be mandatory for everyone to be a wheelchair user for a few days so they at least know how it is.
p.s. would love to see a daily vlog
COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.
I canât speak for others, but this video hits so hard on every level. Itâs pure truth, only the ones who know⊠know. I never have had the guts to be open and explain the things youâve discussed through this video to even my bestest friends. Iâm so self conscious and want it all to be private, nor do I feel like itâll change anything. The part about suicide you brought up, and just the overall frustrations you mentioned itâs like Iâm your twin. I sit here day in and day out and try to understand what options make the most sense. Bless you Richard
COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.
Love you, man! Pissed my bed last night lol life ain't fair and even less fair when you're disabled. Your videos are a beacon to me. You're an angel, Richard!!! Thanks for everything you do!!!
COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.
Dude I canât thank you enough for this video! Iâm only 5 months into being a paraplegic and am going through this same exact shit already! Takes some big balls to post this video and I want you to know I appreciate it brother!!
COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.
Man this is the best description of our daily struggles đ excellent work
So glad to see these types of videos. My husband is a t7 para and deals with these things all the time. He is a veteran so all of his supplies are sent from there but he is dealing with all the other issues at this time he has a terrible wound that we are leaking with. Thanks for sharing.
This is the truly the best most honest video you have ever done! Thank you on behalf of all those that are paralyzed.
Btw, you rule with your raw honesty!! You will be the change.
I know the feeling Richard. Sometimes it all sucks. I hope that things will get better. Stay strong đȘ
COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.
I hope you know how much your transparency helps those of us who suffer many of the things that you do, but always thought we were alone. Thank you so much. Youâre our hero. I know you donât feel like one, but you are a godsend to so many of us.
Keep your head up mate. Everything happens for a reason. I am a T2 and feel your pain. You need to start posting again!
This video is exactly what I needed to hear! It's nice to know that I'm not alone. I'm paralyzed in my legs as well and have had a HOSPITAL wheelchair ever since the accident and I've told rehab MANY TIMES that I'm a very active person and need a proper wheelchair and for TWO YEARS I've had to FIGHT for a PROPER wheelchair. People really don't care when it comes to people with disabilities.
COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.
Of course, it's all about hbtq rights these days, handicapped rights is not as "sexy"
I hope they sort this out for you soon. I think itâs great you are so open and sharing. Itâs so frustrating and hard enough being disabled without dealing with beaureacracy of companies. Iâm so sorry. Sending you huge hugs, Richard.
Itâs just so upsetting. I had a colostomy done after I got out of spinal and Iâm so grateful to have that. I think people in general donât understand the extent of impact spinal cord injury has x
COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.
I know this is a couple years old, but damn do I hear you. It can be so damn frustrating and most just don't have a fucking clue what we as paralyzed people go through. Here's to you, 38 years spinal cord injury T7.
You have been a resource and inspiration to me. I am only dealing with a bit amputation, so not as disabled as your situation, but ugh the insurance and vendors and doctors can drive me nuts, I go in person eventually, because when I stand up, mad, I am 6'5" and can be imposing. Wish you do much luck and brotherly love.
So much of this rings true for me. The daily struggles just to start the day, compounded with being ill. I've currently got a UTI and it's doing my head in leaking and needed the loo all the time. In the UK it's a bit different, but a few years back my catheters were discontinued and I wasn't told. Came to collect my catheters only to be told at that point. I had like 4 days supply left and had to reuse and sterilize catheters till they could source new ones. I dunno how I didn't get a UTI then.
Thank you so much for this video. All my life I wish I could convey what I go through on a regular basis but you had the balls to put it out there for the world to see. Disability is NOT inspirational. It is NOT for the abled to feel better about themselves. Thank you.
I hope this video goes viral and makes these people wake up and realise how disruptive they are to people's lives!
I see my support comment was targeted for deletion as well. Iâm sick of this crap
I have literally ran out of catheters so many times because of this exact thing happening. It is ridiculous, Iâve been dealing with this since I was 18, I am now 50âŠ.so 31 years of BS!!!!!! I feel your pain brother! And we have the same guy for our catheters lolâŠ.he is awesome!
Being paralyzed is sometimes a bit hard that many of us have to live with. We must and have to be stronger than normal healthy people. Good luck to all..
