I guess my life didn’t particularly stand out from anyone else’s. I was just an average teenager gliding through life as you do. I loved anything to do with martial arts and fitness. Although as a child I had always wanted to go into the film industry, but as I got older I was told that was too unrealistic; “not a proper job”. Plus my passion for sport and martial arts was growing (I was set to go on a trip to a place called the Shaolin Temple in China to train with the monks there), so that’s what I decided I wanted to do with my life. P.E was my favourite subject; anything that wasn’t physical bored me. I loved stories of inspiration, pioneers and against-the-odds-books such as Nelson Mandela and Christopher Reeve, but I never thought anything like that would happen to me, that happened to other people. Not you or I, other people. I guess they are simply a stronger breed of people that you only hear about and see on TV. Surely nothing like that would ever happen to me?
My mum says I came into the world afraid: When I was a baby, whenever a friend or relative of the family came into the room I would always try and crawl out. I was incredibly shy and timid, and my communicational skills where limited; I would much rather think than talk. I have always felt like a bit of an outsider, like I can’t really connect with some of my peers. Say if I was with some friends, I probably wouldn’t look out of place; I would still laugh with them and do the same things they do, but I would sometimes really feel like I’m slightly different or can’t completely connect with them. When I was younger I wasn’t sure if that was a good thing or not. For example if I was on a train, when I look at everyone else on there way to work or wherever there going, they all look like they are in a complete trance, afraid to stand out, I sometimes feel like I am the only one really awake.
I had always been very sick as a child; I had a lot of ear troubles and because of that I had a lot of antibiotics throughout my childhood (which was to be quite a big contribution to the cause of my M.E). Due to this I have missed a lot of school, so my attendance record has always been quite patchy. Therefore I have always been a step behind everyone else, and usually the bottom of the class. Plus I was always one of the youngest in my class. I never particularly liked school, especially primary school where I got bullied – ‘sticks and stones may break my bones but words will never hurt me’ is the biggest load of crap I have ever hear in my life. It’s the complete opposite! That’s one of the reasons I grew an interest in martial arts, it gave me a certain self belief, not confidence, but a trust within myself.
When I was about eight or nine, my parents informed me they where going to get a divorce. I can remember it quite clearly; I was sitting on the sofa opposite my parents who where sitting next to each other. My mum was obviously waiting for the tears to come, but they didn’t. I can’t quite remember the emotions I felt. I defiantly didn’t express them outwardly; I would (subconsciously) keep them bottled up. I wouldn’t have known how to ventilate or explain them at the time. I was the youngest of two elder sisters. So I was the only one who actually moved back and forth between my parents, as my sisters would have been practically independent by then. Which I think I found quite lonely because I didn’t have anyone to share the experience with.
I was back and forth between my parents houses like a yo-yo. Almost every other day I was packing up my stuff to go to my dads. When I got to either my mums or my dads, I had so little time to settle in, that in the end I didn’t really feel like a had an official home. The only definite home I had was body. Whether I was at my mum or my dads place, my real home was in my little shell around me. If I was with my mum, I would call my dad half a dozen times in the evening saying that I wanted to be there, and if I was with my dad I would be calling my mum saying I wanted to be with her. I just wanted to be with them both. As young and naive as I was, I though there was still quite a high chance that they would get back together. I remember saying to my sister, with hope; “Do you think they’ll get back together?” Obviously she made me realise how ridiculous this was. I thin that’s when I truly realised that they where separated.
I would find myself getting into detentions for not having the right book or the right kit (because it would be at my dads when I was staying my mums or either way round). My dad and I would be zooming round to my mums at seven in the morning before school, realising that I had left a book there that I needed. It was chaotic. My school work was meaningless compared to what was going on at home, my grades where suffering but that just wasn’t on my agenda, my mind couldn’t have been any further off my work when I was at school. Despite my age, I was well aware that my dad was very depressed, and lonely too. When I was there it would just be the two of us, in a very cramped flat. So we became quite close, or at least closer than we would of before. We would often through a ball in the hallway, trying to beat our record (in my dads attempt to pull the wool over my eyes about his depression). But whenever I left, I would always worry about him, wondering if he was lonely on his own in that flat.
I hated school at that time, I would dream about being older and being to finish school and do what I want. I couldn’t wait to hear that bell ring for home time. Although when I got home, I hated the situation so much that I would want to be back at school. So the only place I felt truly comfortable, was in my bed, just before I was about to go to sleep. Because I would be dreading the next day so much that my bed would just seem so comfortable. I so didn’t want to go to sleep, because when I did I would wake up and it would be morning, and I would have to face the day ahead. I prayed to just vanish. I would be shivering from nerves as I put my clothes on, just wishing that it was last night in bed again.
I found secondary school very tough and hard to adapt to at first, it was very daunting, but as I got older and became more confident I gradually settled in. A few years into secondary school, life seemed to be going smoothly: I had a girlfriend, was finally catching up on school work (at least up to mediocre grades like everyone else), making tons of friends, and my Thai boxing was going great. The above were all I cared about in life and nothing could take them away from me, could it? And if so why?
The next big set back in my life was when my mum was diagnosed with cancer. At first – like when my parents got divorced – I didn’t really know or understand how I felt. At first she didn’t seem too bad, but when she starting having the chemotherapy she was like a zombie at times, and was in a great deal of pain (that I would be able to truly relate to in years to come). I had never seen her like this before. It wasn’t just watching someone else who I loved crumble, but like watching a part of me disintegrate. And most of all there was nothing I could do about it. Again I kept most of my emotions inside. But I thought about it most of the time. I think my mum thought I wasn’t very worried, but I atcully just found it too hard to digest at the time. It’s overwhelming to try and comprehend what I would have done if she were to die. One year on: my mum was still struggling with the aftermath of chemotherapy and surgery. Only to find out on the day she finished chemo that my grandmother (her mum) was dying of cancer. Five weeks later, she passed away. It was a devastating blow for everyone, especially my mum. Not long after that my grandfather (my dads’ dad) died too. It just felt like pile after pile of shit pouring on me, mostly family related.
