Dear Diary: My FND Battle

17 years ago, I opened the front door, had a panic attack, put myself in the recovery position and had a seizure! I remember feeling calm, and knowing exactly what to do despite never having a seizure before. I mean.... How messed up is that? Being fully awake, all senses on alert but having zero control over the actions of your body and yet fully accepting what was happening and what to do within seconds.

So, without throwing up my life history for the past 17 years I will condense it all down and just tell you that I dealt with it! I accepted I had seizures, over time, despite not really understanding why. My seizures were full blown body convulsions lasting no more than 10 seconds each but I could have 30 within an hour on a particularly bad day. To say they knackered me out is an understatement. With my seizures come a whole host of emotions and I think for me, it resonates that I have no control over my body and temporarily lose control which is something I try to manage. Over the years I've had bad periods and good periods. Months without a single seizure and then weeks of bum shuffling because standing was too dangerous as I would just collapse on the floor. I've made them comical as a way of dealing with them. My friends would call me the washing machine and call out for the whites to be added... I liked this and I welcomed it as I never panic when I have a seizure and I don't want anyone around me to panic. So for the most part, they were an aspect of my life I accepted and managed and ensured those around me did too. As Douglas Adams says: Don't Panic!

This was all OK until March 2019. I took Flo to school, headed home to get ready for work but when I got in the car I felt anxious and I think I had a panic attack. My breathing was erratic, my heart raced, I couldn't focus, I didn't feel like me at all... I made it home, sat at the desk and rang my mum to tell her. While I was on the phone I went into a seizure. I slid off the chair, dropped the phone and had about 3 seizures. Although I'm conscious there is an element where I am not alert. I composed myself to some degree and found my phone. I couldn't talk. I could grunt but I couldn't form any words. I also had my massive Dobermann next to me licking my hands to see if I was OK. I fell in love with him all over again at that point because he could sense something was wrong and was trying to help. When I caught up a bit I realised my mum's boss was on the phone to me and my mum was in the background calling the ambulance. My mum lives 150 miles away so it wasn't the easiest of things to do. Cutting out the waffle and everything that then happened for the rest of the day, from that moment I was having up to 20 seizures a day, I lost my ability to talk and I lost my ability to walk. I lost my independence and was left vulnerable and mentally and physically weak.

What I mean by this, is that my brain was so scrambled I actually couldn’t work out how to put each leg in front of the other. Walking up the stairs was difficult, forming words was difficult. It took so much energy and determination to form 1-2 words and walk a few meters that after I had done so I would seizure and be exhausted. This continued for 6 weeks. I was basically house bound. I couldn't work, I couldn't think, I couldn't be a mum, a wife, a friend... I was an absolute mess. The seizures changed throughout these 6 weeks and I developed paralysis more so than the body shaking. The first time it happened, I was lying in bed and my friend Lou popped in to see me and make sure I had something to eat. I could move my eyes so I acknowledged her and she made me drink a smoothie. She said a few things and then left. She thought I was asleep and just a bit groggy. I managed to focus all the energy I could find, free a hand and grab my phone so I could message her to say I was paralysed. I was shit scared. My seizures have never scared me, but feeling like I was being forced down and unable to move scared the actual crap out of me. I remember crying and Laura came back knowing I was awake. She didn't know what to do, nor did I. I stayed like this for some time. Incase you ask the obvious questions, yes I sought medical attention. I was blue lighted into hospital 3 times and each time I was sent home. There is, medically speaking, nothing wrong with me apparently! Or at least there is nothing that can be done at the hospitals.

Eventually, after 6 long weeks, my seizures reduced and I gained control over them again. There are a number of factors that helped with this but my turning point was when my family called an emergency meeting. My mum came up from Somerset, My Dad from Manchester, My brother and his wife from Brazil (they were visiting anyway) and Kurt and I from Bedford and we spent the weekend in a barn near Towcester. I felt so supported it was amazing. One evening my brother turned to me when it was just us and asked me what was going on and I simply said "I hate him" and I cried. For the first time I acknowledged the feelings I had suppressed about Kurt and the huge impact it was having on my life. Everything that was happening around me and the control he had on my life had lead to me being bed/house bound for 6 weeks... that was my coping mechanism. That was how my brain and body was trying to make sense of it all and tell me that something wasn't right. I had lost all control over who I was as a person and this was reflected in my seizures. I also realised I couldn't leave him as I didn't have the confidence nor could I see myself up and leaving a man that needed my help. But I knew from that moment I really did hate my husband and I had hated the person I had become because of him.

At that point I started to get control back of my life. The seizures calmed down but I still had them daily, I just learnt to manage it better. After Kurt died I was ready for my huge crash. I was ready for the seizures to take hold of me and make me bed ridden again because of everything that happened, but they didn't and they haven't. I have not crashed. I'm not out of the woods, and the seizures are daily knocking on the door so I have put in a lot of work in my self-care to keep them at bay but I am so freaking proud to say that I have not crashed. I haven't spent hours in bed seizuring or paralysed because of him. Since Kurt has died I've felt like a huge weight has been lifted from my shoulders. No longer am I worried about him. No longer am I running around trying to work 50 hour weeks, look after a house, look after Flo, 2 dogs, 2 cats, be a wife, friend and then try and look after me. All of that while being suppressed into a person I couldn't recognise. If I have a seizure these days, its usually brought on by being in pain or lack of self-care (I will interject and explain that means eating properly, sleeping and keeping blood sugars on an even level).

I am so in control of my life right now that when I do have a seizure I am very emotional because I suddenly feel weak, vulnerable and out of control. I cry through frustration and disappointment within myself. My wellbeing is top priority at the moment and when something compromises that I do everything I can to fix it and stay on track to getting ME back and being true to myself. I hope, one day I never have a seizure again but for now, they remind me of the strength I have inside myself and the strong person I am becoming. My seizures no longer have a hold on me and what I've learnt from the past year, having had such a low moment with them, is that putting me first is one of the most important things in my life. I will always stay true to myself and at any point, if I feel that it is being compromised, that person or thing serves no purpose in my life. I will change direction to stay on my path of discovery.