SICK OF BEING ILL - CFS/ME, chronic migraines

SICK OF BEING ILL - My Story

SO this is awkward. It gets more and more difficult to explain my ongoing health problems by the day as they appear to get more complicated! I'm not dying or anything lol so dramatic. I have Chronic Fatigue Syndrome and also some other thing that nobody can explain where I essentially get migraines, pass out, have fits, get the shakes, see lights in my eyes which they call 'orbs' and have light sensitivity.

-This page I shall update every so often with another part of my story. I will write however much I like, whenever I like :) I'll make it as chronological as possible. I hope this helps people suffering from something in life lol! hi.-

Entry One - 6/10/2013.

It all started when I was about 12 years old. I started to get ill with symptoms like tiredness, dizzyness, sore throats, head pain etc etc.. pretty much every day. We went to the doctor and they couldn't identify it, they did multiple blood tests for things such as Glandular Fever. 

Glandular fever is a type of viral infection that mostly affects young adults.

Common symptoms of glandular fever include:

• a high temperature (fever) of 38ºC (100.4ºF) or above
• sore throat
• swollen nodes (glands) in the neck
• fatigue (extreme tiredness)

That's essentially it in a nutshell. Despite these tests they found nothing expect a Vitamin D deficiency. So for my birthday that year, my mother took me to Spain for the sunshine! My dad and sister also came. It was a terrible holiday I cannot lie. I stayed out of the sun most of the time due to feeling too hot in general and being in pain. But I appreciated it all the same. (Even if it was just an excuse for a holiday). 

I was referred to a pediatrician. By this time I hated the doctors and hospitals and ew ew ew! Every time I went to the pediatrician they'd weigh me, measure my height and worst of all, take my blood pressure! I HATE HOW TIGHT THOSE BASTARDS ARE ON YOUR ARM! Anyhoozle.. So yes, I went there various times. My mother and father always accompanied me to these appointments, for which I am eternally grateful. 

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Entry Two - 10/10/2013.

My first fit or pass out thing happened in the shower. Well, if you're gunna have a fit, may as well be whilst your clean and naked! YOLO. haha. I was stood there and I suddenly felt insanely dizzy, my vision blurred and my body went into meltdown. I literally thought I was going to die. I screamed and screamed for my parents. Luckily by chance I'd left the door unlocked. People found it weird that my parents saw me naked but at the end of the day, I couldn't give a shit, I thought I was going to die.. plus, they've seen it before! So my mother ran in just as I was becoming unconscious, her running in was the last thing I saw, then all I know is what was reported. My mother wrapped me in a towel as best she could and attempted to get me into the recovery position. However, my body was extremely stiff and shaking and therefore this proved a challenge. My sister was freaking out crying and screaming. My dad immediately got on the phone to an ambulance. The first thing I heard as my consciousness was returning was the crying of my sister asking my mum what was going on, my dad in the hallway on the phone to them ambulance and my mother saying my name. As you can imagine, it was strange to wake up led down by the toilet when you've just been showering. The first thing I said was 'I feel tired' and then I said I didn't want to be naked for the ambulance people and I did not want to go to hospital under any circumstance! I was slowly putting on my pjs on the bathroom floor and the doorbell rang, the ambulance people (a man and a woman) came upstairs and asked what happened and how I was etc. After a while of sitting there speaking about how I felt, we walked downstairs and into the lounge where they took my blood sugar and things. They said that they would have taken me to hospital that night but it was hectic there and I'd probably be better off at home. I kinda lied to them and said I felt completely fine when really I was freaked out and clearly unwell haha. But it kept me out of hospital, I hear the food is awful there. 

At the pediatrician we were informed that I had Chronic Fatigue Syndrome. This is effectively where you become utterly exhausted from simple things such as walking down the stairs. It manifests it's self in different ways for different people but it gives me migraines, makes me: dizzy, shaky, insanely tired, get sore throats frequently, constantly have inflamed glands and blah blah blah. There is no medication for the cause or symptoms of this, you pretty much just have to live with it until it eventually goes. 

