Viewing 20 posts - 1 through 20 (of 26 total)
  • #74059
    Hello

    Hi my name is Karl. I don’t really talk about my fsh much to people. I don’t really acknowledge it much. It has become natural to be this way. I had a hard time dealing with it when I was younger, and if I’m honest I try to avoid thinking too much about it. I have some questions I need to answer so I can’t ignore it. I thought I might find some answers somewhere on this forum. I do not wish to upset or offend anybody, so I must tell you I have some quite strong and conflicting opinions about the right thing to do in certain situations. I am a positive person but very sceptical and scientific in my approach to life. If you continue to read, pleas read with an open mind.

    What is my purpose in life ?. Do I have one ?. Is anything I do important or meaningful on the grand scale of time ?.

    It really comes down to what will I do while I’m here, and what will I leave behind.

    I ask myself how much time do I have left ?. How can I plan for the future when I don’t know what the future will be ?.

    Should I have kids ?. Shouldn’t I stop my fsh from going any further than me ?. What if I did pass it on to my child ?. Would they resent me for it ?. What if I’m not around for much of their life.

    I ask myself if I should have a relationship and settle down ?. What kind of husband would I be ?. How much could I do for her ?. how would I provide her with the life I should ?.

    I have many questions I have spent hours thinking about, these are a few.

    It would be interesting to hear your thoughts.

    Thank you for your time.

    Have a Perfect Day
    Karl

    Dovito28 Dovito28
    Participant
    Posts: 171
    Joined: 17/11/2011
    #82935
    Re: Hello

    Hi Karl

    Welcome to TalkMD. You have raised a lot of questions, this thread could lead to some discussion! Some of your questions/thoughts I can relate to and I think probably a lot of others on here will too.

    Not sure where to start, at the beginning is a good a place as any I guess?

    I have a real need to feel useful, have a purpose each day. Using the skills that I have, making use of what I can do gives me a lot of satisfaction. I try not to look too much at the bigger picture because it makes my brain malfunction but I reckon that everyone at some time or another has pondered about their purpose in life.

    I have done a lot of thinking about relationships over the years and you’ll come across some previous threads that are relevant. There was a bit on the a Wright Stuff this week about relationships and disability – I thought it was a really good discussion. It was on Wednesday and I am sure it will still be available on demand5 for a while.

    I will leave my musings there for now, others will chime in I’m sure. One quote that I keep coming back to is from Douglas Adams. Something like “life is what happens while you’re busy making plans”. It makes a lot of sense to me… helps me gain perspective (as I have a tendency to be a bit of a worry guts at times).

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #82936
    Re: Hello

    Hi Karl welcome to the forum, I saw your post earlier but didn’t reply as I needed to go away and have a think about some of the issues you have raised.

    I’m not one for making a big impression and I have never really thought about why am I here or what am I doing. I like to think though that by being here and interacting with people I maybe make them think about disability in a different way than they do. That we are not to be pitied and just because I’m in a chair and can’t do certain things doesn’t mean my life is over!’

    Relationships and children is a tough one. I would love to have kids but I just don’t think that’s going to happen for me for one reason and another. Passing on my condition wouldn’t be an issue as my MD doesn’t work like that. As for meeting someone, yes it would be nice to be married or have a partner but do far no luck, but then why does my life or society feel that my life is not fulfilled because I’m not. It would be nice to share experiences with someone but to be honest I can can count on 1 hand the people I know who are married and seem truly happy, everyone else seems to gripe or moan about their other half and it does tend to put you off, more often than not it makes me happy I’m not in a relationship and have that hassle!!

    It will be interesting to see what others say.

    Vicki
    Participant
    Posts: 1,015
    Joined: 05/03/2015
    #82937
    Re: Hello

    Hi Karl.

    I have FSH. Everything I say from here on out is my own opinion and I also dont wish to offend.

    Purpose in life. It is what you want it to be, whatever makes you feel impassioned, makes you laugh….just dont sit on the sidelines waiting for it to happen.

    No one knows for certain how much time they have left so try not to view life with a countdown clock. Make plans.

    Kids and relationships. That is a totally personal choice, not every one wants to have children. I dont think you should let FSH dictate how you live your life in that respect, that’s not to say that there arent choices you are to make and adjustments when it comes to, dare I say it, a healthy sex life, but there are plenty of options, I’ve found.

    Like I said, these are my views but FSH shouldnt be thought of as a barrier that is insurmountable and preventing you from living your life the way you want to. There’s a way around things.

    What about second breakfast?

    IG: https://www.instagram.com/kissofdarkness1/

    kissofdarkness
    Participant
    Posts: 266
    Joined: 01/10/2010
    #82938
    Re: Hello

    Welcome to TalkMD :)

    Sagar
    Participant
    Posts: 82
    Joined: 20/12/2010
    #82951
    Re: Hello

    Hi everybody.

