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The Battle with M.E/CFS
I am not writing this story to be selfcentered, or get attention for myself. I am writing this story to raise awarness of the disease that affects so many people, but people still know little about.
In June 2002 i'd be diagnosed with asthma for a while, i was told that the chest pain and breathlessness i experienced were all part of the asthma. Eventually i could no longer do sport, which people in school found was ok, because i have never been a fan of P.E in school, but outside of school u mentioned football or golf and i'd be there! Eventually i was sent home from school, later to return but with extreme fatigue and just an inhaler to hand.
Eventually we broke up for the holidays, It was okay i was tired, but at the time i didnt realise what was happening. I was due to go away to America in a few weeks but i had to visit the doctor, a monthly check up on the management of asthma, or whatever he calls it! I told him i was shattered, and i had chest pain and headaches and muscle ache. he told me it was all effects of asthma and the medication i was on. So we went 9hours to America and 9hours back. When i got back i felt sick constantly, i was shattered, i was in pain, i couldnt walk properly. I was told i had inflammation of the chest muscles, and had blood tests because of a possible infection. He saw me walking out the door and joked could i go any faster, mum said i couldn't walk faster and i'd been like this for a while. He took me back in sat me down, checked me over and said, you need to go to the hospital as soon as possible for a chest x-ray. We went the same day, i didnt know what to expect, i'd never been to a hospital before! well not for me anyway!
"Xray has been taken and the film is Ok, results will be posted to your G.P" spoke a high pictched scouse voice.
Results came back fine, but he was concerned he sent me to see a general peadiatrician. I met this peadicatrician at an ambulatory clinic, the doctor said i was suffering from the effects of asthma. I also managed to pick up Glandular Fever, and I was sent for physio, to get exercises to use when i'm breathless. Eventually after we had gone back for about the 5th time, mum told the doctor that i had CFS, the doctor said it is more likely its just some fatigue from an infection. My mum said that she no longer wished to consult with this doctor, and gave the doctor a name of a consultant dealing with CFS at the same hospital.
It was a long wait but the appointment came through. I met my current doctor, (who ill call Dr R) at another hospital due to the lack of space. He checked me over and said that i needed more blood tests and a brain scan. I also had to meet a psyciatrist who was going to support the family and help with schooling. By now my Glandular fever had cleared up, but i was prone to infection so i always had a bad thought that i might pick up something nasty. I had a bout 2 chest infections in that time, tonsillitis, and various others, fortunately they cleared up!
I met the psyciatrist in the hospital, it was an adventure: i hadnt been out in ages! He asked about school, i replied it is non exsistent. He said that he was only here for support. After the "session" i went home. A few weeks later i returned for a brain scan and blood tests. I had them done, and had to wait 2months for results. It was a very long,low time. i didnt know what would come up. Days,weeks and months past. The days leading up were full of a nervous feeling, the the day came, Finally i could get my results! I sat in the chair and closed my eyes, and dozed off to sleep, i was woken up a while later, the docter want to check me over. He tapped my back, checked my reflexes, looked down my throat, in my eyes, and listened to my chest as well as checking my pulse. He sat me down again. He said that all results were fine, and i had no glandular fever, but one test was irregular. My thyroid was overactive and i needed a retest. I said thankyou and left.
In March.. He Rang to say that he'd send me a blood tests form through, and he said he'd send me to see a physio to get me walking supports. My blood test from came through but not the physio.
It's the beginning of April. Ive been off school since september, i havent made any progress apart from my sister telling me to put on clothes instead of my pjamas! My physio appointment is nearing, along with my blood tests, my doctors visit is June. By then i hope to be able to do something i couldnt. I really miss school and my friends. Well we are up to date on everything!
Its 19th April. My hospital appointment is imminent, this week to be precise. I have to have a physio assesment, and a few blood tests. I also asked my mum to organise home schooling for me. I shouldn't be doing it it is to early for me, and i realise im not setting a prime example but i have become so bored and frustrated, at not being able to read or speak properly that i want to learn again. I had some bad news that a relative is in Hospital, but i'm sure she will get better, and recover well. I'd like to dedicate the battle against m.e from now on, not only to my grandad but also my grandma.
On friday the 25th of april i visited my local childrens hospital, for the first of many physio "sessions". what did i make of it? TORTURE! The physio herself, was really nice, understanding, but the exercies...ouch! To many others the exercises i do, would look easy, but because i am not using my muscles properly there extremly painful. The only memory of friday i have is pain, and and flourescent lights, not the best combanation for anyone, especially an M.E sufferer! My physio, asked me take her hands and stand up. being the kind person that i am *laughing*, i followed what she said, and stood up. she took my hands, and asked me to move one leg infront of the other. For the first time in over 7months i walked properly! Even though the experience was extremly painful, i walked, it took me about 5 minutes to do it, but i walked! Before i left the physio said i couldn't have walking help, i was too weak or i couldn't cope. If you looked at me leaving Physio, i had an upset face, and was a bit annoyed at the pain, but somewhere inside i was chuffed. I walked! I left the physio dept and mum said, in a rather bright tone "Blood tests", i can't write what i was thinking, but a rather censored version would be "buzz off", i asked could they be done another time, after quite a debate mum agreed and said i could have them done at the G.Ps. The car ride home, i felt a bit happy, and as usual dozed of in to the wonderful world of nod!
The phone rang on saturday morning, around 1pm, it woke me up. It was the doctors, just ringing to say that wednesday would be fine for my blood tests. That was a done deal, and i dozed back off.
On monday i had my home tutor, the lady is called brenda, really nice woman, i learned the digestive system. My body talks to me, and from the word go it was telling me it is too much, but do i listen no! I just want to learn, my next lesson is wednesday. I have blood tests then too, arnt i lucky!
