Well the last few weeks have been a struggle. Ive gone through many emotions a few different drs and hospitals. The news on all fronts have not been great and ive not been feeling great on top of that. Basically life seems a viscious circle in many ways. The seizures cause joint pain, headaches and stress of family, friends and in turn make things difficult. I want to do things but I get limited by people thinking they know what is best for me when in fact they are making life worse… more stressful because I still want to try being “normal” whataever that is. Its not like i want to be like everyone else… thats never been my style However I want to live life, Enjoy what I can. Yes sometimes I push things to the limit but life is for adventure and for living. Not sitting on the sidelines wondering what is out there. Ive also been having worse cluster headaches. I haven’t spoken about cluster headaches much in this blog I know but yes I have cluster headaches too. Diagnosed when i was sitting with my epilepsy consultant one time and my Dr asked me some (what I thought) odd questions on my next appointment after reading my hospital notes. I answered them and bang – another diagnosis, lot of pills and other things to learn/ understand. Well i’ve been reasonably coping until recently. My episodic clusters have turned into chronic meaning they are several times a day. This does not help the seizures either.
We have also found that my seizures occur when i’m in pain and my oxygen levels drop – hence alot of the time im hooked up to oxygen trying to quench a headache and stop seizures. Sometimes it works – sometimes it doesn’t. Either way its another thing in the way of life. Ive not had a seizure free day (grandmal becasue I dont really count the absence ones) in 5 weeks. Before this I maybe got one ever 2 weeks. Im getting tired now, my joints are suffering badly and Ive damaged my neck. Im now at the stage where Ive got some things in order and now its time to fight or run and damn the consequences. Im not going to run im going to fight for as long as I can and for as hard as I can.
Fight for fun
Fight for life
Fight for a seizure free day
Fight for a pain free Day
Fight for epilepsy awareness.
Im waiting for an appointment go go back to london for more treatment of some sort – we dont know what yet. I know surgery is not an option unless they find something new as my seizure focus (where the epilepsy is and starts) is no longer in just one side of the brain but both. its not just in the one lobe anymore but in 3. time will tell but for now I dont know what the answer is.
A poem edited for epilepsy:
“What Epilepsy Cannot Do”
Epilepsy is so limited…
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.
Even if just for a moment it does any of the things above… epilepsy and everything else will not win I have epilepsy – it does NOT have me.It is not Who I am – it is only part of me. I am not defined by it – i dont want to be.If I die tomorrow I want to be remembered as the bubbly crazy wacky purple, glittery disney loving girl who was fighting for epilepsy awareness. Fighting for funding for people to help find the cure we all need. I want to leave my mark on the world. Help and inspire people – that is my wish.
Night night. xxx
So a couple of posts ago I spoke about my wish not to be resuscitated if anything should happen to me in a seizure. Well the deed is done so to speak. I have made my advanced directive and am working through making a will which also includes writing letters to people to read when i’m gone which to me seemed a bit weird but im doing it…. its hard and almost have no idea what to say… do i add jokes or do i make it all sombre? well if you know me you will no that yes i’ve added jokes!.
Being that Im so young and the situation would be an emergency It would be very unlikely in an emergency situation that a paramedic would know what not to do. By contacting legal advice I have been given a card to cary… it looks like a credit card but says ive an advanced directive. The card came from the same people who are helping me make a will and finalise any other details with regards to what I would like to happen. For example my funeral. (oh what a happy blog this is ha ha)
It is difficult and emotional but its the right thing to do. I want to make my own decisions and i want to be prepared. I do not want to end up like a cabbage.
I spoke with a friend the other day only briefly but enough to make me think i was definitely doing the right thing. It helped to say it out loud I guess… I explained that I didnt want to be in a useless body with a sound mind, or the other way round. I know that many people do not get the choice (those born with disabilities) however as my friend pointed out… They dont know any different. I will. I will know about the life that I could have had or I will know that its hard on the people who would have to look after me like my mum. I would know all these things and not be able to do anything about it.
That is the difference and that is what I could not bare. Now see me as a coward if you will but Id rather not be resuscitated.
