Daily Archives: June 16, 2013

Weekend & Confidence boosting.

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Well last week I was on the verge of breaking down, this week I hope things are on the up. My weekend started Friday when I had an appointment with my Dr about my ECG and the probability of me going on the new pills… Well Due to the ECG and the “unlicensed” meds The answer was a No – However he will prescribe them if my London consultant says yes. I have an appointment with him on  22nd. Fingers crossed once again. 
For now Im stuck with the situation im in. Medication making me tired and sleepy if I take it – having seizures and being in pain if I dont. Its a conflicting situation. I have no choice with the seizure meds but I try and hold off on the pain killers as long as I can. The likes of Codeine, ibuprofen, Diclofenac and some other injection that I cant spell and morphine are not nice meds to take.

After the recent events Ive been really like a recluse an not wanted to go out much for fear of seizures as they have been quite bad… except the drs of course. 


However This weekend My weekend started friday. 

1) My Grandad is out of hospital. Its a long story but he went in for a knee replacement last year which went teribly wrong. His leg had to be straightened, a year later and the work they had done had broken and crumbled and so he needed another op to repair his crumbling bone. He is now out of hospital with a straightened leg and two rods and bolts through it and in plaster however it is fab to have him out as he normally ends up really poorly in hospital with infection…this time, so far so good all is ok. This also means mum and i do not have to live up there to be with nan. Not that I mind but it is one less hassle of taking all the necessary things up there. And they are both happier now they are back together. 

2) My Camera arrived. Ive been asked to do alot of blogs and vlogs recently and my video camera I previously had (the Flip HD) was not up to the job, plus its hard to video yourself when you cant see what your video’ing. Now I hate videoing myself, moving picture is fine but if I have to talk im not so happy however I do it for Epilepsy awareness so Im trying to get over my fear and improve my self confidence by doing this. Also I need it for the next piece of good news. 

3) Friday I got the news that I am reviewing things for this new company IWBYE which stands for “I will beat you epilepsy”. I am honoured in being the first person ever to receive one of their tshirts designed by them and I will be doing reviews of their products via this blog and my youtube channel (tiggerifficjem) please go take a look at my channel and subscribe. It is totally free to do so and you will get a email when I upload a new video. Also the more subscriptions I receive the more knowledge gets out there and the more I will be doing. 

You can visit them at this address

Click here for IWBYE

4) This weekend was Sci-Fi weekend. Saturday Lara came over and we chilled out, she visited me at studio Tigz  (my little craft and relaxation room) and we had a good time. I re sealed her dreadlocks and we done nail art In preparation of sci fi day. I may look into making some dreadlocks as apparently Lara thinks I would be able to do it and there are few people to get them from. So I will be looking into that when I get back off holidays. Ive got too much to do until I get back.

5) SCI-FI DAY: Yes today Is sunday. I am sitting on the sofa, in my pj’s totally exhausted. I have been here since 2 o’clock this afternoon! Today was the first time I’d been out properly since being poorly again. I wasn’t feeling my best when we left but I took meds and felt I could do it. With Lara by my side I always feel happier. She is one of my true best friends who Ive known for many years and It doesn’t matter where in the world/country we are we will always make time for each other  Anyway so Im exhausted but it was all worth it. Lara came over early and we got ready, Hair and last touches of make up – not that mine was anything spectacular but we both felt better – I wore the Superman (girl) tshirt that lara had brought me and we were off. We arrived at 11am and had a look round, From the outset we could see many characters and costumes and stalls and music and people – there were hundreds of people ! We handed over our tickets in exchange for a hand stamp
The Giant Ghost buster marsh mellow was hard to miss, There were lots of lovely people there including those that helped organise and set this extravaganza of sci- fi up. We walked around the first few stalls and then came to the Activity box stall. It was really good to see Abi and Barbs as I’d not seen them for so long. Lots of hugs all round and I felt happy to be out. My confidence was growing. I left my oxygen behind the stall as It is really heavy. We looked round a few more stalls until my legs couldnt carry me anymore so we went back to the activity box tent for a reset and chat. It was great to introduce lara to other people in my life. I like it when everyone knows everyone – I guess thats the country person (as my grandad would say) coming out in me. I went to another stall on the next look round that done face painting/temorary tattoos’ I chose a nemo design an had it on my cheek. I love the Finding Nemo film – especially the quote “just keep swimming” i really believe that if i just keep swimming in life I will get through this. 
 The day went on and we took lots of photos and video (i tried to do a scilent VLOG for my first one to get my confidence up so I will be sorting and editing that in the next few days and it  will be up on you tube. 
My head started to get worse and at 1:15 I called mum to come and get lara and I . Lara had to go home to Essex too so she had a long trip ahead. I came home and apart from editing a little video and photos I have been resting. I face timed with my other bestie Linda which was fun… I love facetime. We are both getting really excited now about me going up to visit soon. I cant wait. Lots ot do and fun to be had… Of course I will be bloggin! 
Nite Nite for now and Thank you to all those people who made today possible and to those who made me feel more “normal” 
XXX

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!