| My Story. | |
| This page contains my artice from newsletters and people's story's by vicki My roller coaster year through ME ‘Oh your in school today are you, how come you’ve been off again, ‘inquires an inquisitive, maybe even nosey person. What could I say, why had I been off, there’s nothing wrong with me, the doctors and tests all say so. So why do I feel like sleeping all the time? Why all this pain in my head, Why? I find myself asking myself while the inquisitive person stands in front of, with a disapproving look on their face, expecting an answer. ‘I um, I’ve been of with a migraine’, well its not too far from the truth, I do have a migraine a constant one which I have had for 5 years now. ‘What for 2 weeks?’ comes the reply. What should I say, should I explain I am always with this headache, should I explain how tired I am, that I don’t feel like getting out of bed in the morning should I? Instead I just mutter a ‘yes’ and disappear off trying to find a close friend who would not bombard me with questions. She was right though, why was I off school so much? Everyone was tired, this was year 11, the most important year of our lives if the teachers are to be believed. There is course work to be completed and courses to be finished let alone the piles of homework we are subjected to every night. I would wake up feeling just generally ‘unwell’ and as if I hadn’t had any sleep at all. But I would get up get washed and dressed. I would normally get stressed with mum and like wise as we had to put a note together to explain why I had been off, on a whole we would say ‘headache again’ or occasionally ‘viral infection’. I did have a viral infection, I always had a cold, I was never to be found with out lots of tissues shoved up my sleeves of my jumper, which would never leave my body. After this I would rush into school before most people got there so I could do some homework, which I hadn’t completed the night before. As I pushed the door to our form room open my friend would greet me with her books spread out across the table. We would swap pleasantries and when I asked her how she was she would always answer, ‘knackered’ or ‘shattered’. So its normal to feel like this, am I imagining that I’m ill, maybe I’m feeling just the same as everyone else but am finding it harder to cope, maybe I’m weak. I can’t let people know that though so when I asked how I was I would nearly always answer that I was ‘fine’. Slowly more people would trickle into the form room, most inquiring if I was feeling better now, they were trying to be kind but once more I am faced with the question of what should I say? I would tell them that I was better and well again. What else could I say? I would struggle through the day, desperately trying to ignore the terrible sharp pains that penetrated my brain, affected my breathing for a few seconds where the pain was so intense. Trying to concentrate, trying to ignore the feeling that I was almost ‘separate’ from everything else’. Once a week, we had PE, the dreaded physical education in which around 5 classes of boys and girls are shut in one very noisy sports hall with one teacher, not that they were often there and made to play sport. Some of the girls sat on the floor like 5 year old children winging that they were too tired to join in, I wasn’t going to join them. I was going to beat this tiredness, I could, if I put the effort in, I could do it. The hour felt like a day, the noise droned on in my ear holes, filling my head, causing it to spin. After school I would walk home, I only lived a 15 minuet fast walk away. Apart from days when mum was passing my route, then she would stop in a little car park about half way and give me a lift. How I used to hope and pray she would be there every day. When I was walking I felt so tired and in pain both with my body and still in my head that the only way I used to make it was by playing a little game in my head to keep my mind off everything. I would look at a point, it might be the traffic light, or the scout hut or even something as small as a rock or a piece of chewing gum on the floor, and I would estimate in my mind how many steps away it was, then I would walk extra quick trying to get to that point, counting my steps as I went. Was I really 15, is that what normal 15 year olds do? At last, our street, my house I can see in the distance, I’m nearly there, I made it, and I’m home. I used to have a cup of tea with mum when I got in and we would both chat about our days. Gone are those days, gone are the great days when I would rush home as I had dancing lessons to attend that night. Instead I would dump my heavy bag down in the hallway, make an A line for my bedroom, get changed and get into bed. Do most secondary school kids have a sleep when they get home? I would wake up after a while and get up unwillingly, I knew I had a lot of homework to do for the next day, teachers wouldn’t except a simple excuse off people that they are too tired to do their homework, not that I ever hadn’t finished work in time for lessons. I wasn’t going to let a simple thing of tiredness beat me. I’d try to do as much work as I possible could, after all I knew I had tomorrow morning to complete it. I’d force a small portion of dinner down, maybe watch Eastenders, and be in bed again by 8. Apart from fridays when I would go swimming early in the evening, well exercise is good for you isn’t it? This carried on for a few weeks, gradually my attendance at school became worse, I would manage one or two days but take a few to recover or sometimes a couple of weeks. I then did work experience