A bit
@@kgspvgsp7569 how about a tad
Absolutely! Keep strong!
@@paralifetv-youreverydaywhe8314 I have been dealing with it since the Vietnam War 1966-67. Thanks and be strong...
@@johnbethea4505 Mad respect for you. I'm from Canada but played a lot of wheelchair basketball down in the states from 2000-2009. I've play with and against, became friends with many and some who served in the Vietnam War.
Do you get the feeling that some powers to be do not care if disabled or chronically ill people just die?
That scares me & I have to be honest and admit that the medical community and/ or insurance providers are not reassuring, and I don't think the government is helping matters.
What can we do?
You're a warrior and don't forget it â€ïž
I agree, it scares me too, especially in the medical community. The people in the world seem to be much more kind and helpful. I am not paralyzed but I do use a manual wheelchair for other illnesses. Just getting a doctor who would give me a diagnosis was like pulling teeth. They treat people like they are faking their illness.
With everything I've learned in the last few years about the American health system, this doesn't surprise me. Even though I'm not in your situation, I can blindly guarantee you that it's nowhere near this difficult here in Germany (or anywhere else in the European Union).
In Germany, you would get a prescription from your general practitioner. You take that prescription to the next pharmacy of your choosing. And they hand you whatever the prescription says with no or almost no extra fee (I'd say max. 20âŹ). If it's in stock, you can take it with you, otherwise they will deliver it to your home free of extra charge.
The US always highlights what a free country it is. I'm not saying Germany is less free (most of the time you could consider Germany more free than the US), but what does it say about a "free" country if it's unable to keep its citizens healthy?
I'm an American, but the healthcare system here makes me so angry sometimes. Some of us are lucky to have good insurance, but so many don't. I have a friend who is a nurse and she has the shittiest healthcare. Crazy, huh,?!
In the US, we used to get a prescription from the doctor and take to the medical supply or pharmacy and it was handled as you said. Now they do everything electronically. Insurance companies in this country almost always deny claims on the first submission. They have deadlines for claims and their goal is to not pay only to take our premiums. In this video the medical supply company said that they needed a diagnosis on the form that was sent over to get the insurance to pay. I don't know about healthcare in other countries but in the US they use a ICD book. (it used to be called an ICD-9) Each illness is assigned a code. Because his disability is permanent, it is assigned a particular code. The insurance company wants the code every time a claim comes across their desk. Without the code typed in, they use this as an excuse to deny payment. (I worked in medical billing) the majority of people do not know this information.
@@PennyLester Thank you for sharing! I'm American and "newly" disabled, and I have a feeling I'm gonna need to know this later on.
thanks for sharing your struggles. it helped me understand my husband's frustrations better.
Dude, I'm really enjoying the raw honesty in this video, and the frank depiction of your emotional state. I much prefer this to seeing you act happy and cheery all the time. People want reality, not unnatural cheeryness!
I have Charcot Marie Tooth disease(CMT) and because of it my muscles have weakened and lately the muscles that control all that stuff is getting worse. I wake up sometimes with crap in my underwear because I had no idea I had to go or what I thought was gas was not. I'm sorry any of us going through any of this.
I do want to thank you for having these pages and sharing both the fun, the necessary and not so fun times of being disabled and a wheelchair user.
Thank you, Richard. Content like yours is saving lives every day whether you know it or not. Keep being raw and real, the world needs to face the injustice it thrusts upon us. Maybe itâs past time we get angry!
I so appreciate your honesty and keeping it real. We deal with such insanity! I had a doctor tell me I don't need a wheelchair yesterday, but I can get a cane. WHAT!? That doesn't help pain and balance dude. Then lie to my face that he got a my pre surgery stuff approved for an out of network provider that he likes. đĄ Please stay safe, it hurts to think you'd ever hurt yourself. Take care Richard.
I am a new amputee even with physical therapy I still have struggles.thanks for your honesty
Hon, I think you need a hug. Did u feel that, that was a hug from me to you. Stay positive. It's just a bad day, not a bad life.
