Don't Judge M.E.

Welcome to my first blog post!

I have suffered from *M.E (Myalgic encephalomyelitis) for 9 years, and I feel that it is one of the most misunderstood illnesses of our time, and that there is very little information and hope out there for people who have this illness.

I want this to change.

We have suffered in silence for long enough. Don't you think?

Below I will give a brief summary of who I am, and how I have come to this point in my life, if you wish to skip this part then please go to "The Present Day".

A little about me

I grew up on the island of Cyprus, where I had a full and fantastic childhood. From a very young age I was really active, and loved music - I had piano lessons, was part of a professional theatre troop that performed musicals around the island, and loved to dance. I was always one of my teacher's favourites in ballet lessons, which I took from the age of 3 up until 14 when I had to stop due to a sudden inability to balance properly, and a sudden onset of acute dizziness. Doctors always put this down to hormonal changes and said that it would pass, but as time went on my frustrations grew, and my teacher would say things like "what happened to you?! Who are you?!" which would make my anxiety towards not being able to do what I once excelled at even worse. So I sadly quit, much to my teachers dismay, and the ballerina dream died. I jokingly say now that if it weren't for the balance and dizziness problems, my post puberty new found curves would have killed that dream anyway.

Despite the dizziness and balance problems, I was still leading a pretty normal life. I had always had chronic asthma since a baby which I was on steroids for, and this meant hat I was quite susceptible to virus' so I was often on antibiotics - but this didn't effect my quality of life as I had become used to it, and I never worried too much about it. I still had my energy. I'd be going to school, socialising - I even headlined in a professional musical at 15, while at the same time achieving 11 GCSE's all grades A-C. I worked hard for all my dreams and achievements, but I loved it, and I loved life.

Once I moved to the UK at 16, I found myself catching every virus in sight, and doctors put it down to me not being used to the "bugs" over here. I was extremely unhappy when I first moved, I'd gone through a break-up with the "love of my life" from back home, and hated everything about the UK, the weather, the people, my new school, everything seemed so new and uninviting, and life became quite stressful. I then caught glandular fever 3 weeks before my mock AS levels. For weeks after I was still feeling like I'd been hit on the head with a frying pan, and could barely get out of bed. Doctors said it was just post-viral fatigue and that it would go. As the months went by, I slowly began to deteriorate.I could hardly bring myself to get up in the mornings to get to school, and felt like I was in a permanent state of a drug-like hangover mixed with the flu. Nothing would shake it off, and the new friends I made slowly began to disappear. I would watch them on days when I made it into school and just wonder how they had so much energy, and just wished I could have a fraction of it. "Christina I hardly recognised you, you're never here!" they would say. My new boyfriend of a couple of months would tell me "you need to get out this house, you're just laying here all day doing nothing, you need to get out, socialise, no wonder you feel terrible you're not getting any exercise!". I tried SO hard. I wanted so badly to be like all the other teenagers. But I just couldn't keep up, and ended up fainting at a friends house after school.

This was the beginning of my M.E.

If only I was given the right treatment then, I wonder if I would be in the situation I am in now. The doctor I visited kept telling me how "normal" it was, and didn't seem to understand or even care that what I was experiencing certainly wasn't normal! So I soldiered on. I managed to get my Alevels by the skin of my teeth, took a gap year thinking my symptoms would miraculously disappear (I hadn't even heard of M.E at this stage) and went to Uni the following year. I went to the Academy of Contemporary Music, where after a year I had to give up due to my ill health. I felt like such a failure. How come everyone else is coping? I must just be lazy.

Come on. You're a winner. Why are you acting like such a looser?

I would beat myself up about it daily. I just couldn't understand why I'd become so "lazy". It wasn't until I was 22 that I first heard of M.E, but every time I enquired about it to my GP I was always told that I didn't have it, that what I was experiencing was just a "phase". By now it had been a 5 year phase. I was always brushed off and told to just carry on, so I did.

