This post was updated on 25/02/22
When you are first diagnosed with FND-it can be a very daunting time. Up to that point, you may have been experiencing a number of symptoms that may not seem to link together. You may have researched on the Internet and convinced yourself you have all sorts of illnesses. Then you’re told you have a condition with little explanation of what that means.
Read more: When I was given my diagnosis
I was diagnosed with Functional Neurological Disorder in April 2013. I remember it was a confusing time. However since then I’ve been on a mission to learn as much as I can about the condition so that I can live the life I choose. So let’s start back at the beginning, with these steps you can take to improve your understanding and chance of recovery.
Acceptance and Understanding is Key
You may have been to medical professionals, for various appointments. Most of your tests will come back clear. Add to that, the cause of FND can be unknown. In an appointment with a neurologist you are then given the diagnosis of Functional Neurological Disorder, with no definite treatment plan. It is no wonder some people struggle to accept and understand the condition.
However acceptance and understanding is key. Patients who do improve, say that one of the most important factors in recovery seems to be whether the diagnosis and explanation they were given makes sense for them-perhaps not immediately but eventually. (Neurosymptoms.org)
Take Ownership of Your Recovery
Following on from the point above, take ownership of your recovery and do what’s right for you Be your own advocate and don’t wait for other people to provide information or support. Your symptoms are unique to you and certainly we are all unique as human beings. Explore, try and believe that you can recover. (This is a whole blog post in itself, for another time)
One way to take ownership of your own recovery in a really practical way, is by tracking your day. By monitoring your activity level and symptoms among other things, you can start to see patterns and triggers. This is one thing that I did and I have greatly improved my health through this process. It is not about getting obsessed with it, but having something to refer to, can help control your days.
I’ve created a day tracker for you. Just click here to download.
Visit Useful Websites
There is some information out there, to help with understanding, recovery and living your life with a chronic illness. The first site to look at is neurosymptoms..org. This website was put together and maintained by Professor Jon Stone, a Neurologist in Edinburgh, Scotland. He has been involved in research in this area across the UK and worldwide since 1999.
Another fantastic website in FND Hope. A fantastic charity whose mission is to promote awareness, support for affected individuals, and advance research for the prevention, treatment and recovery of FND.
Set Yourself Up Success with Self-Care
Look after all of you, mind body and soul. The stress of the diagnosis and dealing with the condition is difficult enough so self-care becomes even more important. Daily self-care can make a huge difference to our mental health and overall wellbeing. It is like putting an deposit in your energy bank; and we could all do with that!
Read more: Self-Care for Spoonies
If you’d like to get started with self-care today, download this At Home Guide to Self-Care, by clicking on the link.
For ongoing support and encouragement with your self-care, come and join my FREE Facebook group, Shine in Self-Care
Talk to Other FND Warriors
Talking to and meeting with other individuals with FND is really beneficial. As we’ve discussed before, it can be quite overwhelming when you are first diagnosed. By talking to others, you’ll realise you are not on your own and you can discover ways to help based on what others have tried. A great way to do this is through FND Dimensions; a charity set up with the aim to develop a network of peer support groups across the UK.
In my next blog post, I’m going to be explaining more about how I monitor my day and symptoms, in order to learn, improve and live!
