Tag Archives: Uncategorized

Stop and smell the roses !

Leave a comment

Stop & Smell the roses, It’s Not a Competition
Throughout our childhood, there is a strong focus on being the best at everything. mostley this comes from our parents ans peers who although they only mean to encourage, they create this thing where a person feels they need to be the best in sports – being picked first and being picked for the school teams. The best in class – getting the best grades; the best report card; the best places at the best universities. The best phone; iPod; clothes. The most popular. The most likely to succeed. I could go on… My point is, there is a distinct emphasis on where you were/are placed  in a imaginary or physical league table of your peers.
As we grow up into ‘mature’ adults…  And leave the world of compulsory education, we unfortunately continue this obsession of how we are comparing to another.
For those of us with disability or chronic illness, comparing ourselves to our able-bodied friends can be seriously detrimental, making us depressed and feel worse. 
So-and-so from high school just bought his first house.
Whatshername from university has just been awarded her PhD.
The guy down the road, he’s making 60K a year.
John and Jane from college are married, two kids, and are going on holiday to Australia.
Need I go on? I’m certain if your reading this as someone with a chronic illness you’ve said similar to yourself.
I’m certain you have replies to all of those sayings too. You haven’t been on holiday in years. Living in rented accommodation or with your parents! . You barely making ends meet, or living on benefits.
But listen to me…. life is NOT a competition.
The people we relentlessly compare our ‘failing’ lives to don’t have to live with these life-changing/ life limiting illnesses. You are a SURVIVOR, and have lived through experiences they couldn’t even dream of in their worst nightmare!.  You have the ability to help and support others in similar situations – no amount of education, or money, or fancy plasma TV screens can mimic that. You have knowledge of the health system, of treatments and hospitals, doctors and health professionals. All of your experiences are USEFUL, and while we may wish we didn’t have that pleasure, we can turn around the negative and use it for positive.
While you may see better things in their world than your own, jealousy is an ugly and unhelpful thing. Instead, why not use these  feelings to try and improve your own situation – IF you are well enough. So you can’t do this and that but we live in a world of computers and social media ! If someone told me 5 years ago that I would be a world wide advocate for epilepsy awareness I would have told you ,your mad. Yet here I am less than a year on from when I started speaking out about epilepsy, My epilepsy, sharing my life with you all. Before this I was scared, tired, upset and felt worthless. I resented epilepsy for taking everything away from me. Now although I’m still not happy (I mean who would be) about my situation but I have my own blog. YouTube channel, Instagram and all the other social media things. I’ve abseiled, started a lantern ceremony, celebrated purple day, raised over £720 in 4 months, been in the newspaper and am about to get published in a worldwide magazine… All in this short time. You have the power to show people life shouldn’t be taken for granted- the more people realise this the more people will enjoy the simple things in life like we do… Like I do. 
I appreciate being able to get up and out of bed, I appreciate every part of life when I’m conscious and able to see it, I appreciate being able to have a bath, I appreciate when I don’t have to take all my pain killers, or don’t have to be on oxygen, that all to me is freedom. There are so many things I appreciate that I know everyone else takes for granted and I tell you something, I feel I am more empowered to go forward in life: no matter how far I get in life. 
Living your life thinking you are failing in comparison to others around you, will ONLY set you up to fail. CHANGE your way of thinking. Challenge instead of competition – challenge yourself to improve what you have, but ultimately you need to love the life you live.
A good friend of mine told me that life is different for everyone and i was given this life by god because he knew i have the strength to cope with it.  Coping with illness and pain takes a lot of daily effort. Just as much – if not more than being in full time work or being a mum or anything anyone else is doing. It’s just a different strength. 
Life is not a competition or a race. Life is for enjoying, exploring and experiencing. The more you compete – the more of life you will miss. Go slower stop and smell the roses and enjoy the small things. 

More Stress

Leave a comment

Today is monday. I find out that when mum was shouting about how ill she had been sitting worrying about me yesterday whilst I was at the concert she was actually out visiting a friend and shopping!

Not much I can say about that is it…. however all that guilt i was feeling and being upset was for nothing!. Im pretty cross that she obviously lied – If there is something I do not do is lie to her… I cant lie i always end up laughing infront the person anyway or giving the game away but to lie to me about that so I would feel guilty about going out? thats not right. 
Well We agreed a truths yesterday so Im not going to say anything – inside though im saddened. 
The arguments are starting up about band tonight now… if its not one thing its another. I went to go down to my studio but then got told no… when questioned i got the well i will have to come down there ! this was not the idea… I have a buzzer system for down there so why is that suddenly not useful? basically I cant do anything unless she is watching – i am going mad.

