Anonymous12 Posted May 1, 2022 Share Posted May 1, 2022 Hi,I have athetoid cerebral palsy and I’m still struggling to accept my new reality. I’ve made some progress in accepting my neurogenic bladder and incontinence but I feel like the more comfortable I get with it, the more infantile I feel.. I guess I’m still grieving the fact that I’m losing strength sooner than I thought I would (I’m 26).I used to have my helpers put on baby powder while standing up but I noticed that it is a lot easier for both of us when I’m laying down. I got a makeshift changing mat until I get one online. I just feel more and more infantile the more I take care of myself. I think I’m angry because I thought I knew the prognosis of my cerebral palsy and apparently I didn’t. I guess this is part of having a disability…I just didn’t expect to be four years old again so fast. I am also embarrassed and sad because I feel so vulnerable when someone is helping me change. Thank you for listening to my rambling, if anyone with cerebral palsy has gone through this and have some coping strategies I would really appreciate it! Thanks! 2 Link to comment
TinyBunny Posted May 1, 2022 Share Posted May 1, 2022 I can tell that you're upset. You must be strong! Popular culture brainwashes us to think that only babies need diapers but the most rational thing to do is to consider both entities separately. When we think rationally we know that it's not right for us to feel shame when we have not willfully done anything wrong. You can throw off the shackles of your self-doubt and enjoy the perks of being a young adult. I admit that sometimes when I'm alone I remember my capabilities and achievements and use arrogance as a tool to banish thoughts that bring me sadness. I've realised that my lifestyle probably won't take me to a grand age so it wouldn't be very useful for me to spend a significant amount of time doing my Eeyore impression and being relentlessly cynical. It is a natural characteristic of being human though, having a disability brings tremendous difficulties and it's easy to think that you've been a victim of unfairness. 1 Link to comment
~Brian~ Posted May 1, 2022 Share Posted May 1, 2022 (edited) @Anonymous12 9 hours ago, Anonymous12 said: I have athetoid cerebral palsy and I’m still struggling to accept my new reality. I’ve made some progress in accepting my neurogenic bladder and incontinence but I feel like the more comfortable I get with it, the more infantile I feel.. I guess I’m still grieving the fact that I’m losing strength sooner than I thought I would (I’m 26). One of the first things you have to understand is that cerebral palsy is something that you did not cause to happen to yourself! CP is a neurologic disorder that is more common than you think. There are a lot of people who have disabilities that they cannot control, and that means there are some things in life that they just have to deal with. In my case, I have cerebral palsy and the reason that I have been so successful is that I roll with it and let it take its course. I realize that as a age, it gets harder to do certain things. It gets harder to move, it gets harder to walk, it gets harder to be comfortable, it hurts sometimes, but you just have to roll with the punches, and be able to take steps to make your life as Comfortable as possible. it is normal to go through the steps like this: at one point I thought “what the heck do I have this thing for? What caused me to be like this? Why do I feel bad?” Part of it is because of my acceptance, part of it is because of my peers that tell me things that upset me, and part of it is the realization of the difference between the two. I know I have CP, and I know I have to deal with whatever it throws at me. What else do I have to realize is that whatever happens, it is not my fault: as you age CP does do certain things to you, and makes it harder for you to do certain things, or you realize that you could do things that you used to be able to do, and now it becomes harder to do. Do not feel guilty because your body is changing or your situation changes: that is what happens in life. You start out young, you don’t have the ability to do certain things, your parents help you, you learn those skills, and you do them as best you can for as long as you can. As you age, the ability to do these things may be harder, and you do them, and someday you may not be able to do what you normally do on a regular basis without help. In 2020, I realize that it is more important to have the help available to me when I need it, rather than to think in my head, “Oh I can handle this.” The thing is yes, I can “handle“ this, but the question is: do I want to? There are certain things that you do every day: I mean activities of daily living: you get up, you take a shower, you get dressed, you go to work, you make your dinner, your supper, your breakfast, take care of your finances, etc. These things are things that you cannot avoid, because you need to be able to do them every day in order to function. These things will never change, but the people who help you to do them may change over time, and you may not be able to do them As well as you did 20 years or 30 years ago if you were in my age and almost 50 years old. There are certain things in life that you just have to accept that you may not be able to do: what I do is accept the things that I used to be able to do, but I find more difficult to do by myself, and let someone come in and help me, while I take care of the things that I can buy myself as much as I can. I figure the longer I can do this, the more I can stay on my own living independently, but if the time comes where this is not responsible as it used to be, at least I will have an opportunity to stay here as long as I can. The cost of skilled nursing care, or assisted living is astronomical, And as I age I learn this every day. I have lived with cerebral palsy for 50 years: there are some times that you feel weak, you don’t have the strength to be able to do the simplest things, or do you lay in a hospital bed because you have to deal with surgical procedures or illnesses. There are times myself where I was younger, and I ended up having accidents, peeing the bed, messing the bed, you name it it happened to me. Even when I was 30 years old, and I had my appendix rupture, I was as weak as a baby a few times in my life, and I just reverted to the fetal position, because that was what Happened. When I was that weak, I did not have the ability to do what I needed to do, and I told them “you’re gonna have to help me here because I don’t have any strength!“ They did that, because they could see that I did not have the skill nor the strength to do it. in reality, there is nothing “infantile“ about the fact that you have the condition that you do. You simply have a medical condition that requires that you decide how you wish to handle it, and diapers out of the way that is probably the best out of any of them to be able to deal with this. Otherwise, you would be dealing with a plethora of medicines, and some of them have adverse side effects, some of them do not work the best, or you could have medical side effects because of them. Easiest way to deal with your bladder condition is to use diapers, if that is something that makes you feel comfortable. For me it does, Because I can tell you right now sir that I used to have the same issues that you did: in that, I would worry about someone “finding out about what was going on“ or “blabbing to somebody else“, or laughing at me, or putting me down, or making me feel bad because of the decision I made. Because of a lot of help here on DD, I have decided that this is not an issue, and I’m not going to hide what is obvious. I am a incontinent individual and I am also a diaper loving individual: both of these are satisfied by wearing diapers and using themFor their intended purpose and not only that, they provide me a sense of security, safety, sanity, and help me to deal with issues that I have always had since I was eight years old. And now that I have a problem with my mobility, diapers are more important because I do not want to hurt myself, or have my legs gave out, or my knees, or something take that simply because I need to get to the bathroom. There are many times in life where you feel the need to go, and the next thing you know you’re running like a marathon runner trying to get to the bathroom in under 30 seconds or less: I can tell you that the last two or three years, the result of that has been a mess in my pants, or wet pants, or something to that effect. “Grieve as much as you need“: the thing is that after a while, you must except in some fashion your actual condition, and be Prepared to move on, to be able to deal with what you are experiencing. This is not to say that you should not feel sad because of what you used to be able to do, because sometimes that is a major factor, because you feel bad because you can’t do something that you used to do. As a young child, when you finally achieve confidence of your bowels or your bladder, this is the most important step, crucial to your development, because now you don’t need your mother or your father or significant others to help you in the bathroom, or if you have an accident. Once you achieve this milestone, a lot of things can open up for you because you’re no longer restricted because of your conditions. When you are an adult, and you have cerebral palsy or any other disabling condition, there are things that you still deal with whether you’re two years old, or whether you’re 22 years old, or whether you’re 50 years old. The conditions don’t go away, they just get worse, and as time progresses your body changes, so you have to be prepared for those types of things, because you might not be expecting them, but you should not be worrying about every single possible thing that can go wrong with your body over the next 20 to 30 years: what you should do is accept what you have now, and try to work with it. there are many of us here who have disabilities, and we have to deal with what we’re dealt: just because you have helpers who are there to help you, do not feel badly because you have to have them here: they are trained to help you, they know of your disability, they know of your limitations, they also know of your strengths and weaknesses. Having someone who helps you either with your ADLs, such as bathing or showering, toileting, changing, house work, etc. is good, because you don’t have to worry about that particular thing: these people know how to handle most situation, and in my estimation, when these people come in to help you, you have to tell them and show them how