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 :)