We were also informed at one of these many appointments that I DID have glandular fever. Therefore, previous tests were wrong - I was told it's hard to trace in blood for some reason or another. SO YES, so far I'd had a vitamin D deficiency, Glandular Fever and currently suffering from Chronic Fatigue Syndrome, OH THE HEALTH. 

So then they decide to do various scans on my brain to make sure that I don't have a tumor or anything. As you can imagine, this was quite a scary time! But you just get through these things. 

The first one was an ECG scan on my heart, sitting there topless in front of a nurse was a bit awkward LOL. Luckily they said there's nothing wrong with my heart, they said the beating was slightly irregular but nothing of any concern, so that was dandy. Yet, not.. they just sent me for more scans and tests. 

The next one was an MRI scan. This was the most horrific of them all in terms of feeling extremely trapped. They strapped my head down onto this bed thing and put me it in one of those things they use to keep people's heads in the right place in case of spinal injury or something.. So YEAH. One of those, jammed my head in with pillows and pads, then they put a basket type thing over the top which looked like a rugby helmet. They informed me that I wasn't to move, I had to stay completely still until the 25minute scan was done. They put you in the tube and it's only about 18cm away from your nose. The only thing you can see is your feet, the top of the tube or this mirror they put inside with an upside down view of the nurses office. Whilst you are feeling claustrophobic like this, there are the extremely loud noises of the machine which feel like they're inside your head. They have different sequences every few minutes so the sort of tune they make changes. All I can describe is that it was loud and disconcerting. Luckily the outcome of this can was that there was nothing wrong, so that's a plus! But still no answers for a lot of hell! 

They then sent me to the eye hospital in order to see if there was a tumor behind my eye or something of that nature. As I was there, I warned the eye doctor man guy person lol that I am sensitive to light and therefore if he shines things in my eyes then I may pass out/have a fit. He made me put my forehead and chin against these two plastic bars, he turned the lights off and shone a light in my eye. I informed him that I didn't feel too good but he encouraged me to continue. AND.. of course, I passed out/had a fit. The reason I put these slashes is because, I'm not sure what they are. I didn't see myself as it happened and therefore I cannot judge. Then he finally took me seriously and apparently threw the equipment across the room and ran to get nurses. Baring in mind, this room is extremely small. There is a desk, some equipment, 2 chairs and that all barely fits, it's a box. So of course, I woke up on the floor AGAIN.. with an eye doctor, my mother and about 5 nurses leaning over me with blood pressure machines and people in the waiting room trying to have a gander at the girl on the floor lol. Then the eye doctor asks if he can continue the exam, after me expressing FUCK NO in a polite manner, we left. 

They then attempted to get me to have an EEG. This consists of you lying down and them flashing lights into your eyes to see if they can detect an issue in brain waves.  The first one I was booked in for, I refused to go to. This is my worst nightmare. Why would I purposely want to put flashing lights in my eyes? But eventually I was bullied into it by nagging doctors saying there are no other steps. So one day, I went there. I led on a bed after they glued a bunch of wires to my head (and messed up my hair) and was waiting for doom. They set up a video camera to film it in case they managed to induce some sort of fit. Then they flashed BRIGHT AS FUCK lights in my eyes, increasing the pace each time. I really did not like this. I barely looked at the light like you were supposed to. My dad put toy story 3 on the little TV in there in attempt to take my mind off of the current torture that was occurring, it didn't work. Eventually it ended. When it finished, I was extremely shaky and had the worst head pain of all time (without being too dramatic lol). But it was done!

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Entry Three - 24/10/2013

Welcome back - here's the next entry. 

So then, after all these scans I went back to the pediatrician. He was an absolute goon! He was fabulous. He spent ages searching for a pen when he had a pot full on his desk and two in his pocket, that's the type of guy we're talking about. Reminded me of a nutty professor. He was really nice and all. He did a bunch of weird basic tests like making me walk in a straight line, follow his finger with my eyes etc. He said I was all good on that stuff. 

This was the time when he essentially told me I had Chronic Fatigue Syndrome. 

Chronic fatigue syndrome (CFS) causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest. 

CFS is also known as ME, which stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord.

