Hi all,---- With Ataxia, I really do not know yet what kind I have got, I just got told from my Neurologist that I have ataxia, and should be in a wheelchair, I DO HAVE A WHEELCHAIR, but only a small one that someone has to push,--- I am suffering from depression just now, I call it depression . I am scared of being in company, just want to be left alone, I hate friends popping into see me, I will not go out , every time my daughter askes me to come out with her, going for a meal with friends, --I just seem to Freeze, can't think of another word, I wont go, just leave me alone !!! Hope I do not sound to awful, I used to be so friendly and outgoing, but this past year, I don't even want to go out into the Garden to sit, has anyone else suffered this ? Yesterday was a bad day, I could not balance or move, but today, I feel fine, and moving okay !!
Not wanting to go out --or have company, what is... - Ataxia UK
Not wanting to go out --or have company, what is wrong??
🙂 Hi lottiejemma, it is awful when you find yourself feeling this way, and the more time you spend on your own, the harder it’ll be to get back into the swing of things, I can say this from experience. Neurologists often recommend a mild antidepressant, you could try one and see if it helps 🙂 Personally, I think pushing people away is a fairly normal reaction. It can be very difficult coming to terms with the challenges of ataxia, because it can be confusing and disorientating, never mind disabling. Try and summon up the courage (and enthusiasm😉) to suggest an outing to your daughter, even if you feel you need to use your wheelchair. Have you considered contacting your nearest ataxia support group, just talking to someone else coping with similar challenges can make a huge difference. You can find a list of support groups on ataxia.org.uk 🙂 xB
My husband too feels like this at times but I mean this only with love and kindness . I let him behave like that for one day then I put my foot down , remind him of all the positives in our lives and tell him how much I love him . Thank goodness at the moment it works 😜
Hi lottiejemma. You are not alone. I think, where others used to be a pleasant distraction, they have now become only a distraction and interfere with our concentration. I find I need to concentrate all the time and I’m most comfortable in my own little world where I feel less stress and do not need to talk, which I find hard. I used to be very social and outgoing. Have a chat with your daughter and explain how you feel. Keep smiling and stay positive.
Thanks a Million ConfusedAtaxian , you have just explained how I feel , and your Understanding has come through the page , and sat down beside me. so good to know someone cares and understands , and Knows my feelings Love from LottieJemma
Hi
I know exactly what you mean. I find social situations very stressful. At times I find it hard to just go into a full room, even when there's only family there. But I feel that this is ataxia controlling me, rather than me controlling my ataxia, so on the days I feel better (and it does vary day by day) I do try and make the effort (and it is an effort) to go out.
Thanks everyone for the encouragement and understanding ,love and Friendship --- Lets all keep going , and never give in
Hello, wow, this topic helped me understand what had happened to me a few days ago. I've invited some close friends just to meet and chat and after their visit, I felt awful. I was feeling very depressed, I was crying and just thinking that my whole life is a failure. I know that everybody has problems but I was just jealous that they have the possibility to make plans and that they can develop in their careers and I am just thinking how long I will be able to walk, to draw (I am a graphic designer)... I struggle because I have an anxiety disorder and after I've been diagnosed it came back. So this is what I eventually recommend you - see a psychologist because it is normal that we have psychological issues, that we are depressed.
Maybe it will be OK for you to meet with people individually, only with one person at a time? It's important to talk about your feelings.
I'm sending you lots of love :*
Thank you Ada, it feels so good that people like you and others on this site understand, encourage each other , as we have " Friends" !!! well I have, who do not understand and criticise, and told to stop exaggerating , Looking for sympathy, well I am NOT, Sympathy does not heal -- understanding and caring heals our Fears
Hi I have it to, the depression are felling comes from all the ups and downs of ataxia. I got a Vagus Nerve stimulator, it helps 80% but feels like a 100%. The best thing is to go for what helps, and live the way you can.
Hi lottiejemma, I have this too. I find crowds a nightmare. It is as if too many people are overpowering my brain and then it is on lockdown so to speak. Very overwhelming and too much going on. I spend most of my time at home, but I do go out sometimes to the shops when I feel ok. If I don’t feel ok I stay home. When I am going out I say to myself if I do not feel ok, I know I can go home, this works for me and helps me with going out. At one point loud noises would bother me so much, but now I am a bit better with that. I do not like to be in a group of people either, I prefer one to one. On a nice day I like to go out on my electric scooter around quiet areas for fresh air or sit in the garden. I like doing my hobbies, painting, jigsaws, it takes my mind off my health for a while. I have also rescued a cat, she is gentle and loving, she makes me feel better too. Sometimes I think with illness you just need time to yourself at times and that is ok. All the best
Suzie
Yup know the feeling - just don't want to do anything
Hi Lottiejemma.