Anger reversing into depression. Clear description, very powerful, thank you. Your generosity in sharing this side of the disability experience is groundbreaking and super important for all people to hear. The blatent lieing betrayal of Drs and their staff in mindblowing and kills my trust in any of them, yet I need them. But that line, Anger reversing into depression, I'm going to keep that close and share it with my teenage daughter as we endlessly work tp understand and accomodate her group of conditions. Sending love from Delaware.
As a fellow sci I feel it to at times. Have to be hoisted from powerchair onto a commode and taken to the bathroom to do my daily bowel management using an irrigation system (Peristeen) which fortunately I do myself in privacy. Im then taken through to my room and hoisted back into my powerchair. Itâs so routine now to keep myself well. There are difficult times when I find a sense of humour can help but other days you want to cry and canât be bothered.
Keep going Richard, you are an amazing source of information for sci veterans like myself as well as newbies. Sending good wishes from Northern Scotland.
No one talks about this side of paralysis. I hate that this side of the issue exists and you deserve commendation for being willing to share. I donât know what else to say without accidentally saying something useless, or worse, thoughtless, so Iâll just say thank you.
Honestly sometimes being chronically ill/disabled is really fucking frustrating. I was literally just talking to my friend about how fucking expensive it is to be disabled.
I have a chronic illness that has now made me disabled and even the smallest things that seem to take seconds take out so much of my energy and time.
But thank you so much for making this video. Being honest and truly talking about this really helps me and I'm sure also others. And hopefully it might help you too. It is out of our control being in our bodies but for me talking about it sometimes makes it less overwhelming
Dang I remember watching youâre videos of you living in a condo style apartment and you were kinda walking and getting into places easy, even having a girlfriend but I never knew you went through the same stuff I go through with the frustration. The calls the getting hung up on just trying to handle youâre business not including all the other medical stuff we go through. I pray you get youâre supplies and feel better from youâre stomach. Stay strong and keep pushing bro! God bless!
COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.
I'm a new mobility aid user and I just want to say your channel has really made me feel more comfortable with myself when I need a wheelchair. Thank you. I am so sorry about your frustrations, I have totally been there. You are strong and can get through this.
COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.
Your such a amazing person and when your upset your even more of a total awesome man that you are. You made me truly happy watching your videos your personality truly makes you a genuine person. I know this sounds crazy but when your fustrated your additde is even better
Thanks for showing what we really go through. No one shows this part of being a cripple. There is a reason we have such a high suicide rate.
Great video Richard. Loving the raw honesty. So grateful for my healthcare here, my catheters get automatically sent to me every month and I take that for granted too often.
I'm a newish paraplegic, one year in February, and yeah I still get angry about my injury but most of all and pretty much everyday I am frustrated. This video really hits home and with all that emotion, just waking up knowing the day is gonna be one of those extra hard and disheartening days. I can't really describe it to anyone and have them relate because I know nobody else in a chair. It's tough out here for us disabled people.
Add carers into all of them problems and itâs just chefs kiss
So honest, so correct and so informative... I'm new to the labeled family (54 and diagnosed MSA, just got given my 1st horrible cheap wheelchair, near heart attack when starting to price lightweight unit) and learning every day - thank you for channel.
The most accurate video Iâve ever watched. Every word was the most truthful statement ever said on earth.
me and you both ... I'm independent and can live pretty much on my own like you tho! (despite the inconveniences) we actually have it a lot better than fully paralyzed individuals not having to rely on a caretaker for transfers or wiping our butts, so hey it could be EVEN worse... that's what I think about sometimes when I get mad and depressed.
Me too
You're absolutely right. I think about that A LOT, how things could be much worse.
I cried from beginning to the end of this video but not out of pity but out of seeing someone literally describe the true and real feeling of what itâs like to have a disability. This hit home hard with me,though my disability be different we are cut from the same cloth. Those days you just know what itâs going to be like are so hard for some to understandâhow can you know itâs gunna be a bad day, your just so negativeâ but I know my body and my mind I know whatâs happening, I have lived this day a lot,thank you so much for posting this. Also the medical hostage situation is what I call it, when you have to walk on eggshells in order to save your own freakin life, canât have the medical staff feeling upset or the medical supply company feel unhappy either but your life is at stake and any passionate plea for your own self is taken as a âdifficult patientâ and even seeing that written in your documents makes it harder with other doctors thinking your a complaining trouble maker. Their incompetence is a literal threat to my existence! And the cripple tax is so true it takes so much more time to do the simple things and then someone has the audacity to call me slow or lazy. But I just want you to know when I saw this video I saw a man with I deeply admired you, and appreciate that despite the creeping demons of ending suffering you kept going, you made those phone calls anyway, you documented reality, you expressed yourself to the best of your ability though we could to the inferno burning inside. Though Iâd never wish this amount of endless cyclical stress I am relieved to know that what I feel is a common real perspective and honestly it lessens the sting in a way I canât illustrate. Thank you and please keep going the world needs people like you. I know I do. Thank you so much again, I wish you as good of a day as you can have today!
