Friday 24 October 2014

Love independence, hate the risk

There is so much I could write about this issue and it has dominated my day so far. I've been trying to push myself out of my comfort zone lately while trying to stay safe at the same time. I feel as though I push myself right to the edge at times but then I take measures to stop just before I get there. This is what life with 'reflex epilepsy' is all about for me. I get 'auras' throughout the day and I avoid triggers to try and stop the progression into a full seizure. 

Today I felt disoriented when going for a walk and felt like I was floating accompanied by light-headed ness and impaired concentration. After I say down for a while and took my 'emergency snack' I was getting better and once I had arrived home I felt exhausted so had a rest in bed. I had really pushed myself walking for an hour in total with rest breaks but I did get some bizarre sensations around my craniotomy scar. It seems to be related to changes in heart rate, fatigue, blood sugar changes, and body temperature fluctuations so I've become a lot better at staying calm. If it was accompanied by intracranial pressure I don't think I would be as calm though, especially with my next MRI scan coming up soon! 

I buy my 'emergency snacks' from The Natural Low Carb Store, fitting them into my ketogenic nutrition plan. They have a fantastic blog too about low carb dieting if you ever want to read it! Great for epilepsy, especially if it's a ketogenic diet you are aiming for to control drug resistant epilepsy. If anyone actually reads this blog it's worth a look at the link below!

http://www.natural-low-carb-store.co.uk


The picture below provides some info about 'auras', it can be quite scary but I feel lucky to have them because I have time to move to safe areas or avoid triggers when I experience seizure activity throughout the day. Sometimes I get problems with words and facial paresthesia is a very common problem for me so that's when I know that I need to rest! 


I also got some new clothes today from ASOS for autumn/winter. I love understated style so I wear plain but classic, stylish clothes and scarfs. My hair is getting longer and curvier and is doing what it wants at the moment which is either hit or miss! It's great for hiding hair loss caused by radiotherapy as you can see below! 



I like my new plain black v neck jumper, it's so simple, yet goes with a lot of things.

I found a beautiful new public footpath today close to home but it felt a bit risky as nobody was around. I kept feeling lightheaded and thinking to myself that this wouldn't be a great place to have a seizure because nobody would find me if I needed help! The wooded enclosures are kept by Imperial College but you can walk through two fences off areas and it's really beautiful and peaceful. I adore nature and fresh air!












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