Living with ME (ME/Chronic Fatigue Syndrome)

Member Name: abercrombie92

Product:	ME/Chronic Fatigue Syndrome
Date:	09/09/08 (142 review reads)
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I myself suffer from ME, and have done for just over a year now. I was diagnosed not too long ago. Here is my story (I apologize at the length, but it is very detailed)

"We're all in this together.." we finished singing for what felt like the millionth time that night. Finally we were sent home from what was the most grueling rehearsal of them all. I opened the car door and fell onto the front passenger seat, not saying a word. I felt dizzy and nauseous, my head was pounding as my mum proceeded to ask what was wrong and why my eyes were rolling.

"I'm tired," I replied.

That was the end of our conversation, I got home and passed out in my bed, hoping a good nights sleep would solve my problem.
Unfortunately, this wasn't the case. I was eventually woken at around midday, apparently my parents had been trying to wake me since 7am, I couldn't recall it. I rested the whole day, saving up my energy for the filming of 'High School Musical' that night - my drama group would be performing the north east premiere of it that week - the rest didn't do me any good though, neither did all the mars bars and lucozade I was force fed incase of low blood sugar. Still my eyes rolled, my head pounded and my muscles ached.

"Exhaustion," I was told.

"Low blood sugar," I was told.

I went with it and pulled myself through the performance trying not to let anyone down by passing out on stage, that is how I felt afterall.
Another night ended with me feeling low and going straight to bed, not only did I feel terrible, but it was less that 24 hours until opening night and I could barely speak I was so dizzy.
As I took another day off school to visit the doctor, he told me I was 'burning the candle at both ends'. I guess I was, I was just back from Germany doing a show there, and I'd done a show in Aberdeen a couple weeks back. My crippling muscle pain was getting worse, my nausea was getting worse, everything was getting worse. I couldn't open my eyes without seeing stars, but I carried on through the day and made it through the opening night - it was all a blur to me, I couldn't enjoy it at all.

The next day, Thursday, I knew something wasn't right, during the interval of the show, I was found passed out in the corridor. I was taken downstairs for air, I was in absolute agony and could barely see, I felt incredibly sick, but I told the directors I was okay and carried on. I was there to perform, I couldn't only do half of it.
Again, the rest of the week was a blur, one long painful blur.
Until one night (a Monday if I remember correctly), I just couldn't cope, it was 1am and I was still in my living room screaming and crying with absolute pain, I wasn't able to move. It was like nothing I had ever experienced before. My mum called in an on call doctor who admitted me to hospital straight away. I guess you could say this was the start of one hell of a bumpy ride.

As if being a 14 year old girl going to hospital on her own for the first time wasn't bad enough, I was asked a million and one questions. Five times. Remember, this was about 3-4am, I was in excruciating pain and wanted to sleep my little heart out, but instead I was asked the same questions five times by five different people, silly things like my name, age, DOB, if I was pregnant etc. Seriously though, questions that could wait until the morning. At least I had my own room, a nice little cold dark room, it was perfect. I was always red hot and the light was bothering me - which only led the doctors to think I had meningitis. That day was a never ending sea of tests and x-rays. After one x-ray, I was sitting in the wheelchair thing they gave me to be wheeled about in, when all of a sudden my eyes went black with little stars, I felt the sudden urge to vomit and my hearing went crazy. The next thing I know, a nurse had wheeled me to a window to get some air after me vomiting all over the place. Nice. That led me to get an extremely painful needle (adding to my list of very painful things I never want to experience again) to stop me from throwing up. Then finally I got some time to myself in my dinky little room. Being alone was a luxury I wasn't getting for long, as around an hour later, I was moved to a ward with 5 other people. 5 old aged pensioners. 5 old aged pensioners who always had the heating and the lights on. Not the ideal room for a 14 year old with a temperature and problems with the lights, but I was stuck there, what was I to do?

