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)
- 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 like 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