Hi everyone i hope having a good summer (albiet the uk is having a very wet one at the moment)
I've been on the busy side with gardening and making sure I do my wit fit daily permitting it's not so late in the evening... I've found I love the yoga, steprobics and one involving the wii fit program though I resulted in a very sore ankle the other day ouchies. For it I use my suitcase for anything involving balancing on one leg. I've never been able to stand on one leg without falling sideways hehe. And if involves any push ups i do it from the knees never my feet it sure would look odd if I had the Wii board pattern firmly ingrained into my face it'd look like i'd been sleeping on it for a pillow!
I thought i'd pop on and see whats new and sort of update on somethings I posted awhile back.
We're still awaiting mum's tribunal for DLA oh the fun it's been ongoing since December and we are now June talk about playing the waiting game had a few letters asking where we wanted to go for the hearing so we asked for Doncaster.
Mums pain management finally refered her for accupuncture taken 2 plus years for that and only because a formal letter was sent asking why she had not seen anyone in a good year and that repeated attempts of phone calls resulted in no contact. They have now contacted her GP forwarding information on treatment plan along with setting up a Link with the drs so can forward information via the internet? Only due to constant letters never being received by the surgery. This was done I think because of the complaint that due to No information being written on Dr's fom for DLA and neither Dr or Hospital would own up to the fact that it resulted in numerous problems for both sides and my Mum.
Today has been a bit of a wierd day, one of my very *drunk and unsteady ones* I've been swaying sideways and feeling like i've been drinking even when I try focus on an object I feel my body trying to maintain it's balance. Which is horrible I havn't felt that feeling in a long while I guess it means i'm tired and for no reason ho hum hopefully i'll be my usual self by tomorrow. Part of me wants to do my wii fit and other half is going noooo too unsteady today go easy. I tried explaininug to my other half I'm very unco-ordinated today with the responce of "why is your balance off" If he wasn't in Indiana and had been sat next to me I would have given the face of disbelief with showing my shakey hands usually how he remember's if sees me having shakes why do they forget even if we look ok most of the time It can rear it's ugly head when we least expect.
My question for the day is this..
How do you explain your disabilities to children?
My partner has a 10 year old son who often when i visit comment's on everything I do *wrong* could be way I hold my fork how I cut something, how i walk ugh. My partner Randy often has to walk him away quietly and give the Dad talk of quit disrepecting her disability. I have sat down with his kiddo and had a detailed chat on why and how I do things in particular ways and what has been achieved since I was diagnosed. His son has ADHD and uses it as a excuse for why he can't do something and I'm of the opinion if set mind to something you find a way even if it isn't the perfect way.
Only my partner and his son know of my Ataxia none of his immediate family know about it as havn't brought it up they know I'm deaf but only because I had to go uh I'm deaf and point to ears. We've chosen to not talk of the ataxia with his parent's as it brings a barrage of embarressing questions I've answered my whole life. I know his stepsister knows because I brought it up one new years eve party and had the well can you have babies and all sorts I was a bit at a loss haha I can have babies jeez I don't know how it will affect my walking daily living not that I have any intentions of being preggo anytime soon..
I have had my grandchildren for sleepover [5, 7 and 8 years old] so can relate to your post.
We have now moved into a retirement apartment so dont have the garden to do now. I did used to love it but now relieved that I dont have that 'pull'.
We have nice big rooms .. the second bedroom is ideal for the children and they play in there when I need a rest.
We have bushes at the back where they like to play - they have built a wigwam .. lots of rabbits, squirrels and even muntjac deer .. loads of different birds.
Like you say, the UK summer is very disappointing but we have had some sunshine today.. not hot and very windy but...
Now the children have gone, Ken is asleep on the bed bless him... such a lot of work with three children.
I havent done wii fit today - in fact I slept badly last night - whenever we have house guests, I get anxiety attacks that cause my stomach to cramp and I wake every hour through the night, Such a relief to see daylight. I shall sleep like a log tonight.
Aw patsy I've been following your little parties with a big smile.
I spent till 2am listening to the gale force winds last night which wasn't fun I tthink as I type it's finally eased up here,
seems everyones having a tired day today. Family are all in bed here and it's 9pm i'm tempted to stretch out on sofa (though i'm sure my pup will try squish me)
Only really see birds in my garden znd the odd cat..