you want things done, so that they can help you to the best of your ability, and the best of theirs. But this mean that if you have a certain way that you change, or let you take a shower, or you do certain things in a certain order, you train these people to do it that way, because it makes it easier for you, and it also makes you feel more comfortable because let’s face it, someone changing you is an intimate thing, and I can understand that it can be embarrassing, But you must realize that if you were incontinent or you’re having trouble like that, the people who are helping you are here to help you because you need the help: it is not uncommon for someone to feel “Less of an individual“ because of their status, but in time, that will most likely not be an issue, because if you’re 26, and you have incontinence, you’ll probably have incontinence when you’re 56 as well, and you have to be prepared for that eventuality, even if you don’t know what’s gonna happen, or how fast. Cerebral palsy sometimes happens really fast and that there are some times where you have to work real hard to get somewhere, you get there, and you are able to do things for several years, and then all of a sudden a big change happens. When this happens, do not feel bad for yourself, and do not worry about it, because as time progresses, you will have more of these events occur. Just roll with it, even though I know it is hard to understand, because you will have these things occur: sometimes they’ll be things that you know about, and you know that are gonna happen, and sometimes they’ll be things that you don’t know what happen. It is normal for you to feel “vulnerable” as someone changes you: because this is an Internet action, that your parents used to do for you when you were a little baby. Now that you’re older, this is something that you think that you should be able to do, and most people that do not have a disability and do themselves. I have CP myself, and I can still do many things on my own, but having incontinence, I’m not afraid of it, because I know eventually I may have that issue, and what I have done is to be prepared for the eventuality that I will need what I need. Now that I have the diapers I need, no one can tell me that I don’t need them, and they can’t challenge the reasoning behind it, because I’ve already done the legwork and know that these work for me the best way that they can. what do you have to do my friend is to understand that you have a disability as I do: you have to realize that there are going to be things that you can do for yourself, and I do encourage you to continue to do those things on your own for as long as you can. However, when it becomes hard or difficult for you to do these on your own without a lot of strain on you, then you may want to consider getting some assistance taking care of these activities. The people who help you, whether they be CNA‘s/LNA’s/RN’s,LPN’s/PT’s/OT’s,MD’s/PA’s,etc they are professionals, and they would not disclose any information that would be detrimental to you, or embarrassing to you, because they’re not supposed to. You and your medical team, and your care team should be able to deal with these issues without causing too much difficulty. They are supposed to keep these things confidential, and only disclose things to other providers and support members when it is necessary. In short, they’re not supposed to go blabbing to aunt Mabel up the street that you wear diapers, or that you use them for whatever you use them for, and they’re not supposed to disclose other things that would be detrimental to you. That is what being a professional means: They take care of you, and your needs, regardless of what they are, according to a care plan, and I do not disclose information to anyone other than people within your care team. To do anything other than that would be a breach of ethics, and they could be in serious trouble for that. It has happened to me, so I understand that you may be nervous about this, but if you have the right team they understand your needs and also your trepidation, and they work to make sure that you’re happy, well taken care of, and able to function to the highest possible level. I would not worry about how much strength you’re losing are you’re gaining. If you are doing the best you can do, and you know the limits of your disability, and you know what you can do and what you can’t do, then don’t worry about things that you can’t do. Keep in contact with your doctor, and any other support staff such as your PTOT and speech, or any other service providers in your loop. If anything changes, let your doctor know, and keep him in the loop because he will be able to help you should something happen: the most important thing is to try to keep as healthy as you can, and keep doing it on a daily basis. just because you wear diapers, does not mean that your life is over with, and it also does not mean that you are losing anything. You may lose the ability to control your bladder or your bowels or any of your other muscles in your control, because of your disability, but the best thing you can do is just let it happen. If something happens, and you know that you’ve done your best, and that’s all you need to worry about. It is one thing if do you have the ability and you lose it, and you deal with that particular loss, and it’s a totally different thing if you never had the ability, therefore you never lose it. I can understand where you’re coming from, because the most important thing that you want to do is be able to be as mobile as you can, doing as much as you can for yourself, for as long as you possibly can do it. I get that – but don’t worry about the things you can’t do: focus on the things that you can, and try to do the best you can doing those things, and as long as you can do that you will be a better person for it. Don’t worry about whether you have to have someone change you or help you, Because they do it every day, they are professionals and should be professional, and their job is to help you be as good a person as you Canby: some people cannot control their bladder or their bowls, and I can tell you about two or three of them off the Top of my head: but each one of these individuals has found a way to function to the highest possible level, and they don’t let incontinence get them down, or the fact that someone has to help them get them down. I had to come to that realization in 2020 and 2021, because I needed help to make sure that I had all of the necessary things I needed to manage my Incontinence. I told her that we were going to “open the floodgates“ and get anything and everything that I think I will need to be able to take care of my incontinence. I was able to get all of these things, and I’m able to get them re-ordered as a necessary, and because of these things, I’m able to live my life, able to enjoy my life, and I won’t have to worry about my incontinence because if it happens, and it’s gonna happen, I can deal with it now. My support team in my case management team has been phenomenal, very understanding, and has helped me to understand that there’s nothing wrong with what I am going through, and nothing wrong with being incontinent, and this team is also made it perfectly clear that they are here to help me all the way – don’t fret about what you can’t control, because what you cannot control someone will help you with, what you can’t do someone will help you do, what you have to do is worry about what you can handle for yourself, and do that to the best of your ability and skill. 7 hours ago, TinyBunny said: I can tell that you're upset. You must be strong! Popular culture brainwashes us to think that only babies need diapers but the most rational thing to do is to consider both entities separately. When we think rationally we know that it's not right for us to feel shame when we have not willfully done anything wrong. You can throw off the shackles of your self-doubt and enjoy the perks of being a young adult. I admit that sometimes when I'm alone I remember my capabilities and achievements and use arrogance as a tool to banish thoughts that bring me sadness. I've realised that my lifestyle probably won't take me to a grand age so it wouldn't be very useful for me to spend a significant amount of time doing my Eeyore impression and being relentlessly cynical. It is a natural characteristic of being human though, having a disability brings tremendous difficulties and it's easy to think that you've been a victim of unfairness. @TinyBunnyis correct: I can see also that you are upset, and that is normal if you are dealing with the types of things that you’re dealing with. You kind of feel that you are losing control or I’ve already lost control of an intimate function, and I get that. Being disabled, there are certain things that you may not be able to do, or that you were able to do and not able to do anymore. Having cerebral palsy means that there are certain functions that I cannot do, because I could never do them in the first place, because some of the brain cells in my head or dead colon for that I cannot Control or worry about, but for as much as I can I try to maintain control so that I can function to the highest possible standard of living. I have two degrees as well as a diploma, went to the school system and all that stuff, and I pushed hard to get to the top. Didn’t exactly make it to the top, but I made it high enough so that I am proud of everything that I have done and everything that I do. I won’t give up if I know there’s something that I want, and I won’t let anyone or anything stand in my way. be strong sir: that is the most important thing: your body may fail you, and you may have no control, and that is annoying, and it is also embarrassing at some point. I remember being in the hospital in that same condition: I needed to be able to control certain things and I couldn’t control them, because of my condition, and because of side effects based on surgical procedure. When you were in a hospital, it is normal for someone to make a mess, or to have to use The bathroom, and then make a mess, or not make it. It is expected because you were sick and you were there for a reason. When that happens, people are understanding and will come to your aid and help you. I’ve done this for years, so I know this to be true. culture trains us as well that as she said “diapers are for babies“, but we both know, and we all know that this is as FALSE As can be: diapers are used by adults who are disabled, and that is that. We all know that parents want us to be able to do most of the things our peers can do, and the most important thing that little kids learn is to