If you're interested in possible symptoms and more information, there is LOADS online about it. Of course it manifests itself differently in each person but my symptoms are mainly fatigue, headaches, sore throat, swollen glands in the neck, muscle pain, joint pain, dizzyness, passing out. 

Due to this seemingly separate other thing, I'm not sure which symptoms are caused by what. I also get INTENSE migraines, have 'funny turns' as everyone calls them, fits etc. 

It's weird because it seems to me that everybody has been looking for an answer, the cause. However, I've been looking for something to treat the symptoms. 

Anyway, so being diagnosed with CFS or ME was weird. There's nothing you can do to cure it, only things which are meant to help. The first thing is sorting out what activities you do in your day - high energy/low energy ones. So they give you a chart which you have to colour in. Blue meant sleep, red meant high energy and green meant low. However, what they considered high energy was bizarre. On a car journey, red. Watching TV, red. Laptop, red. Playing games, red. Along with other red activities such as homework, school etc. When my chart was completed, this is how it looked..

And that's with me lying a little bit here and there so I didn't look bad LOL :). As you can see, it was mainly red. The green was mainly break times at school where i'd just be sat with megun or maddie (bffls) talking about random things hehe. Due to being at school and it coming up to GCSE's at the time, I couldn't change my schedule really. So that didn't help me at all, despite hearing that it helped other people with CFS/ME. 

So that was useless. Then the pediatrician told me that due to me being 16 turning 17, I'm no longer classed as young enough to be in the pediatrician part of the hospital, I have to move to the adult bit. EW SCARY CHANGE. I PREFER THE WAITING ROOM WITH THE COLOURFUL WALLS AND THE BOAT. haha. 

Then after several trips to my GP expressing my constant pain and nagging them to help me out, they referred me to a neurologist. (BRAIN DOCTOR GUY LOL). We shall call him Dr H for purposes of privacy and whatnot. I went to see him for the first time and he looked and sounded like David Attenborough, yet he had the ears of Lee Evans. My first impressions of him were good, he clearly knew what he was talking about and was a nice man.

During this time of me explaining the problem, I cried. I was going through a particularly bad stage of the illness at the time and expressing it just got me upset, like it would any normal human being. He clearly mistook this for mental health issues haha. He referred me to a psychiatrist. As he explained this to me, I simply cried more due to feeling insulted and angry. I had let this man hear my story and he immediately thinks I'm some troubled teenager. I couldn't stop myself from telling him. I told him that I was offended that he would even think that. I said that of course it upsets me for a few minutes here and there but generally I'm happy. I said that I would have expected the pediatrician to blame it on hormones, growing up and other things but not the adult place. Despite expressing my discontent, he still sent me there, probably because I did look a tad barking mad rollin' up in my trackies with my unbrushed dreadlock hair being like 'I'M NOT CRAZY!' haha. 

So next stop, the psychologist person. So my mother, father and I are sat in this waiting room. The only reason I was there was to prove Dr H wrong so that maybe he would take me seriously next time I saw him. This was a children's place so at least they had one of those things where you move the beads along the rail. We went in. The next hour was emotional for sure. I explained my whole illness experience to this lady, she asked about family and friends. I told her everything so that she would realise that the problems I was experiencing were PHYSICAL, not mental. I explained how I had a boyfriend with CFS/ME also. I told her how he helped me more than he'll ever know and that he was so nice. I explained how I had Megun, my best friend, who I spoke to (and still do speak to) about everything and anything. I said how I had had one boyfriend (goes by a name that rhymes with pam rohnson) who pretended to be totally cool with my illnesses. He was the first person that I'd let see my illnesses properly. He told me to trust him and such, so I did. I'm the type of person to hide my illness. I will make myself have ten times more pain in order to hide my illness from other people. I can't help it, it's just my way of dealing with it. But this pam rohnson, I let him see everything. The intense migraines where I'm uncontrollably crying because of pain. The times when I literally felt paralyzed due to exhaustion. Everything. And he knew how badly they affected me. He knew that my illness was the one subject that could severely upset me. And what did he do? He broke up with me and specifically said it was because of my illnesses. What a CUNT. (it doesn't matter now because I have the best boyfriend ever who loves me truly for who I am lol hi Nikon, but yeah we'll get to that later.)

