From wash night to pork scratchings
17th January 2016
Today we went out for lunch. Someone questioned me being faddy about no bread with my burger, having a green salad instead of coleslaw, checking whether the mayo was full fat, and drinking black coffee not cappucino and having water not alcohol.
Yesterday we were with a group of people and all had packed lunch. A friend watched me tuck into sausages, cheese and pork scratchings, followed by mint tea and a few squares of dark chocolate. “My sort of diet that” he said. But turned his nose up when I said that there would be no pastry on his pork pie, no breadcrumbs on his scotch egg, no bread with his cheese and tomato sandwich, no crisps and no cake.
This is a typical weekend out, with people you don’t normally have meals with, when you are being treated with ketogenic therapy. My husband has a great response to this – “but it means that she can drive, is healthy and I get to have a pint”
Student house. Monday night is washing night. A few people come to our house because we are the only ones with a washing machine – actually a twin tub, but a luxury compared to the launderette. High jinks lead to a pillow fight, which leads to a fall backwards against a wall which leads to concussion. A difficult 12 months later, a new boyfriend who recognises some problems and a diagnosis of epilepsy follows. A life of medication begins.
I stop driving and sell my beloved little car. I complete my training taking 2 attempts to pass my finals in a fug of carbamazepine.
I have my driving licence back. Continue with Tegretol Retard.
I learn to live with spells of feeling “odd” but often they are put down to being a virus or ear/balance problems. Occasionally I get a vague sensation of a smell, but no-one seems to understand what I’m talking about. But I remember having it in my teens around times of feeling tired, and sometimes fainting. And I have a strange feeling in my hand where it seem to be very large compared to my arm, but when I look it is actually the right size. Very disconcerting, but no-one seems at all worried, so I stop telling anyone about it
I have been married for 22 years to that boyfriend who recognised my epliepsy. We have 2 children aged 19 and 14.
I wake up one morning and know something is wrong. I can remember trying to tell my daughter that something in my head is wrong – headache, dizziness, vagueness, bitter smell. I know this is my epilepsy. Partial seizures return with a vengeance. I have a GP who seems unconcerned – just stop driving. I remember little from the next few months. I try to carry on working as a teaching assistant, but I can’t remember pupils’ names, teachers’ names, information, timetables. I can’t read books, newspapers, remember tv or radio programmes. I can’t run the house, garden, but I can manage to walk the dog. He definitely walks me home sometimes – I frequently don’t remember getting home. I go missing, I getconfused, angry, depressed and isolated. I am asked not to walk further than our local area on my own. My GP doesn’t think it necessary to do a hospital referral initially. I don’t have a consultant after years of being apparently seizure free. Because I’m not having generalised seizures I feel I must be imagining it, that I am a fraud, maybe I have dementia. Somebody tells me that I don’t have “real epilepsy” because I don’t fall down, shake and soil myself.
My husband changes jobs to be nearer home, our children have their lives turned upside down.
Eventually I see a neurologist and I start months of tweaking different amounts and types of medication. There is some improvement over the next 18 months but not enough. I have to stop seeing one consultant and my GP forgets to do the referral for a new consultant. Although my job has been kept open for me I eventually resign.
Then something lucky happens. I damage my knee getting out of a car due to being confused and unbalanced during a seizure. The week after surgery I see my GP who is blunt enough to tell me that my knees have early arthritis and that I’m overweight. Maybe I should try a low carb high fat diet. It’s very popular with Iron Man competitors and is a great way to lose weight and feel well. He’s had success with patients with Type 2 diabetes. I am sent away to research it and if I’m happy, to give it a go, but phone him if I have any questions. And because of this I discover Ketogenic Therapy.
With support from Matthew’s Friends I start the therapy.
Within a few weeks I stopped getting my funny smell, and my hand stays the same size. Within 2 months I could start reading a book again. I felt more involved, more aware, I gained confidence to go out on my own again, and life improved for the whole family.