Wednesday has come and gone. I had no blood tests and no home tutoring. I feel ill. To be honest i feel like im going backwards. But im keeping my chin u pfor everybody else. For my mum,dad,helen and family so they wont worry. For joanne so she doesnt get preoccupied, and for my friends who i don't want to know. I feel ill, muscles pain, i feel shattered, im gettin migraines and it is hell. Visited my grandma, she looked a bit better. Im sure she is doing fine. Its nice to see her improving, and she always asks how i am, which i find funny seeing as she is in hospital and really ill too! I havbe suffered an allergic reaction to MSG, a chemical in foods, and me body is weak, and i feel sick, im jus tglad it is not food poisioning!
My MSN screename is Luise-Not depressed but destroyed. i think that somes it all up.
I am not depressed i am destroyed, well my body is! It is knackered. Was a bit upset last night as well, but i'd just like to thank karen for looking after me, i was in a bit of a state! Thanks I think i will keep running till i finish!
M.E is a bit like a race, sometimes you slow down and hav a bad patch, sometimes you momenterilly stop. You have a bit of downtimes. i had one the other night, and how do i get them out? I email karen, but last nights email was 6 and a half pages long! oops!
I had blood tests on Friday for my Thyroid, i was there for half an hour! My viens decided they didnt want to show, so we couldnt get any blood out, eventually the nice nurse did, but it took forever. But because the needle was in for so long, and my hand had the strap round it, i went green, threw up and fainted! what a great start to a friday morning! I spent most of the day on my windowledge just watching people and that. I had fun texting my dad though! he was in London on business, and i kept texting him. But my phone decided to pack in, and then decided to work again!
On sunday Everton play Man Utd at Goodison, last match of the season, and i am allowed to go! Yes! i am so excited i just can't wait! Im going on my season ticket for the first time since October, it will be great! :o)
Monday the 12th of May, something i doubt i will ever forget. As well as it topping of an amazing weekend, it has been a great day. Sunday 11th of may, i went to goodison for the first time since October, i loved it, we lost but with the company of my cousin Lauren, and my Dad, it turned out to be a great day. It has made me addicted to everton mints too! We had roast too! i havent been allowed it, because with the M.E comes food allergies, but i had no adverse reaction and loved every single bite! Then on Monday the 12th, i had a very early but worthwhile start, at 8 o'clock i had to wake up, and by nine o'clock i crawled out of bed. At 9.15am i got a phone call i had been waiting for off BBC Radio Merseyside. I was due to do a radio interview and they were ringing to fill me in. At 11.45am i was live on air. For ten minutes i spoke about M.E, i explained M.E, and spoke about myself, its effects on the family and how it feels. What followed was numerous calls to the show sending best wishes and showing there support. If that isnt a boost i dont know what is! Thanks! :o)
Its been a weird past month, full of ups and downs! On friday i had to visited the Children's Hospital, i was very tired so it took me longer. Half an hour at least, by the time we got there, i was grey and had fallen asleep! The Physio said i was too ill today, and she pulled my mum to one side and told her that we were not getting anywhere. She dicussed various options and i have to wait till i see my consultant till i can find out what is going on.
But on Thursday i did have my friends round! Denille, Jen, Jen and Kaz, they were here for a while, it was funny plus i hadn't seem them all in ages! Den and Jen brought me flowers too! thoughtful friends :o). I really enjoyed it, hopefully i will see them in half term, if not hiya girlies! :o)
Its really weird sometimes, how over christmas i used to drive past the Alder Hey mortuary and think that i might be there. It sounds so gruesome and so low, but thats what people think. Im just thankful im here. It can feel like an achievement to be where i am. Little boosts every now and then, and not feeling sorry for yourself. Then to come on here and see all the messages of support from people you even dont know means a lot more.
Its a year! i have spent a year living with M.E now. Ive gone from moderate, to at deaths door, back to moderate again. June was hard last year, getting sick and being told there was nothing wrong. Septemeber to christmas, involved lying in a bed, being spoonfed and being really really ill. The photos of me at christmas arent ones i will be looking at too often, too many bad memories, being propped up by my mum, dragged in by my sister and falling asleep whilst opening my presents. They bought me a playstation to keep me occupied, pretty good really. In January i was moved down to the living room, where i slept on the couch under a duvet, and played on the playstation. That in its self an achievement. Now in june, im on my feet, still struggling but on my feet, i can feed myself, and dont need propping up, and have left the house on rare occasions.
Its weird in a year, i have had my life turned upside down, and back round again, ive lost mates and gained more. I have had no treatment, there is no cure, but i have turned round. I have had small bits of physio, ive had it once, but was too ill on the previous occasion, but i will continue that for a while. Im speaking as if its over, truth is it isnt. I havent improved since the being of 2003, but i have improved since 2002. It sort of being stuck in neutral, not going forwards not going backwards. My mum told me there is 6weeks till holiday, so thats twelve weeks till school restarts.
Septemeber, i wanted to go in, i wanted to be better, i wanted to be healthy. I want doesnt get, is right there! Everybody keeps telling me just to think of now, but what with my birthday coming up, holidays, and a new school year, its not easy. Im not allowed back until im better, year 11 is exams, pressure, then there is getting back to school life. its enough to make you go mental - no offence!
May has been a great month, Steph, betty, mark and bison have all been really supportive, especially when i have really needed them. My grandma was moved onto a rehabilitation ward, and its been really nice seeing her smile. And i found out the everton Vs parma match is four days after my birthday, the match is on the 10th august, made up! Plus we are going to whitby for a week, i like it there. But ive still had the sickness, and its getting annoying. grrr!
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