THE COLLAPSE OF YOUR LIFE
JANUARY
So you've got back from a rather enjoyable meal out to celebrate the new year - perhaps a late night curry if that suits you. Turns out you wake up in the night with a bad bout of food poisoning and are left throwing up a couple of times that night. If you lie very still and try not to think about it, you can sort of drift off to sleep.
FEBRUARY
Naturally, you've been continuing as normal since recovering from your food poisoning. But something doesn't seem quite right. You're going to bed a lot earlier than usual. Feeling a lot more tired, but not a lot more sleepy - because tired and sleepy are different things. Things in the evening are starting to pass you by: like watching the television, for example; it is just easy to glaze over.
MARCH
What you are noticing now is a kind of blurriness, fuzziness and flatness to your vision in the evening. Your view starts to look a bit like a recording on television - it is hard to perceive depth, and light begins to affect you in strange ways, like when you stare at a light too long and it makes dark smears across your vision: well, it's like that, but you don't even need to stare at the light; the smears are always there. People's faces are starting to look especially weird: flat, blurry, like parts of it are being erased or something.
APRIL
You wake up in the night with more food poisoning. You get up to be sick but somehow that's not quite it, so you're not sick. Your heart is thumping, and you start to feel dizzy, numb, and light-headed. But this is so dizzy, and so numb and so light-headed that it is frightening. Coupled with the vision problems we mentioned, this is quite an unbearable situation, and your body starts to shake and shiver. Maybe you feel like calling an ambulance. This is a panic attack, and I'd never had one before either, so it is bound to be scary. There is some discernible weakness to your body that allowed space for this attack.
MAY
You are finding it hard to see your friends, or keep up with your work. It's hard to explain to them what is happening. Maybe you're tired, maybe you're exhausted. You know that exhausted feeling you get when you return home from somewhere shopping and collapse on your sofa? Well, now you get that feeling before you've even set off. Maybe some friends think you're being lazy, or you don't care about them, or they're unhappy because you're "never free" or whatever. Some actually just completely ignore you for some reason, which is starting to feel a bit at odds with your life - as if you're sliding off into the gravitational grasp of some massive unseen cosmic vastness behind you, and they are simply not. You start having rests after lunch and after dinner just to give you enough energy to get through the latter parts of the day, because there is certainly not as much energy as there was.
JUNE
You try to go out, try to see someone, but when you get back you find yourself utterly exhausted to the point of feeling sick. If energy were money, it's like someone has stolen your money, and now you only have £5 a day to catch the bus, and see your friend for coffee. Do you skip the coffee, and miss time with your friend, or do you go over-budget? If you go over budget, you wont be able to afford the bus home, in which case you need to borrow from a Loan Shark, or risk being stranded. If you borrow, however, you know you wont be able to pay it back, because you only have £5 a day. So the Loan Shark breaks your legs, and you can't climb the stairs.
JULY
Your muscles are weak now; in fact, they ache pretty much all the time. But because they ache all the time, you sort of don't notice it, until you get to the end of the day and realise your jaw hurts from having clenched it all day to bide the pain. You feel tired all the time. Exhausted all the time. The vision problems from a few months ago have spread from the evening to cover your vision all day and everyday. This can naturally be rather unsettling, and coupled with other things such as dizziness, headaches, and numbness the whole world can feel rather unreal and just not somewhere you want to be. Just not someone you want to be.
AUGUST
You are increasingly sensitive to things. Sound, loud or repetitive noises are a real distraction and can cause headaches - a room full of people talking sort of merges into one continuous sound and it is only with immense concentration that you can discern what the singular person is saying to you. And how on Earth do you explain this to them in mid-conversation? Tummy upsets are more prevalent too, so it is extremely common for your tummy to swell to a great and painful size as if you are having a baby. As soon as you lie down flat, the unhappy tummy gets more upset, and stomach acid seems to flow freely upwards causing painful heartburn. You can now only sleep with the head of the bed raised up to partially dispel upward-flowing acid, and each night you almost always need a peppermint tea and Gavison to keep your tummy settled.
SEPTEMBER
Your brain feels like it sort of gets stuck. A "clouding of consciousness" it is sometimes called; like you're standing on the top of a hill, looking down over your thoughts, and then suddenly this great mist descends and fills the valley, and now it's hard to make out what you were trying to say, or think, or remember. It's okay to have a laugh sometimes when you say the word "banana" instead of "thank you", but it can also make you look rather a fool when you know know know you're not; there's just some mist in the way. This fogginess grows over your consciousness so that you start to lose touch with who you are - you can start to feel like you're just some kind of vessel that contains a "you" buried down inside it somewhere, but who knows where. The more tired you get, the more you lose your "self", until you are a nothing person - a puppet person that just steps and moves, and maybe smiles if you can remember what that's like. Where did you go? Who are you?
