When I started this blog I thought I’d be able to update it regularly with posts about my ketogenic journey for epilepsy, recipes and resources. BOY WAS I WRONG!!! Blogging slipped down the priority list (but that’s ok because epilepsy management comes first).
This post is for adults with epilepsy embarking on the lifestyle with 3 top tips to bear in mind when embarking on this life changing journey & links to 3 recipes on my Instagram @riagoesketo @ananyariaroy.
The GOOD news is that the ketogenic lifestyle is still working for my overall wellbeing and still controlling my epilepsy – this month I’ll be one year seizure free!. It remains to be seen whether that’s the impact of the lifestyle or the medication.
The BAD news is that life has been a rollercoaster this last year and I’ve been terrible at blogging my ketogenic journey apart from microblogging on my Instagram accounts @riagoesketo (just keto for epilepsy posts) and @ananyariaroy (my personal account with a mix of posts including keto).
There honestly weren’t enough hours in a day to work (the load was the kind where you needed more than 24 hours in a day), eat, spend time with family, sleep, exercise, and I pretty much forgot about having much of a social life let along blogging.
My priority is staying seizure-free and keto is just one (major) part of a holistic lifestyle change. Stress and anxiety management is a constant battle and for me this last year post shoulder surgery along with numerous personal challenges on the relationship and work front has constantly pushed my stress limits – stress being my #1 trigger combined with #2 – lack of sleep. I’m pleased to report though that I’ve survived this last year unscathed although I’ve had a couple of auras and took my emergency pill on a few occasions. The lifestyle has taught me to be more aware of my body and I’m definitely more aware of my brain than EVER before! WIN!
So for those of you adults with epilepsy embarking on a new diet for your epilepsy, here are my 3 Top Tips:
- Be patient with yourself and enjoy the process:It can be tempting to feel like you need to research and understand everything straight away, get your macros perfect right off the bat, and so on. But take your time to absorb and learn about the lifestyle in your own time (do your READING, don’t just rely on YouTube).
It is unlikely you’ll learn everything about the lifestyle let alone test the impact of the lifestyle on YOUR body in a month – give yourself time to learn, play and adapt – enjoy the process.
- Listen to your body and the different types of dietary therapies used to treat epilepsy:Although I’ve been on the keto lifestyle for nearly 1.5 years, I have by no means been consistently in ketosis. I do have ‘cheat days’ but this doesn’t mean I load up on sugar, I still opt for the healthier low GI options during cheat days (which also tend to be during my period.)
I’m a strong believer in sustainability and balance and ‘finding what works for you’ at the end of the day and found that for me it was a combination of mostly ketogenic combined with low GI on certain days seems to work.
View the Epilepsy Foundation website for more on Dietary Therapies.
- Don’t have #FOMO! It’s more than just what you put in your mouth
(I personally think the ketogenic lifestyle works best in tandem with other lifestyle improvements. Factors that could improve outcomes might be e.g. sleep, time with family and friends, work-life-balance, exercise and so on.I strongly recommend taking the time out to assess your seizure triggers, find out what lifestyle factors could minimise them, review and prioritise what’s important, and if necessary, adapt your lifestyle as a whole.
When prioritising it will probably mean something is sacrificed in the quest for better health, and for us millennials there is always a major #FOMO – but the end result will always be worth it – seizure freedom!
Bonus tip! (And one that I personally struggle with)
It goes without saying that you should be making dietary lifestyle changes for epilepsy under your neurologists supervision and ideally with a ketogenic dietitian, but the reality is that there are probably many who are doing it without either. (I personally had to wait 8 months for an appointment).
Although I am technically under a ketogenic dietitian, follow-up / communication has not been great – largely on my part as it is taxing and a lot of work to submit food diaries, monitor your blood, do routine blood/urine tests etc. A lot of the hard work falls on the patient which is paper based. For an epileptic that can add up to a lot of brainpower and physical energy in addition to daily life and I for one find it quite stressful and draining. Give me an app any day please. (Rant over!)
Nevertheless it IS an absolute necessity if your goal is to manage your epilepsy (or for any medical condition) – please do it under supervision of a health professional as there ARE side effects to the lifestyle.
P.S I write this blog a few days before a milestone “Holidate”! It’s the first holiday I’ve had in a LONG time and the first time in a long time that I’ve gone somewhere without family of some kind as well. I’m completely throwing myself out of my comfort zone. The last time I felt this out of my comfort zone was 9 years ago! Getting my priorities straight and giving myself a break!
I hope to post more frequently and prioritise this blog every fortnight! GOALS!