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Post by castmenow on Jan 9, 2019 19:06:37 GMT
I saw this shout by ikb5 from yesterday,
"Put my KAFO on last night for first time since before Xmas. Had forgotten how good it felt."
I put both of my KAFOs on (without back / hip section) for the first time in a while and yes it did feel good after not wearing them for a bit. I then proceeded to vacuum the house from top to bottom. This is the first time I have done anything like this while wearing my leg braces and it was so enjoyable even if it took longer. This was the first time that I had tried to do something other than sitting around reading, watching TV, preparing lunch or drinks. Perhaps housework will not be a chore in the future.
Any one else have any specific activities that they have tried in their braces or enjoy doing whilst braced.
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Post by deejay on Jan 9, 2019 22:39:05 GMT
Similar actually. I somehow like to experience what it is like to have to 'get used' to wearing something different. Almost to the point where it is 'normal'.......although I probably wouldn't like it if it were to be 'normal'! Doing work around the house, although that doesn't come naturally! On occasions I have fallen asleep, almost forgetting I have the brace on. Waking up and then realising is good. A couple of days ago there was a knock on the door mid eve when I had my kafo on, under jeans. I knew it was the window cleaner collecting money as he had left a ticket earlier. I took a deep breath and went to the door with the money ready so I would not have to move much. I opened the door, handed over the money and he went off with no reason to notice anything, but it still felt like a big risk1
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rk52
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Post by rk52 on Jan 9, 2019 23:03:30 GMT
I’m sure I wouldn’t like it if it were normal, and that’s why I have enormous respect for people for whom it is normal. If there was a ring of the doorbell when I was wearing mine I’d simply be “out”!
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Deleted
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Post by Deleted on Jan 10, 2019 13:30:03 GMT
I guess I'm lucky to live in a house which is not too closely overlooked as both my next door neighbour's houses are in line with mine. However, we do have large patio doors in our lounge (we are lucky enough to have a nice view) and never draw the blinds whilst we are in there. In the winter especially, it is easy to see into from the first floor flat across the road. I'm pretty sure they must have seen me limping and releasing the locks whenever I sit down but we do not know them sufficiently well for them to comment. If word did reach the neighbours who we know very well, then my wife or I have a cover story which is that I have an age-related knee problem which needs resting whenever it's painful. (Yes I know it's not very convincing but what business is it of theirs?)
Apart from the risk of being seen by my family and close neighbours and friends (who could reasonably expect to have been told about a real mobility problem), I don't feel too conspicuous. I do not leave the house in my caliper apart from getting firewood in from just outside the back door. If I put it on (usually late pm/ early evening) then I do not take it off until I go to bed which means I have to do everything I would normally do late pm /early evening. My wife and I have agreed that she will not make concessions for me apart from answering an unexpected knock at the door. So, I make multiple trips up/down stairs, move around from room to room and help make the evening meal. In fact my wife finds it easier to accept if I move around 'normally'. It is often not easy to move around but it is the feeling of having to live with one useless leg which is the reason I wear a caliper.
Having shared all this, I too have enormous respect for anyone who has to live with a permanent disability and when I meet someone like this then it does cause me some embarrassment that I pretend.
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Post by jaylad on Jan 10, 2019 22:24:56 GMT
These days I mostly use my KAFOs around home, living in a first floor flat means I'm not overlooked so I can basically do as I want and can easily be braced for a whole day if I so choose. One problem I find with wearing braces and letting them do their job by letting my 'paralysed' legs relax and be supported is that I then need both hands to use crutches which makes domestic chores a bit difficult. Well that's my excuse anyway!
In the past I've been brave (or foolish) enough to go out crutching around with my KAFO's, luckily I never got spotted but I am a bit wiser (though not much) and more careful these days.
Whilst a first floor flat is good for privacy the stairs are a bit of a challenge in KAFOs, though not impossible. However the main problem is that my other source of mobility is my seat on wheels AKA wheelchair, which lives by my front door when I'm having a few 'pretending' days. I find the chair is so much easier to get around in -or am I just getting lazy and prefer sitting down.