control their potty habits. Our parents train us about 2, 3 or four years old, and once they’re able to get rid of the diapers all the time, they breathe a sigh of relief. In our case, that may not be in often is not the case. My brother Richard wore diapers from the time he was born in 69 all the way until he died in 1979 – he had no control over his bladder or bowels, he was nonverbal and non-mobile, and my mom and my dad took care of all of his needs, until he moved to a place where they took care of all of his needs 24 hours a day seven days a week. As I said, diapers are not for babies anymore, and unfortunately, there was a bad stigma placed upon anyone who wears diapers past the age of four – or however often are old they are and still wearing diapers – this is wrong, so wrong that it is ridiculous! I feel It important to point out that I believe most people who wear for whatever reason, may wear because they feel like they were “rushed through“ potty training, and made to feel bad when they want diapers, or need them, and we’re just blown off. If you feel that you are attached to them, that could be part of it, as well as any other emotional psychological medical or other reason. There’s nothing wrong with anyone wearing diapers as an adult, because they have to, because they want to, or Because of the feelings that they elicit. shame and guilt or two things that can be used against you, and that is bad. There should be no shame if you have to wear diapers, or if you need to wear them because of a medical condition. There should also be no shame or guilt if you decide that you are comfortable in wearing diapers, or because you are dealing with it for comfort reasons. Each one of these reasons can be considered a medical reason if you go further down the pipe, and I’m sure there are plenty of us Who have severe trauma because of something in their lives, and they go back to a time when they didn’t have any trauma or any worries at all. This time is when you’re a baby, when you had your parents taking care of you, changing your diapers every time, or just taking care of you in general. If you have a bad thing happen in your life, it is normal to be scared, or worried, and sometimes that’s what people do because it helps them deal with it. That is why people decide to become adult babies, or adult kids, or whatever they decide to become, or identify as. Again there is no shame in wanting to wear, and using, and wearing, in the feelings, you name it: it just happens: and it is natural, as natural as warning to grab a glass of water on a hot day! In closing do not worry about what people think, say, do, I believe. Do you have a disability sir and you know what it is, and what your limitations are. You Also know that you’re incontinent, and you also understand that you need help. Do not feel shame or guilt because you need to help, because it is time for you to realize that you can live your life to the fullest, even if you have to wear diapers, even if someone has to change you every few hours, or to help you, or if you have to use a wheelchair or whatever colon wife does not stop because your disability is there, and life doesn’t stop because you have a setback: life continues, and you just have to be able to roll with the punches, and I know it’s hard, because I went through the acceptance process myself, and it took me about two years: but I can tell you that once you have accepted it fully, you will find that you will not have as much worry anymore, because the people that need to know about your incontinence know about it, and they know how you wish to deal with it. If you have your medical diagnosis, and you have everything that you need, then you should be all set, and you should be safe and the knowledge that you will be able to take care of anything, even if you may not be able to do it entirely yourself. so: don’t worry about that so much: you have the people that you need, and you have the support of your friends here on DD: Remember, you’re not a baby, but you still need your diapers, and there’s nothing wrong with that: what is wrong is that there are people who think that you have to be a baby in order to wear diapers, and or they think that you have to be totally disabled to wear diapers, and they don’t realize that there are other people who have other situations were diapers help them: they don’t have to understand that, and they might not, but they should be able to grasp there is a need for someone like us to wear diapers – I just wish that I had come to that realization about five years ago – but at least now I have an understanding of what and why I feel the way I do! good luck sir! Brian Edited May 1, 2022 by ~Brian~ Word Corrected 3 Link to comment
Anonymous12 Posted May 1, 2022 Author Share Posted May 1, 2022 Thank you @~Brian~ I guess I never really thought about it in that way. I do have a “little” side but I always wanted to do that voluntarily rather than it being forced on me by my body. I have a cuestión, did you used to have full continence? If so, when did that begin to change? I’m just trying to understand my body better and what is going on with it. I had a friend in elementary school that wore diapers his whole life until 14 and even though I felt bad for him, I never wanted to end up like that. I guess sometimes it’s hard to look at yourself in the mirror and right now it’s easier to pretend it’s not my cerebral palsy when I know deep down it is. I think this might be the result of being raised in a generation where I was told I could do anything I set my mind to. The good news is that I’m in pull-ups because I’m only dealing with urinary incontinence so it’s not as bad as taped diapers. I guess I don’t have enough humility yet to acknowledge my problem. It also doesn’t help that my ABDL side is glamourizing the idea of being completely incontinent when it’s a lot to emotionally deal with. 1 Link to comment
~Brian~ Posted May 1, 2022 Share Posted May 1, 2022 7 hours ago, Anonymous12 said: Thank you @~Brian~ I guess I never really thought about it in that way. I do have a “little” side but I always wanted to do that voluntarily rather than it being forced on me by my body. I have a cuestión, did you used to have full continence? If so, when did that begin to change? I’m just trying to understand my body better and what is going on with it. I had a friend in elementary school that wore diapers his whole life until 14 and even though I felt bad for him, I never wanted to end up like that. I guess sometimes it’s hard to look at yourself in the mirror and right now it’s easier to pretend it’s not my cerebral palsy when I know deep down it is. I think this might be the result of being raised in a generation where I was told I could do anything I set my mind to. The good news is that I’m in pull-ups because I’m only dealing with urinary incontinence so it’s not as bad as taped diapers. I guess I don’t have enough humility yet to acknowledge my problem. It also doesn’t help that my ABDL side is glamourizing the idea of being completely incontinent when it’s a lot to emotionally deal with. @Anonymous12 you’re welcome: always glad to try to help others that need help! Sometimes CP can be something that you think you have control of, and it sometimes will play tricks on you at some point. You may want to control your “little side“, and that is understandable, but sometimes the CP can cause issues for you, that you have to be able to deal with. The best thing to do is to let your CP run its course, because as long as you’re able to keep yourself healthy and mobile, you should be OK. This does not necessarily mean however, that you do not have feelings or issues that You May have to deal with. Sounds to me like you have that under control for the most part. As long as you have some sort of control over what happens, that is good. However, if you are having problems with urinary incontinence, you may not have a choice, and as you age it can get worse, so you end up possibly with incontinence both directions. Regardless of what happens, you should be prepared for that eventuality, even though it might not be something that happens right away. I made the choice I did, because I wanted to be safe, healthy, and I have my sanity and also have the knowledge that I have done the best thing that I can do to make sure that my security and my well-being is maintained. I do not want to fall, or have my legs gave out, or hurt my legs or my knees or anything else. If this means I wear diapers for the rest of my life than that is the way it is – it’s something that you just have to live with, and I have accepted that I have to use diapers because this is the easiest way for me to handle something like this. I am prepared to use my diapers both directions, and have done so on many occasions, so it’s not uncommon for me to have to do it. As Far as your question that you asked me: I had full continence Until August 2019. Part of that, I had four continents, and I had pretty much full control over what was going on. I had an occasional accident or whatever, but that was few and far between. However, all through my life, had situations where continence is something that I lose for a time, and through my childhood from about eight on, until about 14, I had problems as well because I was away from home at a pediatric rehab center. During this time, I was basically diapered from the time I walked in there until the time I was released for the final time 14 weeks later. in August 2019, I signed on here for the first time. I had asked my doctor three or four months before that for assistance, because I was having problems with incontinence diverticulitis accidents and the like. I had already discussed the possibility with the doctor about a year before, telling him that I may need diapers at some point, because I was already using the under patch because of hot weather in the summer, which caused my seat cushion to absorb odor which was not something I wanted. So I started using these underpads, and asked the doctor when he prescribed these, what the situation would be if I wanted to have him prescribe diapers. He told me that that would not be a problem, and after dealing with times when I would have accidents all over the place, I finally got up the courage in August of that year to ask him. He told me that it took “a lot of guts to walk in here and ask for what you did“ and he said that he was “proud of me“. Guess the problem started the spring of 2019, and became worse in August. So there I was trying to figure out how to deal with this, and I was like “do I really need to do this?