    Thank you for all your feed back. It was interesting to read. It was also interesting that no men replied. Could it be a common situation with disabled men not to talk about it.

    Sar78 said about felling the need to be useful. I understand what you mean Sarah. I am the go to guy in my family. When people are at the bottom of the barrel, the end of their tether, or in trouble, they come to me. I love that feeling of being the guy people can trust and depend on.

    Vikki said about life not being over because your in a wheelchair. I completely agree. It’s not over it’s just a totally different life to the one I thought I would have when I was younger. You have my exact feelings on relationships. I see them as a whole lot of work and a lot of hassle. It’s just that sometimes it would be nice to wake up with someone you really care about. However I am not sure I have it in me to give somebody that much of myself.

    Kiss of Darkness, you dared to say talk about a healthy sex life. So I will dare to talk about it also.
    (please don’t read if easily offended)

    I have no real problems with sex. Women are quite understanding about everything. I kinda think they like the fact that it is a genuinely shared experience as I can’t take full control. I also work hard (no pun intended) in other areas to make up for the lack of positions and tricks I can do. I haven’t had a serious relationship for about ten years. Just a string of one night stands and passes in the night, with drunk girls from nightclubs. I do o.k for myself, in fact better than some of my non disabled friends. I have never had sex with a disabled girl, I just think it would be really awkward, I could be wrong. I’m sure there must be disabled couples with md, that have a good sex life, I’m just not sure how that would work.

    KOD also said to do what makes you feel good or impassioned. Truth is, I don’t know what that is. When I was 6 I saw Hulk Hogan and the ultimate warrior on t.v. I said that’s what I wanna do, what I wanna be, a pro wrestler. I spent the next 12 years of my life training to do just that, I trained as an olympic freestyle wrestler, budo sombo submission wrestler, and a pro wrestler. I didn’t smoke, drink, do drugs. I exercised, worked out. But in the end MD kept me out of the ring. That was the thing that made me feel good, that was my passion. I have never felt like that about anything else, before or since. I enjoy writing stories, but to be honest I don’t write them all down, just think of thousands of different ones. I make notes even plan most of them on an 8 point arc. I just don’t have the passion for it to actually do it. I make videos for you tube, I did like doing that for a while but not so much now.

    I did do one thing that on some levels made me feel go but on the whole I gained no real satisfaction from it. In fact at times it was depressing. It was my selfless good deed. I gained nothing from it. I worked as a volunteer for the samaritans for about a year, but all the waiting around in the cold and rain for buses gave me pneumonia. I woke up one morning unable to catch my breath, my throat and nose were blocked, I was suffocating. I managed to get out of bed and call an ambulance. How I managed to speak I will never know. They say I was on deaths door. Now this is where I tend to disagree. I am under the delusion if you will, that I am immortal and can never die. You know and I now that’s nt true, however it is something that keeps my head strong. I am a very positive person, however I am realistic. I will look at a situation from all angles and try to understand the things I disagree with. It seems to me that you are all under the impression I’m unhappy with my situation. It’s not ideal but the way I handle it keeps me content.

    You have all been great with your thoughts however I feel I am the only person that can truly answer my questions. It is just good to actually know there are people out there that have the same thoughts and feelings as me.

    I spoke to sar78 on face book and told her a little bit more about my views on disability which I would like to share with you.

    I am a bit ignorant of disability. I have no disabled friends. I don’t even know anybody else in a wheelchair. I feel uncomfortable being sat with a group of disabled people. It bugs me when other people in wheelchairs nod and smile, as if to say hey look were the same. I have spent half my life in denial, however now I can’t ignore it. I think that is why I distance myself from it.

    I probably sound like a complete bastard for being like that. I mean no disrespect. Do any of you feel like that ?.

    Thank you all again for you insight. I hope we can keep this discussion going. Maybe it’s time I made some disabled friends.

    Have a Perfect Day

    Karl

    P.S, does anybody know who the most famous person with MD is ?.

    Dovito28 Dovito28
    Participant
    Posts: 171
    Joined: 17/11/2011
    #82939
    Re: Hello

    @dovito28 wrote:

    ……. It was also interesting that no men replied. Could it be a common situation with disabled men not to talk about it.

    Welcome to the forum Karl.

    ….you are not only brave nad forthright in your posts but very insightful…..

    I will reply but it might take a bit of a run up !

    ….but our mate Ranald will be pleased to sort you out when he sees this.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #82943
    Re: Hello

    Thank you Taungfox. I look forward to your reply. I’m glad you found it interesting.

    Hello Ranald, how are you ?. My friend Fox here tells me you will sort me out. I don’t need sorting out, it would be good to hear your opinions on the thing’s I have said though. I have read some of your posts. You certainly have a lot to say. I look forward to your comments.

