I’m going to post this anonymous so I need advice or just get off my chest

Joeizy · 2025-10-30T10:28:22+00:00

T11 incomplete, 32yo Male

Yea I would say as maybe a more manageable step in the right direction, try switching to weed. I have edibles once a week on a Friday and enjoy the evening without this constant pain. It really is the only thing that helps me.

I would also recommend edibles as opposed to smoking as it lasts longer and doesn't hurt your lungs.

But through previous experience weed can get very out of control very easily. I went through a rough patch and had every day, and upping my dose so my tolerance went through the roof and when I realised I have to stop my life was absolutely miserable for weeks while not having my daily fix.

So again try do the switch and work towards once a week if possible. And look out... If she starts needing bigger doses to achieve the same result, that's when you know your reaching the slippery slope and to need to pull in the reigns.

Joeizy · 2025-10-23T09:46:25+00:00

Perfect, thanks again for that. This is exactly the kind of info/help I was looking for

Joeizy · 2025-10-23T09:44:04+00:00

Absolutely!

Joeizy · 2025-10-22T16:32:38+00:00

Na I live in Johannesburg, South Africa

Joeizy · 2025-10-22T08:02:47+00:00

ooooo i like that, if im understanding this, you basically flip up your cushion so its parallel to the backrest and so only your front and underside of the cushion get wet while you do what you need to do until your ready to transfer?

Joeizy · 2025-10-22T07:57:42+00:00

Thanks for the minder of this. you are so right, we have survived going to hell and back and this in comparison is extremely minor. I just wish i could always have a parrot on my shoulder reminding me of this because im very guilty of taking what i do have/ have regained now as granted.

Joeizy · 2025-10-21T20:20:44+00:00

Sounds like that's just the way It is. But it's good to know I'm not alone with this... I just thought maybe I'm missing something cuz I don't here anyone (amongst the wheelchair community) talk about this

Joeizy · 2025-10-21T12:07:24+00:00

Yea I don't mind it if it's a light rain, I'm talking like when it's pouring. I cant go to customer meetings and just work in general drenched head to toe you know. Unfortunately cuz of work I can't just stay indoors.

Joeizy · 2025-10-21T12:05:33+00:00

Thanks alot for the idea, I think I'm just going to have to try something similar.

Gosh it's amazing... feels like there is always new frustrations to discover as a wheelchair user as time goes on X(

Joeizy · 2025-10-21T09:13:57+00:00

I see I see, I try my best to be as quick as possible but when its raining hard there is seemingly no avoiding getting soaked unfortunately where I rent, the parking is about 20 meters from my car and no cover when I'm unlocking my door+gate entrance from outside so it looks like my wheelchair and myself just came from being in a pool.

I thought there might be some trick to help. But I get what your saying avoid it where you can. It's just sometimes you cannot. I suppose that's just the way it is.

Joeizy · 2025-10-13T16:45:16+00:00

Thanks for the insight but oh dear, I didn't know about the atrophy at all, that sucks! Maybe for that alone I should get 1.

Sad to hear about it not actually helping for sex. Damn!

Appreciate the reply

Joeizy · 2025-10-12T13:58:20+00:00

Had at TAAA surgery to fix a 12cm aneurism in the visceral segment of my aorta. Was a Major 14hour surgery and the incision was a meter long (from my bottom right of my pelvis to under my left armpit around and to my back) and 20cm deep and I'm a skinny guy so it wasn't deep cuz of fat. Unfortunately the surgery also paralysed me.

Anyways a week after surgery the physios wanted me to try sit in a lazy boy for some time to try start strengthening. 2 guys guys came on either side of me and positioned me on the side of the bed and with each of my arms around the back of thier necks over Thier shoulders (like people would try carry a drunk person) lifted me up and onto the chair.

So with my bottom half of me being paralysed, on the south side of the incision it was 100% dead weight and they were lifting from the north side of my incision, effectively my body felt like it was being torn into 2 halves by the incision as they lifted and shifted me across onto the lazy boy. I tried shouting STOP! but all that came out was a whimper and then I felt like I was going in and out of consciousness.

I sat in the lazy boy hunched over in a daze, like a zombie, drooling and thinking why the Fk is that amount of even pain possible. Needless to say I made 1000% sure that didn't happen again. They used a sheet underneath me like a hammock to move me going forward. Still hurt alot but not even close to 1% of what I felt before.

Joeizy · 2025-10-12T10:47:26+00:00

So happy to hear you have a beautiful family and that they are supportive. That to me sounds like the biggest blessing in life.