My heart breaks for you, what a crap service your doctors are supplying. I understand why you're frustrated. Stressed. And what that stress can do to you physically & mentally. I can't relate to your specific injury/disability, but I am disabled with MS, and I am approaching these bladder/bowl matters - so I can relate to your frustrations there. It sucks that you have to go through this, and I hope it gets better, I really do.
I also have MS, and started watching Richard when I was looking for tips for navigating in a wheelchair (I'm an ambulatory user). I often say to people that having MS can be like having a SCI, because if you're like me and the majority of your lesions are on your cord and not in your brain the effects are very similar. And I watched this particular video right after a telehealth session with my therapist during which we worked through my feelings about being a burden to my family as the disease progresses... đ
This video speaks to me on every level. In addition to paralysis, I have narcolepsy and it's a full time job keeping up with appointments and calling drs, pharmacies, and insurance. The frustration and exhaustion is so real and never ending. I hope one day things change and the unnecessary stress is removed from our lives. I feel like there's all this pressure to be hyperfunctional and "inspirational" but I wish there was more space to accept that some circumstances in life just suck. Sending hugs all around
Feel your pain and frustration mate, every day is a challenge for us. Stay strong
Richard: I am 72 and have been a para since I was 16. I have gone through all of this. Waking up to a messy bed is always an awful way to start the day. Getting ready to go somewhere or transferring into the car and peeing in your pants is never fun. Everyone is affected by this. I am currently on hold with my medical provider. They are holding up my shipment because I have an open invoice, that I called about last month as it is wrong and was told it would be removed. Now I have a overdue notice. This is just not easy. Keep on going...
The amount of time I spend on the phone with doctors offices, insurance people, medical suppliers and pharmacies is absolutely obscene. The fact that I am able to get anything else done in a day is mindblowing. Oh and also taking care of myself is a full time job. I wish that disabled people were treated with some freakin dignity in this country.
I felt every bit of this. The frustration is all too real. Iâm still getting used to this. Itâs true, being in a wheelchair can and will cause allot of suicidal thoughts, it friggin tough. Iâm fighting that depression and doing the best I can though. Very thankful for the people I have in my life, and thank you for the content you create, itâs really a big help.
As others have commented, I can't begin to tell you how much I appreciate you making this video. As a diasabled person, I sometimes feel very much alone, and seeing someone go through similiar struggles as I do, helps so much.
Thank you for making such a raw honest video about things that happen almost on a daily basis to those who are disabled.
WowâŠthank you Richard for sharing your struggle. This is my deepest darkest struggle since my spinal cord injury. The frustration leading to anger to depression of managing a neurogenic bladder and bowel is so apparent in your video. It the visceral and real thing that doctors, suppliers and insurance companies should watch when in training to understand that we are just trying to survive.
COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.
Don't feel bad richard. I just finished cleaning up the bathroom as I didn't make it in time either so please don't be embarrassed!
I know things will get squared a-way for you Richard. You have once again put things in perspective for me; I can't get frustrated with minor inconveniences because others go through way worse. So now we know why you shaved your head, to keep from pulling it OUT! Love you man! Spacious place you have!
This is the most relatable video Iâve ever seen. Iâve also been battling my urologist for months. Had a uti turn in to a kidney infection because they kept ignoring me and giving me excuses as to why they couldnât get me in for an appointment. Itâs become a regular thing that I end up in doctorâs offices for HOURS just sitting around waiting to be seen, even when I have an appointment. No one gives a shit and it baffles me how people like that end up in the healthcare positions that they do. This is life, brother, hang in there, youâre not alone.