    Have a Perfect Day

    Karl

    Dovito28 Dovito28
    Participant
    Posts: 171
    Joined: 17/11/2011
    #82949
    Re: Hello

    @dovito28 wrote:

    KOD also said to do what makes you feel good or impassioned. Truth is, I don’t know what that is. When I was 6 I saw Hulk Hogan and the ultimate warrior on t.v. I said that’s what I wanna do, what I wanna be, a pro wrestler. I spent the next 12 years of my life training to do just that, I trained as an olympic freestyle wrestler, budo sombo submission wrestler, and a pro wrestler. I didn’t smoke, drink, do drugs. I exercised, worked out. But in the end MD kept me out of the ring. That was the thing that made me feel good, that was my passion. I have never felt like that about anything else, before or since. I enjoy writing stories, but to be honest I don’t write them all down, just think of thousands of different ones. I make notes even plan most of them on an 8 point arc. I just don’t have the passion for it to actually do it. I make videos for you tube, I did like doing that for a while but not so much now.

    I know how that feels, I used to dance and was physically fit but there’s only so long you can postpone the progression. But like you said earlier – it’s not the life you envisioned but different, therefore a different passion in life needs to be found…..you’ll find it when you least expect it :)

    @dovito28 wrote:

    I am a bit ignorant of disability. I have no disabled friends. I don’t even know anybody else in a wheelchair. I feel uncomfortable being sat with a group of disabled people. It bugs me when other people in wheelchairs nod and smile, as if to say hey look were the same. I have spent half my life in denial, however now I can’t ignore it. I think that is why I distance myself from it.

    I probably sound like a complete bastard for being like that. I mean no disrespect. Do any of you feel like that ?.

    I know what you mean and I avoid eye contact with the nodders and smilers for the same reason. It’s not a good foundation for a friendship I have to say – I experienced it while I was at uni for the first year kind of the ‘token disabled people – let’s put them together cos they’ll have loads in common’ mentality. Didnt last long. I should point out I do know disabled people but we’re friends despite our disabilities – though I’ve been in mainstream education throughout my life so the majority of people I’m friends with happen to be able bodied. Wonder if that’s different for someone who didnt go to a mainstream and/or when to an afternoon club?

    Dont know if there is a famous person with MD – it’s certainly not advertised to my knowledge if they have the so called ‘mild’ form of MD.

    What about second breakfast?

    IG: https://www.instagram.com/kissofdarkness1/

    kissofdarkness
    Participant
    Posts: 266
    Joined: 01/10/2010
    #82946
    Re: Hello

    @dovito28 wrote:

    I don’t really talk about my fsh much to people. I don’t really acknowledge it much. It has become natural to be this way.

    No.. I tend to find my partner also doesn’t talk much about his disability.. only so much to say that he is in a wheelchair (for those who need to know on a need to know basis), and that he has weakened muscles. People don’t tend to understand any more than that.. nor do I think they want to understand. They don’t want to understand how difficult a disability makes your life, and how you didn’t choose to be in the situation you are in. The only people he goes further into it with are the bureaucrats who don’t want to give the resources that he needs, and the ones who want to take away the resources he has. Occasionally there is a doctor who understands what MD is, and you appreciate not having to explain it again, but most of them need a reminder.. the number who think that MD and MS are the same thing..? Insane. Even I know the difference and I am not a trained medical professional.

    @dovito28 wrote:

    What is my purpose in life ?. Do I have one ?. Is anything I do important or meaningful on the grand scale of time ?.
    It really comes down to what will I do while I’m here, and what will I leave behind.
    I ask myself how much time do I have left ?. How can I plan for the future when I don’t know what the future will be ?.
    Karl

    But Karl.. I can say the same thing. What is my purpose in life? As it stands, I am perfectly able bodied. That makes no difference in the scheme of things. Who knows what will happen tomorrow? Who knows what will happen when I lay my head on my pillow tonight? I would hope that my purpose is to love, be loved, live and help others live. My partner is the love of my life.. he has his disability, yes, but emotionally he is more able than me. He is always able to calm me down if I am upset.. just a look of concern on his face, a smile, or a “love you” is enough to settle me, and to make me forget about what upset me. All I know is that my purpose in life is not to own a beachfront property worth millions, to own a yacht and a Maserati. That will never happen, nor do I intend it to happen. Nor would it make me happier if it did happen. There is something different that drives me.. perhaps it is an innate understanding that no matter what someone’s appearance, ability or affluence, we are all the same.. some of us just choose to have different priorities in life. Some place people first, some place money first, some place pleasure at any cost first.

    @dovito28 wrote:

    I ask myself if I should have a relationship and settle down ?. What kind of husband would I be ?. How much could I do for her ?. how would I provide her with the life I should ?.

    My partner has often asked himself the same questions, I am sure. Can I answer from the other side of the equation?

    2 years ago, out of the blue, my partner broke up with me. We were so happy together.. I loved him, he loved me.. we went out for a beautiful dinner one night, then the next day I received an email from him breaking up with me.

