FND Norwich

06/04/2026

Ham for attention.

So with my posting last year i was really pushing myself to get back to what i used to be capable of and chasing the dream of normality. My advice from neurology was always "just crack on and you'll be back to normal" they said this without any investigation just moved my hand about and saw if i had and strength to push down in a leg. So ive always pushed though the pain and the seizures, the falls and the trouble with getting my breath, turns put that was terrible advice as theres possiblity of multiple things going on. Im in year 8 of this and ive only just had an mri scan, tilt tests and ME blood tests done was also diagnosed with fibromyalgia. Ive had to completly rejig my mentality to how to deal with this the last month. I was pretty manic last year and when people told me to slow down i said go f**k yourself basically because these so called professionals told me to "crack on".

Seeing alot of hate towards the disability community from reform and restore currently and id love to know what about the peopme that have chased to be normal but at every appointment with health professionals they tell me they dont want to see me in work? I was a chef and boy was i not shy to do 100 hour work weeks, its all i had and it was ripped away from me by my body deteriating. Im still the only person witnessed doing a sunday roast service in a f**king desk chair. Not being able to work isnt a holiday of joy and having the time of my life, im in a f**king prison basically. Luckily ive had multiple therapys amd help and support from some wonderful people so i hold that close to my heart and seeing friends and others doing good in life brings me joy, a little sadness im not there with them but ultimately happy they are doing well.

What im trying to get at is dont push past your limits and understand what they are, ill be back doing volunteering as soon as i get some answers and work with specialists as winging physio by myself has failed so many times, ive seen about 5 seperate physio people and theyve all said i dont have the knowledge to help your condition so ive just gotta wait ehile i see all these politicians wanting the disabled to just croak it and take away their rights and money (which really isnt alot whatsoever).

Bit of a long ome but alot on my mind and i meed tonstart journaling on this more, i dont know how to change this from a buisness page either as its not and if it was it would be a non profit buisness but i dont understand how any of that works either. The goal is to be a voice for us and make a better future for those that come tomorrow. Id like to get into politcs and take my chef brain and attitude im up for talking to all partys and seeing how they wish to handle and understand these circumstances as im currently seeing lots of attacks instead of actual empathy.

Reform UK Norwich, Norwich Green Party, The Labour Party, Conservatives, Rupert Lowe

04/04/2026

Ill try do some posts soon, been a pretty rough one tbh. Still recovering from the stomach ulcers that popped and caused internal bleeding which also nearly gave me a heart attack. Many ups and downs and im currently feeling pretty down and cabin feverish, im gonna stop chasing what i once was and focus on getting my blood oxygen levels normal. Ive had bad advice for a long time which was just push through and you'll get better, ive done that for roughly 8 years now and last summer was my biggest push that may have sent me overboard l. Still waitimg on a bunch of test results (mri scan for brain and upper neck, cardiology for POTS, FND specialist in bury st edmunds, ENT for this pounding in my ears and synuses.) Occupational health has been a godsend and they got me this nifty bed. Im doing ok considering it all got some great support from family and friends and id still like to attempt some sort of support group for people in norwich with FND and chronic issues, im always just a message a way if your feeling like its all too much. Keep on swimming yall. ❤️

08/01/2026

Worked my ass off last year to see if I could make a change to the strength in my legs, did lots of walking even started to kick again. I cam safely say that has actually backfired on me a little bit with this flare up that started half way through November and im still in this flare up.

Still keeping optimistic and hopeful, now learning wheelchair life as im not able to walk far at all without falling or intense pain.

Doctors are going to look at my legs after 8 years of me banging on about them so thats a plus amd something about a social prescriber.

Ill be looking into seeing what trials and research opportunities there are, I did have 2 people get in touch woth me but that fizzled into thin air probably because they didnt have the funding.

Ww3 could possibly kick off soon so thats great for the nervous system. Keep safe all.

17/12/2025

Blood tests for me/cfs done, tilt test friday. Hoping this flare up doesn't last much longer as already a month into it and I would really like to get back to doing things again. Its horrible having to change commitments in a flash for long periods of time but we always find our ground again and thats whats important.