So essentially, I poured out my heart and soul to this random lady. She told me that Dr H was silly for sending me there and that I had not even a glimmer of mental health problems. She wrote him a long and detailed letter about how mentally stable I am. LOL. 

Then I had to wait for the next neurologist appointment with Dr H. This actually happened 2 days ago. 22/10/2013 I went back to Dr H. He seemed a lot nicer this time. I felt like he took me seriously and saw me as an adult with a problem as opposed to a kid with unbalanced hormones. 

The outcomes of this appointment were: 1.I achieved my big FUCK YOU moment when he realised I AM mentally stable. 2.He says it may be hereditary because my dad suffers something similar. 3.He's given me anti inflammatory tablets because it could be something to do with a swelling in the brain lol. 4.I'm booked in for a lumbar puncture (they take fluid from your spine EW) in case the tablets don't work. 

So now here I am. Really tired. SICK OF BEING ILL. < lol. 

I now have a boyfriend called Nikon. We met 12th March 2013 and have been together since 28th March 2013. - almost 7months. I appreciate him so much. He has cared for me so well and dealt with the circumstances so greatly. I couldn't ask for better. Thank you Nikon lol hi. 

OH MY! Just remembered this one time in Chemistry. My best friend Izzy and I were doing an experiment when I went insanely dizzy. I thought I was going to pass out. Izzy and Blessing got under each of my arms and dragged me out of the classroom half conscious LOL. Izzy kept saying 'WTF I'M NOT CARRYING YOU DOWN THE STAIRS' ahaha. We just went to the bathroom and got some water. Then my teacher came bursting in a few seconds later and said how people in the classroom were saying I have fits and stuff lol. I was like yea hi. The most awkward part is walking back into the classroom afterwards because everything goes silent and everybody looks at you and wishes you well and you're like hi thanks. Because you don't wanna be disruptive hehe. 

In Geography once, I sat there feeling so dreadful. Then I suddenly felt really dizzy and could barely see. I sat there with my hand half up for ages waiting before she finally picked me and I was like I FEEL LIKE I'M GOING TO PASS OUT. Then Maddie (Bffl) and I went to the toilets etc and let it pass. But it's just the awkward moment when you're really shaky and pale and you're walking out of the room whilst everybody is dead silent and you're like hi guys. ahha.

In French once, I randomly was like I FEEL SO ILL OMG GUNNA PASS OUT. My French teacher (I was her favourite student obv) got up and started flinging desks about the place in attempt to help me exit quicker. My friend Vikki held my arm and helped me out of the room and we started making our way down the stairs to the first aid room. Then my french teacher comes running out, leans over the banister of the stairs and says 'be careful' really dramatically, it felt like romeo and juliet or something haha. But yeah, then I was just chizzlin' in the first aid room and got Vikki and I out of a French quiz. haha. 

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Entry Four - 6/11/2013

Well, I feel like sh*t lolzies. Hi. I informed the college nurse of my illness problems and then also informed my tutors so that my attendance wouldn't be an issue and my sometimes lack of concentration wouldn't be a problem. However, they still rang me and complained. Therefore, my dad and I had to go into college AGAIN to talk to and explain to someone else about the situation. I don't mind because the lady was nice and all but it's just frustrating and draining to constantly talk about it. 

At the moment I am currently insanely dizzy due to doing some reading for my college english literature alevel. It's horrific to think that I can't even read a few chapters without feeling the way I do. It must be so nice to just function without thinking about later illness. I have to specially arrange things to allow the time after to be sacrificed for my illness time. For example, every time after I shower I feel some type of illness be it dizzyness, sickness or headache. Along with the usual exhaustion. 

I like having a blog in order to moan about these things and to hopefully let other people understand better my situation. It's the most annoying thing ever to not just be like 'yeah sure i'll be at that party' because i'll probably ill for like 3 days afterwards. Having to constantly plan things is frustratingggggg! 

I cannot help but talk of my illness a lot with my family, I get worried that they grow bored of me talking of it continuously, I can't help it. I feel the need to tell someone. Just like if there was something wrong with you, you'd tell someone. Just because I have it every day doesn't make it any less shocking or less painful, it just makes it a usual thing to cope with I suppose. 