    I was devastated. Completely and utterly. He was the love of my life. His reasoning? That he didn’t want a marriage, kids and so forth. We had always spoken about just that.. that we would get married, and have kids.

    Why the sudden change of thought? Well I didn’t find out until a year later.. this was his mother’s doing. His mother didn’t want him to stop me from going on and finding someone who wasn’t disabled and would be able to give me everything I deserved. He didn’t argue with her.. he just did what she suggested.

    That year later, we went on a holiday as friends. The first night we were away, we both realised that the flame had not been blown out.. we rekindled that flame and have been back together since. I made it expressly known to him that he was not the only one in the relationship and that he hadn’t given me a chance to have my say. I am only too happy to help him with the trials that come with his disability.. no matter the emotional cost. He is worth it.

    I acknowledge that he will never be able to work full time, to support me like another man may be able to. Luckily we live in an age where women are accepted in the workplace, and that if you are creative, you can often find ways to work from home which would allow me to raise our children, when they come along, and to provide him with the care that he requires beyond that provided by attendant carers.

    Ultimately, as long as any potential partner is aware of what your disability entails, and isn’t going to break under the pressure, it is his/her choice as much as yours, whether you have a relationship and children. I think it is a shame that many people with disabilities go under the radar and potential partners don’t see their potential.. at the end of the day, a person with a disability is a person. If they desire a relationship, then they should be as entitled to anyone else to be in one, as long as they do want one.

    Take care..

    AngelicPrincess
    Participant
    Posts: 85
    Joined: 21/12/2010
    #82947
    Re: Hello

    Hello KOD and Princess.

    I have replied to your post in my on the record post, Princess. Maybe you should read that one first as I am likely to reference it here.

    Kod, Oh my kod. If you had the same passion for dancing as I had for wrestling, then yes you would surely understand the pain and heartache of losing something so precious. A part of you that captures everything you are. Gives you confidence, a purpose. Yes kod you must see through the same shattered panes in which I have seen my world. Even now you know that was you, that’s what made you feel free. No Animal in a cage as I have seen in a comment.

    That is the hardest part. Accepting that you are no longer free, like your nan’s budgie, sat staring out the window at the other birds flying by. Locked in a dungeon perhaps, with no chance of a prince or princess to rescue you. It’s dark, lonely and at times scary and cold. The hardest part is breaking down the dungeon door. It will always call you back, the entity inside. It drags you kicking, screaming, wishing it would stop. It doesn’t. It continues to pull, if you stop fighting you will be locked inside till there’s nothing left. An empty room, where only the entity roams.

    So don’t stop fighting, get out lock the door, jump on a dragon and fly away. That sounds easy but first you have to find a dragon. Until that time, you crawl up mountains and hills, through the mud and dirt. But you leave that dungeon far behind. Don’t ever let the door open, if it does slam it shut and say FEK you !.

    I experienced it while I was at uni for the first year kind of the ‘token disabled people – let’s put them together cos they’ll have loads in common’ mentality. Didnt last long.

    Excuse me this could get topical.

    Is that not the equivalent of saying to a black woman, go join that club, everyone else there is black, you should get along just fine. Seriously, I’ve said it before and I will say it 100 times and more. The world is a Feked up place. Yes maybe you have a bit more in common on some levels than able bodied people with other disabled people. Are all black people the same because they share a history in which white people beat, raped and murdered black women and men. Forced them over on boats sleeping like sardines together in their own filth. made to work harder than any white man probably then or since. Then years later are beaten and murdered and told to go back to their own country. Is that what makes them the same, is that why they would all be friends.

    There should be no difference in black and white. We are all the same so I am told. Then why is there still black and white. Why do black comedians such as chris rock, eddie murphy, dave chappel, and others go to great lengths to tell us there is a difference ?. Why is it important what colour the president is ?. It shouldn’t matter. There should be no difference in the way the country should be run. So why is it such a big deal ?. I could not care less what colour he is, was. or ever will be. As long as he was doing the right thing. There is no colour, only what our eyes create.

    There are differences between being black and being disabled. Being black doesn’t stop you from doing what you want to do, Obama proved that. So maybe that strengthens the suggestion that disabled people might be good friends based on a shared disability. What is this forum about ?. How many of you consider other people here friends based on the time you have got to now each other over the years ?. I am not saying your wrong kod, not at all.

    I looked for famous people with md, found nobody. There should be one.

    Princess, wow is right, however wow for you. You really have strengthened my faith in people and relationships. I need to give your post more time than I can right now. I need to make some food and tea, give my eyes a break from the screen. I will continue this post soon, Please be assured princess I will give you the time your post deserves.

    Speak to ya soon, thanks again everyone.

    Have a Perfect Day

    Karl

    Dovito28 Dovito28
    Participant
    Posts: 171
    Joined: 17/11/2011
    #82948
    Re: Hello

    Reply to Princess and kod, continued.

    Hi, let me continue.