“ The answer to this question was made perfectly clear during the next two or three weeks. At least five times during a month, I would end up having wet accidents in my bed, and then to top it all off later on I would have met accidents in my bed, and then I would have to change the sheets, change my clothes, you name it: it hit me like a ton of bricks. I knew that I needed good diapers, but they were giving me the cheap ones, they didn’t even have plastic in them, and they were telling us that “the state thinks that all you need is something that can hold you For two hours” I told him “that’s a bunch of BS: I know what a “diaper” and you guys haven’t even Come close: I had to give them adult sites to be able to go to such as rears.ca and northshorecare.com, so they understood what a plastic backed diaper was because I didn’t understand I would have to use crap like this, and I pushed real hard for the good stuff: had to wait almost 2 months, and then, Finally I was able to get my NORTHSHORE’s, my mega max as that is, and then not only was able to get those, but I was able to prove medical need, so I would never ever ever ever have to prove that again, and I would always have diapers like this, and I would never have to go backwards. During this time when I was dealing with this, I finally had the doctor write my diagnoses “ continuous leakage of urine/fecal incontinence with fecal urgency“. I had him write that in my medical records, so that I don’t have to worry regardless of where I am, so if I am in a healthcare facility or a hospital, and I asked for a diaper, that won’t be something that I would be denied. I did what I did and went to diapers full-time in 2020 because it was a lot easier than having to deal with breaking my neck trying to get to the bathroom. Now that I have those diagnoses written in my medical records, no one will be able to question me about that, and no one will give me a hard time about it. i’ve had friends of mine that had to wear diapers because of their disabilities too: I even had a couple of them at summer camp who needed diapers, and they were so scared of wearing a diaper that they were bawling their heads off: they were worried that someone at camp was going to find out about them having to wear diapers, and what would be the ramifications of such a fact. I told them “no one is going to give you any garbage about wearing diapers: if they do they’ll deal with me and they’ll deal with camp staff - It is obvious that you need them, so no one is going to pick on you are they’ll be answering to me and everybody else!” it is Quite normal for disabled individuals To wear diapers if they have a disability. This can happen if they were 24 seven, and that is just normal for them. Some people don’t have the control of their muscles to be able to control their bladder or bowels or some thing else, and That be a symptom of your CP, And that is why it is important to be able to accept it as what it is. It might take you a long time to get to the point where you’re wearing 24 seven, and it might take a long time before you’ve totally lose continents both directions, or you may not be able to regain continents both directions. Whatever the situation is, you should never feel bad about wearing diapers, using diapers, or feel that you have been portrayed because of your body. Your diaper is your underwear, and you will use your underwear as you see fit. This means Then if you have to use your diapers, you use them! Does not matter who is there, what happens, where it happens, or why it happens: you use your diapers as your toilet: you have to accept that you may have to do that, then once you do that, it will become a lot easier: there are a lot of people here who are disabled such as @KawaharuAnd she can tell you stories about this as well: there are other people as well that are disabled, or unable to control muscles because they don’t work the way they should, or their “plumbing is broken” – this is why it is important to understand that your disability can cause incontinence, or Hasten or increase the severity of incontinence. What you need to understand is that if this happens, you will have to make changes to how you deal with the situation, and while it may take you a while to come to an understanding, and an acceptance, you will have to eventually decide how you deal with whatever you deal with. Always be prepared for the next step in the process: you may not need to wear full diapers now, but if it becomes necessary and becomes something that you just say “ to hell with it, I’m just going to use diapers“ – when this happens, you will have to make the change and go full diapers – this will be something that you have to make a decision on, because of your comfort, or your ability, or your security, your sanity, or your safety. Whatever reason you used to make the final determination to go 24 seven, That is yours to make: no one is going to pick on you, no one is going to make fun of you, and no one should be causing you problems because you have to make that decision – the best decision that I made is to go 24 seven, because it’s easier to handle a diaper change than it is to worry about making a mess, and having to do laundry every three or four days. My system includes doing laundry at least once a month, and when I do that I separate my laundry into “incontinence laundry“ and then the rest of it goes into my main laundry, and I take care of it that way. Your little side will probably show itself from time to time. Once you accept that you have a little side, you will be able to find a way to deal with it in an appropriate manner. Do not try to force your little side to go away, because I can tell you from experience, if you force the issue and you quell they need to wear diapers, or the feelings that you have because of diapers, they will come back and they will come back so hard that the only way to deal with them is to indulge and allow your body to deal with those feelings. Diapers help me with my incontinence, but they also help me with those feelings. As long as I have a diaper on, I don’t have these weird feelings, because a diaper is on 24 seven: I may have feelings that it feels good, but at least I can now release everything I want in my diapers, and I don’t make a mess everywhere else. It’ll be up to you to deal with your little side, but please do not just shut it off, because that is not going to happen: you will have those urges and you will have those feelings, and you have to find a way to be able to deal with that type of reaction in an appropriate manner. Please feel free to ask anyone Else hear how they would deal with that, and I’m sure you will find that everyone has a particular story to tell. Being disabled is something that makes us special, Rory, so don’t make yourself feel bad because you have the feelings, or your body fails you: you have the diapers that you need, it’s up to you to be able to determine how you want to use them and when you want to use them. Do not feel bad, do not feel ashamed, because there’s nothing to be ashamed of: you have cerebral palsy just like I do, and there are several individuals who have disabilities that are here, and they can tell you stories about that: Sometimes the best thing that you can do is to decide to go back to diapers - in my case it was the best decision I made! Good Luck! Brian Link to comment
Anonymous12 Posted May 2, 2022 Author Share Posted May 2, 2022 @~Brian~ Thank ya for normalizing how many people with disabilities wear diapers. I took the first step out of denial when I ordered pull-ups with a wetness indicator. I used the ones from the grocery store for a little bit and it fueled my denial because I always attributed the wetness to sweat rather than a small accident. However, once I ordered the new ones I have been getting, I notice every 2-3 hrs, I’ll go to the bathroom and the yellow stripe has turned dark blue. It was at this point that my brain fought even harder and thought “Well I have not done tests yet so I don’t know for sure my bladder is spasming”. Even though my brain is protecting me, it’s also extremely confusing. I hope I get to the point to where I fully acknowledge that there was almost nothing I could have done to prevent this from happening. I also have to agree with you that I might become fecally incontinent as well. I think the part I’m dreading is knowingly having to push because I have no choice. Sometimes I feel this now with my bladder where I’ll be outside or the urge will come suddenly and I have this vague sensation of consciously peeing a little before I make it to the toilet. I feel bad for my helpers who might change me because it might be a chore. I’m trying hard to look at the evidence and I feel like a typical Millennial where I’m like “I can’t believe this is happening to me” I wish I had more information about the exact nature of the brain with cerebral palsy and why incontinence can start in your mid-twenties. I feel like I’m caught between “knowing” and “not knowing” which is a weird place to be in. 1 Link to comment
~Brian~ Posted May 2, 2022 Share Posted May 2, 2022 18 minutes ago, Anonymous12 said: @~Brian~ Thank ya for normalizing how many people with disabilities wear diapers. I took the first step out of denial when I ordered pull-ups with a wetness indicator. I used the ones from the grocery store for a little bit and it fueled my denial because I always attributed the wetness to sweat rather than a small accident. However, once I ordered the new ones I have been getting, I notice every 2-3 hrs, I’ll go to the bathroom and the yellow stripe has turned dark blue. It was at this point that my brain fought even harder and thought “Well I have not done tests yet so I don’t know for sure my bladder is spasming”. Even though my brain is protecting me, it’s also extremely confusing. I hope I get to the point to where I fully acknowledge that there was almost nothing I could have done to prevent this from happening. I also have to agree with you that I might become fecally incontinent as well. I think the part I’m dreading is knowingly having to push because I have no choice. Sometimes I feel this now with my bladder where I’ll be outside or the urge will come suddenly and I have this vague sensation of consciously peeing a little before I make it to the toilet. I feel bad for my helpers who might change me because it might be a chore. I’m trying hard to look at the evidence and I feel like a typical Millennial where I’m like “I can’t believe this is happening to me” I wish I had more information about the exact nature of the brain with cerebral palsy and why incontinence can start in your mid-twenties. I feel like I’m caught between “knowing” and “not knowing” which is a