Good evening all.
So today I had the pleasure to interview a very kind and caring girl called Jemima Croft whom I met through a facebook page for younger fnd fighters (this is the name of the page). I say I met I havent had the pleasure to actually meet this girl but speaking to her throught chat has been a pleasure in itself. The younger fnd fighters page decided to do a Swapbox, meaning literally what it says on the tin…swap…box. I was paired with Jemima and well I didnt know who she was from adam and well I got talking to her through Facebook and out more about her and well my job was to then go out shopping for a box and some items to go inside to send to her so on a bad day she had something to make her smile. (I am a bad person and havent sent mine yet …. hey its not my fault). I recieved my package on my birthday…it was amazing…and loved it….she also wrote a beautiful letter.
She voulenteered for an interview and I am now happy to share with you all #raiseawarenessforFND.
Where are you from?
How old are you
How long have you had FND for?
I have had FND for 4 and a half years
Do you feel FND restricts you ?
I no longer feel my FND restricts me as its really well managed at the moment. As long as I prepare well in advance, allow myself time to rest, and that everyone is aware that I may have to cancel last minute, usually I can still do all the things I want to. I know my triggers really well now too so can avoid them.
What helps you control FND?
I am on medication that controls the head pains that trigger my seizures that I was having daily so that has helped massively. I also have FND specialised physio that I do everyday, I play wheelchair sports and I horse ride, so the muscles that have weakened due to lack of mobility are now slowly getting stronger. I also use a lot of grounding techniques and pacing.
Do you have the right support medically and at home
I am very lucky that my family have always been incredibly supportive and that has made it so much easier to live with FND. I have struggled with support from medical professionals as I spent 2 and a half years trying to convince them that I wasn’t faking it. They couldn’t find any physical reason for my symptoms on scans and so decided that it wasn’t real. Thankfully, after getting diagnosed it has been better and I now have an FND consultant and an FND neurological physiotherapist.
Describe a good day
a good day for me is minimal pain in my knees (I have this constantly), minimal chronic fatigue, and good concentration levels. On these days I can usually manage a full day of activity with short rests in between.
Describe a bad day
my family call my bad days ‘flu days’ because that’s what its like. I am usually bedbound, in extreme pain, exhausted, and have severe memory loss and concentration problems.
What would you say is your favourite hobby and why?
my favourite hobby is horse riding. I’ve been riding for over 10 years now and am hoping to make a career out of it. It was the first thing I could do independently when I became ill, that I could also do before. They don’t care if I use a wheelchair or if my legs aren’t working properly that day, so long as I treat them right they will look after me in return. They helped me to walk again (with crutches), help with my memory loss issues, and I am so much stronger both physically and mentally.
Last of all….what would you advice people who think they have FND, those who have just been diagnosed and also to those who just need a bit of advice here and there in all walks of life ?
the best advice I can give to newly diagnosed people with FND is, be patient. Its probably the most frustrating thing to hear, but it works. Living with FND, things rarely succeed first time. If you learn to be patient with yourself and with your situation, things will get easier
Thank You again Jemima for taking the time to do this.
Ciao, Adios, Bonvoyage