    You say that your husband doesn’t talk about it much. I wonder if it is the same for women.
    If I think about it now, I try to imagine reasons why men might be less likely to talk about it. I think, male ego, pride. At least that’s what it’s probably about for me. I think it comes down to md meaning you are weak. Being weak is not on most men’s list of things to do in life. For someone like myself that wanted to be a pro wrestler, being weak is not an option. I speak to a doctor in canada, only because he saw me wrestling on you tube and wanted to ask some questions. He was a trainee doctor at the time, but specialising in md. We have had many discussions where he is trying to understand the disability from all angles. He is one of those doctors you would be happy to talk to. Most Doctors know nothing about anything unless they are a specialist, but even then they live in a little science bubble that doesn’t allow them to think of a productive solution. Sometimes when people ask I tell them I broke my back in a wrestling match, I got hit by a car, I fell off a four story balcony. if I don’t like that person for whatever reason, maybe they have an odd shaped nose that makes me want to punch it, or because they are just too stupid for my liking I will say things like I jumped out of a plane and the parachute didn’t open,or my mates mum rolled over on me. They will believe almost anything. It is ridiculous the amount of people that don’t know md from someone with paralysis in their legs. Something else we might have in common with black people, apparently they all look the same as well.

    It would seem to me that you have already found your purpose in life. You are the kind of person that should be in government. A person that does not care for the material world. If the world was run by governments and monarchy’s of people like you, it would be a better place. Your real purpose ?, To be that Ray of light. In your partners life. I just realised that in my last post I said you were married, Your not are you ?. My apologies, however having said that, I think you should get married. You have both spoke about it, and if you are both happy to have children, go for it. Tell his old’s to wind their neck’s in or your gonna come round their house and put a bright green sock in the white wash every week until they do.

    Faster than the speeding light she’s flying
    Trying to remember where it all began
    She’s got herself a little piece of heaven
    Waiting for the time when Earth shall be as one

    the time when earth shall be as one.

    Together as one, two part’s of an equation. Your husband sounds like a great bloke. You have never mentioned his name, if you don’t want to I understand. I also completely understand the reasons your partner broke up with you. Some of the same reasons that stops me from committing to a relationship for more than a day. They sound like stupid reasons to me now. Some are I think a matter of male pride and old fashioned thinking. As a man I feel I should be able to provide for and protect my wife and children. I know I can’t so I don’t. But as you have said in this modern world, things don’t work like that any more. My biggest problem would be telling the man who’s daughter I intended to marry that she was going to provide for and support me. The perfect thing about it is that it defines your character, your husband supports in you in other ways. Ways that you wouldn’t change for any amount of money. If I could do for someone what your partner does for you then I might be prepared to give it a go. Your partner could have made the worst mistake of his life that day. It is fantastic that you found your way back to each other. It sounds like you give each other meaning. I am genuinely quite overwhelmed by your story. I really have a lot of respect for you.

    Thank you for the way you live your life.

    Have a Perfect Day

    Karl

    Dovito28 Dovito28
    Participant
    Posts: 171
    Joined: 17/11/2011
    #82945
    Re: Hello

    @dovito28 wrote:

    Thank you for all your feed back. It was interesting to read. It was also interesting that no men replied. Could it be a common situation with disabled men not to talk about it.

    Hi Dovito,

    Crikey, you’ve certainly shaken things up, but in a good way though. Interesting comments on the fact that no men have replied and do not seem to talk about it. I’ve got FSH and I was only diagnosed about 5 years ago at the age of 47 and it was a big shock to the system. I’m married with a beautiful daughter who by the looks of things has not inherited the condition thank goodness. I’m still able to get about under my own steam although I’m slowing up as things worsen. Do I talk bout my FSH? Well, yeah I’ll tell people, show them my pathetic arm, but do they really care? I’m not convinced they do, so in some ways I think I probably don’t tell them about how much pain and discomfort I’m in every day. “How you doin’ mate?” is a frequent question everyone gets asked, disabled or not, but do they want an honest answer? I don’t think they do. So you always reply “Not bad thanks” or some other mealy mouthed reply. I think this is why I don’t always talk about how I’m doing. To be honest I find it hard to talk even on here in some ways, because some of you guys are so brave in coping with what you have and have a far harder time than I have in my life. I know a good number of you are in wheelchairs and I can understand how difficult it must make things for you, but the fact that I am able to get around on my (weakening) legs makes it difficult to completely understand how hard things can be for you makes me like a fraud at times. This is my problem I know, but I’m still coming to terms with what I have and the effect it is having on me.
    As for the demonisation of all the vunerable in society that is going on at the moment, well that will have to wait as I need to go in a minute or two.
    I hope this may have answered your questions a little bit more about us guys. Speak to you again soon,

    Regards,

    Paul

    Paul58
    Participant
    Posts: 85
    Joined: 05/10/2010
    #82942
    Re: Hello

    Hi Paul, Thanks for the message.

