Diary of a Brave Soul

"Isabella Marie Swan

Beloved Daughter & Brave Soul

Always In Our Hearts

1987 – 2005"

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"This illness is to fatigue what a nuclear bomb is to a match. It's an absurd mischaracterization." Laura Hillenbrand – Author of Seabiscuit: An American Legend

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Dear Diary, Today Sucked

Once again, they ignored me. I sat in the corner, my bag on the chair next to me, and had lunch by myself. All the other girls were on the other side of the room, in a big circle, laughing and eating together. I was invisible, again.

My lunch was good, like usual, and I silently thanked my mother for buying blackberries. They brightened up my day. It only took me ten minutes to eat my lunch, and then I left. No one said bye. No one even looked as I got up.

I hid out in the library, among the stacks near the back, and read over the book for my next class. At least if someone was to look over, it appeared like I was busy, rather than hiding out.

How many more days am I going to have to endure this?

They just don't see me, and when they do, it's with judging eyes.

One o'clock came, and my father picked me up to take me home, like always. He asked about my day, and I told him about what I'd learnt, but that was it. I was too tired to think. He didn't seem to mind the silence, but I did.

No one spoke to me at school, could he not have struck up conversation, too?

Either way, the ride was long and silent. I got home and crawled into bed, finally finding comfort, and went to sleep.

That was it. That was my day, Diary. I wake, go to school, learn, eat lunch by myself, hide in the library, come home, sleep, and then repeat over again the next day.

Tomorrow will be no different. See you then, M.E.

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"These patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society."

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Dear Diary, Today was Worse

I thought yesterday was bad, but today was much worse, Diary.

Although I hate being ignored, it was better than what happened today.

They made comments, sly comments, but it was clearly directed at me. No, Diary, I'm not being paranoid.

"Wouldn't it be great to go home and sleep in the afternoon?"

"Oh, I'd love a life like that! Always having an excuse as to why I'm never there or haven't done the work."

"Yeah, when really you're just lazy!"

How could that not be directed at me, Diary? How could it not?

I was there, once again, eating my lunch in silence. I had my phone out and was playing Angry Birds, and they started talking. It's hard not to hear them when they're the only noise in the room. So yeah, I listened in, and it hurt.

They think I'm a faker.

Why, Diary? Why would I fake this? Why would I throw away all my hopes and dreams for this?

I cried about it when I got home. I couldn't help myself. The bed was so inviting, so I snuggled under the covers and cried.

Even now, Diary, I'm getting tearful. It hurts.

Some of them, I thought they were my friends. Clearly I was wrong. They laughed and sniggered and joked about how great it must be. I wanted to yell at them, scream at them, and make them experience the hell that I call life. Instead, I took small bites out of my sandwich and fought back the tears.

Diary, will it ever end?

Until tomorrow, M.E.

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"This illness is of major importance because it is so prevalent and because it has such devastating consequences: afflicted patients are frequently unable to work or carry on with usual social activities."

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Dear Diary, There's A Party

It's Friday, so of course there is a party on somewhere.

Well, once again, I'm not invited to this one either, and it really is invitation only.

The girl brought in a bagful of invitations and gave them out in groups. Friends were to invite friends so the whole year could go. Yeah…I didn't get one. I think 'my' invitation went to one of the girls in the year below. A squad of them are going, so I can only assume.

All my 'friends' got an invite, but none thought to have me there. No, that's not true. They thought about it and didn't want me there, that much was clear. I could tell by the way they were reluctant to tell me about it. They didn't want me knowing the location, the time and the date. I wasn't invited. I got it.

Friday's the only lunch I eat with others, but today they ditched out on me. The whole common room was packed with everyone discussing what they were going to wear, whose house they were going to for pre-drinks, and how great it was going to be.

I couldn't sit in there.

I got to the door, saw them all happy and laughing, and left.

Despite not being allowed to eat in the library, I managed to get away with it. The librarian didn't notice, thankfully, so I wasn't sent back to the common room. That would have been torture.

By now, everyone is over at each other's houses and having fun. I'm lying on my bed, writing to you, Diary. You're the only one that listens. You're the only one that knows I exist.

Until tomorrow, M.E.

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"One of the most characteristic features of the illness is the fluctuation in symptoms which can be induced by physical and/or mental stress."

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Dear Diary, I Have Nothing To Do

Saturday is always uneventful, as you know, and today is no different.

My parents are out, both doing different things, and I can't go with them. My bed is keeping me company, and my laptop.

I couldn't help but look on Facebook, and now I wished I hadn't, Diary.

The pictures were up from last night, and everyone seemed to have a great time…without me. My group of 'friends' didn't seem to even notice my absence. While I sat home and watched horror movies, they were having a blast.

