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How incontinence impacts my life

When I was first injured, the biggest shock was losing control of my bladder rather than the use of my legs, and it still has the biggest impact on my daily life. It also has an enormous effect on my sex life. Members of this forum will no doubt be aware of the effects paraplegia, but most people just assume a para’s legs don’t work. I think they’d be shocked to know I was quietly filling my leg bag as I talked to them. 🙂

My history of bladder management

About thirteen years ago my urologist at the time suggested I might benefit from an artificial sphincter implant.  It sounded ideal so I went ahead with the operation. I didn’t realise before hand how major the operation would be (I had a clam cystoplasty as well to enlarge my bladder and make it less spastic) or I wouldn’t have agreed. Anyway, my body rejected the implant and after a further two implants it was removed permanently. This left me with a large bladder, which should have been ideal, but because I’d had a sphincterotomy as part of the procedure I found I’d leak without any warning whatsoever so I had no option other than to wear condom drainage 24/7. This in itself didn’t cause any problems re ITU’s but I sometimes got an infection from self doing ISC. I hated wearing condoms all the time and my skin would occasionally break down so I sometimes fitted myself with an indwelling catheter so that I could feel more ‘normal’ and let a little air get to my bits. This routine worked well for a number of years but I had a problem with a drug I’d inject for sexual function and I ended up having a number of sphincterotomies, the last being in December. These operations have not only left me very free draining but, because my sphincter has been cut so much, I find I tend to leak a little around the balloon of a foley so I only use one occasionally.

Here is a detailed description of the various types of incontinence products I’ve used.

Condom drainage:
This is basically a condom with an open end that connects to the tube of a leg bag or night bag. There are two types, latex and latex free. Latex free are considered better because many people are allergic to latex but personally I prefer the latex variety because I find them thinner and less likely to pop off (this sometimes happens with obvious results). They can be secured in place by means of adhesive, a double sided adhesive tape, or they can be self adhesive. My personal choice is Manfred Sauer extra thin latex condoms secured with a spray adhesive – which is tricky to apply until you’re well practiced. I’ve found that the self adhesive condoms can stick to itself which can prevent urine from flowing and causes the condom to come off. I’m not very keen on the adhesive tape method either because I’ve had these fail a few times, but of these I find Manfred Sauer’s more secure. I also use Manfred Sauer leg bags and thigh bags (when I wear shorts) – and no, I’m not a rep for Manfred Sauer! 🙂

Similar to a condom but it just adheres to the glans of the penis. I tried this product a few times but unfortunately, because I have a partial meatomy, it didn’t work for me otherwise it would be my preferred method of bladder control.

Intermittent Self Catheterisation:
These are flexible, single use catheters that are fed down the urethra until they enter the bladder. After the bladder has emptied the catheter is removed and discarded. It’s risky using these as they can cause a UTI if equipment and surroundings aren’t sterile. They can also cause strictures or even pierce the urethra or bladder if one isn’t careful.

Indwelling catheters (Foley):
These catheters are held in place by an inflatable balloon that presses against the bladder neck, so preventing leakage. They are meant to stay in place for up to thirty days and should ideally be inserted by a qualified health professional. They should not be experimented with because as well as causing UTI’s they can cause serious injury.

Artificial Sphincter:
The artificial urinary sphincter is an implantable device that has three components:
1. an inflatable cuff
2. a fluid reservoir (balloon)
3. a semiautomatic pump that connects the cuff and balloon

Open surgery is the major form of surgery for the implant. The cuff is secured around the bladder neck and is connected to the pump, and the balloon is situated in the pubic region (it felt like the abdomen to me). The pump is placed in the scrotum or in a pouch below the abdomen. Fluid in the cuff keeps the urethra closed by pressure, allowing continence. To urinate, one temporarily deflates the cuff by pressing the pump. The urethra opens and the bladder empties. The cuff closes automatically. I thought this was a brilliant solution to incontinence and was really sorry when mine had to be removed. You can find out more about artificial sphincter on youtube.

