I was good today, feeling better from Saturday. Lee’s away with work so it’s fallen on me to take Molly (autistic daughter) to the gym. She’s recently joined and is full of excitement. As for me I’m feeling reserved …then we see a guy ive not seen for years, one who I knew as a younger pre wheelchair person… I’m sorry but please don’t stare I already feel awkward Mollys bouncing around and I’m like an older version of what I was, now with a wheelchair and assistance dog …he has the expression of " What on earth happened to her " I must be going crazy…why am I bothered …but I am. Michelle and Frazer xx
mmm
if roles were reversed wouldnt u be wondering whats happened to him? hes human-so are you! we get so paranoid about what other people are thinking-why?! kids are brill-whats wrong with your legs? parents haul them away embarrassed but i talk with them on a level that i think is suitable. how do kids learn otherwise?
i know thats very simplified but i believe it to be true-live your life your way-to heck with anybody else!
ellie
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Probably an excellent answer, I think I was embarrassed, I always felt slightly awkward I didn’t know him and his wife well, they almost seemed a bit above me . Like very well established a bit snobby and then they moved out of area. It just took me back to that awful feeling when I first ventured out in my wheelchair and people in the village saw me disabled for the first time . My using a wheelchair was sudden , from being able to walk and run to having a very bad relapse and losing it all . I now feel adjusted to being on the chair …but every so often I’m reminded. I think you are right in some ways Ellie but I’m still human and still Occasionally see myself in the chair and inwardly shudder at what has happened . Maybe if he’d smiled and said hello it would have helped …i just felt a bit sad and wanted to hide. Please anybody tell me that they have felt the same ??? I’m not stuck up just not very thick skinned all of the time and please don’t take this wrong, but try being in a chair and having an autistic daughter that has melt downs , and I take her out on my own I’m not a coward not at all, just human. Michelle and Frazer x
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Oh Michelle, I’m still having to deal with pre-conceived ideas from people who think they know me but should know better.
My older friends have shown me why they were friends.
One bloke (also called Steve)turned to me and asked “What’s with the chair then?”
I explained, he accepted and we carried on talking about old times. No problemo. I hate the fear people show when confronted with the extraordinary and the unexpected. Molly is your daughter, you are proud of her and proud of being her mum.
The rest of the world can do one.
Just thinkof the hope and inspiration you’ve given to he good people on this forum.
Steve, woof. xx
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hiya michelle
please dont think that i dont understand-i do! i have only once i think told my story on here and thats because its so rare and i dont want to scare newbies! so briefly-my life changed drastically within 48hrs in 2012. like you i was volunteering (had to give up work 2 yrs previously), i was, (still am!) bringing up 4 kids on my own-no hubby or dog to keep me company! i had a huge attack where lots of damage was done and its been permanent. loss of both limbs on right side (i am naturally right handed!), loss of eyesight in left eye, double incontinence, speech and swallowing difficulties (not the best way to lose 4/5 stone).
i have been diagnosed 12 years and when i was more able i met lots of folk on here in person-which was fantastic! nowadays life is a bit tougher for me! some of these wonderful folk are no longer with us but i treasure the times we spent together. i learned so much from them. my answers on here tend to be short simply because i am using one finger on my left hand and the screen is never in focus! so why the heck do i bother?! help and sup[port works both ways-i know that very well!
so my answers are often based on just not my experience but also those amazing friends-who were of similar nature but thats how we connected!
so i am not a shallow ****** in fact far from it! i do understand perhaps alot more than u realise but thats because i havent told u!
in a previous life i was RMN for 11 years and a barista for 3-both jobs i loved and they are not so different-dealing with the public! there is no comparison between giving and receiving care btw-totally different ball game.
lets just hope that no newbies have stumbled upon this! if u have-please see it as positive-i am still living life to ‘my new’ full!
ellie
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I’m sorry Ellie I feel as if I’ve made you sad . I think your message was good , I’ve had a few difficult days and have let things get to me. It’s good to hear other people’s experiences I think you have done so well it’s not easy is it . We have such a lot thrown at us and you have had harder time than myself. Take care Michelle and Frazer xx Michelle and Frazer xx
Thanks Steve, I’ve not been myself recently, your kind words mean a lot. Michelle and Frazer xx
hiya you have definitely not made me sad-i am happy! harder time than you?! i disagree! if someone has a sore finger-that pain tends to overwhelm all else. it may seem trivial to some but its not a competition! i enjoy reading of others’ experiences-especially about how do u decide when to use a wheelchair cos that was never an option for me! whereas urine and positive attitude i feel able to throw my tuppence worth in! take care, ellie
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Gosh, I feel I’m in the company of giants.