The first night in the shared ward was hell. When my parents were leaving after visiting hours, I cried like a baby. I clung to them begging to take me home, I couldn't stand to be in what I considered the worst place to be any longer. To my disappointment I wasn't taken home that night. I cried for about an hour afterwards, with the curtains pulled around my bed for some privacy. The night shift nurses kept offering me toast and tea, the more I refused, the more they persisted, how hard is it to grasp the fact that I don't want cold, soggy toast and lukewarm tea at 11pm? Eventually, after alot of tossing and turning (painfully, may I add) I eventually dozed off, it was difficult, even though I was so exhausted, but I managed. Only to be awoken again at 6am by a nurse asking me if she could make my bed, I thought if someone asked a question you got an option of more than one answer, not here, the only answer was 'okay, on you go'. So there I was sitting in a ripped up leather chair watching some cranky old nurse making my bed at 6am - I had never felt so exhausted and un-energised in my life. She moved onto the bed of the old lady next to me, as I went to lay back on my bed. This clearly wasn't allowed in 'The Ward of No Air Conditioning, No darkness, No Silence and Now No Lying On Your Own Bed' as the crazy, cranky nurse yelled at me. Didn't make my experience anymore fun. If only she knew I clambered back into bed and conked out as soon as she left the room. But yet again I was awoken, it was around 9am and I was not impressed, they woke me up for soggy rice krispies, no thanks, I never eat breakfast anyway, why would I want that? I am aware I sound like a spoilt brat here, but come on, I was in there because I was sleeping so much and in so much pain, not to be woken at ridiculous times with people making my bed and shoving month old soggy rice krispies down my throat. Anyway, I got through the morning by reading books (not a frequent activity in my life, but I did it anyway). I got through the afternoon by, well, by being in complete agony. It wasn't all from the muscles in my limbs this time, it was lower back now too. This was for a completely different reason though...a lumbar puncture caused this pain. For those of you unaware of what a lumbar puncture, it's a really long needle that gets inserted into your lower back and it sucks some of the fluid that gets carried from your brain through your spinal cords out, this gets tested to find our about your brain activity (I think). Anyway, it sounds simple, but boy it's painful, it's actually one of the most painful needles you can get. I was advised to lie down for at least 2 hours afterwards as the loss of fluid could have caused great pressure in my brain, resulting in more problems which wouldn't have been fun for me. It was my excuse for the short nap I had that afternoon.
My mum came to visit me at around 2pm and had brought some work from school with her. That gave me something to work on while I was in hell (my new name for hospital). Well something to work on while I wasn't teaching people how to turn on the TV, it's magic what a power button can do you know. The rest of the day was spent doing some Biology work and napping, followed by a much anticipated visit from my parents.YAY for familiar faces. They weren't there for long though, and before I knew it, I was curled up in bed nodding off.
The next morning was a repeat of the rubbish I suffered the morning before - I still didn't appreciate being kicked out of bed so someone could make it, nice gesture but seriously, at 6am? I knew that it would be a really long day, I got a couple of blood tests and then I just had to wait, and wait, and wait. I wasn't allowed to be discharged from hospital until I had all of my test results, which I obviously wouldn't receive the same day as the tests were done, so I prepared myself for a day of lying in bed watching some television. Well at least the extra strong painkillers I was taking were working slightly - the pain had subsided from excruciating to really painful. It's a start I guess.

That evening was completely awful, lying in the uncomfortable, tiny little bed I was completely unable to move. The pain was unreal. I lay on my back for hours trying to blank it out, the more I tried, the worse I felt. The pain wasn't the only problem though, my eyes were blurring and my head was pounding due to being completely and utterly exhausted, I needed sleep and i wasn't getting any in this hell - hole. If it wasn't the pain in my limbs keeping me awake, it would be the old ladies in the beds surrounding mine yelling for nurses, bells ringing, lights flashing or nurses offering me more of that dreaded toast and tea. I've never known anyone who has toast and tea at midnight, this was like a whole other world. Eventually I drifted off into my well deserved deep sleep.

HOME TIME! Waking up the next morning was an amazing feeling, kind of, I still felt as terrible as I had done for the previous couple of weeks, but I had woken up that day knowing that I was going home within the next few hours. The doctors did their rounds early that morning, my test results? Completely clear. So far, I looked like a lazy 14 year old who didn't want to go school and was faking an illness. I knew on my own that something was seriously wrong, even if no one could find out what it was. My mum came to the hospital at around 11am to pick me up, we waited a few hours for the doctors discharge letter and we were told if we had anymore problems then i would have to call up my GP. We were back to square one and it was terribly frustrating for me and my family.

I was able to drag myself into school the next day, something I hadn't done in a few weeks. It was all questions, questions, questions, but only because people were concerned. Explaining the same thing over and over was not my idea of fun, but it had to be done. I left school that day feeling completely drained of all my energy and in utter agony, the feeling is kind of unexplainable. You can guess what I did when I got home - slept. I slept from 4.15pm until roughly 2pm the next day, I just couldn't be woken. When I eventually got up, I was told of how my parents had attempted to wake me up around 30 times, why was I so unaware of this? What was so wrong with me? I'd never had sleep troubles before, and now all this at once.

These next few weeks all merged into one. It was a never ending stream of sleeping and pain. I would cry my heart out when my parents attempted to drag me out of bed thinking I was being lazy because the doctors had found nothing. All I wanted to do was sleep, when I slept I could feel nothing and if I'm completely honest, within those months, I was most happy when I was asleep because no one was accusing me of faking illnesses and I was unaware of the pain. I guess you could say I was in a sort of comatose state when I slept, in my own little world. I was still seeing doctors regularly during this time, up to 4 a week depending on my state, and I was taking 11 pills a day to try and banish the pain and the exhaustion. They worked on some levels and by late October, I had managed to get back into school regularly. My concentration was all off and I was falling asleep in classes, but I was so happy to have managed to drag myself there and somehow cope with it. I obviously had the odd tremendously awful days where my sight would go funny and I'd be ready to pass out or vomit with the exhaustion and pain. All was looking up, but I took a funny turn at the start of November and it set me right back to sleeping for 20 hours a day without stirring. The more I think about it, I have come to realise that November was the worst month of all. I had been dropped from two of classes at school, my prelims were coming up fast and I was getting worse by the day with no explanation to what was going on. Not only that but my family was arguing a whole lot too, I was accused of faking an illness to get out of school. As if it wasn't hard enough to cope with, but my own family didn't even believe I was genuinely ill.