Living with incontinence can be inconvenient, embarrassing and depressing and becomes a major part of one’s daily routine. For me, the main draw back is that I can’t plan ahead because my bladder just empties when it wants to, and I’m constantly feeling my leg bag to see if it needs emptying. It can be very awkward in a theatre or some such place and is particularly inconvenient on a plane, where the toilet is rarely accessible. I found the best solution is to carry a portable urinal (a plastic bottle will do, lol) and discreetly empty my bag into it if I’m desperate. On long journeys or flights I have to restrict my liquid input which isn’t good. As well as bladder incontinence, an SCI usually causes bowel incontinence, but this is usually managed successfully.

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32 Responses to How incontinence impacts my life

  1. Bob says:

    BTDT, few years ago had a Urostomy done, only regret was that I hadn’t done it many years earlier.

    better equipment
    better operation
    and no UTI’s


  2. Steve says:

    I would love to swap situations with you…. I want to be a complete paraplegic

  3. Bob says:

    you’ve I’m sure heard the old story about the doc that comes in to tell a new para the news.

    doc “I’ve got some good news and some bad news”
    doc “your never gonna walk again”
    patient, “whats the good news”
    doc “the bad news is that was the good news”


  4. Steve says:

    I can’t wait for the day that a doctor tells me that… I am paralysed and will never walk again! I wish for complete paralysis from my navel down. No sensation or movement the loss of all function including sexual and bowel and bladder control. S

  5. bob says:

    In about 70% of spinal cord injuries there is severe chronic pain, have you considered that? I have at least two friends that suffered accidental overdoses because of the pain meds and died. Went to friends wedding and funeral in the same year, is rarely talked about.

    If you wanted bad enough I’m sure you could arrange it. But am not recommending it. Make sure you have good insurance too it is expensive.

    Costs over $1,000 to get a car set up with hand controls, and will only fit in two door car or van, so probably have to get new car.
    Van lift is over $10,000
    Ramps cost about $250 a vertical inch, and it is rare insurance that pays for that.
    A “decent” manual wheelchair is over $2,500. (mine was $4,200) and the cushion is $400+ each, catheters are several dollars each, use about 200 per month.
    Skin breakdowns involve 6 weeks in hospital, off butt 6 months.
    Shall I go on???


  6. Elisabeth says:

    Thank you, Bob, for painting a much more complex and truer picture for Steve and anybody who think they understand paralysis without experiencing it.
    I thought the joke about the good news and bad news was right on. Not being able to walk is the “least” of the problems of paralysis. Some of us who use a wheelchair occasionally can understand how wheelchair users are treated by others. We can understand accessibility issues and often are vocal about it. But other than people’s attitudes and accessibility, we have no idea, at least most of us, what it means to be a wheelchair user because one is paralysed.
    I remember one occasion that seemed very trivial but it reminded me how little I understood life with paralysis: I went for a presentation and was sitting next to a very attractive young woman in a wheelchair. Her intestines were playing games with her and she would pass gas rather loudly. She felt embarrassed. But she had no control over it. It’s nice to paint a picture for oneself of a cool dude or dudette in a wheelchair. But even though one can be very cool wheelchair user, even though one can adjust to the life with SCI, there is a lot about it that sucks.
    Thanks again, Bob, for taking time to enlighten others.

  7. Bob says:

    oh yeah the passing gas issue, family pretty much ignores it but very hard to be the “cool dude” when your body lets one rip in the middle of some serious situation…..and it always seems to find the most embaressing time to happen..

    yeah there are some things that work out, but needing a half hour just to get out of bed in the morning gets old real fast, especially when you really want to sleep in.

    being cool Dude/Dudette is a hell of a lot of work…..!!!

    and one thing that I find “interesting” is the fact that in almost all these stories people find the “Dividing line” sensation a turn on….. never met anyone who actually admitted to that, in my case doesn’t do a thing for me. in fact is a bit “wierd” feeling hardly a turn on…

    yes we are real people and I think I have had a pretty good life, ups and downs of course, but am married to fantastic woman and have children so life goes on… but sure am not rich, wonder about all these stories with folks having loads of money when the reality is that over 70% of people with a spinal cord injury live below the poverty level…

    I have university degree in a highly sought after industry and still had a hard time finding a job, my classmates all were hired first and have progressed faster. I can do the job but sometimes you have to be VERY agressive to get what others get as a matter of course. you get “used” but not accepted or appreciated as a whole.

    but there is a world out there and I probably have done more as a person with a disability than I would have otherwise but maybe because I’m a hard headed old cuss and do it because others say I can’t…..