weird place to be in. @Anonymous12 I believe in my heart, that it is safe to say, that you are incontinent. Whether or not it’s a little bit of pee, or a lot of pee, or it’s something more along the lines of fecal incontinence, you got it pal – you don’t have to feel bad anymore, you don’t have to worry – trying to psychoanalyze why you are the way you are is not going to help you in the least. Believe me, I tried to do that for years, and I still have the same feelings and the same urges, and the same reactions and things that set me off. Having cerebral palsy is something that you do not have any control over, and sometimes even with cerebral palsy you may have control of 90% of your muscles, or you might have zero control over your muscle or muscles. It’ll all depend on what muscles that you’re using. you don’t have to feel bad: if you accept that you have cerebral palsy then the thing that you must do is understand that it may get worse over time, and there is nothing, absolutely nothing – that you can do about it, because it’s there! What you can do is take stock in how severe you think it is, and then try to work around it, or work with it. To deny yourself the fact that you have a disability, especially CP or another neurological condition, is like saying the sky isn’t blue, or the sky doesn’t have clouds: you will have what you have, from the time you were born, until the time you leave this earth and go somewhere else. I know that sometimes it is hard to deal with cerebral palsy or any other disability. Most of the problem is Related to your “moral system” and by that I mean, that your parents taught you that diapers were bad, and that you didn’t want to be caught dead wearing them, are thinking about them, or whatever. In reality, diapers are better because you don’t have to worry. If you’re able to get to the toilet, that’s great, and you can use the toilet whenever you can: and if not, your diapers can take care Of you, because all you have to do is prepare change yourself if Necessary. If you have your helpers around, I’m sure they all understand, and I am sure they also will agree that the best thing that you can do for yourself is to do as much for yourself as you can. This is a normal thing, and I am glad that you are able to determine whether you think it is a good thing or not to be able to use diapers when necessary. Whether or not you use pull-ups, or taped diapers, will be determined on what you think is appropriate, as well as what your helpers may tell you because they help you take care of this on a daily basis: your helpers are there to help you, and if you have the type of set up where they can help you by changing you if you need it, and helping you clean it up, and keeping yourself clean, you have a good set up: they understand why you need diapers or pull-ups, and they understand that you’re going to use them from time to time, and they probably expect to change them. The best thing that you can do is to accept that this may happen, and they are there to help you: they are not going to pick on you, they are not going to make fun of you, they are not going to laugh at you or any of that stuff, because they understand this is important, and they will help you when you need it. Some people need the type of support you have, and people that are set up this way I understand your needs. If you need them to help you in the bathroom, they do it – if they need to change your diaper, they help you do it. If you make a mess, they help you clean it up – it’s part of their job, and they wouldn’t be doing it for you or helping you if there was no need for it. don’t feel guilty or bad or ashamed because you have to wear either pull-ups or diapers. If you have a disability, and you have a problem with controlling your bladder or bowels, because of that disability, then you have a good reason to wear or use pull-ups or diapers. There’s nothing more black-and-white than that: the problem with some people is, That they don’t understand why people want to wear diapers, or why they need to wear diapers, and they’ll try really hard to make sure that you don’t have to, and I can understand that some people don’t want to wear diapers under any circumstances, and they feel really bad when it’s necessary to do so. I’m here to tell you that it is totally normal to go through what you’re going through, because you have to take it all in and then make a determination in your mind what is in your best interest. It is up to you and you only, because you were the one that has to deal with getting up every night, you’re the one that gets up every few hours and uses the bathroom, and you’re the one who sometimes doesn’t make it to the bathroom, so you know exactly what it is that you’re dealing with: other people may not understand it the way we do, because they don’t live in our shoes: other people do, because they work with people with disabilities, and if someone needs to wear diapers for whatever reason, the first thing that they do is they have compassion and they understand they also empathize with you because you have to do what you have to do to make yourself feel better. If wearing diapers makes that happen for you, and helps you to realize you have a reason for wearing them, Then by all means do it: you were the one who will benefit from wearing diapers or pull-ups, and no one else: that is why people have to understand that there is a reason for everything that happens. I have Sarabel palsy, I’ve had it for almost 50 years, and regardless of how many times I say to myself “why do I have this? It sucks!“ It’s still gonna suck, and I’m still gonna have cerebral palsy, and I’m still gonna have to deal with the strengths and weaknesses of the condition, and I can tell you that there’s sometimes where I am so weak that I am just about as bad as a six month old baby, because I don’t have control over key muscle groups – in order for that to happen, I would have to be extremely weak, or I would have been so sick I wouldn’t have any control. You May end up being fecal Incontinent at some point, and if that happens, it will happen. There’s nothing you can do about it, there’s nothing you could’ve done about it, and you probably couldn’t have seen it coming. It doesn’t matter what age you become incontinent, I believe it has to do with your availability of strength to be able to control key muscle groups, and if you don’t have that strength, you could be working on it for weeks, years, months – but you still have that issue. Other people, such as my friend Ashley, say that her “plumbing is broken downstairs“ and regardless of what she does, she will not have any control, and will be wearing diapers for a long time. Really my friend: wearing diapers is not the end of the world: there are plenty of us here on DD who wear diapers on a daily basis, some of us don’t wear on a daily basis, some of us wear for different reasons, but we’re all here because of one thing: diapers: and we should not feel bad or sad or upset or any of that, because of the fact that diapers have to be used or because we make the decisions we do. This is not to say that you don’t go through withdrawal, or being depressed, or whatever it is that you deal with on a daily basis. You’ll still go through this, And you’ll still deal with all of the worries in the trepidations, and the quote should I have could I have what I have“. The deal is, in the end, you will have to make the decision that makes sense to you. In my estimation, diapers will help you, but only after you accept that you will need them colon eventually you may not have the ability to hold it back anymore, And if that is true, you will be using your diapers 24 seven: someone will be changing you every few hours, and you will have to accept that that is the reality that you face: the reality is is that you had nothing to do with your Cerebral palsy, just like I didn’t have anything to do with mine: I decided to go to diapers because it was easier for my safety and my sanity and my emotional and mental health: there are so many things that I worry about on a daily basis, and there’s certain things that I shouldn’t worry about: incontinence is one of the things that should not be the worst thing that I should worry about, because that is the least of my worries: if all I have to do for the rest of my life is wear a diaper every day, and change it when is necessary, then that is what I will do: I get sick of having to worry about every single possible conceivable thing that could go wrong in every single situation, and that wears on your brain and your thoughts, and can cause you know and have annoyance, because your brain never shuts down, or because you are thinking too hard: remember a diaper is made so that you can release: a baby does not have to think about anything, and will just release because it’s time to release: a diaper is made to release everything in, and because you have one on control is something that a baby does not have, and if you don’t have is the best control as you once had, that is not your fault, because disabilities and severity can change as you age. I don’t know of any specific thing that says that your disability is specific to your age: however I do know that if you have a problem, it doesn’t matter when it starts, because it could start when you’re 23, or earlier depending on the severity of your disability, and in my case, I started having problems at 46 - this is after all but the last three years of my life where I had complete continents and control of everything: just because you have to wear diapers, or because of your incontinence, that does not mean that there is anything bad going on: it simply means that you are prepared to change yourself multiple times a day, and sometimes multiple times under multiple hours: however a diaper also allows you to live your life to its extent that it is possible, because you don’t have to worry about releasing: it’s gonna happen, so all you have to do is just say “the heck with this I’m just gonna roll it and deal with it as it comes“. This is what needs to happen: you have to have the mindset that it’s gonna happen regardless of what happens: you’re gonna have to use the bathroom: you’re gonna have to use that diaper eventually, and sometimes you’re not gonna make it: so you have to be prepared: having a diaper on 24 seven will guarantee that sometime during the day you will be releasing what you’re holding into it. There’s nothing that you can do to stop it, and there’s nothing you can do to change that. Same thing with your cerebral palsy. Your CP will ebb and flow: they’ll be days when you feel real good, and that you feel that you could climb the Empire