    I have spoke to others about this in another post, but this ones for you.

    I am glad I can bring something good to the table.
    My words are mine, and only that.
    I can’t do much, just what I’m able.
    I’m just a guy that lives in a flat.

    I’m a nobody, That’s what I am.
    my opinion counts for just me .
    What do I know or understand.
    Nothing or something, what will it be.

    Nobody’s Perfect, so what does that make me.

    By William J Dovito.

    That poem is not one of my best efforts. However I think you understand my meaning.

    You are, and I mean no disrespect, a lot older than me. You have lived a pretty full life compared to some of us.
    I am really pleased to hear your daughter has no sign of md. That is part of my biggest concern. If I have children, I would hate to see them go through what I did. I think you have the right attitude towards talking about md. As I have mentioned in previous posts, my reaction varies. When faced with the common question, Alright mate, how are ya ?. I tend to reply most of the time with an affirmative “I’m alright mate, yourself ?. Other common replies are, “You know me, same ol G”. or not bad, you ?. I tell people what I want to tell them based on certain attributes, such as. Professional settings, friends, family, pubs, nightclubs, if I feel it’s worth taking the time out of my day to explain it to them. I have answered so many people in so many ways, I even think I referenced the smurf’s once. I only allow them to know what I want them to know.

    Sir, I call you that so you know you have my respect, for what I am about to tell you is something you may not want to know.
    You were diagnosed at 47 myself at 13. My journey from then to now has been a story of serious deep to the bottom of the barrel and back, twisted darkness into light, an artificial light perhaps, a light none the less. I talk to a lot of my mums friends and older relatives, we have a lot in common in terms of health and physical problems, I find that it’s the ones that are on the way out that identify the most. Not to say anybody is on the way out, but they know about falling and being in a wheelchair. It makes me feel old. I hope you don’t go through the same process myself and others have. I really do. If you are going to go through a similar thing. I will tell you it’s hard. It drains you for everything you have, if you fight it. I did, you may not. Just like Superman I took on the bad guy, he shoved a big lump of kryptonite in my ear hole and said how do you like me now ?. Superman went down, fell hard a lot, he tried jumping off of buildings but fell in every way imaginable until he finally said I can’t do it, I will never fly again. Superman got drunk had another fight, this time with himself. Nearly killed himself in the process. Superman didn’t kill himself, superman came back fighting. He found a way.His family, his friends, the people he loves, that’s what kept superman in the game. He was smarter than the bad guy. Superman caught the bad guy and locked him up. he never flew again, he wasn’t superman any more but he was ok. I hope you never have to fall like superman. It could be very hard for you, however I think you will be just fine. Your wife and daughter must be lovely people.

    (The superman story has nothing to do with the irony of christopher reeves being in a wheelchair)

    I really hope I haven’t upset or offended you in some way. I realise i may have pushed the boat out a bit far this time.
    I mean it when I say you have my respect. I just want you to know that even if you feel like a fraud, you don’t understand what it’s like for wheelchair users, and you can’t seem to identify. We can, we have been where you are some of us at a much younger age. I am sure that all of these amazing people that post on this forum will provide you with all the support and advice you need. I did it the hard way, I tried to do it on my own. It took me a long time to realise, I can’t do this all by myself, I know I’m no Superman (Scrubs reference, great show).

    Sir I must go to the shop and get dog food before it shuts, sorry to cut this short.

    My best regards

    Have a Perfect Day

    Karl

    Dovito28 Dovito28
    Participant
    Posts: 171
    Joined: 17/11/2011
    #82950
    Re: Hello

    Hiya Karl

    Sorry i didn’t reply to this thread sooner, i have been quite busy of late, that isn’t normal for me, so i should welcome it!

    I am afraid i too fall into the fraud category. I am also one of the walking wounded, and fully acknowledge to having little clue what you guys have gone through.

    I was lucky to have a normal childhood, my only problems being rubbish at school sports and having groin and leg cramps from about 10 years of age. I am know that many MD sufferers would do anything to have just been crap at running!

    I didn’t find out i had Becker MD until i was 28, my then wife forced me to go to my GP,because i was struggling to climb the stairs at home. I am now 36 and am slightly worse, but i know how lucky i am to have Becker as opposed to the awful Duchenne. Becker varies greatly, some suffer as badly as Duchenne but some have no outward signs, apart from maybe a little stiffness after exercise. My wee brother is one of those very lucky individuals.

    Now that i think about it, i fall less now than a couple of years ago, i guess i have just adjusted my gait or something. I walk slowly and deliberately, aware of where each foot will land. I can get away without my crutches until the ground is icy, i then need them for balance and a little support.

    I drink far too much, that seems to be the biggest cause of my falling these days, i fully admit to drinking to forget my marriage and kids, also the usual pathetic emotion of feeling sorry for oneself.