    I have no problems with wannabe’s and others (as long as they don’t take my parking place) but reality check is in order too. my feeling is you get one pass at life, if your not hurting anyone else do what makes you happy

    if I could get one thing back via wish or whatever, walking would be way down on the list.


  8. Steve says:

    Good afternoon. I do try to understand paralysis and appreciate my wish is rare and complete paralysis is also rare. It is my dream though and dreams and wishes can come true… One day I will be a complete paraplegic with no sensation movement of function. I know there may be chronic pain and I deal with that already, I have osteo arthritis in both knees caused by years of playing sport and kickboxing. I have cortezone injections every 3 months directly into the joints… Takes 3 weeks to heal I then have 3 to 4 weeks of no pain at all and plenty of exercise, then it starts to wear off and gradually back to the agony! So paraplegia would cure that pain at least. luckily I am well insured although I am worth more dead than alive much to my mrs’ amusement. And Bob the car… Thats the one thing I know i’d hate! I love driving my manual BMW. But i’d still trade for a nice wheelchair and half my body.

  9. Bob says:

    so as I said earlier you get one pass thru this world, you can talk about it or you can do what makes you happy. sounds though like it isn’t just you that you have to consider. do you have family that depends on your support?
    how would this impact them?
    one way to start would be to swap out your car for one that would be usable with the disability you desire, would find out if you “really” want to know and hurts no one. hand controls can be picked up rather inexpensively, have them installed or use portables (but drive safely, all new reflex actions)
    talk is cheap, seems this list folk will help you out if it is what you “really” want.
    what about your house, is it accessible, could you still live there, how extensive would the modifications be.??
    are you working, what about doing your job…??

    if you chose you have to consider these things. short of surgery I can’t think of anyway to get assured results.

    PS hand controls for stick shift cars are avaliable but not for the faint of heart. I’ve used em when I travel to third world countries….hmmm, one hand for accel, one hand for brake, one hand for clutch, one hand for shifter, one hand for steering. you get the idea…stick with automatic….or at least paddle shifter.

    I’ve been told that you can “Force lose” the use of legs in from 4months to 2yrs if you try but still have sensation and I have no first hand evidence if this is true or not. I once looked it up but there is nothing conclusive in medical literature that I could find…

    there is one other way, fairly recent trend among gangs. if you screw up rather than kill you they shoot you low in the spine for first offense.. second offense make you a quad. third offense. well lets just say you don’t wanna go there. apparently this is one of the few ways out of a gang and I do know someone who has recieved this “justice” he wanted out and got a going away present. seems the risk is pretty high via this route, not reccomended. He still has a record, can’t get a job and lives with parents and gets medicaid, drives a beat up old sedan when he can get it running. but to his credit is determined to stay out of the gangs and drugs..

    best wishes

  10. quarkygirluk says:

    Wow.. This was so insightful reading this. Well.. I used to be a carer to a quad so I did all the personal stuff. But even after seeing all the hard stuff he went through , the accidents etc. I don’t think it put me of at all.. Mainly because I’ve had this in my mind since I was about 4! But I think if anyone were to say they were sure about going ahead with the *change* it would take great planning because everyones right.. Once you do it you can’t go back! Thanks for being so upfront about obstacles and mentioning things to think about before even thinking of going ahead with something so drastic. I found it helpful 🙂 I can’t wait to read what else you say because I think its alright hearing opinions from a wheeler who doesn’t know we are pretenders wanabees biid etc. But hearing your opinions with knowing about us its great because what you say is much more open. So thanks!!

