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'My goal is to be able to walk to the shop and buy a loaf of bread'

Created:

7 March 2017

A year after being diagnosed with epilepsy, mum of two Katy Mann explains how her children have to push her round the house in an office chair.


Katy with daughter, Emily, aged five.

Almost exactly a year ago my life was turned upside down. I went from someone who could walk a couple of miles a day to not being able to stand up without falling. The first mistake I made was buying some trainers for Christmas. I had a grand ideas of running like everybody else seems to be doing at the moment. Of course the universe laughed at me and took away the use of my legs.

Verbal tics

Countless hospital appointments, vials of bloods taken, every test the NHS does and finally I was diagnosed with epilepsy. Atonic and myoclonic seizures to be exact. Atonic literally means loss of muscle tone so at any given moment my legs become like jelly and collapse. I have knees like a three year old with grazes and bruises all over. Myoclonic seizures are jerks, shakes, twitches, verbal tics and physical tics. Think Tourette's style for the verbal tics.

I have a  range of verbal tics. My personal favourite is “cock” which entertains everyone. I have two children – James age 9 and Emily age 5 and I tried to shout “Cock.....a doodle do” but had to give up on that one. I also shout “F....duck” a lot. Despite my best attempts my children have a wider vocabulary than I would like at this age.


Katy with Emily and nine-year-old James.

They are a couple of superstars though and help me with my condition. James stopped me from falling down the stairs last week by grabbing my hood and bumping me down the stairs on my bum. They are both fully trained on what to do in an emergency and know how to ring for help. They've had to grow up faster than I'd like but they are prepared for any scenario. I can't use the wheelchair in the house as it's too big so they push me round on an office chair with wheels.

Medication for life

So now I'm on epilepsy medication for life. I take Keppra which is most famous for "Keppra Rage" yes that is a real thing. Imagine a toddler tantrum in a adult's body with the odd bout of Tourette's swearing and movement disorder. It's not pretty.

A couple of weeks later I was also diagnosed with fibromyalgia. Add in my previous psoriatic arthritis diagnosis and I collect chronic illnesses like kids collect football cards. Fibromyalgia means I don't get into the final sleep stage so I don't get restful sleep. I can (and do) sleep all night and day and still feel constantly knackered.


Me and my mum - James with Katy.

Cooking - well that is fun. My previous cooking method was wait until the smoke alarm went off and then remember I had something on the grill. My current cooking methods are rolling around the kitchen on an office chair so I don't fall and putting a meal in the microwave. Nigella Lawson I am not.

'I won't let my epilepsy define me'

I see many posts on Facebook about people who achieve amazing things like 5k runs, Tough Mudder etc. My goal is to be able to walk to the local shop and buy a loaf of bread. Maybe a magazine too! Life goals right there.

So pretty much the only thing I can do at the moment is write and if it can raise some awareness of epilepsy than all the better. I am determined I won't let my epilepsy define me and I will have a normal life again. At the moment I am fully wheelchair bound but I will walk again once we have the medication right. I have overcome worse things than this and my children deserve a mum who can get out there and do things with them. When life throws things at us we have to find ways of dealing with it the best we can. For me that is finding the humour in everything and believe me there is plenty to laugh at! 

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