OCTOBER
There is certainly no refreshment in sleep. Often you wake up feeling worse than you did the previous evening, and even that was pretty bad. Actually, there is a deep ache in your muscles when you wake - it really feels like someone has come along in the night and smashed you repeatedly over with a cricket bat. Food has lost a lot of its taste; well, everything had lost a lot of its lustre months ago now. So it's really hard to eat - to have the enthusiasm to eat - but you know you must, because you need the energy it can give. Huge migraines can knock you out for hours on end, and you find your throat is getting sore, like there is something stuck in it. So you've got a wooden spoon stuck down your throat, and in the back of your head it feels like a needle is piercing right though your brain to your eye. Sometimes you wobble and bump into things. Sometimes you even fall over. Sometimes you burst into tears.
NOVEMBER
You're waking up in the night now drenched in sweat, sometimes as much as three times a night. Somehow, this seems to be additionally painful, and accompanied by weird nightmares where you silently scream yourself awake. Then you awake into a dark room with waves of visual disturbances, and occasionally strange visions that dance frighteningly before your eyes. The next day you are exhausted. You need to lie down a lot - maybe you can only walk around the house for 20 minutes before you can no longer hold yourself up. Don't even think about being able to leave the house for a walk. You can't read - you haven't done so for months - the words and letters just smear unhappily over the page so you end up reading the same sentence over and over and over and it still makes no sense. Anything that involves holding your head up independent of some support is very strenuous and tiring. To be honest, standing up will destroy you. If you stand for too long, you risk headaches, dizziness, faintness, and pain - but you don't think about that while you're standing up, of course, it just creeps up on you later.
DECEMBER
You can't do this anymore. It is completely fair to say there is a lot of hopelessness within you - it surrounds you, it absorbs you. No one can understand you, let alone attempt to break through it. You go to bed, you look at your bed - with all the visual disturbance, it looks strange and unhappy; your anxiety tells you it is wrong, tells you it is bad. You go to bed with a churning stomach, and the anxiety pulling at the corner of your head. You can't do this anymore. Pain weighs down your body, but you're beyond that now - you've reach a point of unfeeling; a point of blandness in food or play or knowledge. Even crying seems so far away; to cry would be a relief. Fear is in you - you've never had to fight with it before. How can you sleep knowing this? How can you even contemplate going out to see your friends? You wake up in the night, and your head pounds, and your heart beats, and your body shakes itself into another panic attack that comes out of nowhere: it comes with the illness; it is out of your control. "You," it says, "are going to die. You. You will die, and you will do it now." And it is the most frightening thing in the world.
. . .
JANUARY
JANUARY
You know, really, that you have a few very good close friends - people who know the word "Friend" means so much more than "person I have on my Facebook". People who support you, and understand you, and make you laugh. With these people around you also know your strengths - you know that you actually need to be pretty mentally and physically strong have gotten through all that past trauma and such. With this strength, you can dispel any hopelessness and keep yourself engaging and intelligent even when it's difficult - you know you have to be stronger than a normal person in order to appear like a normal person, because you are not a normal person. You also know that you're one of the kindest people you know. Actually, come to think of it, while you were partially bed-bound, you still managed to gather together 20,000 words to print into a book: a selection of which was presented to your tutor Nathan Filer who said that it was a "joy to read". If you can be that naturally creative whilst being ill, goodness what are you going to do if you get better?
The 12th of May is Chronic Fatigue / M.E. Awareness Day
Overall, there is always something good around the next corner. Everyone in their life has their problems, whether big or small, but I must admit it is sometimes bothersome, sometimes laughable, to hear these problems shouted out as if they are the be all and end all, when really, the person just bruised their arm on a night out. It's amazing to see how much a single unit of something can absorb a healthy person, and yet here I have described many, many complications that have lead to the partial collapse of my life, and the lives of others with M.E. When reaching this stage, I can also offer my further and utter conformation that there is no God to be found here; the belief in some Godish overseer seems ludicrous in comparison to the utter pain and distress that has manifested in some cruel counter against my own continual kindness and hope.
Energy is one of the most precious things we can have. Energy links directly into life, and without energy, parts of life shut down. It is very easy for people to take their energy for granted, so I hope I have made a fair contribution to this awareness day. It's a jolly struggle, I'll say that - not only physically, but to remain positive too. It is very easy to feel weak, and of course, I do, but there is a surprising strength in that weakness that I have created to partially pull through it. Most importantly, I know I am a positive person, and a good person; and there will be so many more "joys to read" whether they are stories, creations, or new friends.
Energy is one of the most precious things we can have. Energy links directly into life, and without energy, parts of life shut down. It is very easy for people to take their energy for granted, so I hope I have made a fair contribution to this awareness day. It's a jolly struggle, I'll say that - not only physically, but to remain positive too. It is very easy to feel weak, and of course, I do, but there is a surprising strength in that weakness that I have created to partially pull through it. Most importantly, I know I am a positive person, and a good person; and there will be so many more "joys to read" whether they are stories, creations, or new friends.