  11. Bob says:

    I guess one of the major differences is that when most people become SCI/D there is little or no advanced planning for it.
    Pow, suddenly you have to deal with “all this stuff” at one time and have very little in the way of resources to turn to. In the “olde” days one would be in rehab for 4-6 months and pick up a lot of “Tricks” (learn a lot of bad habits too); nowadays they hand you a wheelchair and throw you back into the world as soon as you are stable. Somewhere there needs to be a happy medium, I’ve been SCI for mumble mumble a lot of years and still am learning new tricks. Everyone is unique and what works for one person does not for others. I lucked out and had a car I could use when I got hurt, but it was pure dumb luck not planning. Had hand controls installed and actually drove myself home from hospital (I’m a little crazy too, but that helps) also helped that my father was a contractor and we had just bought a handyman special and he did a good job in making it usable most people don’t get that kind of help off the starting blocks… even with a “Real” disability it is amazing who accepts who you are now and who doesn’t. Don’t think my mother ever accepted the new me, she even had her sidewalk rebuilt and added a step that wasn’t there in the process… so don’t fret the acceptance is not unique to pretenders/wannabees etc. I have heard something like 90% of marriages don’t survive a major life changing trauma like a spinal cord injury… I was in the lucky 10% but it was really hard the first few years.
    Throw in kids, mortgage, all the costs and different ways of doing things and it puts a real strain on life.
    I once said I know my wife really loves me when I have an accident at 3AM and she helps change the bed while I clean up then crawls back in and cuddles up not a single word spoken, and I know she has to get up at 5:30. I am one lucky SOB


  12. quarkygirluk says:

    Bob: that is so sweet! And your both lucky to have each other! May I ask what level of injury you have? And I think its amazing that despite how hard its been for you, you still accept others who want to have a sci which is great 🙂

  13. Bob says:


  14. Chloe says:

    I had not given thought to the farting issue before reading this thread. Fortunately I have a juvenile sense of humour and find all fart jokes funny. Likewise, I can not remember any time in adulthood when any fart belonging to any person for any reason did not cause me to burst out laughing. Somehow it seems like the ultimate cosmic practical joke, especially if the fart is mine and accidental.

    Laughing causes me accidentally both to pee and to fart. Both of these accidents cause me to laugh. Thus the giggle girl quickly enters a positive feedback loop. The excuse is to be found in my favorite quote from Oscar Wilde: “Life is too important to be taken seriously.”

  15. Steve says:

    Hi Bob,

    Sorry for the late reply….. I have been busy working. And to answer some of your questions….

    I do work, i am actually a Police Officer and my job is very active. So i would not be able to do that anymore……

    And yes i have a fiance, and she has two kids who rely on my support.

    My desire is completely selfish and i try to avoid thinking about it every day, yet it still creeps into my mind……

    I have been experimenting with cruise comtrol on my car with a few hairy moments!

    Surgery….. well no real doctor will do it for me….

    I guess i’m never going to be a paraplegic 🙁

    One day i hope and wish it will happen, but i’ve probably got more chance of winning the lottery!

    I hope you are well.

    Oh and for your amusement…… i ran into the house the other day to answer the phone, and smashed my big toe into the bottom of the door frame…. broke the toe…. Pain OMG you know you’ve hurt yourself when you don’t swear and just whimper….. That won’t happen when i’m paralysed!


  16. Chris says:

    Some very sensible facts and opinions from Bob but unfortunately I think it’s just washing over Steve’s head. The ‘no sensation’ thing is one that stands out. Steve, you said you accept what Bob said about 70% of SCI cases suffering with chronic pain, yet you still insist that you would be pain free – as in the ‘broke the toe’ example above. I’m in constant, agonizing pain from the time I wake until I go to sleep and I sometimes feel I could scream because of it. Believe me, after six months everything you think is cool about SCI right now would pale into insignificance because the dominant factor would be the pain – and it’s MUCH worse than a broken toe. You say you’re in chronic pain right now but that you’re pain free for three or four weeks after an injection. The likelihood is that should you become paralyzed the pain will be worse and it will never go away.

  17. Steve says:

    Hi Chris. Hope you are well. I accept that my wish is idealistic. Some people wish to be a particular height, have a particular hair style or colour, have a certain physique etc and that is their idea of their perfect body. What I have described is my wish my desire and to me that would be my perfect body. To feel cut in half, dead from the waist down. In reality… Pain, well as long as the lower half of my body was completely usless then i’d be happy. No movement and no function. I long for the day when I wake up and have to drag my backside out of bed and into a wheelchair and have to move my legs with my hands. My life will be so much happier when I am paralysed and need a chair

  18. Bob says:

    ok so that is your desire.
    you only go thru this life once
    so what are you going to do about it.

    some thoughts
    90% of marriages do not survive a severe disability
    70% of people with serious disability live below the poverty level
    70-80% are unemployed or underemployed

    your a cop so unless you were hurt in the line of duty you are looking at a new line of work. if you can get past the discrimination and actually get a job.
    probably would lose your house.

    but if this is what you “truely” want ?!?!?