A final thought on feeling guilty at 'pretending' to be disabled. Assuming that the desire to use KAFO's or other mobility aid is down to an inner desire to actually be disabled, also referred to as BIID, then since that is a recognised condition (although not universally so) that is in effect your disability and explains your 'need' to be disabled.
My other thought is that, especially when out in public, providing what you do does not in anyway disrespect people who do have a genuine disability then you are not doing anyone any harm. Discuss!
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Deleted
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Post by Deleted on Jan 11, 2019 11:35:18 GMT
You make some interesting points, Jaylad, and it sounds as if you are more 'comfortable' with your feelings (condition?) than I am.
I suppose I probably do have BIID as, for as long as I can remember, I have disliked my right leg and foot and felt it was superfluous (yes, I know, I'd fall over without it!). Deep down, I would like it to be paralysed so I had a proper reason to wear a caliper all the time but then I struggle a bit when I think through the many downsides - particularly the modifications to drive a car necessary for a right-leg disability. But I know all the issues are surmountable and that many people cope admirably with much worse issues. Also, I know that if I had had a disability as a child / young adult it would have had a huge effect on my self esteem. I also would be quite happy to be a right leg above-the-knee amputee if the need arose but one needs to be careful what they wish for! As for using BIID as the reason for wearing a caliper, I don't think that would work for me as most people have no clue what it is and, as you say, it is not universally accepted by medical professionals. From time to time, I have seriously considered going to my GP in case there was some treatment available (CBT perhaps?) but have chickened out as the conditions of BIID and Abasiophillia are so rare.
As to my 'embarrassment' when seeing those with a genuine disability, I suppose 'embarrassment'was the wrong word to use. What I really meant was that it pricked my inner conscience. And I think probably I feel my pretending IS disrespectful of those with a genuine disability but, fortunately the lack of respect is very much internal to me. I would fully understand though if someone genuinely disabled was highly critical if they became aware someone was a pretender.
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Post by jaylad on Jan 11, 2019 22:17:36 GMT
This is developing into an interesting little conversation/debate. I love it! So yes I am now comfortable with my desire to be disabled, in particular a low level SCI paraplegic, but it has taken a long time to get where I am now and no small amount of pain.
I actually have a foot in two camps (not sure if that counts as a pun or not?) since I have worked with disabled people for a few years and am currently PA to a wheelchair user who does amongst other things Disability Awareness and Equality training, much if which has rubbed off on me. As an aside I actually think that having some experience of being disabled actually helped me to work in a better way, something I've also seen mentioned somewhere on the web when referring to people with BIID.
So we start with the concept that disability is a social construct, ie someone may have a medical or physical impairment but the actual disabling bit comes from all the barriers society places in their way. That also affects the way society views people with a disability as being less fortunate. Interestingly I know several people who have said that even if a 'cure' for their impairment was available they wouldn't take it as their disability makes them who they are and they are comfortable with that.
I'm not sure what the same people would make of someone who chooses to be disabled and that is not an area I would want to explore as not everyone (or even anyone) would necessarily understand BIID. If people choose to take a positive view of their condition then it is not necessarily a barrier but can be an opportunity. I know of several disabled people, who as a direct result of their condition have had opportunities in life that I can only dream about.
So after perhaps too much rambling, I am now comfortable with who I am and I would also say that I have a positive approach to anyone who has a disability as I don't see them as being unfortunate, just different. But then aren't we all in one way or another. Wow that was deep!
As I've said I feel that as long as my pretending doesn't harm anyone else and I don't do anything to disrespect other disabled people then I am fine with what I do and I obviously make sure that my pretending as is accurate as possible. I must admit my role of being the 'model' wheelchair user does get tested when I'm wheeling round the local store, I'm sure my wheelchair is fitted with a device that makes both it am me invisible.
Well that's more than enough brain activity of one evening, Ill be interested to see what other people think.