    I sometimes wonder if being in the halfway house is truly a blessing though. My brain still thinks my body is normal, and i am permanently frustrated with my lack of motor skill! Also alot of people think i am “swinging the lead” in order to claim ESA. A former young serviceman with a leg and eye missing, verbally attacked and threatened me once in a pub. I tried to explain that he was still fit and strong, despite his missing limb, but he wasn’t having it! The former Colour Sergeant landlord stopped him thumping me ffs!

    Do i have a point? I am sure i do somewhere. Oh yes, although we walking wounded do not suffer as our wheelie brother and sister do, we still have issues to deal with in society. The typically intolerant public simply don’t understand why we are blocking their path and not simply stepping aside, why we are using the lift in a public building when all else are use the stairs. Alot of tut tutting ensues if we have the audacity to use a blue badge. Incidentally, i only use mine when i have to, i feel self conscious displaying it you see.

    One thing that would really break my heart, would be to see the walking wounded and the wheelies at eachother’s throats, falling for the Roman “divide and conquer” policy. The mendacious politicians will have done a really good job if that happens.

    Kind regards
    Ranald

    p.s. Do you ever fight the good fight on The Guardian’s Cif boards?

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #82944
    Re: Hello

    @dovito28 wrote:

    I am glad I can bring something good to the table.
    My words are mine, and only that.
    I can’t do much, just what I’m able.
    I’m just a guy that lives in a flat.

    I’m a nobody, That’s what I am.
    my opinion counts for just me .
    What do I know or understand.
    Nothing or something, what will it be.

    Nobody’s Perfect, so what does that make me.

    By William J Dovito.
    l

    Not a poet but this sounds good to me.

    Just to be clear, we do like people adding poetry or whatever else they have.
    We do like long posts.
    This is what this forum is all about and it is bringing some of our members back to life.
    All is well in Planet TalkMD.

    "Even if you are not paranoid, it does not mean they are not out to get you!".

    taungfox
    Participant
    Posts: 4,630
    Joined: 27/09/2010
    #82940
    Re: Hello

    Hi guys and girls.

    I want to start by talking to Paul. Sir I apologise that I didn’t give your post the appropriate amount of time it deserved. It was a little rushed. I acted just like one of the people that I was talking about. I assumed that you had fsh. More than likely you don’t. There are many types of md and they vary in the way they affect people as you know. You may have a very different experience to any of us. This is also not about us as one disability, one experience. It is about the individual, at least that’s what my posts are about. that is why I try to answer every single reply and address every point.

    but the fact that I am able to get around on my (weakening) legs makes it difficult to completely understand how hard things can be for you makes me like a fraud at times.

    You are grouping me with the other posters as people that have a shared experience. I don’t feel I belong in said group.
    I Sir like yourself and Ranald, to some extent feel like a fraud myself. I have heard stories of twisted rib cages, dieticians, pain, things I don’t have to deal with. I am in a bad way with md, however I live I think a very different lifestyle to other individuals on this forum. I have explained how I live in previous posts and most would probably concur that it’s a little different to the way they live. I perhaps am the middle ground between the walking wounded (is that what your calling it ?.) and………… What ?. I am one of the I believe we are being called wheelies. I know what it’s like to be a “W.W”. i was one of you guys for years. (You guys). I used my blue badge all the time, Why I needed to open my door all the way to get out of my car. Someone in a wheelchair would understand that, I would imagine. The general public, who gives a donkeys ding dong what they think ?. Fek em !. They are nice enough to me, I can’t complain. I seem to find nice helpful people wherever I go. I don’t wanna Fek em. They see the chair and couldn’t be more helpful.

    The chair being the operative word. You use crutches right Ranald ?. How about you Paul ?. I never did, I had something to break my fall if I went down, my head mostly. (Jesse walks out of the shed. “Today I ave been mostly falling on my ‘ead”). Do the crutches not give it away to anyone that maybe you can’t use stairs, blocking paths for a reason and the like. Wait…. of course they feking cant. WHY ?. Because people are stupid. I have displayed some of those same stupid characteristics by assuming Paul had fsh without giving it a second thought. My Uncle Les has ms, he has been accused for as long as I can remember him of faking it. Even by close relatives. If he is faking he does a great job. I know what it’s like to be a Wheelie. However I don’t know the pain and suffering others go through. In my honest opinion, it is so much harder being W.W. Being in a wheelchair, (sorry mate, don’t do labels) is not great either. There may be others that feel it is harder to be in a chair.

    I have emphasised the fact that people have been grouped and labelled, even my mistake with Paul. It is easy to see how anyone including ourselves can fall in to the same traps as the general public. This brings me to the main point.