  19. Steve says:

    Hi Bob. What am I going to do??? Thats the million dollar question. I need to have an accident…. A car accident, a fall or get knocked off my bike or an assault where my back is broken. Surgery would probably be too weird, i’d probably have to go to a 3rd world country. An accident can be explained. Work, I could do an admin role (or roll). All the descrimination, well i’ll accept it as a negative side to getting my wish. Positives and negatives…. Negatives descrimination, relationships, skin breakdown and pressure sores, needing a new career and pain/spasms. Positives… I will have the body I want, I won’t be able to walk, I’ll need a chair, I won’t be able to move of feel the lower half of my body including my private parts. I will be impotant and doubly incontinent and I wish to wear diapers at night. I know that looks like a crazy positive list but to me it would heaven to be paralysed, from the waist down. I have got this far on my journey through life, I would love to finish it as a para!

  20. Ben says:

    After reading the series of comments above I felt the need to chime in and add my two cents worth…

    I can understand truly where Steve is coming from…as I have many of the same feelings and desires myself. I can honestly say that if it was not for my job/career field (Fire Rescue) I would probably have begun using a chair FT many years ago. As it is now I spend roughly 50+ percent of my time at home living as a wheeler, and have gotten quite good at it. In addition to this I also go out of town periodically and spend my trip as a FT wheeler…. In my conscious mind I know that my desire to be a FT 100% have to use the chair wheeler is insane, who would want to do this to themselves… Bob has pointed out several great and valid reasons and there are several beyond that…(blood clots, shoulder injury, etc.etc…). On the other hand, there is a certain feeling of peace/comfort when I am using my chair as if I “belong in one”… I have actually seen 2 psychologists about my issues with little change in my feelings. The first was totally blown away, and although quite concerned and full of questions provided me little if any feedback..after 2 sessions I honestly felt like I was spending money to go to sessions to teach him about BIID. I met with the second one a couple of years later and she was slightly more helpful..but not a whole lot. She also showed her primary concern was that I was going to leave her office and go hurt myself to leave her liable for my injuries. Once we got past that hurdle we began discussing some of the more pertinent issues.. I have to give her a great deal of credit, as after we discussed my issues at the first session she came to the net and read up extensively on various aspects of D/W/P culture. One point we discussed was the possibility that perhaps some of the wannabe wheelers/amputees could have been disabled in a “previous life”. Without spawning an intense debate on religion/reincarnation the hypothesis has a certain degree of merit…This could further explain why so many of the wannabes have such a clearly defined desire for a certain dis-ability of level of injury, and why they claim to be so uncomfortable/tormented without it. In closing, while I know that the desire shared by Steve and I is INSANE to 99% of the population out there, I have to say that it is very much real to us and numerous others out there… I have looked for a cure, and nothing was found… In light of this, the best advice I can leave folks with is to do the best to accept yourself however you are, wheeling or not….and if you do choose to take steps to “cross over” please make sure that you consider all of the consequences thoroughly before taking action..

  21. Elisabeth says:

    @Ben: Thank you for your comment. There is one little thing I disagree with you on: You and Steve are coming from very different directions. You have BIID, Steve doesn’t. You use a chair to be yourself, to be more comfortable, to find peace, to diminish the inner pain. Steve has some morbid curiosity with not feeling his legs, with wearing diapers etc. Being a PT wheelchair user wouldn’t be any benefit for him unlike it is for you. You don’t want to be a para, he wants to be a para. You need to be a para, he doesn’t need to be one. Do I make any sense? It’s people like Steve that give BIID a really bad name but though his case might sound like BIID, I am pretty sure it is not.
    That said, you are not alone. There are many of us with BIID who share your feelings and who wheel to keep the remnant of our sanity. It’s good to know that we are not alone. Both the forum on this website and http://www.transabled.org are great places for peer support because let’s face it, unless one has BIID, one doesn’t understand it. Heck, we with BIID don’t understand it but it doesn’t make it less real or less painful.