I did the hardworking so you dont have too but working out did see some benefits but ive lost all of them in a month. Focusing on pacing now and condensing where I need to travel that will be wheelchair distance. I still wish to learn to headkick but thas gonna be some time. Itll be a good day getting back on the punchbag.

03/12/2025

Ive been terrible at building this page, still hoping to connect with others who struggle with FND though.

I was doing pretty well with ability to push through alot of pain barriers and I had the best summer in 7 years this year. I think I pushed a little too hard recently with doing alot of stuff and ive been rather fried these last 2 1/2 weeks.

Seizures are absolutely draining me of energy, muscles in my legs seem to be extra tight again so walking really sucks. So back to the bonfire to recover is what ive done, it is annoying as I was getting used to eating more but its gone back to one meal a day and forcing snacks when I can. Gym has taken a hit too looking forward to when I can manage that again.

I dont really like posting seizures as its negative but its reality, the stress of what I can do for work and will get me off universal credit is really getting to me.

Positives is doctors soon to look into more and tilt test to see if POTS is also on the cards. Will see how long is left for the specialist referral.

Do your best with the cards youve been dealt.

25/10/2025

7 years to get forwarded to any form of treatment. Im finding through retraining my brain with movement getting stronger is kinda helping. Im just doing it blind currently, need to follow up on when fnd specialist in bury St Edmunds is gonna be and when my neuro physio will start. I did a glutes class yesterday and now ive been trying to wiggle my big toe for the last hour. Determined to try and make it back to the gym for arms today though. "Just wiggle your big toe"

we need faster help.

We urge the Government to increase funding to ensure better Functional Neurological Disorder (FND) care, including clear FND care pathways in health trusts, multidisciplinary teams trained in FND, more follow-up appointments for patients, and mandatory training for GPs, neurologists, and A&E staff.

22/10/2025

I see alot of fnd posts and I know how debilitating it can be and that but we all know this. Alot of these people are just showing you the bad and it almost feels like theres no hope to get your life back.

Its taken 7 years of trying with working out to finally get to a point where I can do it somewhat consistently. Everytime previous I would have a huge flare up and not even be able to attempt a push up for a month or 2 without having multiple seizures.

Ive found that its almost like a spring I can do some actions and I can lift weights but as soon as I put them down my nervous system will react. I really hope I can figure out if I can get any cctv footage from the gym, everytime they test the fire alarm I eat s**t and end up on my back, feels like ive been shot and I everything goes white for a sec.

How does sound effect you? Thats my biggest downfall still, baby cried at the charity shop and I was not okay even with the noise cancelling headphones ended up on the floor out back for a minute. Im getting alot better at picking myself up and cracking back on though. Id love a job where I dont need to wear ear defenders but everything is noise. Got some things in the pipeline hopefully, still volunteering but gotta keep busy ecspecially with the SAD now kicking in.

Keep on swinging yall 💪

22/10/2025

Got myself some battleropes from the charity shop, I really like the feeling of them but it is a hard movement to get used to. Youve got a lot of movement and the nervous system is fighting you but you can make progress. Also if you feel like your gonna fall you can cling on for dear life 🤣. Im definitely not perfect and not over this by a long shot but the progress thats been made this year id love to try and share woth people. There is hope to live again, your gonna have to fight for it though. #

14/10/2025

I can now kick without falling over for the first time in 7 years, obviously I still have bad days where I wouldnt be attempting this but to focus on these little wins has been everything with development. Pushing to find some work soon thats all what this is for, so I can get back to it. Treat the people that have helped me along the way, its been a great motivator.

03/06/2025

Been pretty bad again, not been able to do much excercise, a walk is the best I can do last few days and thats alot of discomfort.

Wanted to see my face after a seizure the other day and this is it. Ive been trying so hard to be pushing myself and positive which ill continue. I just have to understand its ok to crash and take it easy for some time. So ill be playing neightreign while I feel like this.
Got multiple volunteer work applied for just need some replies now.

Still waiting on neuro physio which I feel will benefit me alot, finding my triggers are in my hips, sometimes lower back.

"Don't you dare go hollow"