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Pushing boundaries

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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. 


Robin Hood Country

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I am just going to say that the holiday blogs are going to be just that until the thursday. Yes I had seizures during the week. some big ones, lots of little ones but for once I want a little bit normal stuff on here just a week. 

So It is Sunday and sherwood forest was calling… Well not literally but we were off to sherwood forrest. This is something Ive wanted to do for more years than you can imagine.. It was on my bucket list and something that i read as a child and said then “i want to go there” ive said it with ashdown forrest too (the 100 acre wood for those of you that do not read winnie the pooh novels).

Anyway we were all ready (ralph, Linda, Mum and me. Jade couldnt come which was a shame but we all piled in the car). Ralph I now know is a ex chauffeur which makes total sence now as he took us the long way round to show us the beautiful sights of the area. I was literally stunned when we came across sights such as this:

We arrived at Sherwood forrest… somehow it was not how I imagined. This is not a good or bad way just completely different than my pictures I had in my head. It was also alot bigger. It seemed ages before we got to the car-park and then we had to walk a long long way to the Major oak. The major oak was stunning, though tainted by supports that kept the branches from falling down in storms. It seemed so sad that something so naturally beautiful was now subject to being held up by man made structures. However it was still beauty, Just like everything, beauty lies within.

There were other trees round the forrest that were “quirky” too 
This was my favourite 

on the way home we had a picnic in the grounds of a beautiful abby, It was like a dream, I had just visited the major oak and was now on the grass picnic and blankets and calm, peace, no grr’s nothing. seriously amazing all I can do is thank the people who made it happen because you will never know how much that meant.

Mum, Me & Ralph
Mum and I 

Me and my best friend 

By the time we got home I was exhausted, I ached all over from lots of walking but It was one of the most amazing days ever.

Confidence again?

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Well monday. I was sitting at home after sleeping on and off for the majority of the day. It was band practice night. I love band do not get me wrong but As always after a bad spell I was super nervous about being anywhere that there are alot of people and Im in this sort of space. hey ho. I went. All was fine but I felt exhausted and drained and it was so so cold but I enjoyed it all the same. 

The rest of the week has been a bit crazy.  I had an appointment at the drs re my neck being so so painful. So I went and I came home with literally a bag full of medication. It was a new dr who I handnt seen before…. Normally this is bad news as they are scared of changing anything without my consultants approval. This one was different though and very thorough. He went through everything – epilepsy – cluster headaches – my recent pain in my joints and especially neck – questioned me about my pcos which I don’t really take much notice about. Anyway I was sent for a ECG re going on theist resort pills for cluster headaches. I have had this ECG before but it came up with a problem and I wasn’t allowed to go on the pills. This time he thought it may be different so I booked in for the next day. ECG done and well yep there was a issue in amongst all this I’ve been trying to get my prescription for my emergency injections and after two weeks I still can’t get them. The chemist is now going to the manufacturer to see if they can get some. I prey they are here by my holiday. I can’t be without these things. It’s ok being about here cos I can go to the hospital but its not the sort of thing I want to do on holiday. 
Anyway here we are it’s Friday and I’m off to the drs again this time to talk over the new ECG and the probability of being able to take the new meds and to find out what the heck I going on with my heart. 
Life can be hard sometimes but I got to laugh and enjoy it when u can. I’m a bit excited today as I’ve treated myself to a camcorder! I’ve been using my phone a lot for film but its not very good so I’m hoping to be able to do some film and maybe add bits to the blog. Maybe do a vlog! Anyway I will have to work out how to use it first- may take a while! 
So apart from dr appointments and wires, injections and that this week has been pretty quiet. 
I have had only a couple of seizures a day and yeah that’s good for me!



So I’m mega excited about a few things  going on in the next few weeks. Firstly my friend is coming down this weekend again and we are going to sci fi by the sea! which if i can i will try video a bit if the camera arroves. then mext weekend the band I’m in is playing at a huge air show. The weekend after I am on holiday (my first in 5 years!) and the weekend I get back I’m going to a ball ! All I have to do is get through it all and have the confidence in my brain to enjoy it all. 

Easier said than done but I am so excited!