To make matters worse, I was even tagged in one of the photos. It was air. I was tagged as air.

I really am invisible, Diary.

Seeing as I'm non-existent, is there really any point of me being here anymore?

Until tomorrow, M.E.

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"The most difficult thing to treat is the severe pain."

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Dear Diary, I'm in Pain

It's acting up today, and I'm in a lot of pain.

My legs are too weak to stand, and they're shaking. My hands are, too, but at least I can write with them. Granted, my writing is all scribbly, but still, I'm trying.

My mother had to feed me earlier. I couldn't hold use the cutlery, and I didn't have the energy to get it to my mouth. She didn't mind, and we joked about it, but I feel useless. I can't even feed myself, a toddler can do that.

I haven't been able to shower, obviously, given the state I'm in. My father did offer to carry me into the cubicle and put me on the seat, but I wouldn't have been able to undress myself from that point on, and I didn't really want my mother doing it. Yeah, she's done it before, but it makes me feel even worse.

They're both worried about my weight, and I think the doctors are, too. I can understand their fears, but I'm trying to eat as much as I can. It's just, sometimes it's really hard. I sleep too long and miss a meal, or I can't get down the stairs to the kitchen so have to skip them.

I know what action they'll take next, but I'm pretending it doesn't exist for now.

Going to stop now, my joints are swelling up and aching. I need to sleep.

Until tomorrow, M.E.

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"80% of our cases are unable to work or attend school. We admit regularly to hospital with an inability to care for self."

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Dear Diary, No School

I couldn't make it out the bed, so I can't go to school. My knees gave way when I tried to stand, and I now have a lovely set of bruises covering my right arm and legs. My mother had to help me back into the bed, and I hated the look of distress she had on her face. It pains me to see her like that.

Every joint and muscle aches, and I can't take the pain. I've doped myself up on painkillers, three too many, but it's finally relieved some of the pain. The doctors really need to start giving me stronger ones. I can't keep upping the dosage; it'll kill my organs.

Pft, then again, who cares about the pills killing my organs. They're no good anyway. Useless things.

Seeing as it's Monday, and I emailed the teachers first thing this morning, I have the work I need to do for next lesson. I don't think I will get it all done, but I will try. They're understanding, so it should be okay.

Going to leave you for now, Diary, as I can't keep my eyes open.

Until tomorrow, M.E.

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"In comparison with other chronic illnesses such as multiple sclerosis, end-stage renal disease and heart disease, these patients show markedly higher levels of disability."

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Dear Diary, I Want New Legs

My legs don't work. I can't feel them. I can't move them. They are basically useless.

I want new ones. How do I get them?

Yes, Diary, I'm being serious. I really do want new legs.

The doctors did say this could happen, but it's a lot scarier than I thought it would be. Of course, I got stressed and made everything else worse. Typical M.E.

I want new legs so I can go back to doing the things I loved. God, how I miss running. People take running for granted, Diary. I would give anything just to be able to go for a ten minute run, to not have my knees give way, to not have my ankles and said knees swell up on me, and to not have to endure the pain for a week following.

Just one run, Diary, that would be heaven.

Sadly, I know that will never happen, so for now I shall just have to stick it out. For now, I'll take some painkillers and go to sleep, maybe they won't burn like they're on fire when I wake, and maybe they won't give out on me. I can only dream.

Until tomorrow, M.E.

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"I hope you are not saying that these patients are not as ill as HIV patients. I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses I would rather have HIV."

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Dear Diary, No One Missed Me

I went back to school today, and the only ones who noticed my absence were the teachers. They seem to be the only ones who can truly grasp the significance of my illness. But, then again, there are others that don't.

I expect my fellow students to disregard my illness as a technique to get attention, but I don't expect it from members of staff. Does prejudice know no bounds? Am I going to be condemned for being sick for the rest of my life? Am I going to be judged and shunned forever?

Normally, I don't do P.E. as it's after lunch. Unfortunately, they're preparing for Sport's Day. It's in a week. I remember when I used to take part, and I miss those days. Hurdles, long jump, high jump, javelin, 100m and 200m race, 400m relay race etc. I loved it all. My name was down for all of them, and while I didn't always win, I did earn points for my House.

Of course, since I got ill I've had to stop. It seems that the P.E. department never got that memo, though.

Immediately I was asked why I wasn't changed, when I explained I was sick they demanded a note. Why, Diary, would they need a note when I had missed every P.E. lesson for the last four years? Were they purposely being cruel?

The debacle ended when some of my classmates took pity on me and explain to the teacher about my prolonged absence. The teacher thought I was lying, but shrugged it off and started the trials.

