It was amazing to see my friends from Australia yesterday. I really enjoyed the catching up we did and it was lovely to see them well and hear all about their travels. However I am paying for having a good fun day yesterday. I didn’t go mad yesterday, I was really very slow in what I did as my head was still in quite alot of pain as were my joints. However I pushed a little and made it to talk and have a cuppa coffee. 
Despite this and being careful and mum doing the preparations and still taking my medication today I am in agony. The pain in my head is much worse, i ache from head to toe and Ive already had 2 seizures today and I think its pain induced. The cluster attacks are more than yesterday and the day before. Im really struggling. Im tired too as last night I was woken many times in pain. After taking my pain meds the sleep is not what I call real – its forced and drug induced and i can still feel the odd stabbing of pain despite being asleep. Its hard to describe.

However was it worth it? Yes. I cannot stay locked away in a darkened room all my life. If i have to live the next however many years of my life like this then Id rather push the boundaries every now and then to do something great than not.

Fun in my life seems to have a price. No matter if  it be having a seizure at the titanic ball or being in more pain than usual because I did more walking or more of whatever. The price is normally paid by mum moaning about how I shouldn’t have done (fill in the blank here) and me saying I would rather live my life and push the limits and pay the price than not have the life or experiences at all.

I think mum can see both sides of the story – or I hope she can. I hope she knows that I don’t do any of these things to annoy her or cause her trouble and Just because I do something she doesn’t agree with it doesn’t mean I think any less of her or do not love her. its not. It because i want to try to be “normal” (whatever that is). I want to live life rather than spend it locked away. 

I love mum dearly. 

You only get one chance at life though and I plan to live it to the fullest I can, and yes I will push the boundaries the next time I want to experience life. 

Don’t loose out on life, you only get one chance and it’s too short for if’s, but’s and maybe’s. 
go enjoy what life has to offer.