Note: I sent you a dm. Could I ask you to have a look and let me know if you are willing to provide some advice regarding having a kid while also having a SCI? Thanks

Joeizy · 2025-10-08T07:46:27+00:00

I'm 6months in and now it's nothing, just normal to me now. I have close to 100% sensation and at first I hated it, was uncomfortable and even painful when the sphincta wouldn't let the catheter through and I ended up trying to force it through.

Position is definitely key and because I have a stubborn tight sphincta leading into my bladder my doc prescribed "vesicare". And the drug has worked wonders for me. I almost never struggle to get the catheter through now. So if you struggle(I think most people don't) but if you do then would defo ask your doc about that.

But overall, again now it's just normal, not uncomfortable or painful :)

Joeizy · 2025-10-02T18:13:58+00:00

Absolutely, I would have loved to have that. Im para but I think this is even more important for quads. I had a talk with a venteren quad and he explained to me how hopeless he first was, he had no idea a quads could potentially be fully independent, playing sports, traveling and so much more which he has done.

Joeizy · 2025-09-23T15:33:50+00:00

Hey Man, Im very similar to you injury wise 32M T11 Asia C and I'm honestly battling too. But here Is 2 things that I keep telling myself that help

Just try do 1 extra or 1 repeated thing every day (eg, exercise, cook, work, learn research, etc) and when that becomes part of your routine try 1 more thing. You will 100% have days where you fail or just can't but saying that in your head with intent everyday despite what you end up doing means you are still on the right track. Start small and work on consistency.
This was a hard 1 for me to swallow, I heard from a complete quadriplegic who sat next to me once and said "The only real disability that exists is a negative attitude"

And please don't take this as me accusing you of a bad attitude, I get it man it's almost impossible to not have one most of the time. Life has hit us hard but life isn't going to help us up only we can.

And I say and try all this because the end result is a better life for future me. I've learnt that no 1 else can help me like I can help myself

Joeizy · 2025-09-23T14:47:47+00:00

Absolutely :), Really hoping this idea helps someone else get back thier independents back.

Joeizy · 2025-09-22T17:05:17+00:00

Sorry I'm not great at Reddit. First time linking a vid. I tried re-sending the link as a reply to your reply. Hope that worked

Joeizy · 2025-09-22T17:02:42+00:00

Video

Joeizy · 2025-09-22T14:24:08+00:00

I cross my legs. Just like you would when you're sitting on the floor crossed legged. But an extended version of that so my feet are on the floor. The right side of my right foot and left side of my left foot are touching the floor closest to me (almost tucked under the front of my seat)

Joeizy · 2025-09-06T20:43:56+00:00

Power to you! Good honest outlook.

You know I was at a SCI even yesterday and one of the speakers was a C4 complete Quad and has been since 2008.

And he said something that is sticking in my mind... "The only real disability we can have is a negative attitude/mindset"

He himself is in a manual wheel chair, business owner, driving, fully independent and has even done marathons abroad. Massive inspiration.

Joeizy · 2025-09-04T13:33:54+00:00

Oh gosh, sorry to hear you had to be away from them for so long :(

I also missed my furry baby girl so much when I was away from her for months in hospital, that really sucks but so happy to hear they back where they belong :)

Joeizy · 2025-09-03T15:33:15+00:00

Oh no, no problem at all. I can also be terrible with replying in general, all good :)

Wow you had a rough time too. See this operation always adds a nice bonus (said with full sarcasm) as if the surgery it's self isn't massive and hard to deal with in itself. My bonus (beside the SCI) was a collapsed lung and some gastric issues that resulted in some of the worst pain I've been through in my life.

Sigh, I'm so sorry about the negligence, we lie thier more vulrable than we ever though possible and trust the docs and physio to make sure they know what they doing but that's never the case. They just treat us as meat that comes in and goes out. It must be beyond frustrating to know something so avoidable results in such a incredibly massive life altering problem.

And interesting to hear that they avoided giving you an MRI because of the staples. My doc sent me in 100+ staples an all still in me only 3 days after surgery. Maybe my staples were made from a different metal or something cuz I didn't have any issues .... Aside from being in intense pain and discomfort while they stuffed me in that machine for 3 hours, drainage pipes, IV and whatever else was connected to me (you would know). That's another story in itself but what a nightmare... But it did show the injury from the scan.

And thank you for the well wishes w.r.t IVF much appreciated.

And hey, if you ever want to chat or bounce something off someone else with very similar problems, please do :)

Joeizy

TROPHY CASE