Some days I'm like WHO CARES I'M AILVE, which of course I'm thankful for. But then, IT'S UNFAIR TO BE LIVING LIKE THIS. Urrgggh. 

So far the new tablets which prevent swelling in my brain are being helpful but not erasing the problem. I hope that as I take more, I feel more better. 

I hope I get into good universities and I hope I'm well enough to go to them. But there is no shying away from the fact that my grades have been affected and I won't be well enough to go if I remain this unwell, it sucks! But I can only do what I can do. 

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Entry Five - 07/11/2013

Me again. Today I'm having one of those days where I'm utterly annoyed at being ill. 

There seems to be a new pattern with my illnesses at the moment. It's where I'll have a good morning/evening and then be ill for the other one. So today, I had a migraine and dizzyness this morning, and now I feel slightly better. But of course, my better isn't actually better.. it's just better in terms of my scale of illness.

I was annoyed to find a letter from the college I attend come through my letterbox this morning. I spoke to the college nurse, and then to my tutor and teachers personally explaining the situation. However, I still received a phonecall asking me to come into college and tell the welfare lady what was happening, so I did. She said she would take care of it so nobody mentions it further.. and then I get this letter. 

It's just annoying having to repeat myself, hence this blog really. People get to see it from my view. 

However, I do worry with this blog that it is just empty words. I kind of throw away the words headache, migraine, dizzyness etc. But I want people to realise how severe these things are. The constant, intense pain of a 2hour migraine is exhausting. 

Woe is me, right? oh darn. I don't want to come across as a moany bitch but this is my blog and i hope that this will help people understand. :)

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Entry Six - 13/11/2013

Hello again people of Earth and other such beings which may read this blog.

One of the most frustrating things about having this somewhat inexplicable illness is: the people who just do not understand. 
People always use the phrase 'I understand' and sometimes, they do understand as much as they are able to without actually experiencing it. 
The most upsetting thing about it is when you open up to someone and you actually begin to feel like they understand, you let them in and they throw it right back in your face. 
I've lost a boyfriend and a best friend because I thought they understood, they gave me the impression of being caring and understanding. However, then during arguments, they'd throw it back in my face and say such things as 'I never see you outside of college' - HELLO, I try and act well in college when i'm actually in pain and that lesson is literally all i can do. 'You're well enough to do stuff sometimes and then sometimes not, you clearly use it as an excuse' - Hi, sometimes I have a good day and I'm well enough to do stuff... other days I struggle. It's not an excuse, the illness level goes up and down each day. Sometimes I have bad weeks, such as this one and the last. 

I would say that my illness is the one and only thing in life that I actually get upset or angry about. Most of the other things in life I don't really fuss about. I don't mind people saying things about me blah blah blah.. but if it's something like 'you're never in college' then it upsets me if it's said in a mean way because I do struggle with attendance due to being ill all the time. 

It's just not worth the illness. If I were to force myself to attend college on a day like to day (migraine, can't see properly out of one side of my eye and dizzyness) then, I'd be sat in a classroom feeling terrible, not taking in any information and I'd feel ill for the whole day afterwards. 
However, if I stay home then I can catch up on it when I feel well enough and not over-work. This therefore stops me feeling absolutely terrible.

If you feel ill, you don't go into work or school or college, right? Well then, why is it bad for me to have more time off college because I'm more ill? The point is, it's not bad. 

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entry 7 - 7/12/2013

Hi. I haven't written in a while because i've been feeling particularly bad. 

Since last time we spoke, I went to the doctor. My dad and I moaned and said how bad things are. The doctor (we will call him Doctor C, he's my favourite doctor) gave me a note to give to college to keep them off my backs.. 

it says 'Ellie has been advised to pace herself, which may mean reduced hours/days off college will be required.'