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rk52
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Post by rk52 on Jan 12, 2019 11:57:49 GMT
Interesting comments about BIID and "wannabes". There is a forum designed for disabled guys and the people who admire them, the "devotees", which might be of interest. It's quite a bit busier than this one and it may be that there are genuinely disabled guys there who have a view on pretenders and those with a desire to become disabled themselves. There's a wide variety of disabilities, and a wide variety of admirers - mostly female but there are some gay men among them as well. There are also some gay disabled guys as well I think, so possibly something for everyone! It's at paradevo.proboards.com/
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Post by jaylad on Jan 19, 2019 16:25:03 GMT
Hi RK52, thanks for the reply, I did find the paradevo site a while ago on one of my many voyages of discovery around the internet although it did seem to be mainly female admirers. Must have another look some time and maybe join their forum.
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Post by castmenow on Jan 19, 2019 21:10:21 GMT
Looks like I have prompted a wider discussion than I expected with the original post. I know I like wearing my braces because I feel good when I have them on and it feels right, but I have never thought deeply about BIID and myself although I have come across BIID. When I do think about it, I do not have any great desire to be disabled per se, but I do want to wear braces if that makes sense. I am reasonably happy with my own feeling on this, but still feel guilt at times when thinking about others. I am perfectly happy to go out in public in my braces, however, my wife is not keen at all on me doing this.
In terms of being disrespectful if out in public, then I would not expect many people to question if I was disabled or pretending and most people would assume I was disabled. Therefore, as long as I do not behave in a visible manner that gives a clue to being able bodied, then I will not put myself in the position that people question my motives, and consider that I am being disrespectful.
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Deleted
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Post by Deleted on Jan 20, 2019 17:17:56 GMT
The question of respect is an interesting one. I would like a genuine medical reason to have to wear a KAFO all day every day and therefore out in public, as it feels so natural to me. I also think I would like to have one leg that I was unable to use (although this might pale once it was too late to change!) which is why I think I may have BIID.
In that circumstance, would I be disrespectful of 'real' disabled people if I had brought paralysis of my leg on myself (I don't how to do it at the moment, by the way)? Smokers with lung cancer, obese people with mobility problems, Type 2 diabetics with amputations could all be considered to be self-inflicted to some degree yet it would be a hard-hearted person who did not have some sympathy for them and therefore some respect for their disability.
I've probably opened a whole can of worms here!
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biene
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Post by biene on Jan 21, 2019 18:39:33 GMT
I'm extremely ambivalent about being in public while wearing braces.
On the one hand, the appeal of braces is doing regular activities while wearing them, and a 40 m2 apartment is simply too small to properly get into the rhythm of moving in them, which is something I can only compare to what tightrope walking must be like -- intense control and concentration, but at the same time a sense of incredible freedom that paradoxically comes from the constriction of movement. And going outside and mingling with people is really the only way to experience that.
On the other hand, I feel incredibly self-conscious and uncomfortable being in public with braces. It feels like deceit, and also like a form of exhibitionism. There are some ethical reservations tangled up in all that, but primarily it is connected to my own personal hang-ups around standing out and drawing attention to myself, particularly if that attention takes the form of pity (or admiration) that is misplaced because I don't actually have a physical disability. It has nothing to do with people's actual reactions. I have social anxiety and part of how I cope with being around strangers is by trying to interact with them as little as possible, but it also means I tend to have an irrational fear about doing something "wrong" and how people (on a purely theoretical level, not, you know, actual people) might perceive me.
My relationship with braces is difficult to classify. BIID doesn't entirely apply -- I don't have the sense that my legs should be paralysed or anything like that, and I think, overall, I am happy that I don't have to permanently rely on braces to get around. But there is a sense of "rightness" about wearing braces and moving about with crutches, and there have always been phases in which the sense of need (not wanting) has been pretty unbearable. "Pretending" feels like too weak a descriptor, but "wannabe" too strong.
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Deleted
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Post by Deleted on Jan 22, 2019 12:35:44 GMT
One of the joys of this forum is the well-written and insightful posts from obviously intelligent and thoughtful people.
Biene, your post has eloquently described some of the 'inner conflicts' that I have about wearing a KAFO myself.
Firstly, the incredible freedom / constriction of movement paradox exactly describes how wearing a brace feels to me. In my case, I live in a reasonably sized two-story house with my very tolerant(!) wife so I have plenty of opportunity to experience the freedom/constriction without leaving the house. I would also feel very self-conscious going out in public in my current brace but my aim is to get a good enough fitting KAFO so that all other people will really see is a straight leg which I hope would not be too exhibitionist.
