Today is UK FND Awareness Day.
FND stands for Functional Neurological Disorder this means that the function of the brain is fine, think of the brain like a computer and FND like the computer’s software. The computer itself is fine but the software isn’t working properly. This analogy is used a lot to explain FND. With FND the structure of the brain is fine but the brain’s and spinal cord’s messaging system isn’t working properly. This results in a wide range of symptoms. FND is experienced differently by each patient.
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| My FND symptoms |
As time went on I started experiencing other symptoms that I couldn’t explain. It was hard living with undiagnosed symptoms as you don’t have answers for what is happening to you and you feel helpless and desperate for answers and to know if there is a way for them to stop.
I also experienced a lot of negative experiences from medical professionals such as gaslighting and refusal to treat me according to my care plan as some professionals thought I was feigning my symptoms for attention or medication or due to mental illness. This along with other experiences led me to develop medical PTSD so I find clinical settings especially the Emergency Department really difficult places to be in.
Developing FND has really changed my life. There are now a lot of things that I’m unable to do because it’s not safe. I’d love to be able to drive but due to my seizures I’m not allowed; I’d have to be a year seizure free - I can’t even go a week without having a seizure and I take the maximum dose of medication to control my seizures. Thankfully due to this medication I have a lot less tonic-clonic seizures and other seizures. I’ve also learnt what triggers my seizures some of them are stress, anxiety, heat, tiredness, pain and being unwell with an infection. Managing my triggers like staying cool when the weather is hot, managing my energy and pain levels (not easy especially when you also have M.E and EDS!) and keeping on top of my mental health can help to reduce my seizures.
Accepting the use of mobility aids has also helped with my mobility. Before I was diagnosed I carried around with me a fold-up walking stick to use when needed. Then in physiotherapy my therapist said I needed to use a crutch which would offer me more stability than a walking stick. Later I needed two crutches to help aid me walk as my mobility worsened. Then one appointment with my neurologist I asked him if he thought a wheelchair would help me or not and he responded with that he thought a wheelchair would really benefit me and he knew I’d use it when I know I needed to use it as he knew I wanted to keep my mobility as much as possible. The InvaCare Action 3 wheelchair I got from the NHS served me well for a long time but as my health conditions alongside my FND deteriorated and I needed to use my wheelchair more I knew I needed a wheelchair that would better meet my needs. I’ve had my GTM Mustang, an active wheelchair exactly a year now and it’s made a massive difference to my live. It’s really improved my quality of life like for example if my FND symptoms mean I can’t walk I now have a wheelchair I can use around my home so I don’t have to stuck in bed. Plus I’m a lot safer as I now have less falls. My new wheelchair is much easier to self-propel so I don’t need someone to push me around which makes me feel more independent and gives me more freedom.
I’ve now learnt to live with FND and its symptoms. For me my FND is always there. I don’t get periods where I’m symptom free or experiencing very few minor symptoms and then have flare-ups where my FND symptoms become present for a period of time.
There are different ways I manage my symptoms. I do take different medications to help control my symptoms, for example medication to help with my chronic pain, muscle spasms and dystonia, neuropathic (nerve) symptoms and seizures. I also have prisms in my glasses to help with my diplopia or double vision as my FND causes visual changes. Most of the management of my FND though is self-management and these are things that I’ve learnt and developed over time. For example pacing and activity management, having rest periods or rest days, using my heat pad, doing physio or yoga as I find movement helps, engaging in self-care activities, distracting myself so it takes my mind off my symptoms, sleeping well, massage therapy, using mobility aids and other equipment and aids, staying hydrated, managing my seizure triggers and more. Managing my FND (and my other conditions) is literally built into how I live each day. Inevitably I do have good and bad days, sometimes a bad day can be brought on by a tonic-clonic seizure, high pain or fatigue levels or other symptoms being more present. If I’m having a bad day today like I am now as I type (I type my posts in little chunks to make it more doable to be a blogger with disabilities) - my pain levels aren’t great today and the numbness I get with my FND is more present today too so my PA suggested a pyjama day as I’d be more comfortable and I’m having a day in bed too. This is just one way I manage a bad day and I’ve planned as a distraction to finish this post and to do some colouring which I love as a distraction and self-care activity.
I definitely think medical professionals need to learn and understand what FND is and some of the main FND symptoms patients with FND may experience. I think this will reduce medical professionals not understanding us, like when my symptoms haven’t been believed and it’s lead to poor care and negative attitudes from the clinicians. I think non-epileptic seizures especially need to be understood that they are still neurological in nature and not the patient feigning them for attention or drugs - I think paramedics and A&E staff especially need to understand non-epileptic seizures from my own personal experience. I also think that more neurologists should have an understanding of FND. I’ve been turned down by several neurology services because FND isn’t a condition they treat as FND is such a specialist area and there are so few FND specialist neurologists. I also think more research is needed. There are tests for FND like the Hoover’s Sign for leg weakness and the Tremor Entrainment Test and things like EEG’s can rule out epilepsy. fMRI scans have shown to show FND but fRMI scans aren’t used as a diagnostic tool.
FND really has changed my life upside down and I’ve had to change the way I live my life to be safe and to accommodate my symptoms. Having a disability like FND is expensive as I need equipment and aids to allow me to do tasks safely, easily and/or independently. Wheelchairs and Batec’s definitely don’t come cheap and I’ve had to do a lot of saving up to purchase them. Then it’s everything else I need like hot water dispenser machines as I’m unable to safely use a kettle as when I first started to have seizures I poured a kettle of boiling water on myself so since then I’ve never used a kettle for my own safety. I also have to buy things lids for cups and lidded cups, straws (the straw ban really affected disabled people like myself), adapted cutlery, kitchen aids, heat pads, hands-free water bottles that attach to my profiling bed, my Flexzi stand that also attaches to my bed, grabber stick - the list goes on.
Despite living with FND and the limitations and costs it puts on me it has changed me as a person. I still do grieve for the life I’ve lost at times but my FND and becoming disabled because of it has made me realise what really matters in life and who in my life really matters too. I have more gratitude for the small things because they’re often the big things in my life now like a letter from a pen pal, going out on my Batec, spending time in my garden, or reading my kindle with a hot drink cosied up in bed in the morning. I don’t think I’d be the person I am today if I hadn’t of become unwell. Yes there are days when I wish I didn’t have FND or a disability because there are so many challenges like being in pain all the time or lack of wheelchair access and the grief I still hold for the life I’ve lost and where I could be if I didn’t develop FND. However I’ve managed to create a new life and I’m passionate about raising awareness and advocating for disability. That’s why I started this blog and I’ve done lots of awareness work which you can see what I’ve done here and I’m also a Storyteller for the disability charity Scope. As well I also really appreciate the support my PAs give to me each day the enable me to live independently and to life my life how I want. I also appreciate all the support my Dad gives me too.
