its so annoying and depressing I just wanna go bowling or go to the beach and not have to worry where the nearest seat is so I can stop every 10 MINUTES and feel like I'm buggering up the whole day for my family. I did go to the cinema which I found was OK but I can't get passed this guilt I suppose of taking the fun out of everything. I hate my fnd it makes me so angry and no one seems to understand that. I've tried cbt now im being told to loose weight because of my liver as I'm slowing down I'm getting larger and my feet keep swelling. Yet you'd think logically the amount of effort we have to put in to move and the amount that we sweat that we'd all be looking like super models. We're always told that there's always someone worse off than we are and yes there probably is but at our lowest you don't look at anyone else you look at how you feel at that time. I personally am getting to what I call a F**k it stage its probably not the right thing to do but I am going to have fun yes I will pay for it but I don't care anymore im fed up of being sat on a seat in my garden cups of tea being brought to me like im stuck in a card home well sod that no more fathers day I am taking my son bowling without the stupid slide for the ball once done ill update and let you know how it went and im going to walk to my corner shop a couple of times next week which is for my kids about a 10 minute walk so should get back to the house about an hours time but I'm going to do it anyway.
Sorry just needed to rant will update in around 2 weeks how my father's Day went.
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terry9griffins
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Have you tried using a walker? I got a snazzy red one that's really sturdy so I can sit whenever I need to. I find I can do more and go further and longer with it. Because I'm not so old, people just assume it's a shopping cart! (I use it for that too. It's really changed my life. My physio said it was a good idea if it means I can exercise more.
They have walking walkers this would allow you to stand up straight while walking and it has a seat built in just in case you do need to sit. I feel for you although I don’t have FND I have psoriatic arthritis that attacks every stinking tendon from my feet to my hips people look at me and don’t see a problem but I too can only walk or stand for so long. Awful!
Yes, it's a mysery, every day, every hour, every minute, my body reacts differently, instability, dizzyness, the only place I feel 'normal' is lying down. Who understands? Nobody, because unless you have FND it's impossible to understand what we live with.
You might surprise yourself . That's what my daughter did. She started getting her usual paralysis in the middle of teaching a class. She said ' oh lick my hairy balls' which I understand comes from some tv programme, and the paralysis retracted. This is a true story.
Well Vented I feel your pain wholeheartedly. Especially the "there is always someone worst off than you are" cliche. Nobody want to hear that junk especially while your body is no longer operating right like nearly every second of the day. I hope you enjoy your outing and do your best to block out people who dont have a clue what you are going through my fellow FNDer. Despite your situation I hope you & your children get to enjoy each other . Sending hugs & understanding your way. 🙏😉
Oh dear I totally understand 😔 it's so hard doing anything with this FND as everything I do seems to start my bladder and bowel off and then i feel so ill and like you I can't seem to walk very far without having to sit down. My daughter bought me a wonderful walking stick which turns into a chair so I can sit down where I need to which has been a blessing. I've put a link down below for you just in case you might want to get one. Enjoy yourself bowling with your son
Hi Terry, yep been there and adopted a similar attitude - `Don't get mad, get even!'
I have Motor FND and despite being told that my walking has the prospect of returning to normal with retraining (that was 13 years ago!), even though I have done the FULL NHS rehab available for FND, I still cannot guarantee any mobility from moment to moment. To the point where I actually envied paraplegic wheelchair users! Oh yes, it became so bad that I could not see a way forward - then I took that medically frowned upon step (no pun intended) of `giving up' walking normally and letting nature take its course, as well as losing the elbow crutches, walking sticks etc and allowing my Automatic Nervous System to take the strain of trying to keep a consistent walking ability, while I let myself mindfully accept my acquired limitations.
This means still pottering about my house/garden (so keeping the principle/posture and muscles of walking engaged), having an afternoon rest daily on my bed with legs elevated (for any leg swelling to subside) but not too long as to seize up my tendons - a common problem with me. Though using a powered manual wheelchair when `walking' outside my property. The relief of stress, pain, anxiety, social awkwardness and most of all gaining Freedom was huge and life changing! It gets me to where I need to go every time and waiting sitting down for appointments; like for Covid Jabs is a bonus!
Now I went for a manual wheelchair with powered hubs which was very expensive, I will not deny that, but I figure it would be a great investment (like a car for distance) and would breakdown into smaller pieces to load into my car or indeed anyone's car/taxi etc. In reality the smaller parts are too heavy for me to manage alone, so got a second hand hoist fitted to my car and since then have had complete control of my outdoor outings. I also have an indoor manual wheelchair for around the house when my legs pack up altogether on a regular basis too.
So while I admire your determination to maintain a normal life without major mobility aids, and setting big goals. I also advise you always set achievable goals in small stages and weigh up what is more important - having the stress of trying to walk everywhere `normally' or having the physical/mental relief of using a wheelchair, leaving you more positive and energised to support your kids when you get there?
Life changes and time and time again proves you need to consider compromises to be happy?
Look for the calm in the Storm!
p.s just because there are people worse off than you, knowing that does not lessen your immediate symptoms - remind those annoying people of that!
Thank You for all your lovely comments I know it's been a while and I hope you all are keeping safe and well. I send my best wishes to you all and hope you all had a lovely Christmas and New year x
I highly recommend The 12-week FNDcourage course that begins August 7th and is completely online. The course includes 12 webinars with an international expert on FND (webinars are recorded if you can't attend live). Afra Moenter, pHD has been treating FND for decades and has created a course and a community based on what she's learned. The course also includes 12 weeks of study groups- an hour each week to meet with others with FND and deepen into the healing work. FNDcourage is also hosting a retreat this September. Registration for both is open now and spots for the retreat are limited.
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My 11 year old daughter has FND
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just diagnosed with FND