Richard, please donât end your life, you are so strong and can get through the worst times
this video is so important to me. I feel seen on such a deep and fundamental level, thank you for making this.
I hear you! I've had so many days like that. I'm thankful for my dog. She gives me this look that says "I know you have a lot going on but I need to go out." I'm glad that I can help someone have some dignity â„ïž
I'm with you Bro. Hold on in there. Things will get better. I'm willing it to happen for you.. Take care.. (Phil - UK)
Thanks for this real video highlighting the things you have to deal with everyday that everyone takes for granted.
Im a new wheelchair user, being gradually paralyzed by radiation treatment for colon cancer. I feel your frustration and anger. This video is very helpful to me. Thank you!
This makes me glad to be a Brit. It takes a couple of minutes and ÂŁ0 to order a years supply of everything i need.
I'm an American and had the same experience as you, but even better. No time spent because the doctor ordered it all. Medicare covered all expense.
I have the same experience here in my part of Canada. Supplies no problem. Prescriptions no problem. Physio no problem. Only thing that can be tricky is ordering a new wheelchair. We have to rely on a local medical supplier who only has access to 1 or 2 demos and if you want to try another chair it could take MONTHS to get one it and then it can't be adjusted to fit your needs! That's really the only frustration every five years ...
I'am also on wheelchair so I understand You in some part. But I have better situation because I "only" loose my legs in car crash.
Stay safe and don't give up.
So sorry you are having such a bad day but watching that really raised my spirits. Lifts a big weight off my shoulders knowing someone else can relate without thinking Iâm having a pity party! Hope things get better!
Iâm not paralyzed but I am disabled and I felt this today. It was a whole production just to get my pants off.
I've had good luck using a freshwater enema 3-4 times a week. Prior to that, it was dig-stim several times a week with limited success. Got an inflatable enema nozzle since I have no sensation or muscle control down there. After filling the bag, inserting the nozzle, I just inflate the nozzle, keep it from sliding out with my hand and wait for 1.5 liters of water to go in (about 3-5 minutes). Once the water is done going in, I let the air out of the nozzle and it pops out. About 30-45 minutes later I'm done emptying out and I'm good to go for a couple of days.
Thanks for your videos, Richard. I wish you the best.
Sam
You nailed it with âdealing with a world that WAS NOT designed for them!â
Thankyou for this video. People really don't get how exhausting "cripple time" is. Three hours of my morning just doing the stuff people manage in 30 seconds. And I just want to live and it's sooo exhausting and frustrating.
A colleague of mine was misdiagnosed and sent home with abdominal pain. 24hrs later she was another emergency and her bowels were so bad, she needed a colostomy. She needed to pay for her colostomy supplies herself. Why does she need to pay?
You tell it like it is, Richard.
I think you know Gem from Brighton, UK, I loved her sketch about going to the doctor.
Gem (@wheelsnoheels) is awesome! Love her videos too!
Hi there, Iâm from England and I am incredibly worried about you, especially with the last few things you mentioned in the end of this video, I bloody hope that you havenât done anything drastic, I really care about you dude, and Iâm worried sick about you đą
I can understand your frustration. I have a paraplegic friend. With that said, us "able bodied" folks have the same frustrations. Anyone who has a chronic illness deals with all of the issues you describe, including dressing. I wish I could take my socks on & off as easily as you can.
We all have different levels of challenges.
This video!!!!! I felt every single thing deep down! I experience each and every single thing and I felt your emotions to my core!! Thank you for being so brutally honest and showing a side people rarely understand with SCI
Man ,,
I thought for a minute I was watching a video of myself.
thinking when did I do this đ€,
After 27 years of this kinda stuff that you described to T,
and I am still dealing with it today. Let me tell you. Learn to just laugh if you can ( learn to laugh about it ) cause it doesn't do no good at all ,
No good, good for nothing to get mad, learn to just slow down, breathe,
yeah, I know I just said slow down, unless the place you're at is on fire đ„, the act accordingly, you're not going anywhere anyhow, you're in the predicament, steady as she goes, see Jesus handing on the cross , he understands far more than you realize hanging there.
but when it's all over ,you will rise with him.
