I’m nervous too!

[Prosaic_One]

Although everyone has to face the reality we’re all forced to live in now, there are things that may be genuine causes for concern for us here.

I don’t know to what extent FND has affected many of your lives but it has been a traumatic 12 years for me and I became disabled & unable to work almost immediately when my symptoms hit.

Since then, I’ve spent the majority of those years (all of my 30’s) in a wheelchair and only recently regained mobility. But the progression of my illness (& the fact that I have several other diagnoses, outside of FND) now makes it so I’ve developed very dangerous allergies, one of which is the sun.

I’m getting vaccinated but I have to carefully schedule it so that my wife can be free for any adverse effects it may have. I also know a few people who’ve developed neurological problems since getting vaccinated. Each of them had pre-existing neurological diagnoses.

———- 😆 This entire post was meant to be a reply to someone else’s! I was in the middle of cleaning & took a break to write this!!! Sorry everyone & thank u also for your supportive words. I’m a bonehead!

I’m so very sorry you’ve had to deal with this illness on top of having to care for two kids with special needs. It can be heartbreaking feeling like you’re letting yourself down & the fear of letting down ur family. So much of this is unpredictable but what you’ll hear from everyone here is true.

———-

You only really make progress by being extra good to yourself. Just try to show yourself all the love & care u show ur children. I find my greatest threat to be my own negative thoughts. It takes time but I was utterly hopeless & today, hey, it’s a good day so I am giving thanks. Please be patient with yourself.

[cocoferraro]

Hi there,I find myself agreeing with all that you say, and so sorry to hear that life has been hard to you

I have suffered with FND for 7 years, but my husband is wonderful and is my rock. he understands what FND can do to us and helps as much as he can, guess i am just lucky.

But, with FND we have to keep trying, and its an uphill struggle for all of us.

You are so righ in what you say about being kind to yourself. Try not to have any negative thoughts and take each day as it comes. I wish everyone best wishes.X

[MONIREN]

It must have been difficult, being so young and in a wheelchair. I'm finding it hard, I feel like I'm slipping away, it's been only 3 years since diagnosis, I'm 66. My journey has been slow but progressive, frustrating, our Gp has decided to wait for our vaccine, but we are regional Australia, we have only had one case of covid in our town. My husband and I have so many health problems. I do hope that things improve and you are able to cope. Its about small wobbly steps, facing each day with as much positivity as you can manage. Take care!

[Prosaic_One in reply to MONIREN]

I’ve read a few of your posts so I know it’s been a struggle for u as well. I wonder often about what my life could’ve been, the career I would develop, the children I absolutely planned on. Getting sick in my 20s lead to total isolation. My friends all vanished within a year, I had to quit the band I played in. My hands lost dexterity so playing my guitar became impossible.

The most painful aspect, by far, is watching as u lose pieces of ur identity. Mourning yourself, feeling that other people forget who u are because so much of who we are is in what we DO. There’s so much I’ll never experience due to FND...motherhood being my greatest loss.

Having a spouse, a very good friend, a supportive family...the people who never stop believing in you, these are precious gifts. I still fight for answers to relieve my symptoms but at my lowest points, I’m not so concerned with the pain. I’m wishing instead there was someone to hold my hand thru it.

I hope this year brings all of us a little comfort thru any means. I think each one of you is beautiful and coming here to read your stories gives me hope when my doctors are useless.

[MONIREN]

Sometimes I get lost in the what now blues. I think it's terrible what you have gone through and what you have had to give up. But there is a very good reason why the rear vision mirror is smaller than the windscreen of a car, looking back the journey is so much harder. When you have problems as you do, you need to focus on what you can do. You might not be on the road you chose to go on, but you are still traveling on a journey. One page is not the whole story. Sorry, I'm rambling, but I have sayings in my mind to keep me focused on now. Find something that is meaningful to you when you get down, something that will cheer you up. Take care!