Anyway despite all this I was (over) training intensely; I was down the gym everyday, kickboxing everyday, running everyday, and was just generally pushing myself way beyond my limits (which I didn’t believe I had). But either way I was stronger than ever, mentally and physically. Plus the huge crack in my life – confidence – was overflowing which was an amazing feeling considering my past had made a very big dent in my self-esteem. The more friends I got, the more confidence I got, so the more friends I got, etc. By now was school was a real joy; I would be so excited to go in a see my friends. There were so many people to say hi to. It was rare I had a spare weekend, and for most of my evenings I would spend endless hours on the phone.
Then one Easter, I gradually started gradually having incredibly debilitating symptoms. In time, after being passed from doctor to doctor I was diagnosed with M.E, otherwise known as chronic fatigue syndrome. Possibly one of the most misunderstood illnesses of today (partly because many people still believe that it is in the mind, only now are doctors starting to acknowledge that it is a physical condition, and a recent experiment showed that it could be in the genes). Around 200, 000 people in the UK have M.E, and about 25, 000 of them are teenagers. It can be a very severe illness that according to the medical profession there is no specific cure for. That’s the thing about M.E. If you break your leg, you can go to doctor; they will bandage it up for you etc, and tell you how long you have to rest it for and so on. So you are comforted by the fact that you know that you know how long it will take and the fact that you will be ok. But with M.E, you’re told that there’s no cure, no drugs or medicine you can take to ease it and you’re not told how long it will take for you too heal naturally. You’re just told that all you can do is rest, and wait to get better. So you’re left in an anxiety. You hear about cases where someone only had M.E for a few months, and then you hear about some who has had it for twenty years and ended up in a wheelchair! So you have no idea how long it will take, which makes you feel vulnerable. Also – as you have been told that there is no specific medical cure – you are intimidated by the epically broad range of possible treatments. So the patient is left with a variety of anxieties. I spent much of the year bed bound and at one point physically unable to walk. With this condition there are chronic symptoms such as severe constipation, insomnia, nausea, extreme fatigue, excruciating muscle aches, dizziness, head, ear and throat aches, very bad circulation (because of the lack of exercise), and non stop flu like symptoms.
I didn’t have any control over my body; I didn’t have the energy to do anything that I wanted to do. Everything that I had loved doing was physical, and hadn’t even got the energy to walk. I slowly lost touch with my life and watched my ambitions of becoming a martial arts or fitness instructor wash away. I wasn’t at school anymore, that was beyond ridiculous me being able to physically attend at all. But the fact that your energy is at zero and practically bed bound and unable to do anything amplifies the pain of minor symptoms – which would otherwise be bearable, like a headache – a lot. You just have to lie there and take it. My body was a cage and my mind had become the prisoner. It was like my mind was alive inside a dead corpse.
In the few months of being passed from doctor to doctor, before I was diagnosed, my parents just didn’t know what was wrong with me. I was staying with my dad at the time, he would try and get me up in the morning, but I just couldn’t do it. I couldn’t explain how I felt. Everyone just thought I should just get on with it. I can remember my dad arguing with my mum on the phone, her saying about how I just had to go school. My dad didn’t understand the problem with me, but he knew there was one. He would say to my mum that if she could see me, she would realise that there was something definitely wrong. I would be crawling down the hallways to tired to walk, rarely could get out of bed, wasn’t eating much and was sleeping for 80% of the day. I had also become very sensitive to light; I would always have the curtains shut and the light off. I thought the arguing between my mum and my dad was all my fault, and the rough time my dad was getting from everyone was all my fault to. I didn’t understand why I was feeling like this. Even when I was officially diagnosed, people still had a very “just get on with it” mentality towards me.
But after about a year of this nightmare, I started getting better and gradually got some of the pieces of my old life back, but I knew that I could never quite put the puzzle back together again (which looking back I think was for a reason – for the better that is – except I certainly didn’t think so at the time). So I did my best reintegrating back into the world, but found it very frustrating at school having to explain to everyone where I had been. On the first day I got back to school I was drowning in a flood of questions such as “Where have you been?”, “I thought you had moved schools”, “You’re so lucky: you’ve had a year off school”, “I thought you left the country”, “I though where dead”. Someone even nicknamed me ‘dead boy’. It was incredibly frustrating not having anyone to relate to or understand what I was going through, and I was still very emotionally fragile and vulnerable.
Luckily I caught up with a considerable amount of my school work which was incredible as I had always struggled with school work and been one of the bottom of the class, and just missed a year of school. After time I made friends again and I was even training again! In PE a lot of people commented on how skinny my legs where (I guess they failed to hear that I had not been able to walk for most of the past year), but still I didn’t care because at least I had the energy for PE in the first place! After a while I finally felt on top of the world again and the hell that I had been through was finally completely behind me, and I could finally start my life again! Things where going smoothly: I had more friends than ever and was doing alright at school, and was becoming very interested in a girl in my year too. Things where not so good at home but I tried to sweep that under the carpet by socialising with mates regularly. I had got to the peak with my martial arts training too (this was when I got a chance to go on a trip to the Shaolin Temple). Nothing could knock me down again surely?
