Dump of pent-up thoughts

[Darcy]

This is my first post on the forum and there are a few things that are playing on my mind. I'm not sure whether it's better to post things as different topics or just lump it all in together, like I've done. Advice would be appreciated.

I'm 16 and was injured in September 2021. I've got a C5 injury but have regained a fair bit of function and have an ASIA D classification. Since coming home from hospital in March I've pretty much just been getting on with things. One thing that I've been very lucky with is bowel/bladder issues. I have good bladder sensation and cath when I feel I need to go. I don't get AD and haven't had too many issues with spasms/leaking. For my bowels, I take Movicol in the morning and Senna at night and use a Microlax to empty my bowels when I feel I need to (usually once a day in the morning, I've got pretty good sensation.) After lots of issues in rehab with constipation, my bowel program seems to be going really well and usually I don't spend more than 20 minutes on the toilet. It doesn't always go smoothly, but in general I spend minimal time on the toilet and hardly ever have accidents.

This is what's worrying me. I'm reading so many bowel and bladder horror stories that I feel like something is destined to go wrong. Is my situation too good to be true? Is it possible to live a life with minimal bowel/bladder issues or will things get tough sooner or later?

Second thing: Can anyone share experiences of being a teenager with SCI? Finishing high school? Starting university? There aren't that many people with spinal cord injuries and even fewer teenagers, so I haven't ever spoken to anyone who can offer any insight or advice.

Things getting on my nerves: You guys will have heard this all before, but there are so many things that people say/do that shit me, even though they're not meaning to.

"Wow, your upper body must be so strong." Yeah, all the bits that aren't paralysed. I feel selfish for getting annoyed at this because I'm very conscious of how much function I've regained. But because I've regained this strength people basically think "wheelchair equals stick legs but big strong arms" when this is very much not the case. I just feel that people expect me to be stronger than I actually am.

"How's your recovery going?" The use of the word recovery irks me because people's mindset is that sooner or later I'm going to chuck the wheelchair away and then I'll be 100% recovered and right as rain. It's not really a 'recovery,' it's regaining function and learning how to navigate a whole new life.

I was waiting outside a bakery while my Dad went in because the bakery was quite small and had a step and I didn't really want to deal with navigating it. While I was waiting outside a guy came out and tried to give me 80 cents. I was confused and said 'no' and then the guy looked confused and said 'oh'. I guess he was a bit embarrassed and he should be. I was dressed in fairly standard teen clothes - hoodie, trackies, Converse - and was not doing anything that in any way suggested I was begging. Except being in a wheelchair, apparently.

This is just a tiny portion of all the things going around in my head but it's good to get a little bit off my chest. Thanks for reading folks and I'd be really grateful to anyone who is able to share experience or advice.

[funklab]

I don’t think there’s any reason to assume your bowel or bladder issues will get worse. My first year was absolutely the worst when it comes to that kind of stuff.

When you figure out what you’re going to do for college/etc, look into your local state vocational rehabilitation department (if you’re in the US). Their whole reason for existing is to help disabled people get jobs and they paid for four years of pretty expensive schooling for me.

I was out of high school when I was injured, but my recommendation would be to look for a college with a flat campus and new buildings if at all possible. My undergrad was pretty new and most things were accessible. In graduate school I went to a 200 year old school that meant I had to take awkward, long routes to my destination to find elevators or ramps. I feel like this directly contributed to me not really making any friends there, because organic things like walking together with someone from one class to the next weren’t possible for me. Also I got stuck in an aging elevator that broke down a couple times which wasn’t much fun.

[Lewis]

Things getting on my nerves: You guys will have heard this all before, but there are so many things that people say/do that shit me, even though they're not meaning to.

"Wow, your upper body must be so strong." Yeah, all the bits that aren't paralysed. I feel selfish for getting annoyed at this because I'm very conscious of how much function I've regained. But because I've regained this strength people basically think "wheelchair equals stick legs but big strong arms" when this is very much not the case. I just feel that people expect me to be stronger than I actually am.

"How's your recovery going?" The use of the word recovery irks me because people's mindset is that sooner or later I'm going to chuck the wheelchair away and then I'll be 100% recovered and right as rain. It's not really a 'recovery,' it's regaining function and learning how to navigate a whole new life.

I was waiting outside a bakery while my Dad went in because the bakery was quite small and had a step and I didn't really want to deal with navigating it. While I was waiting outside a guy came out and tried to give me 80 cents. I was confused and said 'no' and then the guy looked confused and said 'oh'. I guess he was a bit embarrassed and he should be. I was dressed in fairly standard teen clothes - hoodie, trackies, Converse - and was not doing anything that in any way suggested I was begging. Except being in a wheelchair, apparently.

You're normal.