Good luck with pedal machine hope have fun I chose not to do my wii tonight phew i'm glad I didn't
No need to apologize for you letter Emmy as it is very enjoyable! I think you've explained your disability the best you can to your partners 10 yr old. I know it gets old having to re-explain but children are like that, sometimes you have to repeat info. over and over again...ha! Be patient with him (I get the feeling you already are) and as he gets older and matures he'll be more understanding. His ADHD may be a factor in how he processes information at this time also. In terms of others (like your partner) although he sounds very supportive and understanding of your ataxia, I think it's easy to 'forget" what we deal with as they're not dealing with it. I find this to be true of my husband also, even though he's very understanding and supportive of my ataxia. I think you're doing wonderfully Emmy!!!
Thank you Marie, Loz and Rose for the replies hope today is going good for you all?
Marie thank you I wish I was here more often but always pop in randomly to see how everyones doing and read the boards, great way to check for updates and catch up!
Chuckles rose I hear you on the repeating side of things over and over somettimes makes you feel like a stuck record around kids =0). My partner is pretty good he has asked me lot's of questions over the years and tried different methods to do tthings. He even went out and brought me a special potato peeler and hand wisk for mashing potatoes as know's I struggled when I visited him the first time. It was only after seeing me spend 40 minutes to peel one potato and having to go argh can you peel i'll be here all day at this rate! I love my special disabled friendly big grip peelers for veggies.
I agree on processing things different when have ADHD but patience definately works with my partners son for sure (got leaps and bounds of that) give or take a very rare day when I don't. Chuckles Rose don't you feel like bopping them round the head when they forget randomly I never forget anything. My Other half had bad carpel tunnel on my second trip and ended up in braces for both hand (his chef work excurbated it to point he couldn't do anything) I truly felt for him as was a small part in him understanding our ataxian world as said that is my daily battle with my wrists. After that he never uttered another word about being careful or dropsy days.
Loz I was like you when I first came here to LWA had never spoken to anyone with ataxia or even met anyone with it. It's opened a whole new world and the people are fantastic here I was diagnosed at 5 so I've had it most of my life now. We all share here and vent, giggle laugh and support eachothers journies, trials and triumps Always say you know your own body and glad you found out I remember the tests and it's a nevous time for all. Sending hugss to everyone and welcome to the group Loz. I live in Yorkshire near Doncaster (tad rainy at the moment ew).
Thanks again for the replies and for reading I hope you all have a wonderful day.
Thank you Marie, Loz and Rose for the replies hope today is going good for you all?
Marie thank you I wish I was here more often but always pop in randomly to see how everyones doing and read the boards, great way to check for updates and catch up!
Chuckles rose I hear you on the repeating side of things over and over somettimes makes you feel like a stuck record around kids =0). My partner is pretty good he has asked me lot's of questions over the years and tried different methods to do tthings. He even went out and brought me a special potato peeler and hand wisk for mashing potatoes as know's I struggled when I visited him the first time. It was only after seeing me spend 40 minutes to peel one potato and having to go argh can you peel i'll be here all day at this rate! I love my special disabled friendly big grip peelers for veggies.
I agree on processing things different when have ADHD but patience definately works with my partners son for sure (got leaps and bounds of that) give or take a very rare day when I don't. Chuckles Rose don't you feel like bopping them round the head when they forget randomly I never forget anything. My Other half had bad carpel tunnel on my second trip and ended up in braces for both hand (his chef work excurbated it to point he couldn't do anything) I truly felt for him as was a small part in him understanding our ataxian world as said that is my daily battle with my wrists. After that he never uttered another word about being careful or dropsy days.
Loz I was like you when I first came here to LWA had never spoken to anyone with ataxia or even met anyone with it. It's opened a whole new world and the people are fantastic here I was diagnosed at 5 so I've had it most of my life now. We all share here and vent, giggle laugh and support eachothers journies, trials and triumps Always say you know your own body and glad you found out I remember the tests and it's a nevous time for all. Sending hugss to everyone and welcome to the group Loz. I live in Yorkshire near Doncaster (tad rainy at the moment ew).
Thanks again for the replies and for reading I hope you all have a wonderful day.