#FND

[@kengel100]

So true! Telling people I’ve had a run of good days feels hollow sometimes, and you’ve perfectly described why that is.

[@ChrisCFNDjourney]

@@kengel100 thanks for your comment. I really hope you're well and that you are having more 'good days' at the moment. For me, the kids are away on holiday so ive had a very calm week which has been great. No doubt the stress will kick in next week lol

[@kengel100]

@@ChrisCFNDjourney I’m sitting here with a headache etc and yes it’s still a good day 😅

[@marciemann6810]

Good days and bad days for sure. I have more good days now than bad mostly because I've adjusted my mind to my new baseline. That doesn't mean giving in to low expectations for what I can do now, but understanding what's possible and being kind to myself about it. The worst days are when you get in your head and remember all you could do before. I really try to never go there. Stay positive, like you said, and be kind to yourself. Life is a challenge, but you're meeting it head - on, and that's really all anyone can do. Stay strong.

[@ChrisCFNDjourney]

Absolutely. I'm still quite new to all of this. But it's so important to do something positive. Which is why I like making these videos, some are more informative than others and some just ramble lol. This has obviously been a positive day for me as I seem quite upbeat and happy, but tomorrow I may be the complete opposite and struggle mentally, cognitively..... and as you say, stuck in my own head! And of course physically etc. Thanks so much for your comment. I hope you're having a good week?

[@KimberlyMerrick-vu6xe]

Thank you so so much! I have found my good days right now is being able to have good conversations. Being able to get my phone calls made at least a few till I have to take a break. I can walk now more days inside my house with a cane. Not a walker. Still have pain, muscle spasms, left side weakness and my legs stop cooperating. On a bad day I am lost, I sleep about all day. When I am able to be taken out of my home or adventure out The walker or a wheelchair is used. I walk like Frankenstein stiff. Seizures where I am lost staring off in time. Repeat myself. Vision issues, cognitive worse. You have definitely helped me to understand this. Thank you so much

[@ChrisCFNDjourney]

I think I've made it out to sound that I don't have very many symptoms. Atm I'm feeling pretty good and having some good days (with baseline symptoms) but still suffer daily but not as bad as some others. I feel very lucky but I feel that it's important to learn to adapt to what you're able to do and lower daily expectations as there's no way we can do what we used to, to the same level anyways. Lol. Thanks for your comment. Keep fighting and here if you need a chat. 😊

[@ChrisCFNDjourney]

Also, I know exactly what you mean about the cognitive issues. On bad days I really struggle to concentrate, put words together, I look like I'm listening but I can't take words in, I get over stimulated, hypersensitive to sound and light, headaches, vision issues amd then the horrid migraines. The list goes on doesn't it. I suppose I'm trying to remain as positive as possible. I hope you're having a good week?

[@fletch1313]

Absolutely mate I know 100% what you mean on my bad days I can speak which a challenge but it just a day and tomorrow maybe better.stay strong mate and if I can help let me know.

[@lovefromrosecottage]

Just want to say that you are doing great raising awareness for FND. Watching your videos gives me a better understanding of this condition. From a fellow FND sufferer take care 😊

[@ChrisCFNDjourney]

I'm so pleased I'm able to help people understand it a bit more. I'm still very new to it really. Been diagnosed for 1.5 years. It's been life changing in many ways. But knowing I'm doing something positive really helps me. I hope you're well and having a good week if it's possible?

[@lovefromrosecottage]

@@ChrisCFNDjourney thankyou 😊 you too.

[@jessicacrimins9122]

I was diagnosed june 2022 and am debilitating rapidly daily. The fatigue is relentless. I feel like I’m living in Groundhog Day. Pace and listening to our bodies is about the best advice I can bet my life on. I’m stick dependent now also in fact I don’t feel safe without it. Thank you for sharing your journey with the world. This needs so so much more awareness and I send you nothing but love and healing.

[@ChrisCFNDjourney]

@@jessicacrimins9122 thank you very much for your kind words. I'm. So sorry you're suffering too. I am definitely stick dependant now too and I too feel unsafe without it. Keep positive and I hope You're well.

[@keithrobertson2260]

With you on all of this. I bring my walking stick everywhere even on good days. You sound very similar to me in symptoms and progressions. I consider my good daysbmy new normal and still struggle with slowing down on those good days.

[@ChrisCFNDjourney]

Hi Keith! Thanks for your message. When I recorded this I was clearly having a good day and was feeling positive and upbeat. But some days could be complete opposite and I may struggle to recognise myself and wiah I could move like I used to and think clearly and be as quick off the mark. It's so tough isn't it. But I know I need to be grateful for the things I am able to do still as I know many aren't as fortunate. My cane is part of me now. If I walk without it for 10 strides I'm lucky. I feel as though I may collapse or lose my balance. It's so frustrating. Bur my physio said to keep using it to enable me to be active still. I hope you're well and having a good week. Thanks for following and commenting

[@pardalote]

Thanks for your videos. I just received my FND diagnosis last week. I really appreciate the support I have found online. Just wondering if you or anyone else has a short, pithy sentence long explanation of what FND is. It would really come in handy for me at the moment.

[@ChrisCFNDjourney]

@pardalote so FND is the malfunction of the nervous system basically. The nerves don't fire up properly and send mixed or no signals to the correct part of the body. The best way to think of it is like a computer as the hard drive and all of your your body as the soft ware. There s basically a fault or malfunction in the software. The hardware (brain) is fine structurally but the software (nerves etc) have bad wiring. So sorry you've had this diagnosis and I know how hard it is to understand. Take one day at a time and don't compare to your past. Adapt to your new abilities and enjoy what you can do. I hope you are well and not suffering too badly. Feel free to reach out any time 🙏👍

[@pardalote]

@@ChrisCFNDjourney thank you so much 🙏

[@ktrean2054]

Today is a bad day, fatigue, feeling unsteady, nausea, weakness in my right side, brain fog. My goal at the moment is to be able to walk to the end of my rd consistently.... harder than it sounds. I used to walk miles everyday with my dogs, go to the gym and have an active social life. It's hard to stay positive some days isn't it.

[@ChrisCFNDjourney]

Hi, yeah, brain fog is awful. I hate that symptom. Have you tried increasing your electrolytes and magnesium? I've done both and it's really helped with my brain fog. I hope you're doing OK this summer 😊

[@ChrisCFNDjourney]

Having that small daily goal is incredible. Walking up to the end of the road is great! Well done.

[@ChrisCFNDjourney]

Also, worh the nausea and headaches and muscle pain- have you been diagnosed with migraines?? Could possible.be a migraine. I also have severe migraines which trigger my fnd symptoms and visa versa.

[@ktrean2054]

@ChrisCFNDjourney I haven't been diagnosed with migraines but I'm in the early stages of diagnosis. I'm going back in a few weeks and have to go for some kind of scan in the meantime. Thanks for sharing your journey, sounds like you are really going through it!!

[@ktrean2054]

@@ChrisCFNDjourney That's a good tip, I will give it a go. How do you increase your electrolytes?

[@kamsi4305]

how long have you had FND?

[@ChrisCFNDjourney]

Was diagnosed April 2023