Prelim time arrived, two weeks of exams that I needed to do well in. They were my safety net, just incase I continued to go downhill in the health department. I was determined to pass, I studied as hard as I could, which was difficult due to lack of concentration and always being exhausted and dizzy, but I put everything I could into it. I went into the exam rooms more nervous than I've ever experienced, I kept wondering if I'd make it through the exam. I managed a few of them, some of them I was unconscious during so didn't make it. Needless to say, I didn't do well in the prelims, which upset me alot. Although I was kind of expecting not to do well.

By the middle of December I was taken off of the pills, by my own request. They were no longer working and I felt they were doing me more harm than good, 11 pills a day couldn't be that great for a 14 year old liver. They were also causing me severe stomach pains and I was really against taking bucket loads of pills for a problem that was still yet to be diagnosed. The doctor who I was dealing with the most took me off of them straight away.

Ever since then I have had no medication to help me through it, unless the odd Cuprofen here and there counts?
I got a referral letter through the post from my doctor sometime in December, referring me to a Rheumatologist on the 7th of January...the day I was due back to school. The rest of my Christmas holidays were spent relaxing and resting, mainly trying to get myself better.

I may or may not have mentioned, but all the way through this hell, people had been suggesting illnesses I could have.
"It sounds like Glandular Fever," someone would say.
"Maybe it's one of those rare cases of Meningitis," someone else would tell us.
Both were ruled out.
Anyway, by the 7th of January I was all ready to go see if the Rheumatologist had any ideas as to what was going on with the muscle pain and awkward temperature (feeling cold to the touch, but hot inside). After going through what felt like an army medical and fitness check, he diagnosed the crazy temperatures to Reynaud's Disease (circulation problems) and the muscle pain to Joint Hyper-Mobility (overly flexible joints which loosen the ligaments and stretch the muscles causing severe pain and often collapse). It was all starting to become clear to me now. He told me he couldn't diagnose why I was so exhausted and sleepy all the time, so he referred me to the Neurologist to see what see could do. I was praying that it was nothing seriously life threatening I had, this was taking so long to get to the bottom of and my next appointment wasn't until April!
Within the time of the Rheumatology and Neurology appointments, we had no contact with doctors what-so-ever. We were on our own, I guess it made it somewhat easier to live with, knowing what the cause was. What's better is that the pain became less and less over time and all I had to worry about was the constant sleeping and dizziness. Between January and April, I was in school alot more than I was during the previous terms, I would go in at break time or lunch time most days, if I was lucky, everyday. That was a big improvement from never going in at all. As the Neurology appointment came closer, I got really excited, I thought this would be where I found out what had been wrong with me for the past 7 months.

At the appointment, I answered all the same questions and went through all of the same reflex tests etc, that I'd done a million times before. We left with nothing but a hospital admission letter. I had to go in for more tests and for them to keep an eye on my sleeping patterns. Once again I was going to hell, I was just hopeful that a diagnosis would be made.

To be honest with you, I don't really remember much about this hospital visit, I tried to blank it all out. I remember three things vividly though, the first being the crazy old naked man running around the corridors, I felt bad for the guy though, he had problems. The next was waking up one day with a needle hanging out my arm and some random nurse taking blood tests, I wish I could have blanked those both out. The last was my psychology session..I wasn't impressed about seeing a psychologist, but he made the final diagnosis, along with all my test results, I was finally diagnosed (after 8 months of hell) as to having ME (Myalgic Encephalopathy)/CFS (Chronic Fatigue Syndrome)/PVFS (Post Viral Fatigue Syndrome). We then found out that the diagnosis took to long as ME is diagnosed by process of elimination. I was let out of hospital the next day and that's the last we've heard from them.

Ever since the diagnosis, of course I have been able to cope a bit better, with knowing what is causing the problem, what doesn't help is that some people do not class it as a real problem - they think it is laziness. Seriously, this is not the case, I am not a lazy person what-so-ever, I cannot help what is happening to me and it's hard enough to live with without people claiming that I'm just being lazy.

The day after i got home from the hospital, I went onto the internet and did some research on ME, i'd heard of it before, but I had no idea what it was and the hospital didn't give us any information either.
I eventually managed to find out more about ME and for the past few months, I have been coping quite well, I now see a psychotherapist weekly to help me through it, and may also be going to a clinic in London for some treatment.

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