I started a girlband at 23 with another singer, and we recruited others to make a 6 piece all singing all dancing band, and in a small space of time managed to support some big US artists, and do a tour. I cannot tell you how awful I felt, making myself dance, and making myself endure the late nights and early mornings, but I was so determined to succeed and I loved this band, I lived and breathed it. Some days I just felt like I wasn't even present, and on our Cyprus tour I couldn't get out of bed in the mornings so I'd just lay there crying or sleeping while the other girls lounged at the pool before rehearsals. I'd lay there wondering how I could bring myself to move my muscles that constantly ached, and panicked at the idea of having to get glammed up and dance in heels. Yet I wanted this so badly. By this time I knew I had M.E despite what the GP would say, I knew there was something seriously wrong with me. I would try to explain to the girls but they didn't really understand, and I didn't really expect them to at the time, as every day I was faced with people who just kept telling me to "man up" and "carry on" and so I did. Eventually it got to the point where I had to put my health first and no one was understanding that I needed the agreed summer break that we were supposed to have from the band. The girls wanted to carry on rehearsing new material, and no matter how much I begged for just 4 weeks to recover, my voice just wasn't being heard. After an altercation with a band member I started to realise that this wasn't for me,and that these girls weren't going to take no for an answer, so I left.

Yet again another heartbreak, another thing I had to quit. I hate the word quit.

But it felt like it's all I ever did. I went back to my GP and explained yet again how ill I was feeling. I was told that M.E didn't exist and was all in the mind. "If you faint at the gym just get back up and carry on". I felt so angry that he would say these things to me, did he not know what it was like? I started to believe that if I pushed myself to get through this that I'd recover. So I started going to the gym more frequently, which in turn made me even worse. The day after I'd be unable to move from my bed, would have a temperature, and be vomiting all day.

I didn't get any real help until I was 25. My mum who I lived with, and relied on to survive, decided that enough was enough, and made my GP refer me to a CFS specialist in Oxford. It was a massive relief to talk to someone who was not telling me that it was all in my head, and confirmed to be that I did infact have M.E. and it wasn't something I had made up. However, his suggestion of supplements and vitamin B injections unfortunately didn't seem to have any effect on me. During this time I tried various alternative therapies, potions and supplements, but nothing seemed to work. In the mean time I was working part-time in an office as a PA, and was struggling to keep my job. This brings us to the present day.

The Present Day

I am starting this blog on the day that I have received my DVDs for a new treatment that I am about to try out. I have recently discovered the 'Gupta Programme' through a friend who recovered from M.E. by using this method, so I thought it would be worth trying. I've tried many other way wackier treatments (such as having oils poured through my nostrils by some Indian dude-yeah...it was eventful) so I'm pretty open minded about this. I like the fact that Gupta had M.E. himself and seems quite scientific with his approach (no psychologists please). In a nut shell, he says that it is the amygdala part of the brain that needs retraining so that it stops releasing adrenaline, TH1 and TH2 "killer cells" (these are the sells that fight an infection but in M.E they don't know when to turn off so carry on releasing their chemicals) which in turn is messing up my immune system and causing all sorts of havoc in my body. Sounds plausible enough to me. His treatment consists of learning how to retrain the amygdala to stop releasing these chemicals, and you do this by watching the DVDs that he sends which explain what to do. You also have the option to meet with a nutritionist and counsellor at his Harley Street clinic if you so wish. I can imagine what you are thinking, and I can confirm I am thinking the same thing! But I have nothing to loose, so I am going to just have to go with it!

Well, tomorrow will be my first day watching the DVD and I'm hoping to get started straight away. All I need to do is manage to get to work for one last day so that I can tell them that it is no longer realistic for me to work, which I am not looking forward to as a) I have no idea how I'm going to get the energy to get out of bed since I have had  terrible relapses these past two weeks and have been off work and b) I have been so lucky that they are such nice people and have been so understanding and I really don't want to let them down.

But it must be done =/ wish me luck...

For anyone reading this who has M.E. you WILL get better, I just know that there is something out there for us.

~Christina~

*For those who have come across my blog and are unaware of what M.E. is, please check out this link for an explanation:

http://www.meassociation.org.uk/?page_id=1685