State building and jump off and have nothing to happen, and then they’ll be other times where you feel really really really weak, or you hurt real bad, and you wish that you could just turn off the pain receptors: they’ll be days when you have a good days, they’ll be days when you have bad days, and they’ll be days when you don’t even want to get up out of the chair, because it just hurts too bad. Having cerebral palsy, a diaper will be your best friend, because you will be able to use it anytime anywhere, And will be able to release anything and everything that you’re holding, cause that’s what the diapers for. as Far as looking at the evidence goes, You don’t have to look too far for all the evidence: you know you have cerebral palsy, you know that diapers help you, you know that pull-ups help you, what do you need to do is be able to say “I accept the fact that I’m going to have to use these things, even though I might not like it some days, but I accept it.” Just takes time Rory, and you’re talking to a man that took almost 3 years to get to that plateau: you know what the evidence is, and you don’t have to worry, because regardless of what happens, you have the tools in your toolbox to be able to deal with the situation. You also have the helpers that you need to be able to help you with the situation: all you need to do is allow the tools to be there for you to be able to use, and use them as you see fit. If you need to use them 24 seven, then by all means use them 24 seven. If you decide to go to diapers, you will do that after you determine when it is appropriate for you to do this. Most likely, it will be after you have several messy accidents or several wet actions that you want to be able to deal with. If and when the time comes, do not feel bad, because you’ve done everything that you can figure out to do, and as I said, CP is not something that you can control, or that you have much control over: both will deal with our disabilities, the way we see fit, and I strongly urge you to take into consideration that nothing you have done to try to help yourself has been in vain: you do what you need to do, you make choices that make sense to you. In my case diapers are worn 24 seven, and I can tell you right now that it is the best thing that I’ve ever done in my life, I have never felt so confident about myself and other things that I’ve done, and this is because I made the decision to go to 24 seven in diapers back in 2020: the pandemic hit everyone hard, and in some cases, diapers were like a godsend: I am very lucky that I have a very understanding care team, and very understanding case management team, a very understanding medical doctor, and everybody is supportive of my decision: do not worry about Whether you have information on why “your brain is the way it is” because if you try to analyze this, you’ll drive yourself crazy. All you have to do is simply accept that you have CP, and your CP is different than my CP as different as somebody else is CP – but it is there: trying to analyze Why CP IS the way it is is like trying to figure out why 1+1 = 2 – there’s nothing to figure out – because each of our heads are different, we’re wired differently and there are many other things that are part of what is going on and it is not specific to CP alone, but having a disability does account for about 90% of the equation. as I said: just take it a day at a time: except that you have CP, and accept that because of your CP, diapers will help you and so will pull ups. How and when you use them and why use them is up to you, but don’t be afraid or scared or any of that to use them, because there are gonna be people in the world who are going to not understand: it is up to you to do what you think is right, and I think so far based on what I have read in your previous post that you have done what you can do based on your current situation, and I think that you’ve done a good job here: just understand that CP is not something that will hurt you, but that you may not have control over some of its aspects, and bowel and bladder control may be one of those aspects! Good luck and Godspeed! Brian Link to comment
Kawaharu Posted May 2, 2022 Share Posted May 2, 2022 1 hour ago, ~Brian~ said: don’t feel guilty or bad or ashamed because you have to wear either pull-ups or diapers. If you have a disability, and you have a problem with controlling your bladder or bowels, because of that disability, then you have a good reason to wear or use pull-ups or diapers. There’s nothing more black-and-white than that: the problem with some people is, That they don’t understand why people want to wear diapers, or why they need to wear diapers, and they’ll try really hard to make sure that you don’t have to, and I can understand that some people don’t want to wear diapers under any circumstances, and they feel really bad when it’s necessary to do so. I’m here to tell you that it is totally normal to go through what you’re going through, because you have to take it all in and then make a determination in your mind what is in your best interest. It is up to you and you only, because you were the one that has to deal with getting up every night, you’re the one that gets up every few hours and uses the bathroom, and you’re the one who sometimes doesn’t make it to the bathroom, so you know exactly what it is that you’re dealing with: other people may not understand it the way we do, because they don’t live in our shoes: other people do, because they work with people with disabilities, and if someone needs to wear diapers for whatever reason, the first thing that they do is they have compassion and they understand they also empathize with you because you have to do what you have to do to make yourself feel better. If wearing diapers makes that happen for you, and helps you to realize you have a reason for wearing them, Then by all means do it: you were the one who will benefit from wearing diapers or pull-ups, and no one else: that is why people have to understand that there is a reason for everything that happens. I have Sarabel palsy, I’ve had it for almost 50 years, and regardless of how many times I say to myself “why do I have this? It sucks!“ It’s still gonna suck, and I’m still gonna have cerebral palsy, and I’m still gonna have to deal with the strengths and weaknesses of the condition, and I can tell you that there’s sometimes where I am so weak that I am just about as bad as a six month old baby, because I don’t have control over key muscle groups – in order for that to happen, I would have to be extremely weak, or I would have been so sick I wouldn’t have any control. So true. Diapers are normal and not many people in this world don't understand why we wear diapers. There's nothing wrong with wearing diapers and some of us like @~Brian~ and I have a medical need for diapers due to our medical conditions and our incontinence. Diapers are special kind of underwear that we wear that helps us get through the day without having to constantly run to the bathroom. I know some people will try to make you feel bad because your wearing a diaper or a pull up, but think of it like this, at least your not the one who has to worry about using the bathroom or trying to find a potty and deal with your disability. Myself, I am incontinent and disabled and I have to wear diapers 24/7. I'm diapered permanently and I don't even potty or use adult underwear. I wear them because of my medical conditions and because of my disability. Diapers helps me get though the day without stressing over life and the bathroom. They make my disabled life a whole lot easier to deal with and using the potty is the least of my concern because I am kept in diapers. Since being kept in diapers permanently, I'm also an adult baby and being an adult baby, helps me deal with being disabled and incontinent. Being AB, let's me see the world and deal with the world in my own way and knowing that I'm kept in diapers and I'm never gona be potty trained like everyone else due to my disability. 1 hour ago, ~Brian~ said: Really my friend: wearing diapers is not the end of the world: there are plenty of us here on DD who wear diapers on a daily basis, some of us don’t wear on a daily basis, some of us wear for different reasons, but we’re all here because of one thing: diapers: and we should not feel bad or sad or upset or any of that, because of the fact that diapers have to be used or because we make the decisions we do. Even being kept in diapers is not the end of the world here. In fact just think of them as enhancing your life and making it much easier for you to deal with the world around you. Many of us here wear diapers for many reasons and some of us wear them for medical reasons and being in diapers should not make you feel bad or upset at all. To me, diapers makes my life much easier to deal with and less stressful on me. Even let's me deal with being incontinent and not worrying about using the potty. 3 Link to comment
Anonymous12 Posted May 3, 2022 Author Share Posted May 3, 2022 Thank you @~Brian~and @Kawaharu for sharing your experiences. I think when I’m struggling with something, I tend to overthink and/or rationalize it away. I took several tests and my kidneys look healthy and I don’t have an infection. Therefore, when I take away all the cloudiness, I think my cerebral palsy is the primary reason why I am experiencing this. A little background about me. I have a Masters degree in social work and I graduated with a 3.76 GPA. I went to the honors college in undergrad and I work very hard. When I was born, the doctors told me that I would not be able to talk or walk. However, through hours and hours of physical, occupational, and speech therapy, I was able to defy them and walk independently and communicate without a machine or using sign language. I still use my wheelchair for long distances but I can walk independently at home. Therefore, when it comes to my urinary incontinence, it feels like I should be doing something to “fix” this because that is what I am used to. I’m not used to dealing with a problem that may get worse over time and there’s almost nothing I can do about it. I know I’m going to be in pull-ups for awhile and probably go back to diapers eventually and I am in this weird space where I feel helpless, both physically and mentally. I hope that one day I have more clarity where I can acknowledge that it’s not my fault. I just really don’t like exposing myself everyday to people when they put powder on me. I think there’s such a power differential that I don’t know how to handle it. Thank you once again for sharing and helping me on this journey. 2 Link to comment