I think I lucked out in my early years because my SCI changed the way I saw all people with disabilities. I was naïve prior to my injury. Even stupid, knowing what I know now. In hindsight, it gave me a superpower.

I too was asked often by family friends, "how's your recovery going?" Or, "you're moving your arms so much more than last time I saw you!" They didn't get it. They couldn't see what I could see. They didn't know what I knew.

My superpower was appreciating the fact that I too was once like them. And while I had an SCI to teach me the hard lesson, I was now in a position to drop some knowledge. I was nice about it. They weren't trying to be mean. Just the opposite. They were trying to be nice!

Teaching them did two things; 1. Family friends stopped asking the same questions over and over, and 2. they shared the knowledge. Knowledge is power.

And I get it. It's a burden. Explaining yourself over and over can also get on the nerves. For me, I'm happy to carry the burden because its one of the burdens that I can do something about.

[Gordy1]

Where are you in Australia? We’re in WA. Our son has just turned 19, and is at uni now, having been through his whole school life using a chair (T6 para). He’s not on Carecure unfortunately, nor on social media in general (although plays a lot of online games), but I’m sure he will have a chat with you if you want. PM if you want more info.

From my perspective as a parent, I’d suggest finding your nearest wheelchair sports organisation. Even if you don’t think you are sporting, you’ll meet a lot of positive people, and they are likely to be able to find people around your age. Our son plays para-Badminton, and has just come back from the Oceanic Championships in Melbourne. There were people there from all over Australia (and NZ, and other countries)...some we’ve met before at previous events, some were new, but they are all a really friendly group. I’m sure that there are similar stories with other sports, so worth trying out a few. Meeting other parents at these things may also help your parents...it certainly did for us.

[Gearhead]

If you are taking oral Baclofin, it causes bowel issues. Work with your doctor to ween off of it. Removing it from my pill collection was a life changing improvement.

[SCI-Nurse]

Do you have research based information about this for baclofen? 1 case does not make science. (KLD)

[Darcy]

I am taking Baclofin, as I've got a lot of tone all through my body. I've noticed that very high doses do make me more constipated but it's not something I can stop taking at the moment. I've started another medication to complement it because the Baclofin on its own hasn't been super effective, so maybe I can stop taking it in the future, but at the moment the dose that I'm on isn't causing bowel issues that I'm aware of.

[jamiewm3]

Darcy, as said by Funklab there's no reason to believe your bladder/bowel issue will get worse. Try not to overthink things as it can cause anxiety and stress. The more likely scenario is that your regime will improve as your routine becomes settled. I was 18 when I became C5, you're basically a kid still so will have a multitude of negative thoughts, it's normal.

As Gordy said get into wheelchair sports and a new world opens up with new friends and travel and mental well-being and that goes for university as well.

You're also fortunate to live in Australia which has a great health service and are very unlikely to experience some of the horror stories that happen in the US.

Think of being in a chair as a new chapter and live the best life you can, you're young which I see as a bonus.

[timbucktwo]

Hey Darcy, I was 16 years old, a junior in school when I was injured. I was in rehab and tutored through that year Nov - June of 72 yes, 1972. I passed and went back to the same school and graduated with my classmates, I continued artwork and design, I played keyboards before and after my accident. we played clubs every weekend in my area, my father built an addition to our home for me, a mat for therapy, I then went to some college locally., those days small colleges were not yet that easy to navigate. I then applied for a federal job and with help of the American ADA act got a job through help our OVR. My point is I had the greatest support group around me, my family, friends from school all accepted me, picked me up for rides, my band mates visited, and I continued to play in a 5-piece rock band like I was just any other dude in the traveling band, just live life as you can, will things change sure, accept change and move on. You have this thing called the internet (lol) Instagram, Facebook, youtube and all these young people your age, in para sports, all building their lives by connecting on social media, and all this knowledge is at your disposal. New therapies, better rehab facilities. devices you can talk to, and they do things, robotics, and more. Get out, let people stare, explain to kids what happened or people in general. and post here when you feel like and do research, we are all different. you definitely are just a normal teen finding your way

[Darcy]

I don’t think there’s any reason to assume your bowel or bladder issues will get worse. My first year was absolutely the worst when it comes to that kind of stuff.

When you figure out what you’re going to do for college/etc, look into your local state vocational rehabilitation department (if you’re in the US). Their whole reason for existing is to help disabled people get jobs and they paid for four years of pretty expensive schooling for me.

I was out of high school when I was injured, but my recommendation would be to look for a college with a flat campus and new buildings if at all possible. My undergrad was pretty new and most things were accessible. In graduate school I went to a 200 year old school that meant I had to take awkward, long routes to my destination to find elevators or ramps. I feel like this directly contributed to me not really making any friends there, because organic things like walking together with someone from one class to the next weren’t possible for me. Also I got stuck in an aging elevator that broke down a couple times which wasn’t much fun.