    Wheelies vs Walking wounded. (Sounds like a Zombie cartoon)

    I see people with crutches, I don’t know what’s wrong, I don’t ask. I am polite and understanding towards that person.
    I would assume if you saw someone in a chair that needed help, and you could, you would. Sounds like we are all on the same side here. There is a divide in the way WW and wheelies view the world, but in the end we all understand each other. Do we have labels ?. Whatever you call it, there are groups of people with similar conditions and experiences, that group has a name, whatever it may be. Here we share in each others experiences, that makes us part of one group. We know there are no frauds, just different condition’s and levels. It will always be us and them. How can the government divide and conquer that ?.

    I fight the good fight if its the fight I’m fighting. My Grandad was a Scot, my Dad’s a Scot, My mum is English, I have Scots blood in my veins, I just like to fight. I know the Scots martial art of Fek you !. Head butting people and kicking them while they are on the ground. I have no idea what a Cif board is. Sounds like a forum for a household cleaning product. This is the most involved I am with other disabled people, politics, and posting on forums. I am not much of a disabled man in that sense. What is it about ?.

    Fox, Sir, I hadn’t forgot you. Thank you for the kind words.
    I’m glad you can enjoy my poetry. I am happy to put the time into these posts if it is helping people.

    it is bringing some of our members back to life.

    (Zombies !).

    If my words are giving people a boost, then that is cool, maybe not as cool as the Fonz, but cool. Thanks to everyone for reading and posting, I wish you all the best, I will do my best to reply to everyone.

    Have a Perfect Day

    Karl 8-)

    Dovito28 Dovito28
    Participant
    Posts: 171
    Joined: 17/11/2011
    #82941
    Re: Hello

    Ranald, Paul,
    Here is a short film and a music video I made a college project, It was in my last year of walking. It might give you some idea of what mobility I had. Thought you might find it interesting.

    Flying Fist of Jimbo
    It’s a martial arts spoof,

    http://youtu.be/d9Ioe6HPR04

    D-X music video

    Dovito28 Dovito28
    Participant
    Posts: 171
    Joined: 17/11/2011
    #82952
    Re: Hello

    @dovito28 wrote:

    Kod, Oh my kod. If you had the same passion for dancing as I had for wrestling, then yes you would surely understand the pain and heartache of losing something so precious. A part of you that captures everything you are. Gives you confidence, a purpose. Yes kod you must see through the same shattered panes in which I have seen my world. Even now you know that was you, that’s what made you feel free. No Animal in a cage as I have seen in a comment.

    That is the hardest part. Accepting that you are no longer free, like your nan’s budgie, sat staring out the window at the other birds flying by. Locked in a dungeon perhaps, with no chance of a prince or princess to rescue you. It’s dark, lonely and at times scary and cold. The hardest part is breaking down the dungeon door. It will always call you back, the entity inside. It drags you kicking, screaming, wishing it would stop. It doesn’t. It continues to pull, if you stop fighting you will be locked inside till there’s nothing left. An empty room, where only the entity roams.

    So don’t stop fighting, get out lock the door, jump on a dragon and fly away. That sounds easy but first you have to find a dragon. Until that time, you crawl up mountains and hills, through the mud and dirt. But you leave that dungeon far behind. Don’t ever let the door open, if it does slam it shut and say FEK you !.

    Yes, I think I had the same amount of passion for dance, still do – it’s not quite the same watching it. Though I know now it was never a realistic dream, I did hope. I started showing symptoms when I was 2. I’m 23 now. Found my dragon, just trying to get on it (they dont have ramps ;) ).

    @dovito28 wrote:

    So maybe that strengthens the suggestion that disabled people might be good friends based on a shared disability. What is this forum about ?. How many of you consider other people here friends based on the time you have got to now each other over the years ?. I am not saying your wrong kod, not at all.

    Think you misunderstood my meaning – it’s one thing to meet because of a shared disability but that wont translate into a friendship (in my view). It’s more fundamental than that and it then becomes a case of you’re friends with someone who happens to have a disability and not because they have a disability. Make sense?

    What about second breakfast?

    IG: https://www.instagram.com/kissofdarkness1/

    kissofdarkness
    Participant
    Posts: 266
    Joined: 01/10/2010
    #82953
    Re: Hello

    Hi Kod, you do make sense. I find this very complicated to give my thoughts on. I keep coming back to it being more or less the same thing. But with that said, I do see the differences. I guess it’s a little bit of swings and round about’s with that one for me. I don’t feel that a disability is a bad basis for a friendship, far from it. Who can understand you better than someone who is going through or has been through similar experiences to yourself. I have learned a lot from my short time on the forum. You are a strong unit. The disability is what brings everyone to the forum. the disability helps us understand each other, as I discovered with so many of these posts. One in particular was yours, the comparison of the wrestling and dancing. The disability is part of it, but as you have said, it’s not what makes you all friends. It is your personality, your id, it’s the individual that creates that bond, that friendship. You do make sense.

    I hope you can tame that dragon and ride it all the way to a fairy tale ending.

    Have a Perfect Day

    Karl

    Dovito28 Dovito28
    Participant
    Posts: 171
    Joined: 17/11/2011
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