To winge or not to winge
hallo everyone! I sat down to winge. You know the sort,,,,,,I'm 77, have had ataxia for 45 years and today am so peed off etc etc. BUT read some life affirming replies to various posts. Thank you all
love and light
Focus on what you can do, and not what you can't.
I feel exactly the same - some days are good some are not. I have had CA for about 23 years.
I understand that sometimes we have to winge, and it is our right. On the other hand it does not help and gets you depressed, so get out of it as fast as possible. Focus on the good things you have and can do. I tend to pick on the good things, it helps me. From your mail I picked up the fact that you are 77 and managed 45 years of ataxia, I am 63 so see that as hopefull, if you did it so can I. It is not time to give up yet. Thank you for your mail, I just got something positive out o if. I wish you all the best and enjoy the good things you have.
Thank you for your reply. You say you are 63? Great! Are we not teenagers at heart
You are right - it is always so good and often helpful to read the positive replies on this site..
Go ahead any have a good ole winge... better out than in... I always look around me and I'm so grateful for my life, so many people worse than me. The suffering in this world is just heart breaking x
Thank you Mary Rose.
Dear Sarah Jane, You have every reason to be fed-up. Ataxia makes us so. I too, am 77 but have not had the complaint nearly as long as you.
Here is something light-hearted which has given me a smile! We all know that Ataxia is rare and many medics don't hear of it in their practices. The other day I saw the very young nurse to have my blood taken. As I wobbled into her room I said, by way of explanation, that I had Ataxia. She replied, 'If I had known that you had a taxi waiting I would have seen you sooner.' She had never heard of ataxia.....but she has now!
Incidentally she is very good at taking blood!
That is brilliant.....thank you xx
Fantastic, really made me smile..
Yes, that is funny! A taxi waiting? I go through similar misunderstandings. Having a good sense of humour is good, when one is struggling with the ups and downs of living with Ataxia. It's very important to try and be positive, even though it would be much easier to just give in and feel bad about things. Having a support group, like this, means everything to me. Because it is a rare ailment, I've only seen a couple other people with Ataxia.
Gloria thank you for the tears of laughter!
You just made my Day!!
Dear Sarah-Jane, I'm from the USA, State of Michigan and never heard the word "winge" before. Therefore, it took me a while to figure it out! I occasionally winge (cry) also, so you're not alone in this! I'm 63 years young, diagnosed 13 years ago with Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7), although I had very minor symptoms starting about 8 years before diagnosis. So I've been dealing with this a long time, although not as long as you! You are truly an inspiration to me! Ataxia is very frustrating and so challenging an occasional winge is to be expected! As other's have said, I try to concentrate on all I can still do, not what I can't! And as another said, better out then in! My best to you..., ;o)
Thank you February. This site is marvellous! I do agree that focussing on positive stuff and what you can do is really the only way forward but it doesn't always work. lol. When I posted about wingding I was very down in the dumps. My husband was suffering too but I remembered this site and posted. The truly great replies from lovely people did the trick, well loads more than that!
Love and light
I can relate ma'am. I, too, am in my 70's, and have lived with uncoordination and clumsiness all my life, because of Ataxia. In recent years, my Ataxia has become worse. I've had falls, with blunt force trauma, and concussions. It has not been easy. Ataxia affects nearly everything I do. Tremors and difficulty walking are particularly frustrating, not to mention trouble swallowing and voice problems. Having a good sense of humor, trying to remain positive, and having a great support network is extremely valuable to me, so that I don't get too down on myself and the problems that having Ataxia can bring. Seeing the neurologist and GP several times a year for a short session just isn't enough, in terms of understanding and support. Family and friends support is very helpful. Having a support group, like this healthunlocked.com group, where I can communicate with other Ataxians is extremely important to me. Nobody understands what I'm going through, on a daily basis, better, than those who are also afflicted with this debilitating ailment, Ataxia! Another thing that helps me is that I dwell on things I can do, not things that are difficult for me to do. Simple tasks, like buttoning up and zippering up are difficult for me and it is frustrating, for example. I take my time when doing tasks, being a pensioner, and it is less frustrating that way. Another thing that could help you, is that if you have a hobby or activity that you are able to participate in, for pleasure, it helps when one is having a bad day. Just listening to pleasureable music is helpful to me. Wishing you the best, and try not to let having Ataxia get the best of you, ma'am!