I have Friedreicks Ataxia, walk with a wide gait and fall over often indoors, also have to hold onto furniture to get around, my local social services got my local council to install a lift in my house because I couldnt get up the stairs to bathroom.
When I first knew about Ataxia, I felt embarrassed and reluctant to go out, but now my family understand about Ataxia, after I explained as best I could..... I told them to seach Google to read about Ataxia.
I have a motability car, supplied with payments from the government but obviously I cant drive it, so my wife drives for me. I use an electric wheelchair which gives me the encouragement to go out, my car has a hoist fitted in the boot(trunk) to lift wheelchair in and out of the car boot.
Lottiejemma, if you can afford an electric scooter or an electric wheelchair, I would recommend that you get one, it will give you so much more encouragement and freedom to go out, especially with your daughter, and to enjoy the fresh air..... it works for me my lovely, I truly hope it will work for you, I am 75 and live in the Uk. 😀
Hello VETERAN250, How good to read your post again, and all the friends on this post, I honestly thought I was the only person, with those symptoms, and having to hold onto furniture to get around the house, I would tell myself --- relax, stop this nonsense, just balance, I could not understand until my Neurologist explained that I have Ataxia, I wish I could afford an Electric Wheelchair, maybe someday, who knows. I do have an old wheelchair, but my daughter has to push it. I also live in the UK--- THAT IS IN BONNIE SCOTLAND, and I shall be 77 years old on the 7th April, Cheers GOD Bless and keep going, counting our blessings one by one
I am alone and depressed all the time. I dont want to go out, be with friends or family. I would like to die.....if the symptoms get worse I plan on killing myself. I dont know how some of u keep ur spirit and desire to live. I dont really want to die but I see no other way.
Oh Carolss, I am sorry you feel like that, but I and many more of your friends on Health unlocked understand, we are all there from time to time, But, Remember, Life is a gift, and Ataxia is a battle, it is like we are in a war, so Lets be on the winning side, we are all here for one another, so keep fighting that depression, you are LOVED, and like me, we stay indoors alone, yet Thanks to sites like this, We are not alone, but we can be comfortable knowing we are together chatting, and laugh at our Ataxia , it will knock us down, But Up we get again , and battle on . GOD Bless you with Peace of mind, and remember HE cares, and so do we. lots of love and Take care one day at a time x
Dear Carolss.
I guess we in this community have felt as you do at some time or other, but as lottiejemma says, life is a gift.
Human nature is one of survival, As well as Ataxia I have many other medical problems too numerous or personal to list here, some life threatening...... but I have been fighting for many years to survive, so I put my medical problems to the back of my mind and forget about them..... I am a British Military Veteran, disabled, use an electric wheelchair and still go on parade with fellow Military Veterans on particular days of rememberance, and I’m 75 years old.
Please try to enjoy life, come onto this community and chat with fellow Ataxians, tell jokes, post poetry, upload music, have a laugh..... if your home alone, dont get bored watching tv, put on your favourite music, turn up the volume and play it loud, and sing along with it.
We are all here to support and encourage you...... try to enjoy the rest of the day.
Don 😀🌞👍🌹
Yup - I know the feeling - more so - I am a hindrance to my House - my wife - my daughter - is it worth allowing you to struggle and fight the war - not really - i am feeling the same as You - and I am sure others - it is really tough
Hi lottiejemma, I have been like this for a few years it started before my diagnosis . I get really irritable , want to do something but don't know what. I really have to force myself to go out, and being round people is very hard. I have just looked this up and it seems to be a symptom of cerebellar damage. I do some crafting and try to take each day as it comes, have a word with your ataxia nurse see what they can come up with. Here is the link which might explain why a lot of us feel this way.hopkinsmedicine.org/neurolo...
kate x
There nothing wrong with you, I would do the same. Sometimes the body is having a energy shut down, or it would be an anxiety holding you back. Everything your experiencing is part of Ataxia. Don't be affraid, look at all around you who have it to that can relate to you.
Not what you're looking for?
You may also like...
info for understanding For Me Jemma 42
Wheelchair or not, that is the question.
To test or not
unknown ataxia
new to ataxia 
Powered wheelchair-different joysticks and which powered chairs do you have?