It was just about a year after my recovery; I had just a small virus, nothing to worry about. But my immune system was still incredibly weak – which has always been a problem, not helped by the amount of antibiotics I had taken as I child – but it seemed unable to fight this tiny virus and I slowly fell back into nightmare that I thought was behind me forever. This made me realise (at the time) that M.E was always going to be a black cloud hanging over me that I would never be able to get away from. I was now back to square one and I had never felt so emotionally or physically drained, I had lost all sense of hope. I was having minimal sleep and missing meals because of the constipation and nausea. I got all my old symptoms back too. It was like climbing Mount Everest then realising that I’ve only climbed the first bit, the real climb is just about to come.
Once again I was unable to attend school. I slowly became lonely and isolated, and had never felt more on my own. My days had become unbearable and to painful to handle, I just wanted someone to stop this! I would have done anything to stop it. I was dragged through everything in the book; doctors, paediatricians, specialists, acupuncture, reflexology, aromatherapy, healing, raiki, homeopathic doctors, cognitive therapy, cranial and so on. But nothing was working, although I have to say, the alternative therapies such as acupuncture very beneficial (much more than the conventional medical treatments, not that there where any) but still it was nowhere near curing me, only easing the pain. It was frustrating having to talk to doctors, because most of them still thought it was physiological. It was tiring having to get up, get dressed, get in the car and go to these treatments that I didn’t think it was even worth it. Plus I was very anxious about how much trying everything to get me better was bending my parents wallets.
I had never been so low: I had lost my girlfriend, and basically lost complete touch with my friends, was it really that hard for them to come visit me every now and then? Or call me? Even text? Although I would get the very occasional ring from someone which if I have to be honest just made me more frustrated because all he would hear is stuff like; “Oh you’re so lucky you get to stay at home all day and watch TV, I wish I could do that”. What!? They had no idea! And on top of that most of the time I was to exhausted to have a conversation anyway. I remember once someone asked what M.E was, I replied with the basic symptoms such as insomnia, extreme fatigue, dizziness, muscle ache (not wanting to go into to much detail) and I got a reply saying “Oh yeah I get that sometimes” You what!? A lot of people don’t understand that fatigue isn’t just tired after a long day: you just don’t have anything functioning properly in your body, a complete loss of will. It feels like you have not eaten for days, like you’re a car with absolutely no petrol. A prime example of this naivety was when I told someone how tired I was, I got a txt back saying “Just drink some coffee; that will give you energy” – Just drink some fucking coffee!? I said to myself. I wish it was that bloody easy. But I can’t really blame them as I probably wouldn’t have understood it either if I hadn’t gone through it, but still it defiantly didn’t seem like that at the time.
By now I had lost touch with a lot of friends and realised who my true friends were as some of my previous “best friends” hadn’t even rung me once. M.E had really taken everything that mattered away from me: my girlfriend, my friends, and my physicality. I was still sick of how much people would undermine the situation I was in, thinking that they understood. The “problems” that they would worry about seemed so pathetic and meaningless (things like whose going out with who at school), compared to mine. The only thing that seemed to require my friend any form of willpower seemed to be homework or something like that, and a lot of my friends couldn’t even muster up the determination to do that. But like I said before; its not there fault, I would probably have been just the same if I hadn’t been through this.
I was physically worse than ever and it was mentally really taking its toll on me. So my paediatrician advised me to go see a psychotherapist as he thought I was clinically depressed. This was to try and make me happy (by the means of a pill) and hope maybe then I would improve physically – Bullshit I thought; I wasn’t depressed. This made me incredibly mad and I lost even more trust in the conventional medical ways. I got so frustrated when I was told that he thought I was depressed, I thought – he sees me once every six months for about fifteen minutes, that’s half an hour a year and he thinks he knows me? But I had to have an evaluation because otherwise it would seem from the school’s point of view that we weren’t doing anything to get me better, because alternative ways don’t seem to count (even though throughout my whole experience doctors and specialists have done nothing, and natural/alternative ways have significantly helped me, and in some ways where the cure).
So I went to the psychotherapist, I was unbelievably nervous in the waiting room. I couldn’t help but notice the psycho in psychotherapist, did this mean it was all in my mind? Was I insane? My head was overflowing with over-the-top anxieties like this. I just wanted to go home. I was greeted by two of them, one of them seemed nice and relatively normal, and the other could probably be mistaken for one of the mental patients. Both my parents had to come in too. So the five of us sat there; 70% of the session was silence, I wasn’t sure if they where waiting for me to say something, or where just studying me. But if you walked in the room, I think I would be hard to distinguish who was the client. After that, the nice one took me off to a different room and the moronic one stayed with my parents.
When I sat down in her office I felt so helpless, like she had complete control over me, like she could send me to a mental institute in the snap of the fingers. The first thing she said was how many people she had treated with M.E (like I was another notch on her clip board) and how she really understood because she has been round to some of her patients houses for 3 to 4 hours at a time; I was furious; just because you’ve met someone who has M.E doesn’t mean you have any idea what its like to it have everyday for the past 2 years. After she shut up about her credentials and we had a quick chat, she got out her notepad and said; “I’m just going to give you a test now to see if your depressed or not, these questions are only a guideline to help me”. As you can imagine I was so tense when she said this and suddenly I started sweating. At the end of the session she said I was deeply depressed, if I had the energy I would have stormed out! Because wouldn’t someone who was in excruciating pain 24/7 be a little bit frustrated about it? Aren’t these normal reactions? I can’t imagine many people bouncing with joy in this position? I made it very clear that I completely disagreed, but that didn’t mean anything as she couldn’t possibly be wrong. At the end of the session I lent over to her and said; “Do you think that you could through a day in my life and come out with a smile on your face?” She wanted me to take anti-depressants and sleeping pills. Obviously I refused, but it wasn’t really an option. I told her that I didn’t want to take them because they might have side effects, and she asked how I could know that if I didn’t know anything about these tablets, and I said yes that’s exactly my point: I don’t know anything about them! She couldn’t seem to understand that. Instead to keep them happy I did a ‘One Flew over the Cuckoos Nest’ and kept the tablet under my tongue, and spat it out afterwards. I just had no idea what I would be putting into my body. Although having to deal with the physiatrists and trying to keep them happy really slowed down my healing process. I just wanted to get on with it!
