Blog 90: Sudep action day 2019

#5forepilepsysafety ​

This year the message for SUDEP Action Day is a simple one. Take 5. Whether that be five minutes to educate yourself about SUDEP, five minutes to share information online, five minutes to contact your MP, or 5 minutes to make the decision to fundraise, campaign or raise awareness. It’s not much to ask at all when you realise that by taking five you may just save someone’s life. 

Here is my input to #5forepilepsysafety. I am writing this blog and will ensure I share at least five posts on social media for SUDEP Action Day, hopefully educating and spreading a little awareness. On a personal note I am going to sit down and look at my own epilepsy and work out if there is room for improvement in my care. It is so easy when you have lived with epilepsy for a long time to forget to take stock of it all (especially when it is fairly well controlled) Am I getting enough sleep? Can I reduce my stress levels in any way? This campaign is not only about sharing awareness but also about looking inwards and ensuring you are doing everything you can to minimise your own risk of SUDEP. 
 
When I saw the campaign this year it really got me thinking and I decided that I was going to do two things. As I said the first was awareness related. I was going to write this post and I am going to share lots of facts etc on social media. The other was a bit more personal, it made me sit and think. So often lately I share stuff in the blog and work on awareness, but I don’t always look at my own journey with epilepsy anymore.  
 
One of the things SUDEP Action try and highlight all year round is to look at your own risk factors because seizure control is the biggest way to reduce your risk of SUDEP. It really hit home with me, maybe because of Noah? Maybe because of the fact I realised life is short. So today I am about being honest with you all and making sure you do the same with yourself. 
 
Am I getting enough sleep? No. 
Am I exercising as often as I could be? Again no (exercise has always helped me personally control my epilepsy). 
Have I forgotten to take my meds? Yes. As a busy Mum I am so often running about after others that I will be honest and say there have been days I have forgotten. 
As a teenager have you been out with mates/out for a drink and forgotten when you got home to take medication? We have all been there, but it’s important we don’t make a habit of it. 
Have I had more alcohol on evenings than I think is sensible with my epilepsy? Yes. 
So, for me, what started as a project to help SUDEP Action Day has actually turned in to me really looking at my own health. I appreciate this list doesn’t make me sound like the best role model for anyone with epilepsy but its about being honest and about real life, and that sometimes we all slip up, or don’t always take the best care of ourselves.
 
So what have I done about it?
 
I have set alarms to make sure I take medication, and rather than turning them off and carrying on with what I am doing I am making sure that I stop and do it when that alarm sounds. I have gotten back into swimming on a weekly basis, ensuring that I am physically healthy. It also means I sleep well as I am tired from swimming. Sleep deprivation has always been a big trigger for me, so this is so important.  I am trying to get to bed at a decent time or making an effort to nap when I can if I am tired. I am not saying it is always possible but if I at least try then it’s better than no attempt at all. I am now making sure that if I know I am going out I try and take my medication before I go where possible, so I don’t forget late in the evening, and I am limiting my alcohol intake. 
 
It took this campaign by SUDEP Action to make me think of myself and identify my seizure triggers and therefore what were my risk factors. I also did something I haven’t done for a very long time and discussed my medication with my epilepsy nurse. It ended in the agreement that we were not going to change anything, but it was good to sit and discuss options and why I was on the best combination for me right now. I also did something that I am terrible at doing and took on board some advice he gave me. 
 
My own life is very stressful at the moment and he knows me well enough to know it means I go looking for an outlet, normally by doing something a bit crazy (like a marathon or 100KM trek) and he advised me very gently to not throw myself into anything new for a while and for once I have listened :) I am currently 19 months seizure free and if I can help it I’d like it to stay that way. 
 
WHAT IS SUDEP? 
 
SUDEP is when a person with epilepsy dies suddenly and prematurely and no other reason for death is found.
SUDEP deaths are often unwitnessed with many of the deaths occurring overnight. There may be obvious signs a seizure has happened, though this isn’t always the case.
 
Epilepsy, like other long-term conditions such as Asthma or Diabetes comes with certain risks. If left unchecked these can become very serious and can cause some people to die prematurely; so knowing about them, and understanding how to reduce them where you can, is important. Unfortunately, a number of people with epilepsy do die each year. 21 people with epilepsy die each week in the UK alone (over 1000 per year), but this number is likely underestimated. Up to 50% of these deaths are due to Sudden Unexpected Death in Epilepsy (SUDEP).
 
But what can you do? SUDEP Action have kindly provided some ideas of how you can get involved. 
TALK 
Get online, share information, share the key messages and posters. Use the hashtags #5forepilepsysafety and #SudepACtionDay2019, can we get it trending this year? 
LEARN 

• Take a look at the http://sudepactionday.org/. It is full of useful  information and advice: understanding your condition is a powerful step to reducing risk.
  
• Talk to your neurologists, doctors, or nurses about SUDEP and any steps you can take to reduce your risk.
  
• Share the information with others, educate them about SUDEP. 
  

CHECK YOUR RISKS 
This was a big one for me, and one I think all of us with epilepsy should do on a regular basis. 
But what can you do?

• Use a seizure diary to help you keep an eye on your epilepsy: even if you are seizure free or your seizures are controlled, it can still help!
  
• Make sure you have a yearly epilepsy review with your health professional to check for any changes
  
• Check out the EpSMon app to help you keep an eye on your risks & how they may be changing (knowing about your risks means you can do something quickly if things change)
  
• Check out any national epilepsy guidelines for information to help you know the care to expect
  

CAMPAIGN 
Help SUDEP Action smash the stigma by talking openly and honestly about your epilepsy:
 

• Tell those around you how they can support you day-to-day or help during a seizure, find our seizure first aid poster here
  
• Write to your local MP – can they help you & SUDEP Action raise awareness?
  
• Share the #5forEpilepsySafety campaign images and downloads – could you create a display somewhere?
  
• Ask your local GP surgery, epilepsy clinic or epilepsy group to display leaflets on SUDEP and epilepsy risks
  

FUNDRAISE
Would you be able to take #5forEpilepsySafety and organise or be part of a fundraiser this year on SUDEP Action Day?
 

• Get those running shoes on and take part in a sponsored race
  
• Not afraid of heights? Why not take part in a sponsored bungee jump!
  
• Prefer to find inspiration from GBBO? Get your bake on and hold a bake sale to raise funds
  

 
For me I am not in a position to take part in an event at the moment, but I have made the decision that the next five times I am out and go to buy a coffee I am going to match that amount and donate it to SUDEP Action. It is all part of #5forepilepsysafety. Again, such a small thing but one if a few people do it will make a real difference. 
 
I am so grateful for this year’s campaign because it has made me stop and reflect on my own health, and if everyone else does the same we will be well on our way to reducing the risks and hopefully reducing the number of deaths from SUDEP. If you have been affected by anything you have read or would like some more information or support please visit https://sudep.org/ or get in touch with the amazing SUDEP Action who will be more than happy to help. 

Contact me:
Twitter/Instagram: @fairyfaye1986
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