Ddmagee. Thank you very much. What you say is so important. I'm going to start a thread on skyping. What do you think? I would value your opinion
Thank you! Starting a thread on Skyping would be awesome! Best to you, Sarah Jane! Duane Magee
I have had all of the above for four years, and I am only 42 years old - I can't imagine what the last 45 years have been like for you! And you are worried about one justified whinge?!
You deserve a medal for putting up with it Sarah Jane and I don't think anyone would blame you for Saying a lot more than you did...
Omg, ladies and gentlemen?
You have thrived and survived, despite everything !
You all deserve medals and should be proud of yourselves.
I get to the point sometimes when I am proud to have just got out of bed and got clean and managed not to fall over and break anything for one day.
We all need to be kind and compassionate to ourselves and acknowledge all of the good things we achieve every day – even if it is only to stagger from bed to sofa!
Focusing on the positives and being grateful for the little things is a mindset that does assist in getting through every day. Like I say, how you have done this for years and years is beggars belief - so well done to you all
Sending love light and sparkles✨🌈💕☮🌹
Mermaidia. Thank for posting. It can be a bit of a bugger though! I admire you too for your This ain't gonna beat me today! attitude. I would so like to meet you all but not going to conference. Anyone interested in Skyping as well as the comment board? My name onSkype is SARAHJANEROSSONWYE
Sara Jane, I think that Skype is a great idea. However I am unlikely to be able to participate.
I have two young children and my marriage failed five years ago so I live on my own with my children. (And all that goes with a re-married gym bunny ex, who never did understand or care and still doesn't.)
I am desperately trying to earn some money, while dealing with sp Multiple Sclerosis and cerebellum ataxia. So my time is very limited,
but I will always be able to manage to throw some words out and suggestions, I am obviously learning the hard way how to cope! But If I can help one person, by connecting here, then my struggles become a little easier to accept.
Maybe we should organise a summit meeting somewhere in the centre of the country – a yearly spa day/get together so we could meet up? And the administrators? We could have the Americans on Skype?
I think you are all really brave, strong and courageous (like my dearly departed mother) and that inspires me greatly.
Everyone's input here keeps my mind active and articulate,as well as my spirit strong, so thank you all.
Love light and sparkles
Mermaidia..............love the sparkles xxx Oh yes a spa break yip yip.
love and light
Hi frazzled1, good to know you are chirpy after 45 years of Ataxia.
I hope you get through the next decade as well as you have done the past. Keep it up.
Hello Sarah-Jane, I found a shot of two little Labrador puppies in my photobox so I thought to send you the link for you to see. Here it is :
And a couple of smiles from me; ;-0)
Hi stedman. Thank you for your posts and thank you for the gorgeous photos
Love and light and I know my friend Mermaidia would send sparkles as well
Hi Sara-Jane I'm 60 next month. You've done so well coping for that length of time. Try to be more positive, mind you I do winge sometimes, can't be helped but try hard not to. 😃
Best of luck
Hi Beregena. Thank you too for your post. What you say is so true. Now. I know how to find this site. you won't be able to get rid of me! I'm going to paint/rub on some pink hair chalk and stick a notice on my scooter saying Elvis Lives.
Do you fancy doing something a little potty?
I do. I've a walker & wheelchair so maybe I'll 'pimp my ride'
in your closet and why, is it comfortable etc. Thank you for any and all comments. Ian
normally (ie. Not turning, or stepping, etc) I bought some ankle supports in the hope that they would...
such as going away on holidays, getting on and off buses etc. Christine
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