with the ambulance service, which I loved, but it left me almost housebound. My GP became more concerned and after trying me on what seemed like thousands of drugs referred me to a paediatrician. I wasn’t holding me breath, I had seen a neurologist before, the top one in the country if the press are to be believed, he was my Nan’s consultant too and has always been good to her. He did the usual MRI scan and repeated blood tests that I had had done many times before. After several sessions, most costing over 100 pounds, put me on more drugs and carried out lots of expensive tests he came up with the advice to ‘join Weight Watchers, it will take the pain away from your head’. HOW IS THAT GOING TO HELP? I felt like yelling, I had only just complained of no appetite and no energy. I came away and ignored his advice and never returned. Last I heard he has quit working there. I was referred to the paediatrician privately on the Monday and had an appointment by the Saturday which I was pleased about. My parents and I traipsed over to Guildford again, I had been to this hospital so many times the usual receptionist always greeted me with hello, back again, and I never had to give my name as he knew it, a regular customer you could call me! After a consultation lasting over an hour and after being bent in all sorts of peculiar positions the paediatrician said the words which would change my life totally. It sounds like ME to me. My mum looked glum and said ‘I was afraid of that’ but if I didn’t feel so ill and drained I may of danced around the room. From then on, when I am asked, ‘why have you been off’? I can tell them what is wrong and they will understand, oh how wrong could I be? I came home and recalled a magazine article, and a feature on Ceefacts. They said if you want more information on ME go to the AYME web site. Which I did and I decided to join this charity, I can not explain how glad I am that I did, Things were to get worse for me though. I still continued to deteriate, my mental abilities worsened, often I struggled to string words together to form a sentence, my parents would give me some simple instructions but I would totally forget, often only seconds after receiving them. I would spend most of my time in bed, venturing out only when the house was quiet, then I would bring my duvets slowly downstairs and lay down on the sofa, trying to recover from my hike. Sometimes, I couldn’t have a full cup of tea as I was too weak to hold something so heavy. These were the bleakest moments, friends started to drift away, they simply didn’t understand, my relationship with them changed for life. I got down and very frustrated at times. Some evenings I would walk around and around in a square through boredom but I simply wasn’t well enough for a social life. I did feel a little better in the evenings though, normally when everyone was wanting to go to bed, but mum would often stay up and play a board game with me, I couldn’t cope with anything else. My muscles wasted in my legs and have only returned with weekly hydrotherapy sessions. The pain was almost unbearable, I just wanted to fall asleep and never wake again. Slowly I started to improve, I made a lot of friends through AYME and would chat to them at night over the internet, it was easier that way, they couldn’t hear or see me trying to process simple information and didn’t need an instant reply. It was also nice to know I wasn’t the only one going through this, there are hundreds more like me, thousands even. Meetings were held with the school, they promised lots of things. All I wanted was a home tutor and they said they would get onto the homes and hospital behavioural management team to get me a tutor. Behavioural? I’m ill not naughty. They promised that I could go in and have one to one with a teacher on a spare period as I couldn’t cope with a classroom situation. They promised that this would take place near to the front entrance as I was still weak and walking wore me out. They also promised work would be sent home and communication would be regular. Not one of these things happened in 6 months. I would be given a time and date to come in to collect work, I would go in and be forced to walk around the miles (or it feels like it anyway) of mazed corridors. I went in at the arranged times for the one to one lessons and was promptly told to go to my normal lesson. There I sat with my head spinning not having a clue of what was going on around me. I never returned for the rest of my compulsory education. Why is so called ‘compulsory’ education so hard to get when something goes wrong, if I was disruptive to the class or had a bad attitude there are schemes in place to help but I want to learn, I want to do well, but they won’t help me. Over time I got stronger, I started to spend most of my day sitting semi upright in a chair which would have been unthinkable a few months ago. I took some exams from home despite missing all of the second year of the courses and still not being well. I was given an award when they take into account my past results and ended up with 2 C’s and 4 B’s. I even went around to my friends house to celebrate afterwards. I went on holiday and with the use of a wheelchair had a wonderful time, I even felt healthier than I had done for a long time. Then came the big decision. Do I take a year out and recover, maybe take some more GCSEs or do I carry on like my peers with AS levels. There was no doubt in my mind I wanted to study part time at home, with a home tutor and part time at school. The school refused a home tutor and said a part time timetable just