I understood – after time – that I was deeply depressed, but I just didn’t think that a pill was the answer. Because something like depression come from within, and it must be solved from within. Many people just look for a magic pill, and not for the answer. I wanted the answer; I wanted to solve this problem myself. I felt like nobody understood, obviously this isn’t true but I just hasn’t met anyone who had M.E yet. I found myself questioning everything in life, the meaning, the point, the reason, why are we here? Are we just supposed to be born, go to school, get a job, maybe get married and have kids, retire, then die? Wasn’t there more to life than just finishing school and getting a job and your only point of existence being to eat/sleep/work/party? I just didn’t understand it. I didn’t want to become a sheep, I wanted to do something with my life, I wanted to help people so that no one would have to go through what I had been through. I just couldn’t see a way out of this, I had hit rock bottom and it was pitch black, no sign of light. I didn’t know what I was going to do with my life, without education; I had not been to school for nearly two years. I had the bleakest outlook on life, I couldn’t see the point in anything, for example I would be watching a film and think, what is the point in this, just watching an image on a screen. Or watching something like football, I just couldn’t understand what the point was in just kicking a ball around…I was suicidal. I was affecting everyone around me, my mum especially; she couldn’t go out and do what she wanted to do most of the time because she had to look after me, and had go through the pain of watching me suffer. I felt like I was holding her back, and it was all my fault. I just thought to myself; wouldn’t it be easier to just slip away and only hurt one person (me) instead of hurting everyone around me.
Soon I found out that one of my sisters didn’t believe that my illness was real. She was very ignorant about M.E. It was bad enough having the crapist bunch of friends ever, who didn’t give me any support or help what so ever, let lone even talk to me. This meant that my family where the only thing I had, and to hear my sister, one of the closest people around me say it was all in my mind meant I was completely on my own. I had been suffering everyday for the past almost two years and to hear someway say that, let alone my sister, really broke me down. I truly hated her for that, and many other things. She never once asked how I was feeling, or if there was anything she could do. To this day although I have to love her as a sister, as a human being I truly dislike her. She was always horrible to me as a child, and still is. She has the power to come in a room and within five minutes leave everyone in that room unhappy. She has serious mood swings and is very unpredictable; I got tired of trying to guess which one she was in. She was a serious set back in my healing process, and was a definite contribution to my depression. It was the same with my mum when she had cancer, she would be so aggressive towards her. She would never ask if she could get anything for her either, or how she was feeling after chemo. I can clearly remember hearing some of the arguments, my sister just laying into her, and when you just have absolutely no reserve left, and are running on empty and just trying to survive, it was heart breaking for her to deal with. It got to the point where my mum actually kicked my sister out the house. She has been living with my dad ever since. It’s a miracle he hasn’t chucked her out too.
I was so tired that my memory was becoming terrible: I would find myself completely forgetting things that my tutor (I was having a few hours home tuition a week) had taught me the day before, which obviously made it incredibly hard to study and learn anything. The insomnia had gotten so bad that I was getting only a couple of hours sleep every night, if that. But It wasn’t because “I just can’t sleep” it was because I was in so much pain. I would get so frustrated that I would want to tear my pillow apart. My sleeping pattern was so distorted, that there wasn’t really a difference between night and day. I would be having hot or cold (depending on my temperature), at four o’clock in the morning. My severe constipation was something that could hardly be ignored. It was so pain I would be on the floor in a ball holding my stomach for up to an hour. At one point I wasn’t going to the toilet for weeks at a time which meant pretty much anything I ate would come straight back up; I was frightened to eat anything. I would do anything not to throw up again. I was guzzling litres and litres of water a day to try and give my body something to run on. Also because of the fatigue it was a big effort to talk to anyone, or do any routine functions such as – I remember one day I was trying to read something, when I realised I had been staring at the page for about twenty minutes in a complete trance. This was because my body was so energy-less that it was just shutting down every now and then because it just couldn’t function properly. It was incredibly disorientating. By now I had been through such a rollercoaster of emotions: loneliness, anxiety, anger, sadness, self pity, determination, hopelessness and most of all frustration (if I had the energy I probably would have pulled my hair out). Things had become so desperate that I didn’t think life was worth living anymore.
I just didn’t know what to do with myself. I would lie there – too tired to get up, but to tired to watch television or read anything. To exhausted to bother to reach over and get my water. I couldn’t possibly imagine how anyone could have energy; my mind just couldn’t fathom how anyone could perform simple daily tasks. I had completely forgotten what is like to have energy. I truly didn’t believe that I would every have any form of vitality again. I would never be able to just run up the stairs again, I would always have struggle and heave my way up the steps. At night – when I couldn’t sleep – I would try and visualise what I wanted my life to be like. I would picture myself on a film set, naturally, in the director’s chair, ready to roll, everyone waiting for me, but I just didn’t have the energy to get out that bloody chair. It had been so long since I had any energy that it was just burned into me that I would never get it back. I would open my eyes and beat myself up about not doing the visualisation “properly”, and momentarily give up. But after I had calmed down, I would try again.