Anyway I went to band and despite a struggle I managed it.
I will say im suffering for it a bit today but I have also been to the dentist today to have my “real” tooth put in rather than the temporary ! (remember a few blogs before my holiday when I smashed tooth during seizure). anyway nice new shinny tooth now in. it was a bit of a trauma though so no surprising my head aches.

I will leave you with this poem. 

A friend like me. 


Please don’t be afraid of me 
I want to be your friend.
and if you get to know me
your rigid thoughts might bend
Thoughts that i am different
from others that you know.
I really am no different 
and this id like to show. 
I live and breathe and laugh and cry 
i love to play and learn .
I sometimes do things differently 
which can cause some concern.
You see, some say I’m special, 
i guess this much is true
but if you were to ask me 
i’d say your special too.
We’re all  little different
no two are just the same. 
Its really something wonderful 
there is no one to blame
When things don’t go perfectly 
and people get confused
they say things like “poor girl”
and other terms they use. 
Its ok if you look at me
and may not understand.
Its ok if you touch me
and even hold my hand
My like has many obsticals
More than the epilepsy that you know
but thats not what i dwell on
Im me, thats all and so….
I know that things may not
always go to plan you see
Sometimes i may fall down 
but I’m not just the beast you see
Please don’t be afraid of me
or tell me not to do 
the things that make me feel normal
and make life worth living so…
Please learn to be accepting
i want you just to see
how truly great and wonderful 
a friend like me can be.

Hospital again.

Leave a comment

Saturday morning I woke up and the pain was yet again intense. I went straight into multiple seizures.
Drs say that Status epilepticus is the most dangerous state for epilepsy sufferes. It takes so many lives. A person with epilepsy may experiance this once or twice in their lifetime with the disease… So far Ive been in status over 20 times and now 3 times in 3 days. life is getting scary.

I ended up having the paramedic and ambulance out and remember waking up with a IV line in which is very unusual as people normally cant get a line in. I was in and out of seizures for over an hour and I woke up in Kent and Canterbury hospital. It felt safer to be at home hospital though. somehow I cant explain. When the seizures stopped I was taken to a ward and had to wait to make sure the meds were working. I was given lots of extra meds and then claire and her dad came to get us to bring us home.
I was supoesto do a gig that morning but obviousley had to cancel. However it was the ball tonight and I was not going to not go. I had determined face on! My friends were down and I had the dress, the tickets and the will power I was going to go.

My best friend Lara came round early and helped me get ready, she managed to turn my palor complection into a 1900’s lady! without her doing my hair and makeup i really dont think i would have got there it was exhausting and i wasnt doing anything.  We were all ready I couldnt wear my heels as i was having issues anyway but my dress was so long no one could see my sandal flats ha ha.

We went to the ball and had a fab time… I done some dancing with mark and the girls and we all had a good time. we even had official pics taken. The night went on and i started getting hotter than normal. My eye kept watering. We had just been given an award for best costume and i needed to sit down. 
I went and tried to find a seat, feeling weak and wobbly my head was pounding and i was all a bit blurred. I can remember Abi saying lets go outside and I felt cooler. I thought i started to recover a little and then that little sensation that I dread. I woke up on the grass. I can remember being told to squeeze hands and I think i did. i hope i did. Claire had honed pauline as arranged and we managed to get home. I knew I was in for trouble and I was right. That night when I got home and everyone had gone all hell broke loose and I was in so so much trouble. I just wanted to enjoy myself. I got the “you could have killed yourself for pushing it” well maybe i could but then If i dont do things im stuck indoors and then what is the point of living? none. Id rather die doing something I enjoy and love. 

Home & drs.

Leave a comment

I woke up friday morning with the most painful headache once again. My body ached from all the seizures and I was in and out of consciousness alot. I dosed up on medication and managed to get dressed and downstairs. I didn’t know but mum had asked the taxi driver to come earlier to get me home and he did. He was there at 11am.
I didn’t want to go but I did. I wanted to be around my own hospitals and Drs because I knew i was in trouble. The pain was so bad I was literally crying like a baby… it rarely makes me cry as ive a huge pain tolerance. I said goodbye to linda which was horrible, I love her like my sister and we have become so close… i hated to leave on this note where i couldn’t say or articulate words properly. I got in the taxi, surrounded by my pillows and slept as much as i could as that was the only time the pain was at ease… I say slept yet you never really “sleep” when in cluster phase… I was half awake and could hear a few things and could feel the pain but had almost put myself in a coma state to make the pain less (if this makes sense – cluster heads will understand).
We arrived home and all i wanted was to get my pussycat magick back from cattery.
I was still in so much pain but wanted to make sure magick was ok first. We went to the cattery.. i called his name and I was surprised he jumped up immediately and came to the door and started meowing… in fact he was constantly meowing until i gave him a cuddle… it was the perfect reunion.