wasn’t possible but I could leave in any free periods I have during the day. I decided that this was best. It’s September now. I tried to get back to school but it has made me relapse. I’m not as bad as I was last year but I am nowhere as good as I have been. What will happen with my education I don’t know? It has been a roller coaster of a year with its highs and its very lows. How long this nightmare will last, who knows but what I do know is that I won’t give in, I will get better, I don’t know when it could be months it could be years but I will get there, all I can be sure of is I’m going to beat this and I will get better. I'd like top thank my very close friend Vicky for her story. Having had 4 months off school recovering from glandular fever, my doctor and family encouraged me to gradually return back. I can still remember my first day back when everyone cheered and welcomed me back, it put such a smile on my face. My friends and teachers did everything they could to gently ease me back into school life as I could only manage 2/3 mornings a week. My concentration would go after 5 minutes, I was in a lot of pain and extremely exhausted. People would talk to me and I would nod or smile, hoping that I had given the right response, as my brain just could not process what they had said, which is still very much the case now. It was very hard returning back to school, yet it was an achievement that I will always cherish. It was soon the summer holidays and I had a much needed rest. I was feeling a little better so I went to flamingo land with my friends. I didn’t want to ruin it for them, so I ended up completely over doing it. I was very ill afterwards, yet tried to hide it from my family because I wanted to go back to school full time in September. Which I did for about a week, then I had a big relapse and was referred to a specialist. I was diagnosed with M.E a couple of months later. I was advised to take a year out or drop 5 GCSE’s. At this point I became very determined to carry on, as I knew that’s what I needed to do to stay positive. I was very stubborn and wouldn’t listen to my family or medical advice as I didn’t want to be different from my friends and most of all, I didn’t want to be ill. I didn’t want M.E to dominate my life. I had to learn to pace my school day, spending a lot of time sleeping in the office at school to enable me to manage about 3 days a week. The days I wasn’t at school I would set myself little goals and modify them each day depending on how I was feeling, whether it was to get dressed or walk around the garden. However small it was, it was something to be proud of. I still set myself these little goals now. My GCSE exams were such a challenge, everyone was against me doing them but my determination kept growing. I completed most of them, the exams that I missed I was either marked on coursework alone or given an estimated grade. I passed all my GCSE’s except for science (we worked out that I missed well over 200 lessons in science, so I was still proud of achieving a double e) After my exams I was very ill, spending most of the summer in bed or lying on the sofa, but still setting myself little goals so I didn’t give up. When I was diagnosed with M.E my initial feeling was fear. Certain people didn’t believe I was ill and I was scared of the ignorant comments I would receive from them as my mum has also suffered from M.E. These people thought that I was pretending to have the illness that my Mum had, to get attention. This hurt a lot, but it made my determination grow even more. I remember my mum told me that all truth goes through 3 stages, first it is ridiculed, then it’s opposed and finally it is accepted as the truth. And she was right, those people that didn’t believe that I was ill have now accepted my M.E, and try to support me. My teachers at school were very supportive but I felt like I was being wrapped in cotton wool. I wanted to get my independence back so I decided to go to college to do my a-levels even though I had again been advised to take a year out. I started 3 a-levels, but it was too much for me to manage, so I dropped an a-level and became a part time student. I have just recently sat my exams for my 2 a-levels, which was again very hard, it was such an exhausting struggle but an achievement I am proud of. However, I only sat 25% of my sociology a-level, which is not enough to be marked. I was quite upset by this at first. I felt like I had wasted 2 years working very hard and had achieved nothing. But this is not true, even though I have only achieved 1 a-level, I have achieved a lot. I still believe in myself and have learnt a lot. I have overcome ignorance and judgement. I have now realised that for me personally, going to college was a mistake, as I needed the level of support that I received from my teachers at school. I am hopefully going to university in September, and again I’m being advised to take a year out, but I need to follow my own path and trust in the outcome and myself. I know it will be a challenge but with everything I’ve learnt over the past 3 ½ years, I have the determination to do it. I believe that everything turns out for the best and you will never know what you can achieve until you try. Having M.E has presented me with with numerous personal challenges and although given the choice, I would rather not have M.E; I believe it has enabled me to draw on my individual personal strengths. By doing this I have established an extensive feeling of determination to succeed. In my opinion it’s this determination that helps me maintain a positive attitude towards