This was a positive experience. He also booked me in for a blood test. So, I had that the other day also. It was not a good experience. I sat in the waiting room and there was an old lady sat in between my mother and I due to lack of seats. (Ironically, I was reading and the granny was playing on a DS). The speaker (that the doctor announces the next name through) was broken and crackling with a high pitched annoying constant noise. It was hurting my already hurting head. Then I was trying to read Oscar Wilde but as I looked down, I felt dizzy.. then as I lifted the book up, my hands went really shaky. So I stopped reading but then the man across from me kept looking at me so I felt awkward. Also, a baby was crying.

Anyway, I went in eventually and the nurse was nice. She explained how a previous patient had fainted so that's why she was 40minutes late. I know what that's like so I didn't mind apart from the waiting. She took my blood like she was meant to. I saw on the forms that one of the things they were testing for was Glandular Fever. I was under the impression it had gone, but apparently it can linger for years, which is greaaaaaat. 

I'm so frustrated with myself. Today, for example, I've done nothing significant... I've watched TV and chilled out. Yet, I have been continuously exhausted. It's so annoying. I've also had lots of pain and aches etc.

I got a conditional offer from Bath Spa uni, which is fantastic. But, the reality is that I'm not well enough to commute there every day. Getting buses etc alone is scary and rather dangerous. So, I could take a year out doing something else. But I don't really want to. I could go to uni and ask them for help, but then I may not complete work to the best of my ability. But what if I took a year out and then after that year, I still wasn't better? 
Advice and opinions on this matter would be good.
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5th jan 2014 -

Here are some things I wrote on my kindle the other day to add to the blog. 

I am at a point in my chronic illness that I have been forced to show more of my problems as opposed to hiding the pain. I have continuously kept people shielded from the extent to which I am ill, I'm not sure why but I think it kept me sane to a certain extent because it didn't become the opening conversation for people to ask how I'm doing etc. It is tiring to constantly hide anything, especially something like this. You tend to boil up and feel an intense frustration from holding in your pain. You don't want to appear as if you're constantly moaning and so you think it is best to hold it in but instead it builds up and you end up expressing your frustration and anger in other ways, silly ones. For example, shouting because someone drank the last bit of lemonade. When you hide something, your frustration comes out in different ways. This is something I am struggling to deal with. Especially because I'm sensitive to noise and smell. It makes my head hurt more, therefore I have a seemingly short temper when really to me I've been devening with lots in my eyes.

It's really difficult when you're not sure what is causing your head pain. I mean, your brain is everything. Despite being told I don't have a tumour or anything, of course it is worrying when you hear stories of miss-diagnosis or lack of diagnosis. I mean, they said I didn't have glandular fever but then after another test they said I did. Yes, I am slightly paranoid but I think, with good reason. Right now, I have a head pain. I will try and describe it as best as I possibly can. It feels like I have no space in my head, it feels really full. It feels like my cheek bone and forehead are being crushed in towards each other on the right hand side. My dizziness is minimal, luckily. However, 10minutes ago it was severe. I couldn't see and the room span, or I did, I'm not sure. Then my hands got pins and needles and started pulsing. It also currently feelfeels more difficult to breathe than usual. Possibly due to the pain or maybe it is because my glands are swollen and my throat is sore. I might try and write down all of my symptoms soon with the time they occur over one day. Hopefully this will illustrate how much pain and how many symptoms I feel in one day.  

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Over christmas, my illness things have been pretty dang bad. I woke up xmas morning feeling dizzy but I was majorly excited so continued opening presents with nikon and the rest of the family. I had to stop numerous times due to feeling dizzy or having an intense head pain. 
Boxing day I had a headache when out at my nan's with the rest of the family. But still had lots of fun because xmas is my favourite holiday. 
Essentially, it did change my holiday because I wasn't well but I didn't let it ruin it. I was worried prior about ruining it for other people. And it probably did to some extent, it is a bit of a buzz-kill to have me saying I feel like i'm going to pass out etc constantly. 