  22. First, I have to say I was shocked to read that there are those who are ‘wannabees’ – want to be paralyzed, paraplegic – that just shocked me, quite frankly. For those who are in chronic pain – I understand – but those that are healthy, I just have one question – and I’m not being condescending – but why? Why would you wish the inconveniences, the bladder and bowel issues, infections, exorbitant costs? To Bob who posted about the gang way of becoming paralyzed – wow – I’m sorry for your friend and any others who have to go through that to get out of a gang. Just when I think I can’t be shocked by what people will do to one another – I learn something new and I’m sad that I’ve learned it.

  23. I did forget to add in my previous post – for Steve – if you truly want to wear diapers at night – there is nothing stopping you from doing that now. Many of our clients wear diapers because they want to – they call themselves diaper lovers or ABDL and if you look on the net you will find it is popular fetish. For Ben without spawning an intense debate on religion/reincarnation the hypothesis has a certain degree of merit… – that’s an interesting thought. I have to say, for Elizabeth that what you say is very true. It’s amazing how many of our customers are ABDL – and those who need incontinence products and adult diapers out of necessity – can’t understand those who wear them for pleasure – because they’d (the ones who have to wear them for medical reasons) would give anything to not to have to wear adult briefs.

  24. Kim says:

    @Steve, you said:
    “Oh and for your amusement…… i ran into the house the other day to answer the phone, and smashed my big toe into the bottom of the door frame…. broke the toe…. Pain OMG you know you’ve hurt yourself when you don’t swear and just whimper….. That won’t happen when i’m paralysed!”

    LOL, that’s so true about the going straight to whimpering!

    As far as you assuming that it wouldn’t happen if you had a SCI, you couldn’t be more wrong! I’ve broken toes since my SCI and although I don’t feel it, the pain is still there. My body still reacts to the pain. I get Autonomic Dysreflexia, which causes my head to pound (it’s way worse than the very worst migraine I have ever had in my life), I feel like I’m going to throw up, I sweat profusely and when it gets too bad I feel like I’m about to pass out. It’s caused when your body can’t regulate your blood pressure anymore and it keeps rising. It can cause seizures, stroke and even death. I’d much rather feel the pain of the broken bone!

    In fact, just recently I had a spasm that got my leg stuck in the rail of my bed (I’m currently in rehab) and got a pretty substantial bruise on my ankle. This has been causing AD attacks for days.

  25. Steve says:

    Kim. How are you today?? Hope you are ok. Today I am well and reasonably happy. I am pleased with life and being able bodied. I could do with losing a bit of weight and my knees are knackered but I am happy with my body. My toe isn’t quite right, caught it kickboxing lastweek. When I am unwell and obsessing it I irrational and when i’m well I think WTF, why do I want that?? When I am obsesing I would swap with you immediately just to experience rehab paralysis and being in a chair. I tend to ignore AD, spasms and focus on what at the time seems to be the main attraction of absolutly no sensation and no movement from the waist down coupled with double incontinence and a chair. In that mind set nothing else will do essentially I want to be dead from the waist down, still having my body but no use or control of the lower half. As I type this I am just thinking why??? And I will never know. I appologise for causing any upset and it is hard to explain what it is like when i’m obsessing, i’m just glad I am on my meds and sorted. Dry nights diapers…. Thanks, in the past I have done that. It is embaressing but I have gone to mobility shops and bought adult diapers and worn them and at the time I loved it the touch and crinkle of the polythene. They were dark days when I was seriously ill…. I wished and prayed to be a complete paraplegic, my thoughts were constant. I went to sleep at night wearing a diaper wanted to wake up paralysed having wet and soiled myself and I was disapointed when it didn’t happen. These are thoughts i never want to experience again. Disability is no laughing matter be it physical or mental and I was seriously mentally ill. If there is such a thing as karma then one day I will be para and there will be no enjoyment I will hate every second and deserve it for irritating all the paras that have wasted their time reading my ramblings.