You did a most excellent job, tough as nails, Rock on! Overcome with your super human mind, keep Rockin,
The colostomy is great. It really is , If all goes well with the surgery, but they will cut some stomach muscles đȘ but you can recover,
God bless you.
Once again, you did a wonderful fantastic job on this project ,
Sincerely,
Thank you
Bro, you fight through life, you are inspiring
i havenât posted a youtube video in over 2 years because i havenât known how to come back to making videos while more visibly disabled, but your channel has really inspired me:)
Can completely sympathize with you Richard. I've been a T6 for 21 years and it's like waking up in another world that doesn't even resemble the one you left. When you question people about the worst thing that could happen to you besides death, paralysis and blindness are at the top of the list. I could have never sympathized without experiencing it, but wow do I understand now!
Hope all is well or at least as well as it can be. Your videos are inspirational and I know they're helping the many out there in the "same shoes." God bless you!
COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.
I have the same experience here in my part of Canada. Supplies no problem. Prescriptions no problem. Physio no problem. Only thing that can be tricky is ordering a new wheelchair. We have to rely on a local medical supplier who only has access to 1 or 2 demos and if you want to try another chair it could take MONTHS to get one it and then it can't be adjusted to fit your needs! That's really the only frustration every five years ... SO RUDE BEING HUNG UP ON AND LIED TO!!! UNREAL!!
You are so right! I have Spino Cerebellar Ataxia, a progressive neurological disorder. My cerebellum is atrophying.
My speech is slurred, my gait is awkward, my balance is very off. It takes me so long to do anything. And some things I'm not able to do all together.
You're video is very real and not glossed over for CZcams. Having a disability to contend with is an inconvenience, and some days are just like that.
Wow bruh Iâm in a chair too I go through the exact same things trying to get my supplies I appreciate you posting this video it made me feel not alone
The first time I unexpectedly pooped while I had a chick staying the night I went right ahead and got a Colostomyđ
I canât totally relate to this due to not having spinal courd injury, but Iâm a wheelchair user too. I have dissociative paralysis. They will not even give me a wheelchair. Iâm autistic and have tourettes too. Nobody is willing to help, even if itâs their job! And I live in germany. I canât even imagine how much more frustrating this would be in the USâŠ
Now for the positive part:
Thank you so much for your content! Youâve helped me through my first months of paralysis. Iâve learned from you donât how to navigate my broke ass 50⏠wheelchair. I would often not be able to go through my days without the help your content has provided me.
Youâre such an amazing human being and so brave for showing such days as well! Itâs the truth. And the truth is nothing like the imagination we get to see on social media today. Youâre a win to everybody watching your videos!
Thank you so much!
Respect man!! Iâm T12 and been there. †you are beyond awesome for this vlog!
Stay motivated dude.... Have patience...u r doing great....
Sending you lots of love & the hope for better days! Thanks for being so raw and real. You've helped me through some pretty dark times over the course of my injury. It helps to know we aren't alone.
Man the toilet issue has been hell apparently for several this week!!! I see and hear the frustration coming from you!! I have it to, but I have to say and God do I hate to use them, But Jessi was right!! Depends are your friend. Keep up the good fight. I can say the serenity prayer backwards at this point in life. Peace and Love Brother!! Just remember there is always someone just a phone call away
I appreciate your honesty. I completely know the frustration and depression that goes with all of the being paralyzed. You have been an inspiration to me since I became paralyzed on 9/11/2020.
COLOSTOMY PROCEDURE WILL CHANGE YOUR LIFE IT DID FOR ME AND HAVENT HAD AN ACCIDENT SINCE.
I feel your pain Iâm a T-12 incomplete. Iâve been in a chair since 2006. I wouldnât wish our daily struggles on anyone. Thanks for sharing your video as there is no way anyone can understand what we face on a daily basis.
Oh lord. Thank you for sharing that. So sorry anyone would treat you that way. Shame on them.
Oh man, I hear ya! I got diagnosed with ms about 4 years ago, and about 6 months ago gave in and got a wheelchair... nobody understands how fucking hard it is, every single day! Yap, yap, yap!! She says, " I understand... NO, YOU DON'T!! And I think they just hang up when they get tired of dealing with you and their job!!
I was paralyzed in 2020. Thanks for bringing awareness to all of this.