Posted in Interviews, Uncategorized

Interview with Amy

Hello all !

I have something to share with you all today. An interview I done with another person who has FND. It was really nice to speak with Amy to see her side of the FND, it really does affect people in different ways and I would like to spread the word about FND and show the world that its a condition that affects everyone in different ways. Amy said to me that she loves to talk (as you will gather haha) which is perfect for the questions I threw at her today. Amy and I have something in common which is always a bonus, her love for travelling is like mine, I really enjoyed interviewing her and I hope you like reading about it as much as I liked it too.

Here we go (get ready its a long one)

Interview:

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  • Where are you from? I am from Northern England.
  • How old are you? I’m 22 years old.
  • How long have you had FND for? Well this is a bit complicated.. I was officially diagnosed in January, but began having actual FND symptoms in late September 2016 after illnesses which began in January 2016.
  • Do you feel FND restricts you? Well I am currently having neurological physiotherapy and other treatment for FND to try to get as much of ‘Amy’ back; meaning that currently I am not able to do what I used to do. However, this being said, although I have a chronic illness and disability, I don’t let it take over my life, although it affects my life. I try to do as much of what I want to do when I can and if I can. I listen to my body and rest when I need to and if I can’t do something, I don’t get annoyed (too much haha!) by it and just wait until I can or if not, I ask for help or take the help when/if offered by people.
  • What helps you control FND? My medication helps control my FND symptoms such as strange sensations, nerve pain, numbness and drooping face. My neurological physiotherapy exercises have greatly improved my body too, such as my trunk, posture, arms and legs.
  • Do you have the right support medically and at home? Yes! I am incredibly lucky and so grateful I can’t put it into words. My parents are taking me to all my appointments and are supporting my choices and help me so much I can’t even begin to explain!! They also flew out to Finland where I was on exchange and had to leave due to my symptoms. They helped me pack up all my things and flew me back home to get help in the UK. The Finns were helping me but I could no longer attend my appointments, study or do the things I needed to do. We got things moving quickly back home and my GP was very concerned with my symptoms and sent me for urgent scans, tests and referrals. I then saw a great neurologist who sent me for more scans, and ruled out other conditions which have the same /similar symptoms as FND via further tests. I was then referred to a lovely neurological physiotherapist who has helped me enormously with walking, eating, talking, using my arms and legs and my overall self-esteem. (I hadn’t realized I was lacking that much in self-esteem before, but as my symptoms affected my face and how I walked particularly, these symptoms had a knock-on effect on my confidence too, and I learnt ways of overcoming this and developed more body confidence generally.)
  • Describe a good day. Well this will change over time as I was diagnosed in January and am currently undergoing treatment, however currently it means I can shower without a rest, walk a bit, dry my hair, put my make up on, do a few computer bits, write, make a meal and go out to a shop or café.
  • Describe a bad day. Again, this will change over time due to treatment, however, right now it means I will have nauseating pain in my back, numb legs so I walk with a drag, severe burning pain in my legs and hips, burning pain in my face, heavy and painful arms liPicture1.pngke I have broken them, droopy face, unable to smile, reduced walking abilities and severe fatigue.
  • What would you say your favourite hobby is and why? Although I love being at sea, I would say my overall favourite hobby is learning languages as I love to chat haha, to meet people from other countries and cultures and to travel and explore new places.
  • My advice: My advice to people who suspect they have FND is to get help via a diagnosis from a neurologist. To those who have just been diagnosed or people just needing advice generally, I would say that you are NOT ALONE, there are support groups and organisations to help and support you, and to rest when you need to. Resting does not mean you are failing and helps you benefit enormously in the long-run, as doing too much when you are fatigued just makes things worse. This can be hard to accept at first, as you just want to do what you want to do, but you must listen to your body and stop when you get ‘warning signs’ e.g. tired legs or arms. I would say as general advice, don’t worry about other people’s opinions, do what you can when you can if you can and don’t beat yourself up. You can only do your best and if you are doing that then that is just great!

 

So there you have it, thank you again Amy for voulenteering to the interview, it was pleasure to speak to you.

 

Peace out !

Ciao, Adio, Bon Voyage

xx

Posted in Interviews

Interview with Jemima

Good evening all.
So today I had the pleasure to interviewMICROPHONE 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.

INTERVIEW:

Where are you from?

Yorkshire

How old are you

19

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.

#fndfightertroupers

 

Peace out!

Ciao, Adios, Bonvoyage