The clocks have gone forward and I have been sitting in the sun, reflecting on the rollercoaster of the past 11 months. It has been a terrifying and eye opening experience and one that sadly appears to have mirrored the experiences of many others in similar situations. On the 1st of May 2016, my world started to turn itself inside out. Initially I saw the GP over concerns about continuous head pain and dizziness and -after a barrage of scans, tests and more prodding and poking than 2005 Facebook – I was signed off work as a teacher and locked in a scary and ever shrinking world where the condition morphed into something more disquieting – loss of processing, memory, vocabulary, mobility and dexterity. This is where the real trouble lay-nobody knew why.
My mobility is the most visible issue as I now use a stick having fallen once too often. On good days, it’s a safety blanket, whilst on bad days my walking is so disjointed and unstable that I am in tears at the prospect of leaving the house. On good days, I’m asked why I need the stick and have been accused of attention seeking, whilst on bad days I am humiliated by the stares I get as I lurch around like an extra from the Walking Dead. My vocabulary has fallen apart which leads to much hilarity when inappropriate words slip out but is less amusing when I fall in the middle of the night and can’t communicate with my wife. Equally distressing is my processing and memory loss, forgetting information, past events and even the date of my birthday. I am incredibly lucky to have an interested and engaged GP who monitored proceedings whilst I was passed around a variety of neurologists and became increasingly disheartened with the situation.
At the end of February, I was admitted into hospital after my GP became concerned that I had deteriorated rapidly. I arrived, presenting the file of information we had collated over the past 10 months, and was briskly told that I was wasting valuable time, not trying to be well and that I should have been taken straight to a psychiatrist. Believe me, I am the first person to practise tough love and I daily force myself to push through to find some semblance of normality but come up against very real and physical roadblocks. Now I was being told it was in my head and I wasn’t actually experiencing these debilitating symptoms? I returned home heartbroken, spending the subsequent days catatonic and out of reach of comfort and reassurance
Then, two weeks later, after months of confusion and worry, we saw a consultant at Queen’s Square Neurological Hospital and we walked out of there with a name. Functional Neurological Disorder. This thing had taken over my life and I finally knew what to call it! Three little letters which suddenly fitted my world so well- FND- ‘…symptoms which, whilst similar to (and as debilitating as) neurological diseases including MS and Epilepsy, are not caused by structural disease, but a problem with the functioning of the nervous system’. The hardware is intact, it’s just the software that’s letting me down! That night I slept properly for the first time in 10 months.
Now the work begins. I am trying to forge a way through -there is no rule book, but the support I have found makes me feel invincible. Armed with new drugs, I am undertaking neurophysio rehabilitation at Queen’s Square and I will work harder than I have ever worked before. But we’re unsure what the prognosis will be- FND isn’t going away overnight or even completely, so bear with me. If I don’t speak on the phone, it’s not because I am ignoring you- it is because I cannot understand or follow the conversation. If I cancel plans, it is not because I don’t want to come, I am desperate to be there but I currently can’t walk or say my own name. If I see you, it will be on a good day- very few people see this darker side. You may tell me I am ‘looking good’ and how ‘great it is to see me being normal’ and I truly appreciate these comments- I am working my socks off to present this. You may comment to others that I seemed on ‘good form’ and ‘getting better’ and when I speak about a bad day you’ll be ‘sorry I’ve gone back downhill’. So am I.
But we need to change the thinking. This is not a hill to climb- it’s a rollercoaster which has many twists and turns. There will be good days and there will be bad days and sometimes I will push myself too hard and there will be knock on consequences. But that’s OK. I do not know what my FND future holds or what the situation will be when we reach the end, but I shall persevere. There is very little out there about FND and many people have similar experiences when they are turned away by doctors with no previous FND exposure We all want to show the world our good days and successes and it is natural to want to hide our weaknesses away, but it is only through speaking and exposing the bad days that we will understand more about the impact of this condition. So here I am, this is me and I have FND. It’s not pretty and it’s not easy but it is min and I will rein it in rather than let it run wild.
I have one request, please indulge me- when I am clearly struggling but I tell you I am fine, let me. I am wearing this mask because for the few hours I have it on, I can pretend that the world as I know it hasn’t changed, that this has all been a bizarre dream. Yes, I have FND but FND does not have me. There may be hell to pay tomorrow but for those few hours, I am reclaiming who I am.