On the way home I said to mum, I think I need to go to the drs.. We dropped magick off and got him settled and went to the drs (injections in hand) although given them mum has not been trained to administer and I was in too much pain to focus and hold a steady hand. we got to the drs but I collapsed in the waiting area and had a seizure. I was taken to a room and I had several seizures within the 3 hour time span we were there. My own dr was there (not that I knew at the time) but she was happy she had seen what happens as had not ever seen seizure and cluster headache before. (great dr i have!!!).

I was given an injection but it didnt work so the dr gave me morphine. I was still having seizures but when the meds kicked in they slowed. i started regaining consciousness in between and i managed to sit up. we got home somehow.

Great times and bad times

Leave a comment

The morning of Jades Prom arrived. We had fat club in the morning (well I was visiting with Linda and Jade – before I get any of you curse me for trying to loose weight – IM NOT)
I woke up that morning knowing the day was going to be a struggle. I took my extra meds and kept my fingers crossed. I dont know how many seizures I had before we went that morning but I was close to a big one before we left I know. Thankfully It didnt happen.
We arrived at fat club and i recognised alot of faces from facebook and people Id spoken to via Linda. It was Lovely and really friendly.
There was a display going on and I took a look.

2lbs of fat !

jelly and cream (or a pint?)

One of the ladys whom I talk to on facebook Pat gave me some harribo… Linda and I were going to try vodka harribo at some point but these ones were to eat too. I had some hoping the sugar would help. 

everyone was lovely. 
During the meeting I started to struggle – I had to result to oxygen but it was running out. We got home and I felt my head start to feel really bad. I took pills, my oxygen and headed to the sofa for a rest. 
Jade was due to have her hair done at 2pm. I wanted to document her prom for her… I had 1 hour to rest and get rid of this headache. Well I did rest but the headache didnt go. 
The next few hours were preperation for jades prom. I took so many photos just of her hair being done.. 
I then went and rested and I really dont know for how long…. when the pain and strange feelings get to this point time passes that is all. I think I slept a little but I dont know.

Jade came down… I was awake and she looked stunning. I grabbed all the energy I could and my cameras and started snapping. We went outside and took some beautiful pictures and then I was honoured to travel to the prom with her… I took more pictures too. I was struggling the whole way but I love taking photos and it was Jades big day and she was so pretty.
When we got home however I dropped the camera and tried to edit some pics. In the end I had to resort to bed but I never got there. I went into status epilepticus and dont remember much I remember waking uo between a couple of seizures and Linda holding my hand, she will never know how much that helped. It was weird cos normally I can hear alot more than i could this time… everything was too distant and too scrambled. I struggled as much as I could to get up and stop but the seizures kept coming. I was taken by ambulance to Grantham hospital and I woke up again in resus at Grantham General Hospital. I couldnt undersand the dr, and what I could understand he wasnt listening…. my case is quite complex and they never seemed to understand. There was one really nice nurse who helped. I had a few tests and they gave me some medication and i was told to sleep…. yeah right ok so i slept, and they would wake me up for blood pressure,.. so id sleep again and the bin would bang down so loud i ended up having another seizure. In the end once id recovered from that seizure I self discharged myself. we called linda and she came and got us. (THANK YOU SO MUCH).

in Grantham hospital

Cadbury World

Leave a comment

What girl does not want to go to cadbury world, the place where chocolate is made! and in my case dreams !

Ive always wanted to see the world of chocolate, to be in the biggest chocolate shop in the UK and to smell chocolate being made. It was a 2 hour trip to Birmingham – I really didnt realise it was so far. When My bestie said about going I never thought it would be so far. We arrived after the journey and entered Cadbury world. 
there is so so much to say about cadbury world but if i did then it would ruin the surprise for you going yourself.  There are alot of talks, lots of lessons about chocolate and a chocolate bean ride, 
We were bombarded with chocolate bars at the beginning and then little pots of heaven… i mean to say little pots of melted chocolate around the course of the tour. 
Then you get to write your name in chocolate and watch chocolate being made the new way and the old fashioned way. I could never work in a chocolate factory it would be far too tempting. 
There were lots of shapes made from chocolate,… i even found a chocolate clarinet and saxophone ! 
Sadly these were not for sale. 
the day was fab, very tiring and i was struggling that day but totally loved the experience.

