TONI’S STORY

BY TONI MORLEY

So it’s now almost two months since my diagnoses and I’d love to say that I’m all healed but that would be a lie, I am better than before but also acutely aware that there is no magic wand and it’s gonna take time.

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In these couple of months I have fluctuated between being ashamed of the person i had become, frustration, suicidal thoughts, depression, and acceptance but I couldn’t of done any of this without some amazing people supporting me along the way.

There was a turning point for me when I decided I could not live as a prisoner of my brain, body and home and so instead of not doing things because of my symptoms I started to find ways around them or at least to work with them.

I became more aware of triggers like travel and of change in body temperature, twitching and rolling eyes and the sensations in my back which warned me of an impending seizure and slowly felt that the me I know was not gone forever she was just trapped and a little bit lost.

When the low mood and suicidal thoughts got to much I looked at my kids and my other half and realised I needed to change so I started back on the alternative antidepressants my gp had prescribed.

I was aware that my seizures could and would happen anywhere so when I went out I was always actively looking for the nearest disabled toilets so I could lay down until it passed.

My speech problems were frustrating but I started carrying a notepad and pen too communicate with people and on the occasion I forgot I could always use my text to speech app on my phone.

I started to fight back and unleash my inner tiger.

I was not going to be defined by my condition I just had to learn how to live with it.

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On my mum’s suggestion I got a foldable picnic rug that I could carry with me when out so if a seizure came on at least I wasn’t also having to lie straight on a dirty toilet floor, I ordered a radar key as some disabled toilets need these to access them and I ordered myself a medi-alert bracelet so that if I didn’t get a warning and had a seizure in a public place at least people would know what was going on.

I started going to speech and language therapy with a lovely lady called Wendy and although we don’t really do much in the way of exercises she allows me the time, patience and space to express myself without judgement – she listens and is not dismissive of me and in the absence of the mental health team which I was promised on discharge she helps.

Being currently signed off as unfit for work I have started doing diploma’s in crochet and sewing.

I have started to reread the cemetery of forgotten books series ready for the final instalment which comes out on the 18th, and fell in love with the shadow of the wind all over again.

I booked in for my tribute tattoo for my second angel baby and when the time came I sat like a trooper without moving and reading the angels game by Carlos Ruiz Zafon.

I kept listening to my music and a month after diagnoses was finally able to sing along and I was ridiculously happy like a baby who has just mastered how to walk!

On the encouragement of friends and family I got back on my bike – stationary in my front room attached to my turbo trainer and I didn’t stop smiling for the rest of the day. I have found now that it actually helps as it forces me to stretch my back out especially when on the drops.

I went for my smear, which was incredibly traumatic as the last time i had a speculum up there was when they pulled out my baby in his sack, and after encouraged others to get theirs done.

I bought myself a new pet rabbit and named him Giando after one of the nurses who looked after me in neuro.

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At the beginning of all this I wrote a post on Facebook saying I felt like a caged bird who’s wings had been clipped and could no longer fly, my mum’s response went something along the lines of “your not a bird, your my tiger and tigers fight” she was of course right.

I am far from healed, I still have regular seizures and although I can talk clearly at home or with my mum and very close friends and family the minute I am faced with having to talk to others and strangers I am back to stuttering again – it’s like someone has flicked a switch and all my hard work is gone!

My back is still agony, if I travel to far or walk for longer than an hour at a time I feel like a cripple, if I turn to quickly or when I have a seizure I can hear and feel my lower back crunching.

If there’s too much sensory stimulation my eyes start twitching and rolling accompanied by odd spasms usually in my right leg.

I have good days and bad days but like I told my brother robin yesterday sometimes your strength is in showing your weakness.

I still take a lovely cocktail of medication mostly for pain relief and without it I couldn’t function.

I am a tiger and I am fighting but at the moment I feel more like a butterfly who is slowly emerging from her cocoon.

I didn’t write these posts for sympathy I wrote them to raise awareness of a little known condition that is life changing and can be debilitating so feel free to share them.


To learn more on FND and NEAD, please follow these links.

For more from Toni, visit her blog.