Anonymous12 Posted May 4, 2022 Author Share Posted May 4, 2022 @~Brian~ Are bowel spasms also part of cerebral palsy? I noticed I had a very small BM in my pull-up today and I was just wondering if that is “normal” for us. 2 Link to comment
~Brian~ Posted May 4, 2022 Share Posted May 4, 2022 51 minutes ago, Anonymous12 said: @~Brian~ Are bowel spasms also part of cerebral palsy? I noticed I had a very small BM in my pull-up today and I was just wondering if that is “normal” for us. @Anonymous12 Yes: Spasms are a part of CP, and can happen anytime, anywhere, and since your bladder and your bowels and sphincter have muscles, they can spasm and cause problems at times, and sometimes I have done a BM like that in my diaper because the sphincter expands and contracts, and when it does, you may drop something in there, or release full on, at any time - It is QUITE normal for that to happen, as your muscles do that sometimes Brian 1 Link to comment
BabyChris121675 Posted May 4, 2022 Share Posted May 4, 2022 I have been reluctant to write about my own experiences with CP because I do not like always talking about it because I was a baseball player once at a point of my life- good enough had I played in my senior year- I could have played professionally- but my grades were crap- and having had to deal with it- issues from CP and before someone accuses me of not having it- I was diagnosed with CP when I was very young. I have also been going through old letters, documentations from doctors I had growing up that my parents gave me years ago so I can get special services that can help me. So it has enlightened me at times reading those letters from the clinic I went to growing up in the 1980s. I also know how much worse CP can be for some people because I had a friend of mine who had it too- but sadly my friend died in 2005 due to suicide in a very sad and tragic way because he was depressed and just could not handle a lot of disappointments in life I guess. My friend was confined to a wheelchair, required help and all- wherein I was able to walk, ride a bike, etc and play sports... plus my aunt was a special ed teacher so I grew up around others with disabilities and special needs such as MD, Down Syndrome, developmental delays, etc... In the past five years I have had a lot of loss of mobility due to the CP and to the point where I have had incontinence- a situation I have dealt with since 1995- I have been in and out of diapers since 1995- it would come and go and lately it can be problematic but I am concerned about the costs of diapers and fixed income. Four years ago I fell and it messed up my back, legs to the point where I sometimes have good days moving, bad days moving and when I go places I usually use a cane so I do not fall. I have had a few near falls- like last year- I nearly fell in my baseball dugout- I am- or was a bench coach slash scorebook keeper for an adult rec team and well- my legs were giving me fits with spasms- but the guys had my back and helped me after I had a spasm and fell. I was OK, but embarrassed by the situation. During after game beers, the guys told me if I need anyone to let them know. I have been blessed that I have a great support network, family, friends- a great and awesome girlfriend who loves me no matter what and yet sometimes I find it hard to talk about my CP online because I do not like the fact that I have CP and the issues, the spasms, the occasional fall, having to be careful with what I do. CP is not my only disability- I have a hearing loss also due from the complications of birth that led to me having CP as well- and I was diagnosed with Asperger's in 2004 after being suspected of having autism by my aunt and a teacher or three when I was growing up. The incontinence I have learned to live with it and enjoy having to wear diapers- I embraced having also baby feelings too that had come up with me over the years- I never outgrew stuffed animals- I still sleep with a stuffed killer whale, a quilt another aunt made me when I was young in her honor as she died in 2020 due to Covid- and I also use baby bottles, pacifiers too to help me cope with my issues. I have had those bladder tests too and they are NOT FUN and I told my primary care doctor I refuse to go through it again because I know they will suggest I use a catheter and I HATE those- they are uncomfortable, painful and not fun so I would rather use diapers instead of a catheter. I would rather use diapers- as it is easier on me mentally, emotionally than catheters ever would be. However, I am a bit different in ways- I am not into kids shows, movies- unless they are ones I love from when I was growing up or ones I like such as some Disney live action movies from the 1960s-90s- etc- and also I prefer more adult fare- I think nothing of watching Law & Order or Law & Order Special Victims Unit all day long, NCIS LA, Dallas, Hill Street Blues, Hunter, The Dukes of Hazzard, CHiPs, etc- I can go on and on- I also read books that are over a thousand pages long as well. I also will watch baseball all day and night long. I wanted to write, say to the OP and others- you are all not alone with having CP, the issues that go with it in life and I have accepted having CP and have made my peace with it in my life as it is one of those things that one deals with the cards they have been dealt with in life. So- you all are not alone and I hope my words have helped a bit- because sometimes I do not always know what to say in some situations like this about my own issues in life. BabyChris 1 Link to comment
Kawaharu Posted May 4, 2022 Share Posted May 4, 2022 14 hours ago, BabyChris121675 said: The incontinence I have learned to live with it and enjoy having to wear diapers- I embraced having also baby feelings too that had come up with me over the years- I never outgrew stuffed animals- I still sleep with a stuffed killer whale, a quilt another aunt made me when I was young in her honor as she died in 2020 due to Covid- and I also use baby bottles, pacifiers too to help me cope with my issues. I have had those bladder tests too and they are NOT FUN and I told my primary care doctor I refuse to go through it again because I know they will suggest I use a catheter and I HATE those- they are uncomfortable, painful and not fun so I would rather use diapers instead of a catheter. I would rather use diapers- as it is easier on me mentally, emotionally than catheters ever would be. That's like me as well. I've learned to live with it and enjoy wearing diapers. Being an adult baby helps me cope with being kept in diapers and knowing I am not gona be able to potty train anytime soon. I've learned that I am never gona be a normal adult and I'm settling into adult babyhood and adult baby. Even being an adult baby helps me cope with my incontinence and disability. It lets me be an adult in my own way, which is being an adult baby and learning to cope with my incontinence and disability. I know my doctors always wanted to push Incontinence medications on me but I am much happier in diapers and they are easier on me, mentally, physically and emotionally. Which is why now, they push to keep me in diapers and they know diapers helps me alot more than Incontinence medications. 1 Link to comment
Anonymous12 Posted May 5, 2022 Author Share Posted May 5, 2022 Hi all, Thank you for the responses, they have really helped. I hope I get to a place to where I feel more humble and less judgmental. I am closer to fully acknowledging my incontinence but I think I’m afraid of being vulnerable with people. My private areas just feel less private and that is a hard thing to come to terms with. What I mean is that in any given week, at least three different people are putting powder on me and there are less boundaries. I know I said this before but I just can’t believe I became the person that I pitied before. I used to think like “Thank God I’m not in diapers like my friend ***” and then lo and behold ten years later, I’m in the exact same situation. I just want to get to the point to where I fully acknowledge that I can’t control my bladder and that requires extra care. As I’m writing this, I am realizing that life is short and 1) It’s something I can’t control, and 2) That’s just…reality. I also hope I can get to a place where I stop coming up with these psychoanalytic reasons as @~Brian~ said. Occum’s razor says that my bladder problems are due to my cerebral palsy. It’s just such a huge adjustment. What helped you guys? I apologize if you already answered this question. Link to comment
zzyzx Posted May 5, 2022 Share Posted May 5, 2022 12 hours ago, Anonymous12 said: What helped you guys? I apologize if you already answered this question. Doing what you are doing here. Find someone you can talk to and discuss things with. Another item is keeping a positive attitude -- as best as you can. I don't have CP. However I have incontinence issues. When the onset of secondary nocturnal enuresis hit, I was able to talk with my mother while trying to get back to normal And after mom pasted, I've been able to talk with one of my siblings. So find a place you are comfortable-talking... and it looks like that is here. Best wishes. Link to comment
Kawaharu Posted May 5, 2022 Share Posted May 5, 2022 13 hours ago, Anonymous12 said: What helped you guys? I apologize if you already answered this question. I have family and friends that knows I am incontinent and I am diaper dependent. On top of my doctors knowing that I am incontinent as well. My family and friends know that I am incontinent and adult baby and they know that being an adult baby helps me deal with being incontinent and disabled. 1 Link to comment
Anonymous12 Posted May 7, 2022 Author Share Posted May 7, 2022 Thank you guys! I think my problem is that I am having trouble listening to my intuition. I did make some progress today and transformed my closet into a changing room of sorts. My body is telling me that because of my cerebral palsy, I developed neurogenic bladder. I think the humiliation component is the hardest to overcome. I know I mentioned this before but I was not prepared for this at all. I’m glad that @~Brian~ mentioned I might become fecally incontinent at some point because I know in advance. This kind of sprang up on me and I’m struggling to let go of the belief that I can overcome anything if I just tried hard enough. I’m trying to trust my intuition but I’m guessing it’s too scary to do so. The simplest explanation is that my cerebral palsy is causing my urinary problems and that I just have to find a way to cope I wish I could get to a point where I know in my heart and soul that my CP is the main culprit and integrate it rather than obsess about it. I apologize if I am repeating myself, I’m just trying to figure this out 1 Link to comment
