Falling is really scary. I'm constantly bruised from losing my balance but every so often I have a pretty big fall. Like today, I was trying to stand up from sitting on the grass and fell back and almost broke my arm- I thought it was broken for a moment. I shook it off and told my friends I was fine, but it really scares me when I fall like that and it makes me think a lot about how much worse that almost could have been.
Friends don't really get it, no matter how hard they try, because they don't have ataxia. I'm super grateful for all their help and support but I sometimes feel so jealous that they don't know how it feels being scared of just simple things. Just standing up from a picnic blanket isn't scary to them because it's much more unlikely that they'll fall. But I dread sitting down in certain places because I know it will be a massive struggle to get up.
I know my ataxia is milder than many other people so it might sound like I'm being dramatic, but I hoped that maybe people here would understand the fear? After falls like I had earlier I feel very scared of hurting myself again.
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cherry311014
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It’s true, and it’s sometimes easier but to do the normal things like sitting in a different place ir turning around whilst walking etc.. conquering the fear would be so much easier if the consequences of falling weren’t traumatic. Feeling jealous of your friends not comprehending, is ok methinks.
I totally get this. I'm 81 and use wheelchair and scooter but.. I remember well your situation. We all laughed but it was terrifying. Don't let self consciousness stop you being careful but laugh too. It's long slow journey, enjoy x
Fear is real because the consequences of a fall can be devastating. Only you will fully know and appreciate your Ataxia. It’s incredibly frustrating because you simply can’t ’move on’, while those around you will. Being offered endless well meaning platitudes is no real help either. Good luck.
Granted, I am a lot older than yourself, BUT have always had a fear of falling. I do take very very good care not to, to the extremes of hardly going out, just incase. I am very aware of my surroundings in my own dwelling (a bungalow) and there are the odd wee hand marks around that show where I hold onto things. As to the feeling jealous, am old enough now to not give a **** what people think (am now 64)
Oh my goodness Beth's fallen every day of the weekend and all I can offer is empathy for her and you. I know I can't ever know what it's like to be in your bodies but know those that love you, see your struggle. Beth's 14 year old sister was with her during one fall and an hour later, Beth had bounced back albeit bruised, but her sister was crying. She was crying mostly with frustration that there's nothing we can do to stop it happening. Last night I found myself asking Beth just to sit and not move, but that's not fair, for as long as she has the guts to feel the fear and walk anyway the least we can do is support her bravery and be there when she falls. Beth has an associated learning disability so can't voice this herself, but I hope sharing that friends and family do care and see the struggle helps you feel seen and heard. Maybe you could share your fear with a friend or family member who sees and hears you. Your fear is valid and deserves validation and I hope you find that. Take care x
oh Cherry I totally get where you're coming from - I've had falls when my daughters and other family have been around and my first thought has been 'do not cry'' but they've always been able to help me get up, make sure I'm ok and then have a giggle about my wobbly legs. When you're out with your friends can you say to them 'OK I can do this but I might need some help'. See how that goes. xx
Hi when I am on the floor I get on all fours then walk my hands towards my legs then push myself up. I used to fall over if walked to the fridge and then turn around in a circle my brain cannot do circles anymore. If someone is walking towards me I stand still instead of trying to walk past them else I know I will walk into them. If a object is on the floor I know I will walk into it so I move the object first then carry on walking. You have to think of doing things different to make your life easier I have had ataxia for four years yes it's hard to try and explain how ataxia makes you feel to others
I used to get up off the floor by going onto my knees first & then making a tent like shape, with my legs straight & using my hands in front of me on the floor. I then walked back with my hands to a standing position - I hope this makes sense (I know what I mean but it's difficult to explain).
Perhaps talk to your friends about your fears & they'll help you more?
It's all about safety.
Other ppl just take things for granted & don't realise how difficult simple things are to us.
Oh & another thing, try & do a bit of exercise safely of course - that should help with keeping you supple.
Don't let it get you down. Adapt the way you do things if you have to, to make it safer for yourself. Don't care what ppl think! 🤗😉
Once you realise there will be severe difficulty in getting back up….it puts falls into a different prospective…they become more than an embarrassment..and need to be avoided at all costs.
I’ve had to be lifted by paramedics because I’d knocked myself out..most recently I fell and it took over a hour before shock wore off, and my husband was able to use a sofa seat cushion as leverage to get me back up.
Learn to accept the falling because it’s going to happen. Learn to ask and receive help. There is a YouTube channel for MS that does exercises to help retrain your brain to find new neural pathways to accomplish the same tasks. Ataxia movement is similar to people who struggle with MS. Your body and brain have the ability to find new pathways to accomplish tasks. I’ve been doing these exercises for 3 years and I can say I’ve been able to prevent more falls than I have fallen.
Don’t worry about being embarrassed if you fall. It’s not going to be graceful and it’s probably going to hurt. Everyone falls. We just fall more.
Hi I'm 55 and have had ataxia since 2004, I had to give up work 4 years ago. I fully get what you mean by friends/relatives trying but not fully understanding. I 100% agree about being scared of falling, I've broken my ankle twice and my elbow. One thing you must try and do is exercise, particularly core and balance, I use a balance mat and in the last 3 years or so I've not had any serious falls. A few minor, usually when I'm trying to carry stuff but that's just me being stupid. I think over the years I've learnt how to fall "gracefully". Just be careful and don't take liberties with yourself.
Trying to keep balance with ataxia has been very demanding. I use a cane for balance and will use a walking frame if needed. Do not try and cope without using simple aids which can easily prevent a fall and injury. Your safety and comfort is most important. It can be a real challenge to get up after a slip or fall.
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