I walked off the pitches and headed inside, going straight to the girls' bathroom.

Diary, I'm tired of being sick, of missing out, of being held back, of watching my dreams smash in front of my face like they meant nothing, and most of all, I'm tired of living.

I want this to end.

Until tomorrow, M.E.

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"The three most prevalent causes of death in these patients are heart failure, suicide and cancer and that the age of death is considerably younger than in the general population."

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Dear Diary, 42 Pills

I've missed school for over a week straight, and my parents are getting stressed by the constant sleep I seem to be in. I'm only awake for three hours a day, Diary, and when I am awake, I lie motionless in bed while my mother feeds me.

I've had enough.

Sitting next to me, Diary, is 42 pills. I have Aspirin, Paracetamol, and Ibuprofen. Sadly, the Co-codamol pills have been removed from the cabinet and I can't find them.

This is it, Diary. This is farewell.

My sixteen years have been good, but not great. I've had many fantastic memories, some unbelievable ones, but the illness has won. I'm defeated.

I hate to think of the pain this will cause, but I need relief from my pain. There is no quick fix. This illness will kill me, whether it be now or in thirty years, it will kill me. Frankly, I'd rather do it on my own terms than its.

Thank you for listening, Diary.

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"It is an increasing medical phenomenon leading to high levels of chronic morbidity."

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Dear Diary, It Didn't Work

I swallowed 42 pills, went to sleep, and woke in agony.

My father wasn't in town, so my mother came home to find me restless in bed. My abdomen was killing me. It was so painful. She sat in my room and watched over me, thinking it was just the illness, and listened to the gibberish I was saying.

The pills had made me high, rather than take me away from my pain.

I managed to eat a little something, but was promptly sick afterwards. That was it, Diary. I swallowed 42 pills and that was it. I vomited once.

They didn't work.

I am at a loss now. Was this a sign from God? Am I meant to stay on this Earth and fight? Or did I just mess up the dosage, Diary?

Until tomorrow, M.E.

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"This illness feels effectively the same every day as an AIDS patient feels two weeks before death; the only difference is that the symptoms can go on for never-ending decades."

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Dear Diary, I'm Addicted

My painkillers have become my best friend. I take 24 pills every day. That is 1 pill an hour, which is about 16 pills over the recommended dosage.

I know that I should stop taking them, but they're the only thing that helps me make it through the day. I am not numb to the world, like I want to be, while I'm on them, but they to relieve some of my pain and discomfort.

However, my daily intake of pills has also caught the attention of my fellow classmates. They have nicknamed me 'The Druggie'. How original.

It hurts, Diary. They have no clue how much pain I am in, and yet they make fun of me for it. It hurts.

Will my life ever consist of something other than pain?

I guess I will never know.

Until tomorrow, M.E.

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"No clear effect of any treatment has ever been demonstrated in this devastating illness"

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Dear Diary, I'm Fighting For My Dreams

It's that time of the year where everyone gets ready to submit their applications for university, and I am no different. I refuse to acknowledge the worrying looks from my parents, my family, and my teachers.

They think I'm being unrealistic and foolish. But how can I not be, Diary?

What else have I got to live for?

I have no friends, I have no hobbies, I have no life. Why do they want me to give up my dreams after I've had to give up everything else? Why, Diary? Do they not know that without a goal in life I may as well be dead? Do they not know how hard it is to give up on your most important dreams?

I worked hard for four years to make sure I took the right classes, got the right grades, and took part in enough social activities so I was the ideal candidate for studying medicine at University. Overnight, that goal shattered into a thousand pieces and became completely unrealistic.

Have I let go of that dream? No, and I never will.

Does it hurt to see my classmates apply for the course I should be applying for, too? Yes, ridiculously so. Some of them decided over night that being a Doctor sounded like a good idea, whereas I've wanted to do that since I was 10 years old. How is that fair, Diary?

But I compromised. I took Medicine off the list of courses to study. Was that enough for them? Of course not.

My University choices were unrealistic apparently. The ones I chose would never take an applicant like me, mainly based on my predicted grades. How is a B not a good grade, especially considering I have miss ¾ of the classes? How can they not see the potential that I have to offer and give?

Diary, I would do anything to go to university, and I don't get why they're trying to stop me.

I've slaved on my application, and I'm submitting it. They can't stop me, I won't let it happen.

Until tomorrow, M.E.

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"In my experience, it is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages."

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Dear Diary, Feed Tubing

The doctors are seriously concerned about my weight and have given me protein drinks to take. If I don't gain any weight in the next month then they will tube feed me.

Tube feed me, Diary.