So then there was new year's eve. I often get left out of things because I don't see friends for large spaces at a time because I'm often ill or catching up with college work because I've previously been ill. Despite not being invited to some places, I was invited to spend new years with some of the best people I know. I woke up on new years eve feeling really ill but THANK HAY felt better before people came over for pre-drinks. I had so much fun and felt relatively normal for once, it helps that one of my best friends there has ME also, so she gets it :) and so do some of the other people that came. We then went to a house party which was super fun, until I started to feel ill. I had the worst head pain ever. I went to sit in the darkened lounge with Nikon to try and get it gone. But it wouldn't go, it was hard to hold back the tears so that wasn't fun. So I ended up getting picked up by my mum and dad. As soon as I got in the car, I burst into tears because the pain was insanely unbearable. I took a tablet and it eventually went away after a few hours. It was a good thing I didn't drink!

I'm worried about going back to college because it's carnage trying to keep up with the work to a standard that will allow me to pass exams when I can barely ever attend. 

My dad went into the docs the other day to see Dr C. Just to explain that my situation wasn't getting better. So now I have an appointment on monday (tomorrow). Missing more college. Oh dang. But I hope they can do something. 

OH also, I have an iPhone now, after 4years of blackberry. My parents let me have it from my dad's upgrade. I think they did it to try and make my life seem a bit easier and better. Which is amazing. It has helped loads because the blackberry used to make this high pitched buzzing noise whilst charging which didn't help with headaches etc. But yeah, I think my sister is bound to be pissed off because they pay for my iphone and she has to work and pay for her own galaxy s3.. but i'd rather have a galaxy s3 and a job in order to never feel ill again. In order to never attend another appointment at the doctors or hospital ever again. Ya get me?

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25/2/2014

Thought I'd write a quick something. I had a lumbar puncture about a week ago but I'll write about that another time.

At the moment, I'm having a really bad time being ill. It's almost continuous head pain, sickness and dizziness. It's becoming difficult to do anything. Read, write, eat.. anything. Everything is a task. There is literally nothing I can do about it, I'm uncomfortable all the time. On top of that, some of my friends are being completely shit at the moment. So that's grand. However, some of them are being great. For example, Ryry is being a babe. He asks how I am all the time and is just generally there for me always. I appreciate it loads. 

Nikon is also being a star about everything. He came with me to the lumbar puncture and everything but as I said, I'm going to write about that experience in detail another time. 

I have the support of all of my family, who are amazing. But that doesn't stop the constant struggle. Despite this, I'm positive and happy. It's all good really! Just got a B in my English Literature mock exam, which is major seeing as my college attendance is below 50% and I had a migraine during the exam. But there we go. Just trying to remain successful. 

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21/09/2014

I realise that I haven't posted on my blog in a while. Lots has happened since I last wrote. I have since finished my A-Level exams. After having 30% attendance, I came out with two B's in psychology and English Literature and a C in Theatre Studies. I was happy with this considering the intense pain I had to cope with. I was allowed to do my exams at home which helped because all I had to do was stay in my pyjamas and sit at my dining room table. The lady examiner I had was called Anne and she was an extremely nice lady. She made me feel as comfortable as possible during my exams. 
I managed to get a place at Bath Spa University to do English Literature. However, I decided to defer this place and do a one year fast-track music course at my local college so that I had time to recover from my illness. I have been back at college for three weeks and have only had one day off. This is good for me but the lady who is in charge of welfare at college (let's call her J.R) said that if I didn't have high attendance this year then I would be thrown off of the course because they went easy on me last year. My mother said that J.R was essentially a bitch. This pisses me off because they're happy to use my BBC grades in their statistics, to take credit for them and make themselves look good and they give me no sympathy in return. I taught myself those A-Levels. The stupid thing is, if I was registered as disabled, like I really should be, then they wouldn't say anything. But because I'm trying to get on with my life without benefits or 'let-offs' they're not giving me any help or sympathy. Yet, as I said, they're happy to take the credit for all of my hard work. Cheeky bastards. 

I have been enjoying the music course at college so far. I have made some good friends already which makes me happy. It has been lots of work though. I did two gigs in one week. There is lots of loud music played every day which causes headaches. There are bright lights sometimes. Every time a video is being played on the big screen or the lights are turned on or off or if we are watching a performance, I am in constant worry that a light will flash in a way that affects me badly. I informed the main teacher guy before I started the course of my history of migraines and light sensitivity etc. However, he forgot basically. So I went to him and also my female tutor and explained briefly my situation. I think they understand but I still can't help being worried because not every member of staff or every student knows. I'm not sure whether it would be a good or bad thing for everybody to know. It's a hard decision to make because I don't want to be labelled as ill. 

