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!

Sleepy day- spoon theory in practice

It's so easy for me to get swept up in a sea of dark thoughts on bad days so I pushed myself through it today, ignored facial paresthesia, had a shower and went for a walk. I felt dizzy many times while walking but made sure I was safe and carried on. A lot of days this isn't too much of a problem but I was clearly tired. I realised I'm not quite ready for work because that short walk felt like running a marathon and I've been struggling with headaches and tiredness today. It was great to be out though and I stayed away from busy roads- my kryptonite, saps my energy! On a good day I can do a lot but it's still so unpredictable and more than a bit frustrating!

I feel rushed by society to push myself back into some kind of work. I'm desperate to do it for my own dwindling self esteem too but I don't know what to do. I'm going to investigate tomorrow and see what help I can get. I don't mind what kind of work it is so long as I can manage it. 

I walked to the spa at The Berystede Hotel today to relax which helped but I was almost stuck there as I was so exhausted! I'm sure I will have a lot more energy tomorrow to investigate work options as I do feel ready to ease into it. I was thinking of helping others with neurological disorders and diseases but I have decided that I would prefer a distraction. I have had days where I feel more like the old Andrew so that is very encouraging. 

I enjoyed this 'relaxation room' today. It helped a lot. 

Beautiful day

Today was a really beautiful day and I'm sat reflecting. Every day can be so different but for whatever reason I had a great day today and was able to sustain my energy levels well throughout the day.

I went for a lovely walk in the quiet bit of Windsor Great Park that nobody goes to and I took my keto snacks with me that I bought online from the Natural Low Carb Store in case I got hungry or tired. My head felt heavy and my ears felt a bit weird at times but these things are small compared to the symptoms I experience normally. I get so many invisible symptoms that feel almost impossible to explain so I don't know why I still bother trying! I've decided I should add pictures to these posts because they would be pretty boring otherwise! Here is me in the park in the beautiful autumnal weather. People hate the chills when the wind picks up but cooler weather is great for my head for some reason! 

Being proactive

Today I had the most awe inspiring meeting with consultant neurosurgeon Mr. Kevin O'Neil. It was very refreshing to openly discuss new, promising alternatives to chemotherapy and radiotherapy and to learn about more advanced surgical techniques along with prevention strategies to at least slow down tumour regrowth. I was also fascinated at having my blood tested for Biomarkers and advanced scanning methods which I have never had before. 

As a result of all this I will be moving all my treatment to Charing Cross Hospital and Mr. O'Neil is very keen to get me on the ketogenic diet trial coming up soon. 

Me and my head aren't always friends

Migraines have been pretty bad all day but seem to be improving after a long day in bed. That's my whinge for the day. I'm thankful I have so many positives despite that so I won't dwell on it. I'll be back to looking like nothing is wrong if you see me out next even though I constantly feel as though I'm on a boat. Hopefully not a sinking ship just yet!

Pain pain go away, come again never

I've just had the most horrendous migraine but it seems to be getting better now after 4 hours resting in a dark room. 

I seem to get all the 'rare' invisible side effects of meds and cancer treatment so the pain and discomfort is largely unseen. If people knew about my bad times I think they would be so shocked at how I can go for spells where I seem to be relatively ok with a smile on my face. 

Next time I'm out I'll get the usual 'you're looking well', and I'll just smile and say thanks as I usually do. The reason I am so happy when I feel relatively good is because the bad times are and have been really bad. At this very moment I feel very happy because I'm relieved the pain is subsiding, it was terrifying. 

If you see me out you will know it's a relatively good day because I simply don't go out at all when it's not. I get migraines often and my neurologist, oncologist, GP, and even the ENT specialist (it affects these areas too) say there isn't much I can do about this. My last scan was stable and the blob of whatever it is only measured about 12mm so these migraines I've suffered with for a year and a half could be anything. 

Lack of posts

I apologise for the lack of posts recently, to be honest I had a lot of times where I was thinking very negatively and I wanted to wait until I was mentally in the right place to continue to post about my experiences. I also don't think I'm that interesting most of the time but I hope it helps some people to read this. As you can see by my last post I had an 'interesting' partial seizure earlier and now I'm in bed feeling quite tired all of a sudden. Last week I went away with an amazing, inspiring group of other cancer patients in Bournemouth thanks to Youth Cancer Trust and it taught me a lot. I was also very lucky with the timing because I seemed to have more energy than usual. I'm guessing some of that may have been a change of scenery and the excitement of meeting others that were not only lovely people but also people I could really relate to. I miss them already but hope to see them again sooner rather than later.