Gemma Richards - Founder of CFS Unite

Before ME In 2002, I was 20 when I quite literally got struck down with ME (although it took a few years to confirm diagnosis). Back then, I was a self diagnosed workaholic with 1 full time job, 2 part time jobs,  and  a little voluntary job at a veterinary surgery a couple of times a week.

I may have been busy but I enjoyed working, being busy and I thought I had a good life. Looking back I was a walking time bomb for exhaustion.  I lived in a house share situation with nine other people, one of which was my then boyfriend at the time, most of who were bums with no jobs and who smoked cannabis (my boyfriend at the time included). I never did drugs I don’t like the thought of losing control of my body hence drugs never held anything for me. I liked to go to the gym, I had just taken up kick boxing and I liked to go out to the pub or clubs with my friends most weekends.

Things started to turn around; I split up with my boyfriend, moved out of the house share and finally got a promotion at my main job, where I could afford to have one main job and I had time on my hands to enjoy myself. When a friend invited me to go to the Notting Hill carnival in London on Sunday 28th August 2002 I jumped at the chance. Little did I know that that day would change my life forever!

The day my life changed

We got up at 5am, to catch the 6am train to London. I was tired on waking but after a long week, that didn’t surprise me. On arriving to London, I felt a bit funny, like I was going to faint and like my tummy was being tickled but not in the nice way.  We grabbed a brunch at a pub, I still remember I ate, chicken with cheese and chips with an orange juice and lemonade to drink. Then it was on to the carnival with the music, the stalls and the bright colourful floats but I didn’t get to see much. Within an hour of eating, colours began to blur, my head felt light and I felt sick and dizzy, eventually I collapsed, blacking out.  On coming round, there were paramedics who checked me over and said I should be fine, just to ensure I eat regularly then we were off again to enjoy the remainder of the day. I didn’t get to enjoy the remainder of the day, to cut a detailed story short, I kept collapsing and blacking out and eventually I got taken in to a dingy hospital in London. The Doctors initially thought I had taken drugs so wouldn’t treat me until blood tests had confirmed that I hadn’t. Then I got given a shot before being sent home under the strict orders that a day of rest and I’ll be back to normal.

The few days after the carnival, I felt awful. Sick and dizzy were the main reasons I stayed in bed but I just felt plain rough. Doctors diagnosed exhaustion and gave me a week’s sick note to sleep and rest. After a week I returned to work for 2 days, before the exhaustion kicked back in and the blackouts begun again, thus another week off. This circle continued until eventually my contract at work was exterminated and I was jobless for the first time since I was 14 year old and I was exhausted. 

The last 8 plus years

For the best part of the decade I have been poked, prodded and pulled apart with tests. You name it I have had it. Many long, repetitive, endless and mind numbing tests with no answers.

I have been diagnosed and undiagnosed with everything under the sun, from depression and exhaustion to Epilepsy, Multiple Sclerosis (MS) and even a possible brain tumour, all within a few months of being ill. It was not until 4 years after the day my life changed that I finally had the diagnosis. I had been through many GP’s, specialists of all varieties including neurologists and psychiatrists and it took one person in one faculty to finally say the words …….”you have ME!”                                                            

Symptoms in the past seven years have changed radically. At first my body ached as though I had flu, just getting dressed was enough to put me back to bed for hours with muscle spasms and standing up for too long would cause my whole body to shake and eventually if I did not sit down I would faint or black out. But it was the headaches and the fact that my head couldn’t focus that was the worst, I just did not want to compute my surroundings. I now know this is cognitive dysfunction or brainfog as it is referred to in the ME community. The only way I could describe how my head felt at that time is like people who smoke dope describe the feeling of being spaced out after having some, that was me and no matter how hard I tried I couldn’t concentrate on anything. In the first year, it was fatigue, my muscles hurt and I wore myself out just making a cup of tea. For the first year of my condition I spent most of it in the sofa wrapped in a blanket staring my days out the window.

Good things have happened, I got my own flat, met my brilliant boyfriend Gavin and as I have improved on and off over the years I have tried to use the inability to work as an advantage. I have gone and got some qualifications that I hope to use to my advantage one day in the future. I have managed to study some A-levels some of which was in science, which I have always really enjoyed and have a particular interest in. After completing these, I was at my worst physically, I couldn’t move my legs and really exhausted quickly. Still unable to work, I got in touch with a local University and was accepted to do my Biology degree. This was a major step and an important chapter in my life. I completed my degree over 3 years, it was no easy task and on many occasions I wanted to quit but thanks to Gavin, my dedicated family, good friends and some really good lecturers and support staff at the University, I pulled through. I graduated July 2009 with a second class honours degree in Biological Sciences and what’s more I completed a second long term aim, I collected my certificate walking (on crutches but out of the wheelchair).

My symptoms fluctuate almost on a month to month basis, and  I have experienced a wide variety of symptoms from being bed ridden, a full time wheel chair user, house bound and partially able. On a percentage ability level (more on that later) I have been at level 0%  (bottom of the scale) up to 70% and am currently on writing, I am about 20-30% having experienced a recent relapse.

The present …. The present is kind of hard right now. I feel as though the world is revolving and everyone is moving with it, except me. I graduated over a year ago and have not moved on any further. Still unable to work full time I am not sure where to go or what to do next. I am at a standstill watching the world go by, moving on without me. This is partly why I launcehd CFS Unite. There are others in the same boat watching the same world go by leaving them behind. The picture is of me in May 2011 on a pretty rough day, showing people that on a bad day I am in bed not looking that great.

Deceit; I am good at that, not too others but I am the world’s best liar to myself! I am very good at pretending everything is ok until I push myself too far and crash and burn. In this recent relapse, I am able to walk still with the use of crutches, however I tire easy and my joints ache all the time, my sleep is irrational and as you can tell I have the tendency to ramble.

Currently I am able to work a few hours a week, I have to rest lots and when I can I go for a walk with my dog. Gavin refers to me as a Hermit Crab, I either go to work or you will find me at home. My hobbies are at a standstill at the moment (I am a scuba diver and I like to walk) and I find going out with people really hard. If more than one person is talking at once I cannot follow the conversation and end up fazing out missing the complete conversation. Luckily the only person who usually notices realise I have fazed out is Gavin, I can fool most others into thinking I am not fazed out but quite the opposite that I am acutely interested in what they are saying.

The future ….

It is hard to predict the future as you never know what will take place, especially with the unreliability of ME. Like all people with ME I would love to get better or cured. However, in reality I know that this is highly unlikely (I’m sorry but I cannot lie to you). However I hope to improve my condition, to find a way so I can do a little of everything I love. I would love to get married, have children and maybe even work full time, I would love to teach. I would love to go on holiday to be able to afford it both financially and energetically and I would love to be able to scuba dive without having to lose a week afterwards recovering and more simply I would like to be able to take my dog for a long walk and still have the energy to come home to cook a dinner rather then collapse on the sofa with no energy and painful muscles and joints. These all seem like a long way of but I can always hope and pray that it will come sooner then I think.

For the future of ME, I hope it becomes more recognised and that people can start understanding the illness and what we have to go through. It would be nice if someone waved a magic wand and made it disappear but I think for the foreseeable future the aims should be to raise awareness, gain understanding but also to be able to help those affected get the right help that they need and that is what CFS Unite aims to do.

Gentle hugs

Gemma x