Robin Hood Country

Leave a comment

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.

living in a bungalow !

Leave a comment

The next day was saturday, this was a chill out day really as we had a important show to go to…. jades! 

We did however open our pressies we’d brought each other and dyed my hair… purple ! yes i know bit crazy? but hey it was something off my bucket list so why not ! 
Anyway we dyed my hair, it went how I wanted it to in the end… it was a bit traumatic really as i had to have it bleached first….. i have a hell of a lot of hair. By the near end my head was pounding and I was getting tired but we finished it and the result? amazing ! 
me and linda, the pink and purple girls!
During and after hair dying we opened our pressies,…. I found out this was not just going to be the only thing i ticked off my bucket list ! 

there was also one more (picture cannot be found yet!) 
anyway all pressies were put to one side as we had a show to prepare for ! 
Jade was red riding hood in the play into the woods in the GAPA variety performance, I’m proud to say she stole the show.

The first half to be honest could have done with more work and it was only jades group dance that saved it. The second half was excellent but then im biased as Jade was in the second half alot. It was great to finally see her perform and do her stuff. One talented lady is going to come out of that girl and even more so now she is starting college. 
We came home (or rather we sat on a street wall for half a hour as James came to rescue us from our flat tyre).
James did rescue us and we went home. I sorted a entire 64gb worth of photos out and then woke up under the table ! Yeah seizure hard concrete floor but lovely people thankfully caught me… or so im told ha ha…. i didn’t have too many bruises anyway! That was the first sudden seizure Linda had seen… It was really horrible waking up on someone else’s floor not knowing what they just saw. Linda is one of my bestest friends in the world but it didn’t make it any easier until I felt that hand. Somehow when someone isn’t afraid to hold your hand you know its going to be ok. 
Yes this seizure may have been caused by tiredness, exhaustion, and lots of music light and a headache but it could have happened anyway. I always think that unless i fall and drop there and then at the point of the lights camera action or whatever… it could be anything. 
After I recovered we went to bed… Stairs after a seizure Very new concept of trying to tell my legs, feet and body to move in a upward direction before I can rest (i live in a bungalow and im so glad!). 

Holiday preparations.

Leave a comment

So Friday 28th we were due to go to Lincolnshire to see one of my bestest friends. The packing was a well…. Ummm….. Challenge. Lots of pressies and lots of stuff which I felt I needed (I still think I need it) plus a lot of medical stuff (whole suitcase to be exact). A few play about bits including my old flute (don’t like being without a musical instruments).

Finally we were ready. We had to take Magick to cattery which although it was the best cattery around 5* and very lovely people I still had a lot of tears. He had all his home comforts there though and looked ok when I left. I try not to think of him too much as I know he will be fine. 
The taxi came, Nigel was lovely. We had lots and lots of traffic on the way though 

Eventually we got to Lincolnshire, OMG the scenery. Lots of fields and pretty lanes. Some we saw as on the way to Linda’s we got a little lost but finally after about 5 hours we arrived at Linda’s. 
Cuppa and meet the dogs and chill out was for the rest of the day. It’s was lovely to see her again. 
We went up to our room and the bed was lovely made and there were Disney cushions! So fab… And they were for me. What a surprise. I am a huge Disney fan! 
There was even a finding Nemo one…… 
“Just keep swimming” 
After a long days travel my head was quite bad, a little while on the oxygen and it eased a bit though. Bed time was very welcomed. So much fun ahead of us. 

traffic jam! Gig and hospital

Leave a comment

This morning is 22nd June. I had my consultant appointment at 10 so I couldn’t leave home to the gig any earlier. we got up and ready and went to my appointment. That was both good and bad. Good that after reviewing the EEG’s better they have better idea of the issues surrounding my temporal lobe areas. Bad news being that after this I now have to go back to London where the treatment is better than down here. I don’t know what this will entail yet but it’s a wait and see. I’ve normally been going to kings college but this time i have to go to the national hospital for neurology and neurosurgery. It’s a bit of a bummer but at least it’s another step forward.

After my appointment I ended up  sitting in a 5 hour traffic jam on my way to the Kent airshow as I was supoesto be playing at a gig there. Eventually (after the 5+ hours) we turned round and came home because the band had already played and by this point I was not interested in walking round a field of planes. 
By the time I got back to nan and grandads I got out the car and my legs went to jelly… I literally got out the car and crumbled into a heap. In the end I had to laugh. 
In the car in the traffic jam! (Before I got bored! This was about hour 2) 
The very long traffic jam! 
My wristband ready to use