Best wishes to you beautiful people.
Steve xx
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I get embarrassed Michelle if I see someone I haven’t seen since I was a healthy person but not in the least embarrassed with people I don’t know!
This disease does some weird things to us, doesn’t it?
Love Nina x
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Greetings folks. Don’t worry what other people think. I remember seeing dozens of people I knew in the super market. I was alone & severely medicated. Getting food in your stomach when you have lost so much, is more important. That over active immune system comes first. If our own bodies don’t know what’s going on. Others will never understand. The sarcastic brain dead of this world are irrelevant. People learn when they see you often enough. Those who pass judgement & gossip can kiss where the sun doesn’t shine. Still to this day, some people make snide comments about how we were in the past & how our health has deteriorated. Usually to raise their own status & vent off their mental problems. There’s lot’s of self obsessed idiots, but some are understanding. I struggle to keep up with folks & just say go ahead, I’ll catch up. Like the Tortoise & the Hare. Winners are those who get there & do things. People don’t judge books by the cover do they? If they do, they need to understand & learn. MS is a lot to take in.
Best regards Terry.
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You’re an A list celebrity Michelle. Don’t beat yourself up & assume. You’ve genuinely got problems. Nothing to feel ashamed of. Putting people on a pedistol isn’t good. They start to think they are better. Warts & all that Jazz. Imagine hanging out with the Queen at the skate park when you see people. People are all human. The most important person isn’t here any more & it could of been anyone. We have become creatures of circumstance. Take care & have a great weekend. Best regards Terry
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You are so right ellie. Some kids learn quick. It’s the adults that cause the problems. Some folks reach a ripe old age & they’re still wet behind the ears. Blame the so called affluent society. The public mixed schools are where it’s at. I’m forever telling folks to get lost. Most have their one sided view of the world. Take care out there. Terry
Thank you so much Terry , you say such wise words , I am now going to keep that visual image …the Queen is coming with me to the skate park this afternoon. No actually I’ve promised Molly the Gym again , she’s really happy today the only thing is she always approached the good looking guys and being autistic she’s far too familiar with them all, it makes her so vulnerable …im constantly worried about what she may say, although Frodsham is a lovely village and most people are so kind. Michelle and Frazer xx
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Brilliant message Terry, I have to learn to not let it worry me. I think having the family members with special needs and being in a chair with Frazer walking by my side or Molly aged 16 carrying an armful of dolls kind of gets you noticed …sometimes I just want to fade into the background. Thanks everyone for such good advice . Michelle and Frazer xx
Do you find when you meet someone you haven’t seem in a while they will say something stupid or you can read t in their eyes. My hubby said i am hard now but if you say something stupid to me i will back away from your company until i feel able to deal with you. I recently had my sister play up, she now is constantly texting me to see if i am ok but i had months of her stupidity and bad manners and it is me time so i will get back in touch when i am fit. Oh MS can work in our favour also
trish
Thanks Nina , it’s good reading these messages and realising I’m not on my own… I think being weird is cool …i tell my children that anyway. Michelle and Frazer
Like the jogger who pushed the women with the baby in front of the bus. There’s some twisted people out there. Driven to insanity by all the political bull crap. Who knows what tips people over the edge. It could be a group of wealthy folk, sitting in their ivory tower. Warping opinions & verdicts to thin the populous out. Someone I thought I knew, says it’s the aliens.
Look after yourselves & become selfish. Rise above the crap. It stinks!
The world seems motivated by ratings & being remembered for good stuff. All we can do, is the best for ourselves. There’s way too many so called experts & number ones. All clambering to be recognised. Usually for financial gain.
Take a deep breath & carry on. If it doesn’t kill you, it makes you stronger.
Keep it real & simple. So they understand.
Terry