Lots of people have said im brave. or its a brave decision. I dont think so. I think its the right decision, a difficult decision that has not been taken lightly. Yes ive had sleepless nights, ive had nightmares of what could happen and ive woken up and sat bolt upright thinking that i have to do this to stop my worst fear from coming true. I guess its scary but life is always scary but for different reasons for different people.
Dont think im giving up on life though because im not. I will neaver willingly give up my fight. Every day i cherish, every minute of seizure free activity is a bonus and every minute off oxygen makes me feel free.
Life is amazing but I must plan for the future.
Ok im not going to be depressing or dramatic here. Yes ive had some really down days… Life has been difficult but im ok. Things wont change but i have them all in my head into their little neat spaces instead of making my head muddled and a mess.
I was asked to do another video by so many people. I didnt know where to start. I began with a song a jessie J number.
I then went away on holiday to see my best friend for a week, I had such an amazing time. During that time though my world changed that little bit more and epilepsy took a little bit more from me. I ended up in hospital as you know from my previous blogs and then when I came home i was again in hospital some more.
During this time I was told by drs that with the amount of seizures Im having and the amount of times im suffering from status epilepticus where I have repeated seizures without regaining consciousness and where my breathing changes and stops on occasions my future is not looking good. my future may hold brain damage and death if this continues. Luckily so far Ive escaped with only slight blurry left eye. I was also told my epilepsy is no longer limited to starting in my temporal and occipital lobe on the left but has now spread and is on both sides of my brain. Surgery is not a viable option as this would also cause brain damage.
Depressed, upset and at a turning part in my life I looked through some songs and found this one. (if i die young) It seemed to fit what i had just been told.
Im not being depressive about all of this but it is the harsh truth. So many people think epilepsy is just a condition where you take a pill and no more seizures …. If only it were that easy for us all.
Mothers and fathers have lost sons and daughters to epilepsy, Ive lost good friends. The truth is that epilepsy kills over 1000 people in the UK alone every year.
More awareness needs to be raised and this is my wish and goal to do so. I love life and love my friends and family who help me when im struggling. Im still the happy bubbly person I normally am… I do have my down days but most of the time im still happy and enjoying life.
This video is just to make you think a bit more about how precious life is… it is not to be taken for granted.
I hope you like the video and it raises a few questions of your own.
Love you all guys. Please leave comments if you like. its nice to know who is reading this… I just get a counter thing telling me people are here otherwise which is a bit boring. Would be lovely to hear some of your stories too.
Love you all and remember Just keep swimming.
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.
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|
The next day was saturday, this was a chill out day really as we had a important show to go to…. jades!
|me and linda, the pink and purple girls!|
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.
My last post was about sci-fi weekend. well the next day I had band.
I managed to get enough rest to go to band. I love band but with Epilepsy there are a lot of things, worries, situations that I have to prepare for that many people do not see. Monday night my friend was not there.. It meant that before hand I had to deal with mum who was in a small state of panic as to what would happen and how would I deal. I got over this by mums phone number on a piece of paper being given to the conductor… I really hate all this but its safety I guess plus no one would have known what to do really. The next problem was that the gig the band are doing this weekend is at the East Kent Airshow. its a huge event and we are playing.. however to get in you need a ticket. The band get in for free however tickets are about £20 ! thats alot in our world. Money we cant afford for a gig that mum really didnt want to come to apart from to make sure that if I were to have a seizure I could be safe and she could help me and get me home, administer my pills and oxygen. Anyway we got given a wristband each at band and i was praying there would be spare ones… i dont know if there were or were not because they disappeared quickly. They were very coveted. Some people knew my situation and one extremely nice band member who already had brought a family ticket gave me their wristband. I am so so thankful I dont think they can ever know how much that meant to me. Mum hates planes and noise but knows how much i wanted to do this gig. I am so so happy to have the oppertunity to go.
Of course it will all depend on if the beast lets me have a good day but fingers are crossed.