After about twenty minutes of gearing myself up, I would gently sit up. I could feel my sinuses and all the blood rush down from my head. It was an awful feeling. I would take a sip of my water, and then slowly get up, not wanting to arouse my nauseous feeling. When ever I moved I felt like I was about to vomit. One step at time I would make my way to the bathroom and go to the toilet or put me feet in a cold bath to try and cool down my temperature. My temperature was like a yo-yo, I would be hot and flustered, so I would put my feet in cold water or put a wet towel on my head, and then suddenly I would be shivering; rapping piles of covers around me, huddled up in a ball. Then after a while I would have to take all the covers off my in an effort to cool me down again. I just couldn’t seem to hit the right mark; it was either one extreme or the other. After I had come out the bathroom I would then slowly walk back to the sofa and lie down, exhausted from all this activity. When I would first lie down after getting up it would feel like all the blood in my body was pumping around my head, as if it where going to burst.
When I opened the fridge or just went into the kitchen, the smell of food would make me start heaving, and sometimes throw up. Water was all I could drink, I couldn’t take anything with flavour, like orange juice, it was just too strong. When I eventually had to eat something, I would have to chew in slow motion, pausing after every other chew, to make sure it stayed in my mouth, and not in my sick bowl. It was like having a chronic flu or glandular fever for two years, and maybe even for the next ten years, I didn’t know. I didn’t care anymore either.
There’s a ripple effect with all these symptoms; for example with the severe constipation, that leads onto nausea and head aches. The insomnia leads to a limited span of concentration and memory, and more fatigue. And the extreme fatigue leads to the muscle aches, and bad circulation due to the lack of exercise, etc. Then those symptoms create other cycles; for example the nausea and constipation puts me off food, which means with the lack of nutrition will be making me more fatigued which will mean even more muscle aches and lack of exercise. It goes on and on in a downward spiral.
I believe that there are two cycles in life: a good one and a bad one. I also believe that the mind, body and spirit are all connected (nothing has shown me that more than M.E). Say you are reasonably healthy anyway, you’re eating well and exercising, you will obviously feel much healthier physically, and then that will make more emotionally happy and content with yourself. The cycle goes on. I was on the opposite cycle. I was feeling physically terrible, so I was frustrated and depressed, which gives me less energy and willpower physically, which means less exercise, which means more frustration and depression, and so on. I had quite literally spiralled down to rock bottom. Now I had a choice: I could stay in this hole (which was tempting: just too completely give up, which 90% of myself already had), or I could climb out. Although, at the back of my mind, I knew that there was not an option – I had to climb out.
That’s the thing about M.E; there is no option. Everyday for the past two and a half years I have been in some form of pain, you can’t take a break from it, or take a holiday from it; you just have to bear it. If you had M.E, and you had the choice to not have it for a day, would you take it? That’s a silly question I know, but that’s my point. You’re being forced to reflect and think about things you never would have other wise. Its like when you ride a bike, say you think you can only ride about three miles, after you have done your three miles say you get lost, and you find out that you have to cycle ten miles to get back – so you will do it, you have no option. Pain is there for a reason. If I didn’t have any physical pain with my M.E then I wouldn’t have done anything about it. If I just had a warning sign that said ‘You must use every ounce of energy you have to finding a cure’ I probably wouldn’t have done anything about it. But it’s because of that pain everyday, and not having an option that it forced me to take action. That is why M.E makes you so eternally strong!
Now, I had decided I was going to do anything to get on the upward spiral, or in other words, pull myself out of this hole. But, the transformation from one cycle to the other is not easy; because you have to go down first to go up. Although you only have to go down in the short run, but in the long run you will benefit from it. For example with my insomnia (and fatigue) I would struggle to get up at a regular time due to my hay wire sleeping pattern. Now in the short run, I would have to feel a lot worse, because say I had set time of getting out of bed at nine o’clock, and had only finally gotten to sleep two hours earlier, I wouldn’t be able to anything during the day, which would make me even worse. But if I kept this up then I would quite literally have to bend my sleeping pattern back into place. But like I said, in the short run, the severe lack of sleep would not allow me to concentrate with my tutor, causing another downward spiral. But in the long run, when my sleeping pattern was bending back into place, then I would be getting a bit more sleep, therefore would have more concentration…etc. If you imagine a big rock on a hill, it might take a lot of energy to give it the push to get it started but once it’s going down the hill it just gathers more momentum. That’s what I mean about exerting more energy than you have in the short run, but the in the long run you feel the benefit. But because most people aren’t willing to go through the pain first, they stay behind.
By now, obviously my dream of becoming a martial arts or fitness instructor was out the window. I had actually lost most of my interest in it by now because of my lack of energy and my rejuvenated passion for film. That I once thought was to unrealistic. Now I had a little bit more energy, I started scriptwriting, which I think was one of the things that helped me keep my sanity throughout my M.E. I found it very therapeutic. It was something that I could actually enjoy whilst I had M.E! Plus the life experience I had gained from my pain really gave me some meaningful things to say in my writing, which I wouldn’t have been able to otherwise. By this time I had read quite a lot of books (which I did find immensely tiring), which I would have never done otherwise. I do not consider it a coincidence that all the things I loved in life pre-M.E (girlfriend, friends, martial arts/sports), where taken away from me, and the fact that I wasn’t doing well with my work, I was forced to focus wholly on it and try and excel mentally, and the only other thing I could do was dig up my buried passion for film. I am now so grateful that I have had M.E, because it lead me down the right path in life, and stopped me from going head first into the wrong one. I was starting to see some positive benefit from this pain I was going through.
I had always been very spiritually inclined as a child, although I didn’t talk to many people about it, because I thought they wouldn’t understand me. When I got M.E, I went down that path and really tried to nurture it. Read a lot of books on it, and meditated regularly. Meditation was the key to getting rid of my major anxiety. Anxiety is like a snow ball rolling down a hill, gathering more and more snow and momentum until it’s a gigantic snow ball. For example if I had to go out to an appointment or something, I would get all these anxieties, like “what if I see someone from school? They wouldn’t understand why I was outside? They might tell everyone at school that I was skiving!” and it would just go on and on like that until it go so overblown it was unreal. I remember one time when I had to go to a shopping centre – which would have been a big deal at the time – it was unbearable, I felt so vulnerable and open (which is what you feel like when your weak), like everyone was looking at me, everyone was judging me. The noise, everything was just completely traumatizing me, I was so terrified. My mum just couldn’t understand this. But with meditation, I have the power to step out the box and look in, and realise when I am doing the snow ball thing, and ill be able to stop myself from over blowing the issue.