~Brian~ Posted May 7, 2022 Share Posted May 7, 2022 12 hours ago, Anonymous12 said: Thank you guys! I think my problem is that I am having trouble listening to my intuition. I did make some progress today and transformed my closet into a changing room of sorts. My body is telling me that because of my cerebral palsy, I developed neurogenic bladder. I think the humiliation component is the hardest to overcome. I know I mentioned this before but I was not prepared for this at all. I’m glad that @~Brian~ mentioned I might become fecally incontinent at some point because I know in advance. This kind of sprang up on me and I’m struggling to let go of the belief that I can overcome anything if I just tried hard enough. I’m trying to trust my intuition but I’m guessing it’s too scary to do so. The simplest explanation is that my cerebral palsy is causing my urinary problems and that I just have to find a way to cope I wish I could get to a point where I know in my heart and soul that my CP is the main culprit and integrate it rather than obsess about it. I apologize if I am repeating myself, I’m just trying to figure this out @Anonymous12 I don’t think you’re repeating yourself too many times and there’s no problem here. It sounds to me like just as you said that you’re having problems coming to terms with the fact that your CP is causing the issue. Well, your CP is causing your issue, and so that means that eventually you will have to come to terms with that. Sometimes with CP, there are things you cannot control regardless of how hard do you want to or whether you think you can. You should trust your intuition because the intuition usually is right. Sometimes in Life, there are things that you can control and things that you cannot control. I’ve always stated and I’ve always believed that most times, you can “roll with it“ and deal with it as it comes. Sometimes because of the your condition, things happen faster than others, and other times you’re able to deal with most situation because you know how to deal with them. With incontinence, I have decided to just let it happen, because there are things that I can control because I do have some control left, while other times there are times I don’t have the control, or I just don’t want to have to worry about having to run all the time to the bathroom, so I just let it happen. It isn’t as bad as people think, because it’s just easier. I can change my diaper in less than five minutes, because I know how to do it, and it’s a lot easier to dispose of it in my bin than to worry about how I’m going to do it. Thanks to a lot of good people, I have finally come to the terms I need to come to to be able to enjoy my life to a fuller extent than I did back in 2019. I was a screwed up guy cause I wasn’t sure why things were happening the way they were, but I accepted that I may have to wear diapers because of my condition, and decided that because of problems like this, it is better to have the diapers and use them then to worry about having actions all the time. Once I came to that realization, life became a lot easier, because I just let it happen as it comes. I would not worry about “overcoming incontinence“ because sometimes things happen, and the easiest way to deal with it is to just let it happen. My main concern was that I needed to make sure I had the right equipment to handle the situation, and I was having the right diaper to end up being able to use: Once I had that, there was no problem. I have to make sure I have the right stuff to be able to handle this, which means that I had to ask for a little help. I have everything I need now, so there is no issue as far as being able to deal with it. I don’t think that you were going to be able to “overcoming incontinence” because there are Reasons for your incontinence, CP is the reason: what I would do is try to “Integrate” as you said incontinence into your CP regimen: do that, and I don’t think you’ll have too many problems. You just have to be able to deal with it in the best way possible. Sometimes you’ll have a good days, and sometimes you have bad days. Some days you’re hurt like hell, what other times you don’t hurt at all, or very little. It just depends on the type of day. The problem is I see it is that you have to get to that point where you know your CP is the cause of your issue: once you’re able to do that, you will be a lot better off, CP is a condition, and because that is a condition, there are several conditions that can be sub conditions of the main condition. Some of these include incontinence, because you’re talking about muscle control or you’re talking about whether somebody can balance or whatever. If you do not have control of your bladder or your bowel muscles then you will have an issue. This is common for people to have disabilities, so I wouldn’t worry so much: just come to the realization that your CP is the cause of your problem, and I bet you once you finally get there, you will feel better about yourself: remember, do as much for yourself as you can, but if you need help don’t be afraid to ask, because that usually works best if you need help. take care, Brian Link to comment
Anonymous12 Posted May 7, 2022 Author Share Posted May 7, 2022 So my prayers were answered in a weird way. I was on my bed without any clothes on and all of a sudden, I watched a little urine leak onto my bed sheets. I’m disappointed that I am dealing with this but I don’t think my brain can deny it any longer.Now that I’ve ”seen” it, I just have to process what is going on. I’m getting there slowly but surely 2 Link to comment
Little Cub Pants Posted May 24, 2022 Share Posted May 24, 2022 I've wanted to comment on this for quite a while. But I never could find the right words to express how I truly felt about it. This is going to be very Raw, by that I mean, this may or may not contain very colorful language. I just want to go ham into this like no tomorrow. No jokes, no nothing. This subject hits very close to home with me. Mostly because I was born with cerebral palsy and had to live with it my entire life. I've had to deal with so much bullshit in my life because of it. Everything from doctor's appointments, to surgeries, to therapists, to people that walk up to me and ask me the dumbest shit. Granted, it's not their fault, I would probably act the same way given their situation too. And the thing that really sucks about it is no one's there to tell you what it's like. No one's there to be there for you, and honestly, society doesn't really address it either. They just kind of sweep it under the rug as if it doesn't exist. Which doesn't help anything at all. And basically you're on your own. You're just a damsel in distress. And that's the really rough part because not only do you want people to care, but you want people to KNOW to care enough to ask you how you feel about it. And that doesn't happen, at least in my experience. So it basically leaves you to figure things out for yourself. And you'll discover that your body interferes with anything and everything you want to do in life, that you're constantly going to run into limitations of your body like it or not. And you will grieve over the loss of the life you WISH you had, and that's going to be very painful. What this all boils down to is that essentially you have to go through a new learning curve separate from the one you THOUGHT life would give you. And that definitely takes time to get used to. You're life basically becomes reliant on other people like it or not. And I wouldn't be surprised if you feel like you weren't your own person anymore, even though that's not true. But sometimes the stigma of it can be very overwhelming, might even have people patronizing you, belittle you, treat you as though you're NOT "Normal". And it's not that they mean to do that, but that's just how they've been taught. But that's NOT just an "cerebral palsy" thing that's a disabled thing all together. And it sucks that we live in a society like that, but it's true. Granted I've had situations where that's not the case. But growing up having to get use to that was just very very annoying and in some ways VERY heartbreaking. I mean I'm sure it's great for the person that's the therapist or that's assisting the person needing the help, but as for the person themselves, it's not so great. Not because they're not being well cared for, or in good health or anything. But because sometimes throughout life you can feel as though you just exist for the other person to take care of. And I'll be honest, you never do get over that, you NEVER do! But if there's one piece of advice I can give you it's that in time you DON'T ALWAYS feel that and the more you deal with your own unique situation, and just say "FUCK SOCIETY!" The things you go through on a daily basis start to not matter as much. Granted, it doesn't make living with cerebral palsy any better. But what it does do, is add a very unique perspective to you because now you're not looking at in terms of from the outside in, so to speak but you're looking at it from the inside out. And what I mean by that is you start to worry less about "does this fall into the "normal" category", and you see things from the point of view of your situation. And when you do that things get an little easier everyday. But it takes time just like anything. I guess that's another reason why I always hated high School because I always looked at it from the point of view of, "why can't I be like the OTHER kids?"part of the problem is society very much ENCOURAGES that. Being like everybody else I mean. Only when you grow up and you go out into the real world you realize that it's very much NOT like that. Which leads to yet ANOTHER learning curve within your adult life. So with all that being said, how do you come to terms with your cerebral palsy?? Honestly, you DON'T! You just learn to make room for it. One thing I will say though is that getting out of your own head makes wonders for people like us. As a matter of fact, that's why I come here because number one, I was constantly thinking about how I was going to spend the rest of my life disabled. And number two my little side kept growing and growing and growing and continues to grow to this VERY day. And finding a second family like you guys has DEFINITELY made my days on Earth much more enjoyable. Now, if ONLY we can make that into a lifetime until I can finally go home and see my Daddies once and for all, then I'll be good!?????????????♥️??♥️??? Happy Jeggy Weggy!!!!!??????????♥️?♥️???? 1 Link to comment
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