It certainly wasn’t easy. For the first 3 months I moved into the kitchen with scales, calculators, note pads, small pots and cookery books. I weighed, calculated, measured, stocked up the freezer and challenged my family to try new foods. I went everywhere with a lunch bag full of pots with stickers on, and small scales. We all got over the embarrasment of asking for details of what was in items on menus and people looking at our table and judging us on my “faddy” diet. Our elderly parents have struggled to understand, but enjoy seeing me so well. My Mum gave me a jam doughnut one day because it is high fat! My Dad was delighted when he got an extra helping!
I have learnt to love the fat on meat, previously something that I would have turned my nose up at. I can make my own mayonnaise and hollandaise sauce in just a few minutes. We buy what seems like mountains of broccoli, cauliflower, kale, spinach, salad, avocado, butter, cream,cheese, oils, vinegars, oily fish and fatty meat (pork belly!!). Dark chocolate is essential, and a few blackberries. And rhubarb – the best pudding ever when stewed and topped with cream.
What have I adapted? Cauliflower turned into rice. Cheesy broccoli instead of cheesy mashed potato. Lasagne made with aubergine instead of pasta, soup with cheese as a thickener instead of potato, pancakes made with almond flour, pork scratchings instead of crisps, homemade chocolate mousse instead of chocolate sponge pudding, cream in my coffee, flavoured teas (earl grey, fruit, green tea, or even just a slice of lemon in hot water). Stews without carrots, but with braised fennel as a vegetable.
What do I miss? Mostly I don’t, I’m determined not to. Occasionally the sight and smell of French bread, honey, jam, pastry, cake and porridge be challenging.
And travelling can send me into a panic about whether I can get the correct food.
I have learnt that it is worth having a teaspoon of something that I really want, and savour every bit, rather than get upset watching others enjoy it. This is the trick to sticking with Ketogenic Therapy. I don’t deny myself anything. But every gram of Carbohydrate that I have is calculated. So if it is a teaspoon of stuffing with Sunday lunch then I choose not to have yogurt for pudding. I might have a latte as a treat when out with friends, but n0t have that extra square of dark chocolate after dinner. It is all about choice.
6th July 2015
I have been seizure free for exactly one year and the DVLA have said that I can have my licence back. When I handed my licence in 31/2 years ago I decided that there would be no point in missing being able to drive. But that didn’t stop me getting upset with people that would ask me how much I missed it, or said what a shame it was that I couldn’t drive. Then they would point out all the things that they would miss if they couldn’t drive.
Once I did start driving the sense of freedom and independence was enormous. Only then I could I acknowledge how difficult life had been without it.
Although I miss some foods and going out for meals and looking at a menu has been known to make me cry and be hungry with the memory of favourite foods I would not change my Ketogenic life . This life is not as regimented as it was two years ago: I no longer weigh and measure and count. I have more carbohydrates than when I started, still aiming to have less than 60g per day and I regularly check my blood glucose and ketone levels. I keep an eye on my weight. I know if I have had a few too many carbs as I become very tired. I live carefully and give the diet the respect that it deserves. My consultant has asked that I don’t change the diet or my medication for 2 years, and I am happy with that.
I still have some memory problems, and learning new things remains a challenge. I cannot return to work as a teaching assistant but do a few hours voluntary work. I help care for our elderly parents again – something that is important to me. I have learnt to manage my life with the skills that I have, with lots of lists, reminders on calendars, texts from friends and family. Apparently the seizures have resulted in me becoming more mellow and not as feisty. Me? Feisty? How dare anyone suggest such a thing.
But I can eat fantastic food (eat fat, be seizure free and lose weight!); I can read a book and sometimes remember what I’ve read and I can watch TV and enjoy it even if I can’t remember that I’ve seen it before; I can go to the garden centre on my own when I want. I can take the dogs where I want to walk them. I can take part in family life. I have lost nearly 2 stone. My blood cholesterol levels are better than when I started, I am healthy, I have energy, we got a puppy to go alongside our old dog (never again!) and I have even managed a short holiday on my own. And my knees are much better!
And I can drive my husband home from the pub.
Thank you Ketogenic Therapy, Iron Man GP, my supportive, understanding husband and children – Paul, Helen and Jonathan, and especially Matthew’s Friends. This story might be very different without all of you.
19th January 2016