I got my hands on a book written by a man called Alex Howard, called ‘Why ME?’ It was such a breath of fresh air: Our stories were very much alike. I found out that he taught Nero Linguistic Programming (NLP), and specialised in techniques helping people with M.E. I started seeing him regularly; I found him a very big inspiration. He had had M.E for several years, around the same age that I had it, and is currently twenty five and has his own practice. You should have seen the psychiatrists face when they saw the improvement in me due to an “alternative therapy” (which they thought would be useless), when they hadn’t been able to help at all. Alex and I both worked very hard, I took any advice he could give me and gave it 100%, and it paid off. I remember once he had given me something to do for the next session, and when I came back I had done it, he told me that I was one of the few of his patients who really give it my all and would actually go out and do it, which meant a lot to me. He was someone I could really looked up to, because if he could go from the position I was in to where he was now, that showed me how far I could go. He also taught me the power of visualisation, I would lye there actually visualising myself healthy again, having energy and vitality. It was a powerful tool.
I also got an appointment with an acupuncturist and aromatherapist called Denise Usher. She has had cancer twice, so again has a great understanding and empathy. It was absolutely unbearable at first; I was just so weak, I couldn’t bear it. After two or three sessions I told my mum it was just too much, and scrapped the idea. But about a month or so later, out of sheer desperation, I gave it another go. It was agonising at first, but I just told myself that I would do anything to get better, and if this might get me better then I should bear it no matter what. A lot of people say (when there chronically ill) “I would do anything to get better”, but in all fairness they probably wouldn’t, but after over two years of pain I would have done anything to stop it. So we kept going, and didn’t give up. She would give me acupressure, cupping (that’s when you put a flame in a cup and stick it on to you, visibly drawing out toxins), acupuncture needles and some healing.
I don’t know what I would have done without my mum throughout my experience. Although my dad was very supportive too, because of the pain my mum had been through with her cancer, we both had real insight into what each other where feeling. So when I said I was tired, I knew that she understood exactly what I meant, and visa versa. She also had some of the same problems with her friends: when she would just be too tired to talk to them or call them back, which gave us a real connection that we had never had before. Plus she was the one who searched for all the alternative therapies. My dad would lean more towards the western medical ways. Although after time it was undeniable the significant changes in me after treatments such as acupuncture.
By now I was getting significantly more energy. It was a combination of Denise and Alex. Alex was helping me to deal with it, and helping me see the light at the end of the tunnel, and helping me try and move towards it. Denise was helping physically, with her treatments. So because of this – still minimal – but refreshing new energy I had, it gave me more I could work on creatively, such as my reading and writing. Now I finally had the energy to do constructive and creative things, it opened up a new door: I wanted to try other things like painting or sculpting, or anything like that (although I had nowhere near the energy to go that far yet). Creativity is like a “muscle”, if you don’t use it, it gets weak. That’s why most children are so imaginative and most adults aren’t, because you’re born with it, its natural, but if it doesn’t get nurtured, in time the muscle will get weak. But that’s not to say that you can’t get it back with practice and creative exercise.
This is probably one of the reasons I want to make films, because – obviously this doesn’t coordinate with everyone – to me, it involves all aspects of creativity. For example literature (scriptwriting), generating stories from scratch and finding ways to explain and visualise them on a screen, and theatre (acting = expressing yourself), photography and music, computer skills (editing/effects) and even things like sound – you are literally trying to create life on celluloid. Plus it involves a whole array of mental qualities like confidence, communicational skills, persistence, determination, patients, imagination, authority, discipline, passion and enthusiasm. There are just so many things you could say with films, so many messages you could bring across. Although sadly, most films today don’t take advantage of this and have no sense of consequence or morals. It’s just so powerful; you can make someone feel true emotion, you can make them scared, you can make them laugh, you can give them a breathe of fresh air by giving them something to relate to. You can show real love between two people. All you need is an idea. It gives me an overwhelming sensation just thinking about it.
For months my mum had been trying to get me to do some walking. But I just didn’t have the energy. Although now I had slightly more energy, I could try just walking down the road. But like I said before, to change, you usually have to go down to go up. You see if you leave water in a cup, it becomes stale, like my body had, so I needed to start it flowing again. This was exhausting though. I wrote out a schedule to tick off when I had done it. Except I obviously over estimated it a bit, I was planning on walking every other day. But that’s like planning – for a person with chronic M.E – to do a marathon every other day. After my first walk I needed almost a weeks rest before I could do another, the aching felt like it was just getting worse as each day went by rather than the opposite. I couldn’t walk far, only to the end of the road (about 20 or 30 metres), but that’s completely beside the point, because the important thing is that I am actually doing it. Walking was to me what sprinting at full blast was to an average person. Some days I would only walk to end of the driveway, but the point was that I had actually got out of bed, got dressed and walked out the door. That’s progress in itself.
The really difficult thing was that I had to make myself get up in the morning, and make myself go for a walk, there’s no one standing there with a whip. If my determination and discipline flails slightly on a bad day, I would get a set back; I would take one step up and two steps down. This took extreme discipline. But discipline (as well as things like memory and willpower and imagination) is like a muscle, and if it is worked regularly it will get stronger. That’s the reason that an adult’s imagination (for examples sake) generally isn’t very good. Because say your fifty years old, and you haven’t used imagination to any great length since you where ten, then you have given that muscle forty years to deteriorate. Think about what would happen to you legs, if you didn’t exercise them regularly for forty years. But muscles such as imagination and discipline can always be retrained again. After a good few months of gentle walking, Alex and Denise, I was finally at the beginning of a very long road to recovery.