Since my lumbar puncture (a procedure I will explain at some point) I went back to the neurologist Dr.P, he basically sat me in his room and made me explain my situation. I did. He gave me a list of medication to try over months. I went back to my GP Dr.C to have updates on my progress etc. After trying everything on his list, nothing worked. Let's get one thing straight- I dislike Dr.P, I like Dr.C. 
Dr.P just gave me a list to work through so that he could have me as a tick on his list and get me out of his hair for a few months. Dr.C genuinely cares for my situation. This is shown with a simple example: I was in Dr.C's office about to try the next medication of many when he asks if I'm on any form of contraception. When I say yes, he instantly looks to see whether the medication given to me would interfere with the contraceptive pill that I take. He finds that one of the medications that Dr.P had me try could have made my pill ineffective. Can you believe that a doctor wouldn't check if a girl of 17years (age I was at the time) was on the pill or not? What an absolute retard. So, you get the picture as to why I dislike him. Luckily, I did a test and I wasn't pregnant. But if I was, oh damn I would have gone crazy. The fact that he'd even put me in the position where I have to do a test is an absolute piss take. :) 

Anyway, now we've reached the end of all of the trial medications that Dr.P recommended, Dr.C says I should go back and see Dr.P as he is a neurologist and could probably do more for me. I can't say that I trust his judgement because to me he seems a bit incompetent and I feel like he sees me as a name on a file as opposed to an 18year old girl with constant pain. 
I was thinking about asking to be referred to a different neurologist. But the waiting lists take forever and a day. 
I went to the opticians recently to have a visual field test because with increased pressure around your brain and spine, some people get blind spots and stuff. (I have a pressure of 31.6 when it should be 10-15, this was found in my lumbar puncture but Dr.P disregarded it because apparently high pressure can be caused by headaches instead of headaches being caused by high pressure, what a knob). So, the optician who did this test said that she suffered from terrible migraines before but she hasn't had one in ages because she went to this migraine clinic in London. They work from donations given my patients that are seen. So basically, we'd have to pay to go. 
To be honest, I do not want to go. I am fed up of constant appointments and brick walls and medication and side effects and feeling shit but not knowing if it's me or the tablets causing it. It's confusing and horrible and I just want a break. 
However, my mother, who constantly fails to listen, booked an appointment the other day for November 1st.
Parents are saying we can make a trip out of it and stay in london and go to the disney shop. Now, the trip and the disney shop sounds awesome to me, but it always has to come at a cost for me. The rest of the family can come and just enjoy themselves but I always have to get something shit to go with it. It's always bitter sweet, never just sweet for me. It's annoying because my parents went on their own trip to london and then promised they would take us. Now they are, and I have to go to an appointment in order to go? fuck that. I'd rather just not go. It's severely annoying. And it's the fact that my mother fails to listen to the fact that I DON'T WANT TO GO. My parents also said that if I went, then my dad would get an appointment too because he also suffers from migraines. However, surprise surprise, it's just me who has an appointment. I always have to deal with the shit. It's simply unfair. 
You may be thinking 'but what if this is the appointment that cures you?' .. and to that I say, that is what I think about every appointment. Every little break through we've had (such as finding the high pressure from the lumbar puncture) I think they're finally onto something and therefore onto a cure, but it never works out that way. I'm fed up of getting my hopes up and getting let down. Fed up of putting myself through appointments and stressful and sometimes painful procedures for no benefit whatsoever. 

It's difficult to get people to understand what a migraine is when the word is thrown around so causally. But there we go.

Basically, I'm in hell loads of pain lots of the time and everything I do to try and help it is pointless. Paracetamol doesn't work, various medications don't work.. They won't let me have things such as an oxygen tank for when I struggle to breathe  because of the pain (apparently too much oxygen can cause headaches), they won't let me have bigger stronger painkillers because apparently they cause 'pain killer headaches'. Can they really be much worse than the current pain I'm in? probably not.