For my whole life I’ve been “The life of the party”, very sociable and always ready to go out and do something! I was a busy mother of three, ran a custom home building company, etc. Now it takes a real need for me to leave my apartment. My husband, God bless him” tries to get me out an re-engaged in life but it’s almost always no. I simply prefer to be home. Also, I get almost panicky if I’m in a crowded place with a lot of people talking...and I can’t understand what anyone is saying to me.
Anyone else have this going on?
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Mariweena
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You are not alone. Since my ataxia onset 3 years ago, I too, have great difficulty being in public or around more than a few people. When I do find myself in these situations I just try to concentrate on my body movements and make sure I don't trip, fall down, or injure someone else. It's mostly unpleasant but there are a few times I enjoy going out and being around others as long as I am with at least one person who understands my difficulties.
Agree with cubsfan, friend is very much like this. She says if we go for a meal, the location of table is very important not just for access but how good it is at closing down background noise as this is really hard for her to filter out. Also as she worries about clumsiness around eating she only likes to eat out with people from amongst a very small group of close friends and in small numbers. If we go out clothes shopping (only occasionally) it’s at the crack of dawn using wheelchair to avoid being bumped into. She loves getting home! Everything there is organised as she needs it and having visitors is something she still enjoys. She agrees with you about the panicky feeling in crowded places. Trying to understand what people are saying, not being able to process it all fast enough then trying to form an answer and get the right words quickly enough is an exhausting , frustrating and often very miserable experience for her. She has the patience of a saint but it’s so hard at times. Best wishes.
Hi I have the same issues due to my condition I feel very vulnerable when I am out on my own especially if I am upright . I am much better when I am on my mobility scooter and even more so when I have my little dog with me. I am 44 years old and am reliant on others to make me get out.....i don't like it at all.
I sympathize with everyone and get exactly the same thing. I think it's a little bit of fear for oneself but more so a fear of hurting others. I've certainly gone through patches of being a recluse. It takes real efforts to turn things around. CBT therapy is good for this. Best of luck
Hi Mariweena, I don’t like crowds either, I feel closed in and lots of movement makes me feel more off balance, not sure why. Sometimes I just leave shops if they are over crowded if I am feeling panicky. I have aspergers traits , this is what my neuropsychologist told me not so long ago. At one point I never left my home for three years, but now I just say to myself when I am out and about, I can go home when I need to, if I do not feel ok. I enjoy going out on my scooter because I am moving along and not in one place. I just feel like my mind is overcrowded in crowds, too much going on to feel ok. I do understand your problems and it is not easy.
I totally agree! When there are more than 2 or 3 talking they all sound like Charlie Browns teacher....wah wahaes wahwajwah wahhhhhj 🙄. I end up sitting there nodding and laughing when others laugh. And if we’re (us ataxians) around people who don’t know us we can appear snobbish, antisocial or even dull. It sucks.
I recognise these problems. I have spent a lot of time in a rehabilitation program to help me get the best out of me after the diagnosis. There I was told that because of the condition my ability to proces information has changed. They compared it to a funnel. The opening is wide but going down it keeps getting smaller. My abitily to take in information is still wide but going down, processing the information, it gets harder. Not too much at the same time or otherwise it wil clog up and overflow. This leads to feelings like fear, panic, frustration, shame, sadness or just plain shut down. The more emotions, the worse it gets because then there is even less room to sort through all of the information. So I can completely understand why alot of people say, 'I'm not doing this anymore', because it's really scary. You feel like you're not in control anymore. But with information like this I've been able to understand the situation better and it has helped me face my fears. I take things slowly, one step at a time. If it doesn't work today then I'll try again tomorrow, because I'm not letting this thing take my life away from me. It has already taken enough. I don't want to lock myself up away from everything and everyone even though it feels safer.
Information on my condition has really helped me understand myself better. We are all different, dealing with different yet very simular problems and I think it's great that we can share things and help each other understand things. We are dealing with brain damage in different sizes and shapes. Our filter may be broken but we are not!
Hi Mariweena, I too avoid going out in groups, occasionally recently we have ended up at a few impromptu bbqs with friends I used to spend a lot of time with and I have come home feeling really down and sad because they are all doing great, active jobs and hobbies and I find it hard to even stand sometimes. There have been times when I have 'come out' and asked if I can just hold onto someones arm and it has made the event much more enjoyable and easy but it is really hard and I don't always feel I can do that.
I told my GP how down I was feeling and he told me to call Talking Therapies. Its a very slow process but I am feeling much better, my therapist is now doing CBT with me. As for hearing I also just nod and laugh but my friend who is a similar age (late 50's) and has no health issues says that happens to her also!
Good luck with all this - I wish I had a magic wand for us all x
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