  26. Jo says:

    Having wandered into this discussion rather by accident – I’m trying to distract myself from the urge to play a computer game because it will only make my tendonitis worse – I would just like to say how much I admire Bob for the way he has responded to Steve here. And I do see that Steve is battling a mental illness which leads him into these dark thoughts and desires to be severely disabled. To be blunt, if I had suffered a trauma that took away so much of my life I would be incandescent with rage if confronted with someone who WANTED to be like me or worse. I would not be politely pointing out the reality as opposed to the fantasy.
    I enjoy my body – yes it’s now 53 years old and beginning to show signs of wear and tear – but I can still power up a slope, thoroughly enjoying the way my muscles answer the demands I’m placing on them. Climbing on things, carrying weights – every day I can do these things I am thankful. Losing abilities – I cannot knit, crochet, sew, embroider, tatt, paint my house, play my keyboards, mix a cake by hand, any of the hobbies I enjoyed for years because of chronic tennis elbow in both arms – is a huge source of anger and resentment to me, not to mention boredom, with hours to fill and enforced arm rest, like it or not.
    I am ashamed of myself, though, when I consider how people with “real” disabilities get on with their lives without half the whining and self pity in which I indulge. I certainly do not aspire to experience their challenges. I was amazed when I discovered recreational wheelchair users. I guess it takes all sorts…
    I have found the “does and don’ts” sections here extremely helpful. The only tip I knew before was the one about sitting or squatting when chatting to a chair user. This is a good way to learn some basic etiquette without annoying/embarrassing/irritating the heck out of someone with my astounding ignorance and lack of sensitivity…. I’d better read it through a few more times…

  27. Chloe says:

    For the greatest part of my life I did not find it a believable proposition that there exist people who actually like being male. It made no sense and was utterly incomprehensible to me. It was not until I was in my forties, and having talked with many female to male transsexuals, that I finally got it that other people might indeed desire aspects of myself that I considered to be an absolute curse.

    It is a matter of maturity. As young children we learn that other people are like ourselves, and this becomes the basis for empathy and compassion. The next step is to understand that everybody is different from ourselves, and that is how one reaches the deeper levels of empathy. This step is not so easy and clearly takes a lot of time for many, including myself.

    Having a disability is not a valid excuse to be lacking in kindness and compassion towards others with a condition that they did not ask for.

  28. Eric says:

    @Steve Why not just pretend to be a para? get a nice chair, braces and practice no leg movement at all. You’ll gain the same affection as being really paralyzed.

    You will regret it after a short while….it may be fun for a while and get the affection of the care and love a paralyzed person gets, but it quickly wears off and you’ll regret it.

    Don’t go that far, bud…there ways you can enjoy the feeling of being Paralyzed without becoming one. I concentrate on making it as real as possible without actually harming yourself.

  29. Jack says:

    I am suffering from incontinence for past 2 years. My whole life has become like hell. I cannot go anywhere just because my problem. I have to use Adult Diaper and pads all the time, even while sleeping. It is really disgusting. I have undergone through many surgeries, but no result.

  30. bob says:

    jack as a male have you tried external condom catheters. these sound like exactly what you are in search of.

    many styles and brands.


  31. Christopher Stendel says:

    Hello I’m new to the site, and ran across this thread. I read the comments about the ones with BIDD who wish to have a SCI. Their ideals about their “dream situation” are perfect in their minds, but life doesn’t work that way. As far as pain goes joint, bone, or muscle pain has nothing on nerve pain. Two years ago I had an accident with a gun jamming on me with a live round in the chamber. When I pulled the charge handle back to clear the chamber it slipped, and the bolt rode forward and hammered the round that was in the chamber. The bullet hit me in the back of my heel. Stupid me for sitting down with the gun rested against my legs, but i have learned my lesson. Anyway the bullet hit my Achilles tendon broke my heel bone and lodged itself at the bottom of my foot, and ever since then i have had nerve pain in the bottom of my foot causing me to walk on the ball of my foot. So when i go to stores and to public events I do use a wheelchair. So on the point about pain never going away I know what you are talking about.

  32. Sarah says:

    Hi Chris – Just a quick note, from BioDerm. We’re sorry to hear you couldn’t use the liberty device due to your partial meatomy. I’m not sure when you tried the product but we’ve made several improvements in the last few years including a longer slot to accomodate extended urethral openings. We also now include a cath port which allows you to intermittent cath through the device. If you tried us several years ago, you might want to consider giving it a try again – if you’re interested just drop me an email and we’d be happy to help.

    Sarah with Liberty by BioDerm