Raising Awareness for CFS/ME Awareness Week and the Fabulous Team Princess!

Well, I took part in Team Princess to raise awareness as well as cash, so I suppose I had better do the former as well.  I hope this post wont bore anybody - no one wants to hear a litany of illness. But during CFS/ME Awareness Week I wanted to reveal what ME is really like and to dispel a few myths, because there might not be another opportunity. And if it ever happens to anyone close to you, (I hope to God it never does), then it will give an idea of what can happen and what to do.

My experience began in 2008, when I was 28 and very fit and healthy. I worked full time for an e-learning company and skated 2-3 times a week, as well as attending an exercise class, and had an active social life - shopping, going out with friends, etc.

But it all changed very suddenly when I got a flu like illness, which at first I thought was just like any other. After a week or so I went back to work, and for a couple of days, seemed to have recovered. It was after this though, that I suddenly felt a sense of tiredness that I'd never felt before. My entire body felt heavy, as though  I was wading through treacle and I found it difficult to stay awake. Everything was more effort.  I found myself shutting myself away in the company's silent board room to work, because I hadn't the energy to cope with people and I felt a sense of dread the whole time.

It was after 2 weeks that I woke up one morning with tremors and shaking throughout my entire body. Every muscle  moved with a cogwheel type rigidity - a visible vibrating. This really was when the real trouble began. I forced myself into work for 4 months struggling to get through the day. I felt so weak I would dread being asked to make tea or walk across the office to speak to someone. The floor appeared to move as if I was walking on board a ship; everything was too bright and my eyes were heavy, and I would get into bed immediately on returning from work each evening.

As time progressed, my handwriting changed. I began to experience muscle jerking - where suddenly my hand would jolt across the page or my leg would kick in the air involuntarily. Added to this were all over bodily fasciculations (muscle twitching), and palpitations and irregular heartbeats. I walked with a shuffling gait and poker legs. I also got foot drop, and trying to walk down steps or off a kerb was an experience - my foot 'slapping' onto the ground,having lost the fine motor control.

It all came to  a head in September 2008 when I was hospitalised with a  resting heart rate of 180 bpm. It was after this i realised I couldn't keep working, even though my employer had kindly allowed home-working for much of the time, to save the energy required to travel in.

There were many other weird symptoms but this is the point of having to stop talking about those horrid times before everyone else falls asleep! Suffice to say, I  rested at home and  improved gradually over 3 years, to the point where i could go for a pub lunch for an hour or so and could drive occasionally.

A huge problem and hallmark of ME though is post exertional malaise. This means that such outings, for me and many sufferers, could only be few and far between and require recovery of days or weeks afterwards. Others rarely see this, because energy is be saved up to see people, and it is often the case that sufferers can seem quite well to outsiders, causing more misunderstanding.

Another hallmark of the condition is its relapsing and remitting course - something I discovered in 2011 when after what seemed a fairly innocuous stomach bug, three years of improvement were quite literally gone within 2 weeks, and i was worse than ever before.  At this point I would spend only 2 hours at a time out of bed, sleeping up 15-16 hours a night, and unable to walk to the end of the driveway.

It was at this time that there was nothing left to lose and I tried a treatment that for me, was amazing. For three days my dad drove me to Rugby in Warwickshire, propped up with pillows. This treatment was called Lightning Process. Its a controversial treatment that is very much misunderstood.  Unfortunately when people hear about the content they tend to not stop to fully understand the neuroscience behind it, and draw the conclusion that ME is a psychological illness - which is very far from the truth and is a very damaging viewpoint.

The Process I used helps to re-train the brain to send more normal instructions to the body and to at least some degree reverse the neurological problem that is ME. However, it doesn't work for everybody and was not a total cure in my case - but although I am still very far from leading a normal life, it has enabled such physical improvement that things are now far better, and, 3 years on, I am much more able.

So, I hope that at least by telling my story I can convey what ME can be like and hopefully dispel the dangerous myth that is is 'just tiredness'.

I should say though that this description doesn't constitute a universal experience of the condition: everyone is so differently affected. Some have multiple allergies, digestive problems, light intolerance - all manner of symptoms which are brought about by disruption of the central nervous, endocrine and cardiac systems.

As yet there is no theory for the cause of ME that has been wholly agreed upon, although there is some great research going on out there. Team Princess are raising money so that this research can continue and hopefully find a cure. Our charity, Invest in ME, fund biomedical research and also promote awareness in the press/media, trying to ensure the wrong message doesn't get out there.

So that's my piece said really - I hope I've given at least a bit of an idea of what ME is about. If it ever happens to someone you know, the best advice I can give is to always believe them; don't think that it is psychological, or encourage them to push on regardless, and get advice straightaway on pacing, and push for an official diagnosis. Don't be fobbed off or fooled by the stigma that surrounds ME. This is the greatest gift you could ever give them.

Thank you so much for reading; it means a lot.

Love Marie.

The link to our fundraising page is here: www.justgiving.com/teams/MEprincesses