FND Norwich

FND Norwich im trying to get people with FND together to get our experiences to parliament.

Ive been very quiet on here i do apologise, struggling alot with how my stomachs been and pretty annoyed at how my FND w...
20/06/2026

Ive been very quiet on here i do apologise, struggling alot with how my stomachs been and pretty annoyed at how my FND was handled for so long. Any problem i had i was just told "ah its your FND" "jusr crack on and you'll get better" if investigations were actually done they would have figured out the fibromyalgia and possibly ME/CFS ( they are still not 100% as theres so much going on but will be getting therapy/advice) so just keep pushing yourself and crack on was actually the worst advice i could have gotten. As ive had a chefs mentality through this i was really pushing my limits and last year was the closest to feeling myself again but during that my blood oxygen and iron was drastically dropping till i was hospitalised the burst stomach ulcers.

Id been banging on about how id be throwimg up in the mornings and lots of stomach pains but again "its just your FND" ive got multiple referrals gastro, ENT, FND specialist. So if you are diagnosed with FND make sure they are looking at other things as the original advice that i followed actually fu**ed me up alot. Hopimg to see some energy come back woth iron tablets but if my body isnt processimg it right then i dont know if we are just pi***ng in the wind, time will tell. Everythings taking too long and all i want is to be able to figure out my next career but until my health is sorted im in limbo.

We need better support systems for these chronic illnesses and politicians to undersrand this isnt a life choice. Being mainly housebound with the odd outing to test the waters is difficult its like covid never ended and i know how alot of yall went fu***ng mental at that.

Always hoping for a better tomorrow.

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 a...
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 fu***ng desk chair. Not being able to work isnt a holiday of joy and having the time of my life, im in a fu***ng 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

Ill try do some posts soon, been a pretty rough one tbh. Still recovering from the stomach ulcers that popped and caused...
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. ❤️

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...
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.

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