Its not just the gig and the beast I have to worry about saturday. I have a appointment with my consultant on Saturday morning before the concert. Im really worried about this appointment as I get news of what next. Having this news prior to a important concert is not really how Id like it. I worry that if it is band news I will not play well. Then again if it is good news im going to be so so bouncy!
All I can do until the morning is have faith and pray.
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.
Well things didn’t get better after the last blog. I ended up in the large hospital about half an hour away, my head pounding and the seizures not stopping. I’m limited into what can happen how as most the drs don’t want to take me to theatre to administer the drugs I could do with fast. So I end up with lots of muscular injections, oxygen and oral meds. I thought this had worked and we managed to get home Monday morning. Unfortunately this wasn’t the end.
I ended up with one of my own dr’s coming out a few hours later as the hospital drugs wore off and I ended up in the worst pain known (cluster headache has really set in). Having epilepsy is one thing but add that to this disease called cluster headaches which is defined in medicine as “the most painful condition known to man” and life is somewhat harder. So here I was more injections and drugs. My neck was really giving me alot of pain too as Id hurt it in a previous seizure a few years ago and it is a recurrent thing which normally gets better after a few days…. this time it hadnt. It just added to the pain :-(.
I did eventually manage to wake up and be more alert but the drugs were making me sleepy. I had to get an appointment for the dr that week so 3 days later (when I felt strong enough to get to the surgery I tried to get an appointment. Well like most Dr’s surgeries in the UK despite being told by the dr to make this appointment the guard dogs (AKA – drs receptionists) wont let you book an appointment unless you are dying which at this point I thought I was with my neck.
The next day I tried again…. I managed to get an appointment with a dr I’d never heard of.
This is normally a waste of time for me as not many Dr’s are willing to change any medication or do anything without my epilepsy and cluster consultant’s and London consultant being notified first. This Dr however was different. He was lovely. He even had a skill very far and few between Dr’s ……. he listened.
After a chat and examination it looks like ive damaged my neck as Ive had years of seizures.The epilepsy medication damages the bones, nails, teeth and all things like that so with the combination of medication since i was 4 years old and the recurrent seizures slinging my neck in awkward positions it is not surprising. I received some pills for my neck and then he asked me many questions.. We now have some different injections for home as well and medication to help the seizures when Im going through a bad spell. I already had some but these ones are apparently stronger and the ones I normally have whist in hospital so should mean another step away from hospital. Great!.
About a year ago now I was told that there was a new drug to help the pain I get from my head and seizures and cluster headache however it was strong and acts upon the heart. I was told to get a ECG heart trace which I did. This was given to my consultant and I was then told I couldn’t go on the new drug. I was not given much of an explanation to my satisfaction apart from it was not right. Therefore I asked this new GP what was wrong with my ECG. Apparently he couldn’t even find it so I am due for another trace on Tuesday. Fingers crossed I will get a better reading and be able to trial this drug and maybe get relief.
In the mean time I am also staying at my nans during the day at weekends with my mum as my grandad went into have his leg straightened again on Monday. The week has been hard but Ive managed one hospital visit and im at nans as I type. I am so sleepy on the new drugs and feel like im under water. Everything I do is an effort but I am forcing myself to get back to normal.
Yesterday (Saturday) I installed Laras Dreadlocks ! I had never installed dreadlocks in my life before but with the help of youtube (god I love youtube) I managed it…
|Im really pleased with the result and I think Tink is too.|
Today Ive rested and Im on the strong meds again as my neck is pretty painful. It doesn’t seem to matter what I do or what position I am in it makes no difference so its just medication and grin and bare it. The seizures are still unpredictable as usual and I need to get my confidence back fast.
A spell like this always makes me think about doing anything or going anywhere cos what if I had a seizure…. but if you live life like that you may as well not live at all. Grab the bull with both horns and have faith no fear.
Tomorrow is monday and I so want to go to band practice. I am going to see how I go and maybe even if I sit out for a bit I will at least get to play something.
I love my music and could really do with chilling out at band and not thinking about much while I play. I miss everybody too. Strange really as you rarely get to talk to many people while there but Its nice to be with people who I do class as really good friends.
Kent Coastal Concert Band is an amazing band.