That's very encouraging to hear, in terms of bladder and bowels. I'm very lucky to be in Australia, where higher education is not so stacked against people trying to access it, but I will definitely look into organisations/programs that can help me out. Also a very good point about campus accessibility. I think lots of universities are making efforts to retrofit old buildings, but even that can be inadequate. I'm sorry your experience was hampered so much by it. Thank you for the advice.

[Darcy]

I too was asked often by family friends, "how's your recovery going?" Or, "you're moving your arms so much more than last time I saw you!" They didn't get it. They couldn't see what I could see. They didn't know what I knew.

My superpower was appreciating the fact that I too was once like them. And while I had an SCI to teach me the hard lesson, I was now in a position to drop some knowledge. I was nice about it. They weren't trying to be mean. Just the opposite. They were trying to be nice!

Teaching them did two things; 1. Family friends stopped asking the same questions over and over, and 2. they shared the knowledge. Knowledge is power.

And I get it. It's a burden. Explaining yourself over and over can also get on the nerves. For me, I'm happy to carry the burden because its one of the burdens that I can do something about.

I always make a big effort to be gracious in my replies because I know that people care and I really am grateful for that. There's just so much that you're not aware of unless you have lived experience. I don't think I'm ready to start explaining things to people because lots of stuff is quite confronting and people's reactions just end up making me feel awkward, but I really admire people who have the courage to educate those around them.

[Darcy]

From my perspective as a parent, I’d suggest finding your nearest wheelchair sports organisation. Even if you don’t think you are sporting, you’ll meet a lot of positive people, and they are likely to be able to find people around your age. Our son plays para-Badminton, and has just come back from the Oceanic Championships in Melbourne. There were people there from all over Australia (and NZ, and other countries)...some we’ve met before at previous events, some were new, but they are all a really friendly group. I’m sure that there are similar stories with other sports, so worth trying out a few. Meeting other parents at these things may also help your parents...it certainly did for us.

Wheelchair sport is such an important thing! I've started playing rugby and it is the highlight of my week. It's the only time when I can actually move fast again, as well as be around other people who get things. The opportunities to travel are also really amazing, as you've highlighted with your son, and it's definitely something I'm going to keep up and hopefully progress in. I'd like to be doing as much sport as possible but my schedule is pretty busy with school and rehab and the clubs all seem to be in far flung places. Hopefully going to start wheelchair racing as well, I just need to work out how to fit it into my week.

[Darcy]

Thank you everyone for your replies, it's really encouraging to read all this. I know that there are inevitably going to be setbacks and challenges but I really want to do as much in my life as I would have if I hadn't injured myself, starting with finishing high school and getting into uni. Your posts have encouraged me that this is all possible and I'm really grateful for that.

[SCI-Nurse]

Darcy, with your permission I'd like to move this thread to the forum for New Injuries, as it may be easier to find and helpful to others who are in their first 1-2 years of SCI/D. (KLD)

[Darcy]

Hi KLD, it would be great if you could do that. Sorry for the delay in responding.

[Sheri]

I’m probably out of place in advising about something that wasn’t asked, but the newer your injury, the more “neuroplasticity” you likely have. I’d move as much and as often as you can muster. And even as time goes by, move move move! I look back and wish I’d been advised of this.

Sorry if I’m out of line, sincerely. Welcome to this very helpful group. I’ve learned a ton from them.

[Lewis]

I always make a big effort to be gracious in my replies because I know that people care and I really am grateful for that. There's just so much that you're not aware of unless you have lived experience. I don't think I'm ready to start explaining things to people because lots of stuff is quite confronting and people's reactions just end up making me feel awkward, but I really admire people who have the courage to educate those around them.

You do you. Whatever you choose to do will be right because it will be what you're comfortable with.

Also, my bowel and bladder have remained surprisingly the same over the past 21 years. I have experimented with different ideas and I have had some challenges, but nothing I couldn't overcome or adapt.

[Gearhead]

If you are taking oral Baclofin, it causes bowel issues. Work with your doctor to ween off of it. Removing it from my pill collection was a life changing improvement.

I suggest you read the info they give when you get a bottle of Baclofin. My case, I was on the max dosage. Passing hard hickory logs the size of my forearm literally ripped my anus.

[Darcy]

I’m probably out of place in advising about something that wasn’t asked, but the newer your injury, the more “neuroplasticity” you likely have. I’d move as much and as often as you can muster.

Sheri, not out of place at all! This is something I was told early on and the more it’s reiterated, the better. I try to get as much movement into my day as possible, even when I’m not seeing that immediately translate in better function. It’s a very slow process, as with all incomplete injuries, but I am still making progress.