I still carried on with the visualisation. I would be lying there with my eyes closed, picturing myself (on a film set) with energy, which I was gradually finding easier to do as now I had a taste of what energy was like again, I could just about comprehend what it might feel like to have normal energy again. Even before I went for a walk just to the end of the road, I would walk it through in my head first, step by step, and 90% of the time I would always reach the destination I set in my head.
Now I had jumped the walking hurdle, the next was of course my GCSE’s. Which were only a couple of months away and I was not anywhere near prepared for them. I still hadn’t even finished my coursework (which my Tutor and I where planning to get out the way first). By the looks of things I thought I wasn’t even going to be able to get any GCSE’s, therefore not be able to go to college, therefore not be able to get a job let alone follow my dream. I was so worried about it. On top of that despite my improvement in energy I still struggled with the sessions with my tutor, so how on earth was I going to sit through a two hour exam!? I had to put the walking on hold and put the work first, because it would only be for a few weeks. By the time we had finished the coursework, I was able to endure slightly longer sessions, and had longer spans of concentration (because of the walking I had been sleeping more therefore been able to concentrate more) than I did before. But I still had about two years worth of work to do in just over a month (that’s pretty much a term a week). I had a lot of odds stacked against me. But I had a goal, and that was to study my passion (film). I don’t think I could have done it with the prospect of two more years of maths or science.
For about a month I had been strenuously revising. Literally, all I had been doing was either, eating, sleeping or studying. I stopped walking, watching TV and reading, as I needed every bit of energy to go into my revision. I was only doing the core subjects (maths, science and English), which would be just about enough to get into the college that I wanted to get into. I had an interview for the college I was applying for not long before this. On the way there I was shaking, and started having some of my old anxieties again like “what if he doesn’t understand what M.E is?”, and “what if I don’t get the place? Where will I go from there?” The interview went perfectly in the end. He couldn’t believe my passion for film and some of my ideas, and the interview very quickly went from an interview to a general chat about film. He offered me a place, which was a huge weight off my back; all I had to do was get the grades.
Something I actually found very ironically inspiring was when I spoke to any friends, because when I asked them how the revision was going I would always hear the same sort of thing: “Oh I can’t really be bothered”, “No I haven’t started yet…”, “it’s to hard” or “Ah effort man”. This actually just made even more determined, because I had been putting in every ounce of energy I had into this, with M.E, two years of work to learn in a month, and all the odds stacked against me and – bearing in mind there perfectly healthy – they couldn’t even pluck the willpower to do any revision.
The school had been very considerate in letting me take the exams at home. The first week went ok, towards the end of the exams I struggled to find that last out ounce of energy but I did get through it. But by the second week my wick was really burnt out. So it was more about just surviving the exams rather than how well I did in them. I was not worried about what results I would get, because I did my absolute best, every time I had energy I used it on revision, and I gave everything I had into the exams so I can’t do much more than that. Besides, if I don’t the grades I might have to do an extra year, but so what, if that’s what I’ve got to do to get into film that’s what ill do.
There is not a doubt in my mind though that I could not have done it without my tutor: Sue Biggins. She truly believed in me, which gave me that extra spur. Because I know in the past that hasn’t been the case with most of my teachers. On my first day of junior school, when I was in year three, I remember we had to write a piece of English, and my friend and I (who where the bottom two in the class), where told it wasn’t good enough by my teacher, who went completely berserk and aggressively tore up our work in front of the class, screaming in my face and actually went to strike my friend who had to run away from him. I don’t exactly call that encouragement. My mum says that she didn’t actually find out from me, one of the other classmates mums had told her what had happened. Despite the head teachers pleas not to leave (because of the bad publicity – she tried to justify it by saying that the teacher had been bullied as a child), we move schools. I was seven at the time. Another time, the school wanted to borrow my books, and two other pupils from the class (to see what sort of standards of our class was). I remember thinking I was really lucky at the time (I was told I was one of the special ones), until I realised that one of the other pupils just happened the top of the class, the other an average pupil, and I’m sure you can guess what that makes me. I remember being distraught at the time, maybe they thought I was to dumb to realise. My mum says I would regularly say in a frustrated tone “I’m so stupid” There where many incidents like that, and I think that is a deep root into my lack of confidence when I was younger, teachers just have never believed in me, until my tutor. That belief got me an A star in my English coursework, I was the only one in my class (I used to get the lowest marks in the class). Maybe that’s what has given me my drive, to prove everyone wrong.
Now I had finished my exams, I could focus wholly on my walking and getting my energy back. There still where a few thing to knock me off guard though. Such as my oldest sisters divorce, and still having to tolerate the other sister’s abuse. But I had come so far I couldn’t afford to let myself get set back. I considered myself like a leaf in a pond, and the problems of the close people around me being ripples, that rock me about, some ripples bigger than others. But what I had to learn to do was not let myself get rocked over, and (not in a selfish way) not let anyone else’s problems weigh me down. I have enough in my boat as it is.
A few weeks ago, it was my sixteenth birthday, but I treated it like it was more than a birthday, it was the end of a chapter, and the beginning of a new one. It’s been a bloody long journey, but I’ll be forever eternally grateful that I have gone through it. I consider the past sixteen years of my life to have been learning, preparing myself for the world and my future ahead of me. To reap what life lessons I have learnt, and to use them and put my theory’s into practice. The reason for thinking this is because this year will be starting college: studying film. Which is my passion; what I want to with my life. I have decided – quite a while ago – that I am going to dedicate myself to my passion. Giving up is not even a questionable option. Life is just too short to waste, especially if you have a dream. Persistence is one of the key qualities needed for film that I talked about earlier. So that’s what I am going to do, I have a destination, so I am going to persist and persist until I get there. But that’s not to say I won’t enjoy the ride.