this illness. The only thing we can control is our reaction to whatever life hands us, and what ever life does hand us we can handle it and learn from it, and grow stronger from it. I believe that managing M.E can teach you if you let it, a lot about yourself and you can find great strength of character in yourself, which will aid your recovery. My personal feeling is never give up; keep smiling and good luck will find you. I'd like to thank my friend Debs for this story Left Behind By Anna TayLor Despite being twins, Karen and I don't have the "inseparable bond" often portrayed by the media and to say we argue sometimes would be a slight understatement but ultimately we've spent our lives TOGETHER: sharing friends in the same class, discovering our own talents and changing our minds over and over about what we were going to do in the future, "when we grew up '- those years seemed too distant to be anything other than the subject of our vivid imagination. That is, of course, until hormones kicked in. Everyone my age real ised they weren't quite "children" anymore and the 'tfuture" didn't seem so far away. Arriving at secondary school it became clear from day one what the next five years work was aimed at -GCSE's! Unfortunately, this is where ME clouded my future and Karen and I could no longer differentiate our achievements by who got better marks in English or Maths (it was normally clear cut - me in English and Karen in Maths!) We've never been particularly competitive and I felt little pressure from Mum and Dad or my wonderful home tutor to gain high grades in my exams but I pressured myself a great deal to achieve, what I deemed, acceptable results. Work and education had always been EXTREMELY important brushstrokes of the "future". I'd put aside my frustration at not doing as many exams as everyone else and was pleased to pass all my six GCSE's. Karen did too and I began to feel optimistic that I would follow in her footsteps and take A-levels at college. However, the unwavering pressure that still gripped to my shoulders like a ten-tonne rucksack and some wishful thinking from those close to me, left me completely drained in every way possible. By the end of three months at college with a gradually decreasing attendance, my body could bear no more, my brain hadn't a clue what it was trying to absorb and I was emotionally shattered. I'd had my chance as far as I was concerned; instead of dreams of A grades and certif icates, in a "grown up future" and an ideal job, I couldn't see past the pain into the next week, day or even hour. All I could see was M.E., nothing but M.E. Several twinges of envy and tears of frustration later, I sat nervously at home while Karen took her A levels. I can honestly say that I have never felt such a tangle of emotions as I did on the day of her results. She had worked so hard and I wanted more than anyone for her to be rewarded for her efforts but I couldn't help feeling that I should be waiting for results too. It had been so great to share our anticipation when we received our GCSE's, I wanted to live that moment again. We all know its impossible to go back in time, so instead, as she jumped off her bed in delight at her A, B and C grades, I hugged her and burst into tears! I was on a high all day. I'd lived a very big part of my life through her for almost two years and I guess, subconsciously, I was embracing all the relief and happiness of the person closest to me (it 's the next best thing to being happy yourself, isn't it?) So now, a year on (Karen has taken a gap year), I am writing this article, contemplating what it will be like when Karen goes off to university. I am not even sure if "university" was ever a part of my dream future but I am finding it difficult to tell myself that going to the shops on a "good" day is an achievement! But I am tying - I really am! However, when I do put everything into perspective, I realise that comparing who's done what is really not the issue here. More importantly, I am losing the people who have, in recent years, been 90% of my social life, the people who have shared much of my laughter and my pain and then I begin to question my reasons for writing this article. I have no answers, no inspirational advice. They haven't gone yet and I can't predict the future (that word again!). There is hope though and something to remember when life is tough: YOU ARE NOT ALONE- I am not alone-because we all have our AYME friends but...(I hear a voice in my head)...but irs not the same. Love to you all. ANNA I'd like to thanks Anna and AYME for a fab article. My First Day at Colleqe By Vicky My alarm goes off at 7 am. I don't want to wake up, I want to stay asleep - but I force myself to sit up anyway. I stumble out of bed yawning, probably because I didn't get to sleep until 4am. I wear a smart pair of black trousers and a sophisticated-looking slash neck top, my "intelligent student" look I'm nervous and excited at the same time. More nrevous than excited. I'm looking forward to being with my friends again - I haven't seen some of them for over a year, when I left school. But I'm worried about how I will cope. I haven't been in that sort of environment for a long time. How big will the tutor groups be? Will I know anybody in my group? What if I have a panic attack? I get myself into a real state. Time to go. I take some ginger (to help with the nausea). and reluctantly sit in the car. I'd like to thank vicky and AYME for a great article. |
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Newsletter Dec 2001 |
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