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Hi, my name is Bar!

Bar Community member Posts: 5 Listener

Hi all, and I would like to say, I truly hope that your day, today, what ever your body or mind is doing, it's not so bad :).

I've joined as since 2008 I have struggled with acceptance and since 2019 when other disabilities started it has become worse. I am a fighter kind:) and I don't like to moan or talk to people about my body or my mind and most people do not understand the depths of damage I live with because I joke about things, hide things and I fine able bodied people are uncomfortable with truth so I keep myself to myself and just laugh things off publicly (it helps that I was born in Liverpool I suppose ;)).

I live a lone with a 12 year old daughter, a huge dog and I'm 55. I can't drive anymore and I live in Wales so the infrastructure is diabolical. I live on crutches but in my house I have designed it for me wobbling about freely :).

I used to be a Physique Builder, a Dancer, a Gymnast, a walker of mountains, a motorbike rider, a driver and this loss, it gargantuan.

I have a social façade if I actually do go anywhere; I refuse help and also beg for help sometimes, just for small things when I am falling to pieces, please could someone just hoover, please could someone just take me to the beach but there is no one because people are busy living lives. I am independent and lonely, bored (I'm doing a Masters on line at the moment but it's just more isolation). I see people rarely and get by with pain on Oxycodone (which I limit to taking only when I have to really DO something, GO somewhere) and white wine ;). In ways I do more physically than many abled bodied people and I know how to push through boundaries or pain and fatigue, how to hold myself, sit and not cause further damage…… I'm an up beat person by nature, dark humour, honest, blunt but also empathetic (gawd I read like I am filling in a dating form lol lol lol), anyway I still get to talk to me Ma on the phone whom is 81 and severely disabled (I grew up with such from the age of 14 so I understand disability well) and alone looking after my father whom is effectively crippled and also about the age of 5 mentally, she too has no support or help, no company, no friends or family, nothing save that we talk several times a week on the telephone.

Anyway, I will NOT pay someone £17 an hour or more to come and do something for me that would take 20 mins! So I fight, crawl, damage myself further half the time and laugh it off at how I am a survivor. But the truth is I am alone, I am scared, I don't know what will be 10 years from now, even 2 years lol :).

So I am here, not to moan but to just not be alone with fighting with myself. I still dispute what is wrong, why I feel the way I do, it's ridiculous……. it's all there on paper, in medical records, etc and I still find myself asking, 'why do I feel so poo today!'. Well I know the answer but still ask myself all day and all night, what's wrong! Because I don't know how to accept it.

If it helps I have a degenerative spine disease, also Idiopathic Peripheral Neuropathy which has cost me the use of one leg and irritates the other one and also affects my hands and arms…… I have Fibromyalgia and other lovely things like IBS of the loose variety so oops, be sure to wear tight trousers and long boots if actually going anywhere :), also Raynaud's so I have to watch I don't loose all feelings in my hands…… mentally I have CPTSD (all that is private), I'm autistic and have ADHD…………. saving that, I'm healthy, fine and fit :).

I'm an unpublished writer, also a poet ( I do try to attend literary events but I can't get anywhere save one event once a fortnight that is just down the road, I'm also a singer, song writer but can't find anyone to work with as I can't play guitar properly anymore (I guess no one wants to work with a middle aged, disabled woman :)). I'm an avid reader, lover of film and art and adore my garden (which entails the crawling and half killing myself).

Erm, I guess, that's about it really…… Ooooooo I used to travel a lot and have lived in Austria, New Zealand and Colorado. Right, that really is it. I am here to listen and support and also just want help to accept myself and meet with other human creatures who know what I am talking about.

Warmest Wishes to all

Bar :)


  • 66Mustang
    66Mustang Community member Posts: 14,559 Disability Gamechanger


    You sound like an interesting person!! Which has been your favourite country of all to travel to?

    I'm interested in your dark humour as it's something I use to cope but often gets me into trouble

    People who see upsetting things at work like nurses or soldiers use it to cope so I wonder if it's similar for people like you and me who have to cope with every day life??

  • Albus_Scope
    Albus_Scope Posts: 5,233 Scope online community team

    Heya @Bar and it's a warm welcome from me too, it's great to have another disabled musician here. :)

    I can empathise with the acceptance part, it really does feel like if you do accept things, that's it, that's the end of it all. But I found coming to terms with my disabilities has helped me so much mentally. It doesn't happen overnight, but it happens with time if you're gentle with yourself. And we're all here to talk things through and support you if you want to talk about things. 😊

    Albus (he/him)

    Online Community Coordinator @ Scope

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  • Bar
    Bar Community member Posts: 5 Listener

    Thankyou to both whom have commented, Mustang, yes you are right……. Dark humour is a coping mechanism but also genuinely, I do find things funny unless serious. My daughter was recently trapped in school due to a lass running around with a knife, stabbed two kids and a teacher…. THIS I don't find funny…… I was on the phone for hours with my daughter trapped in a room, with her few buddies and their teacher…. hours and hours and hours…….. Her school is too far away for me to get there (That's Wales for ya)….. but then I laugh over something else: a boy died at her school (her friend) last week, a heart problem…. not funny…. BUT the school put on a big show and they released pink balloons and also all signed a foot ball for the cortege going past and then I started laughing and said, 'Pink is for cancer and of the football, did you all kick it at his coffin or something'! My daughter fell over laughing…….. she is used to me.

    Albus, it is not my nature to be gentle with myself, I am simply not good at it. Every day I drag myself up staring around thinking, oh gawd it's another day………. I love life and nature, I love humour, so so so many things but I feel like a mind with a corpse dragging behind it… and yet, I still do stupid things with this corpse of mine, find a way to climb over a wall if their is some ancient site I want to see; I end up black and blue, bleeding, but I have done it :) and then, I am destroyed for weeks lol. I don't look after myself, I know I don't because I don't want my disability to become a career. Even today, my leg is bleeding….. did a bit of gardening, something has caught the useless leg, I don't know what because much of it I can't feel at all and the rest of it electrocutes me all day to screaming point often…… I just try to ignore it all and I KNOW I am stupid but I simply can not accept, I don't know how to….. I'm afraid it would break me!

    :) xx

  • Bar
    Bar Community member Posts: 5 Listener

    Mustang, my favourite place was Croatia :)…………. it felt like home.

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