So, the big question: Why ME? Well, when I triumphed M.E the first time I had it – although was obviously over the moon to be better and be free again – I didn’t feel I had gained anything from it, I didn’t see any benefit in having have gone through it. It was just a horrible experience. But then (and I don’t consider coincidently), I had a relapse, and this time worse than the last. But now I have triumphed it a second time, looking back I have profited so much from it; I have learned so many things. I really feel that I have soaked everything I possibly can from the experience, because things do happen for a reason, and that’s why I got the relapse, because I hadn’t learnt what I was supposed to the first time round, I had ignored the warning sign. But now its time to close this chapter of my life, and take what I have learnt, and move on. As soon as I realised I had learnt everything I can from the experience, the energy really started to flow again, and that’s when I really started to get better in dramatic way.
There a different stages of M.E (like any other illness): Learning to accept it – Learning to deal with it – Learning to live with it – What can you do about it. With any problem, there’s a chain reaction: Problem = Dwelling on it/Realising how bad it is – Resolving it – Seeing the silver lining. The dwelling part of the chain is completely pointless, it gets you nowhere. My dad is a professional dweller, and when he gets a problem or has a lot on his mind, he’s not a cheerful person to be around. So you have to learn to cut out the dwelling on it part of the chain reaction, and just cut straight to resolving the problem (if you can, because if its a problem that you cant do anything about then there’s even less point in dwelling on it, and realising how bad the situation is, because there’s nothing that you can do about it!), its up to you whether you want to ignore the silver lining or not.
This time round, I have been forced to take a step back and analyse my life and other peoples too. Ask questions about life: the meaning, the point, the reason were all hear. That’s why I am so grateful that I can see this now, and not when in my forty’s or fifty’s. Time is so precious, and I am savouring every minute of it, like each day is my last. People hate taking the time to look at there lives, and ask things like; “is this what I really want to be doing with my life?” people need to step out the house and look inside the window for a change. Last time I got over M.E, although I was healthy and enjoying life again, there still was the black cloud of M.E hanging of me, and I always knew that I could have a relapse. But this time, I just know that it’s over. I have learnt what I needed to. The overwhelming relief fills each pour of my body. The feeling of accomplishment, I have climbed my first mountain, and not the last I’m sure!
I can’t wait for my life to unravel. Because although I have a goal, a destination, I still have know idea how it is going to map out. But that’s the adventure! The fact I am writing this, is almost a closure to my M.E. I have tried to write about it in the past, but found it difficult, because it wasn’t time for me to close the door yet. But now it finally is. It’s been such a rollercoaster journey, but I will never forget what I have learnt, and will be forever grateful and appreciative that I have had this experience; I don’t where I would be going in life if I had been through it. I have so much I want to give now, so many people I want to help. There are still many questions about life that I can’t possibly fathom or comprehend the answers to, but all I know is that it’s huge, and goes by fast, and that I have got to make the most of it. I have such a big appetite for it, and I’m starving.
In one of my final sessions with Alex, he asked me just before we were about to get up and leave, if I would like to break a wooden board (by punching it). He had obviously been planning this. At first I was completely overwhelmed by the idea, but he gave me the choice if I wanted to do it this session or we could just do it next. The old M.E part of me was about to say next session, but the new healthier me, thought would go against everything we had been talking about. As we stood up it took me a second get my head round it what I was about to do. Alex said how he remembers asking me this about five months ago, and me just not being able to every think I would have the energy to do so, that was just a completely different planet to me. He told me that it’s rare for someone to break it there first time, so might take about ten goes. We did some powerful breathing to bring some energy into my body. I visualised myself breaking the board, and got rid of any thoughts that was telling me that I couldn’t do it. He held the board up, and imagined that it was the M.E – the last barrier, all my fears and anxieties that where caused by my M.E, where about to be smashed. This would be me officially breaking down the last barrier. I opened my eyes and just went for it; my fist went through the solid block of wood like it was cardboard. My hand didn’t hurt at all. I had torn down the final psychological shield. It took me a few hours to actually realise what I had just done, I was so overwhelmed by this feeling of energy and empowerment that I hadn’t felt it so long. I have kept the two pieces of broken wood on my shelf, as a symbol of my M.E.
Not long ago when I went for a walk, there was a warm breeze, everything just seemed so perfect and peaceful, I looked around me and everything just seemed to be so beautiful, the trees, the cars, the road, everything. It felt like it was the first time I had every seen the world. I got that feeling I used to get when I would run around as a child; I knew I was finally free. It was like I was an ocean, that had been crashing with waves and colliding with rocks, but now, it was finally still. I felt so lucky – I have two arms and two legs, I can see, I can hear, and I am alive and I’m free, and ultimately, that’s all I’ll ever need to know – the rest is all materialism. Knowing this, makes the pain and suffering I had been through, and any problems I have – whatever size – seem so minor. All my problems faded as if someone was turning down the T.V, and everything I have got to be appreciative for (not all the little things – just living, right now) seem so huge. The air just seemed so fresh, my seemed so clear, and for the first time, I was truly happy and peaceful in a way I had never felt before. I joyfully sighed as I dropped my shoulders, as if to say it was over, and I naturally lent my head back and held my mouth open; I was washing in relief. My eyes started to water. I had done it.
Update
Since the writing of his story last year, Paul has gone onto direct and edit a feature length documentary on the clinic which was produced by Alex. For more info please visit www.FreedomFromME.co.uk
Paul can be contacted at: paul_michael_young@hotmail.co.uk
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