I can identify with what you say regarding ethical reservations (hence my posts on the 'respect' discussion) and not wishing stand out or draw attention to myself. In my case, I suffered badly from social anxiety in my teens but going out to work and to university gradually allowed me to cope with it, form normal relationships and to help bring up two well-adjusted children (my wife must take most of the credit for that though!). Even so, I hate crowds and do whatever I can to travel, visit attractions, go shopping etc, etc away from peak times. I too, am acutely conscious of doing or saying something wrong in public.
I have lived with a fascination and longing to wear a right-leg KAFO for decades (yes, really!) but career, family, etc, etc got in the way of trying a real one. It is only now I have retired (and my wife has known me for a very long time) that I felt I could try wearing a real KAFO (as opposed to the odd DIY experiment). My 'longing' has very much turned into a 'need' as it indeed feels so "right" and I feel pretty miserable if I cannot wear it at least for a few hours each day. In fact your description "unbearable" comes pretty close for me too, especially if I have not worn it for a day or so for one reason or another.
I too feel that 'pretending' is not strong enough for me which is why I think I would like a 'genuine' reason to have to wear one. For me, a genuine reason would allow me to wear in front of family and close friends and function normally (well, relatively normally!) but of course there would be no going back (unless any one knows of a recurring variable condition treatable with a KAFO). So, I therefore have rather assumed I fall into the BIID category as I am not that happy with having a useful right leg but, in view of your thought-provoking comments, I'm wondering whether the useless leg desire is actually a secondary effect as it would support my fast developing primary need to wear a KAFO full time.
This is probably all too deep and a professional psychiatrist would have a field day but it's quite cathartic writing it down! Thank you for your post.
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rk52
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Post by rk52 on Jan 22, 2019 13:06:04 GMT
Two very interesting posts, thanks biene and ikb5. I also have bad social anxiety, I'm now wondering whether that is a common factor among other members here. I have never managed to conquer it and as a result am still single, although I never wanted the conventional lifestyle anyway, I've always been very independent. As a result there is no way I would ever go public wearing one or more of my kafos. I don't have a strong desire to wear them anyway, not as strong as some here. I feel a lot of the desire that I had when I was younger has been ameliorated now I have finally managed to get some. I know they're there for when I get the urge. I too hate crowds, and the idea of the standard retired person's occupation of going on a cruise with a thousand other people is my idea of hell! Other points such as extreme self-consciousness and a fear of saying the wrong thing also chime with me. It may all be a bit deep but if it helps us help each other to a better understanding of our condition (for want of a better word) then I'm all for it!
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biene
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Post by biene on Jan 22, 2019 18:01:31 GMT
Interesting, I had assumed that the social anxiety was my own idiosyncracy and not something I expected that other brace wearers here would share. Certainly it's not a descriptor that applies to the brace fans that I have met in Germany, but they (pretty much without exception) also seem to have definite devotee leanings in addition to liking to wear braces themselves, so it may be a somewhat different dynamic.
I have however long suspected that many, if not most, of us are "wired" a bit differently than the general population in one way or another. Mental health struggles in general are a recurring theme, but that's really a bit of a chicken and egg thing (is the need to wear braces the cause of mental health problems, or a result, or neither?). I've noticed that we have a tendency to focus intensely on things that interest us, and often have hobbies (besides braces) that involve acquisition of detailed, specific knowledge and skills. And non-heterosexual or non-cisgendered people seem to be somewhat overrepresented amongst our ranks.
I've found that the intensity of my need to wear braces has lessened over time, mostly due to 1) accepting that it is not something that will ever completely go away, rather than trying to deny its existence, and 2) having the opportunity to wear my braces when the urge is there. Simply knowing that I can if I want (I live alone) helps a lot. If I go out in public braced, I find it easier to have a companion with me. It somehow reduces my feeling of being stared at because I can focus on the interaction with my companion rather than wondering what everyone else around me is thinking.
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