Where was the warning for this? And why are they only giving me a month? It's not as if I'm not trying! I eat every day, as much as I can, and I'm not eating any of that fat-free, low calories, diet now, slim fast crap. I'm eating the good, full of calories, very fattening stuff!

Why me, Diary? Why me?

Once again, I feel defeated. No matter how hard I try, I fail. So what is the point of trying anymore?

I know, Diary, you're probably sick of hearing it. I'm sorry.

I'm sorry I'm not healthy, I wish I was, with all my being.

Best to leave it at that, Diary, as I have a protein drink to take. It's meant to taste like Strawberry Milkshake. I imagine this drink is what baby sick would taste like. Enjoy that thought, Diary.

Until tomorrow, M.E.

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"Every time you look closely at someone with this disease, you see immense suffering. There appears to be no limit as to the human toll that this disease is capable of exerting on patients."

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Dear Diary, I'm Done

My last hope, my last dream, it stole.

The doctors forced reality on me today, and my last chance for a life died, along with all my hope.

All my hard work, all the nights I fought sleep and pain to get my homework done, all the time I spent revising, all that effort, and what for? Nothing.

The harsh reality is, Diary, that I'm not fit to go to university. While I have been given conditionals by several of my choices, it wouldn't make a difference. I wouldn't manage it.

University was meant to be my freedom, Diary! It was meant to be a place for me to get my life back, make friends, and have fun! Instead, the reality is that I have years ahead of me where I have achieved nothing and I will rot and die in a bed.

It's over. I'm over.

I have to withdraw my applications, let the universities know I won't be taking up their offers, and I have to drop all my exams for this year.

Why, Diary? Why me?

There are people out there, healthy people!, that would never work as hard as I would so why do I have to give up university? Why do I have to be ill? Why can't it be someone else? Why does it have to me?

I'm so tired. I'm so tired of losing all my hope, of losing all my dreams, of losing my life. I just want to be healthy.

I've tried so hard to keep it all together, and today it unravelled.

In September, I had originally planned to be at university, whereas now, I will be stuck in bed, rotting away. The world won't miss me when I'm gone, Diary. No one but my family will feel the loss. And even then, it will come as a relief. I will no longer be a burden.

Why me, Diary? Why me?

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"The fatigue present is similar to that found in disorders of the central nervous system such as multiple sclerosis, Parkinson's disease and multiple system atrophy."

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Dear Diary, Long Time No Write

I abandoned you, Diary, and I'm sorry about that.

The last three months have been hell. Despite managing to avoid tube feeding, the doctors did keep me on the protein drinks, and I have had to rely on crutches to get about. Basically, I don't move from the bed.

I have examined every inch of this room, now.

This is where I will die, I know it. This bed, this room, this house, this town; I will die here.

It could just take one virus and that would be it, all my suffering would end.

Some days I wish for that virus, others I just wish for peace. I get neither.

I don't know what's going to happen, Diary, and I'm scarred. I have no future but this bed, and I'm scarred. Who would miss me if I was gone? Who would really miss me?

Now that school has finished, who would notice my absence from this world?

I just don't know what to do.

I'm rotting away, I'm losing the will to fight, and very slowly, I'm dying.

I don't know what to do.

Until tomorrow, M.E.

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"The myth that this illness is never fatal must be dismissed. I know of several people who have died of the complications it can bring."

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Dear Diary, Isolation

I see one person, that is the extent of my social interaction. With my parents' divorce, my father moving out, and the family all busy, I only see my mother.

She spends as many hours with me as she can, but it's not easy, and half the time I do not even know she's there.

I've stopped fighting, Diary, and I'm letting it take me.

This may be my last entry, Diary. I'm gradually losing the ability to swallow, and I sleep 22 hours a day as it is. When winter comes, I will get sick and that will be it. I know it.

One part of me can't help but wonder how many other people have died like this? How many other teenagers have suffered the same way I have? How many of us have fought an illness that cannot be cured and lost? How many of us have faced defeat after defeat? How many of us have given up? How many of us are still suffering?

For all those still fighting, I wish they had someone like you, Diary. You saved me on many occasions.

I've loved my life, and I wish it didn't have to end like this. I wish I could live, Diary. I wish I could experience life!

Do you know, Diary, that I've never been kissed, never fallen in love, never had sex, never gone out drinking with friends, never been to a concert, never been free?

Well, now it's my time.

I wish it could have been different, I really do.

Love you forever, Diary.

M.E.

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Myalgic Encephalomyelitis

M.E.

Me

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A.N.

Just a little insight to the daily struggles some people face. No offense is meant towards those suffering illnesses mentioned. The quotes are from doctors, scientists, sufferers, medical journals etc. Thank you for reading.