So as I said this week on my social media, I would do a blog post on Family and what it is like for them living or being around someone who has Functional Neurological Disorder. First I would like to start with saying thanks to My Mum (Susan), my brother (Paul), my mother-in-law (Gail) and my wife (Rachel). I have asked them some question’s in which some of them will be used here in this blog, now some of the answers can be upsetting and I know that me asking some of these questions especially to my brother has hit home with them. The other half of the blog will be around me and how this firstly makes me feel, and secondly how I have to deal with this.
So the first question which I asked them all was, Have you ever heard of FND? Now they all have said no, this was not something they have heard about, which shows that there is not enough information out there about FND, but I have seen this week that there is a booklet coming out sometime soon which has been put together by Jon Stone, Tim Nicholson and FND Hope, now these are leading experts in the field and this is a exciting time and could be a game changer. My mother in law works for the NHS and this is what she had to say “I’ve worked in the NHS for 11 years as a medical secretary and have never heard of FND”
Now the next question to them was, What were your first thoughts about this condition? Now the general answer to this was; will they get better and how will they deal with this? Now I wish me or any doctor in which we all see could give the answer to these, they short answer around getting better is simple and that it is a area which has not been looked into enough to be able to give a answer, everyone is different. Some people can have symptoms on and off for weeks, months or years, some people can have just the one lot of symptoms and then be okay again. I wish this was me, but realistically it is not the case.
The next question was What do you do when it has been a hard week for me? Now here a did get a lot of different answers, this is mostly because they all do different things in there own way. The general consensus for this was to try and cheer me up, by taking me out or just showing me that no matter what happens there can always be a positive to take from it. Now these answers are the most true, sometimes it is better if I get out of the house when I not feeling so great, this is a good way to take my mind off it.
Now the next question I asked Rachel, and I belive was a hard one What is it like living with someone with FND?
This was her response What is it like living with someone who has FND? “my husband asked as I sipped my coffee yesterday. I sat in silence for a while, not knowing how to answer. It is not a question easy to answer, mainly because it involves so many emotions and daily experiences that it is hard to put into words. When he explained it was for his blog, I decided to try my best to articulate it.
My first reaction would be this: it is utterly exhausting. Over the past couple of months, I’ve had to adapt from living in a house with a fairly equal relationship where every job is shared to doing most of the household work myself. This, as well as working full time in a school and caring for our lively two-year-old, I’ve found physically exhausting and mentally draining. It is also emotionally exhausting to wake up every morning and not know what to expect. As people living with FND will know, symptoms can appear, disappear and reappear at any time and living with this uncertainty is exhausting, especially for someone who meticulously plans everything.
I’m sure that, at some point in the future, I will get used to the condition that has upturned our whole world; we are not even a year into our married life and already facing a mountainous climb back to normality. However, having said all of this, I refuse to let FND beat us. We will face it together hand in hand as we promised in our marriage vows.
I find often now that Matthew asks me if I still love him, or if I regret marrying him. I answer his questions in the same way every time: a raising of one eyebrow and “don’t ask me silly questions”.
Now over to my brother Paul, What is it like knowing someone with FND?Now his answer to this was so raw that it really upset him, I am sure that he wouldn’t mind me putting this on here, he is very supportive and always has my best interest at heart, for this I can not thank him enough. His response was “It has its ups and downs, good when you’ve had a good day with S and you’ve made a bit of progress and the hard listening to you cry when it’s got you down”
Now the final question I asked everyone was If you could give others some advice, what would it be? My mum’s answer to this speaks for its self, so I will just leave it there. ” Just because someone has FND doesn’t mean they have changed there still the same person. You just have to be a little more patient and understanding. People with FND can become embarrassed about their condition and become withdrawn and depressed. Be there to support them and encourage them. Just because they have FND doesn’t mean they can’t live a full productive life, they can! Be supportive, it’s the little things that count even if it’s just someone to talk to”
Having a condition which makes you really rely on others is very hard, not only on the person it effects but the people around them as well, and I think that a lot of people overlook this! So never forget to thank them close to you, who do anything for you with no questions asked.
Now asking these questions has really opened my eyes, gives me a insight to what they all think. My advice here is don’t take the small things in life for granted, make sure you thank them closest to you all the time! I know I don’t do this enough, so thank you! Not to just these in the blog but to you, for reading, for dropping me message to make sure I am okay! To helping me and a never asking why!
Untill next time stay safe!