Guest blog: Christina

Hello,

My name is Christina and I am a 26-year-old from the North East of England. I am also a M.E sufferer.

My journey started when I had just qualified as a teacher and I was in my first year, known as your NQT or ‘Newly Qualified Teacher’ year. I was working flat out and could regularly be found up and at my computer at midnight planning lessons and making sure that my resources were perfect. I was good at my job and I loved it. Just before the Easter holidays, I had started to feel really run down and weak. I even passed out in the middle of a year 11 lesson! This carried on for weeks and I was in and out of the doctors surgery being diagnosed with everything from stress to ‘just another virus’. The final nail in the coffin was a week before the holidays when the school received the OFSTED phone call. As you can imagine whether you are a teacher or not, everyone tripled the pace and I was no exception. On the final day of the inspection after running on adrenaline for 3 days, I was observed and got ‘Outstanding’, great! Except that I felt like a ghost looking down on myself and thinking “you can’t keep working like this”. I continued to get worse and eventually was diagnosed

Beautiful - Christina on her wedding day

with glandular fever. Throughout the next year, I contracted glandular fever four times as I didn’t allow my body the time that it needed to fully repair. By October 2014 I could barely get out of bed. I worked with a wonderful man and a dear friend called Tom who had suffered from ME for several years and I started to identify with many of his symptoms. Finally, I went to my GP and queried if this could be the cause and was referred to a local specialist. I was officially diagnosed in December 2014.

However, my illness had many layers. On the surface, I had M.E and clearly needed a long period of rest if I was ever to recover. However, there were issues deeper down that I have never spoken about until recently. I had suffered from an eating disorder since around the age of 16 and from this age had lived on a strict calorie controlled diet of 1,200 calories a day in addition to taking fat loss pills and often binging on prescription strength laxatives. My body was already exhausted and I was making it worse by not giving it the fuel it needed.

From being diagnosed and admitting these problems to my M.E consultant, life started to pick me. I finally knew what was wrong with me and I started to learn about my symptoms and more importantly how I could control them. There was one thing standing in my way: my job. So in August 2015, I made the huge decision to leave teaching. It was hard for me, but I realised that my health had to be more important than my job and I was living to work. I had just got married to the love of my life and I wanted to build a life with him and not have him on the side while trying to struggle with my job being the priority. I found a job which was still in education but removed the home workload and slowly I started to see an improvement. I had to give myself a good talking to and realise that just because I had to change careers didn’t mean I had failed at teaching.

The next stage was the food thing. Again, I sat myself down and thought “when I die, will people really remember me for how much I weighed?”. The answer is no. People will remember you for being a nice person, helping others, your achievements but certainly not what your body fat percentage is or the fact that you ate that cake last Tuesday. I started to eat properly and this also helped my symptoms as I had more fuel.

Although I like my new job, it is 30 miles away and I am now finding that I am struggling with the travel. But again, that’s ok. I have a job, I have supportive colleagues and managers and am also regularly submitting job applications closer to home. I know that if I’m patient, like I had to be with my illness, in time I will find something ideal for me.

I find with ME, you need to take the Rocky Balboa approach: one step, one punch, one round. Take your time, don’t let the relapses get you down, and most importantly never give up.

Love,

Chrissy xxx

Open letter

Hello,

It's launch day! Foggy got overexcited yesterday and is snoring softly next to me at Foggy HQ. I have insomnia, a pain in the bum M.E. symptom (sleep disturbances), so am taking the opportunity to write this blog post.

I was contacted via social media this week by a female M.E. sufferer who is finding full-time employment a struggle. She asked me if I felt like a burden in my working life and asked if I knew of any jobs for people suffering from M.E. I was unable to give a comprehensive answer because of the word limit but I told her that flexibility and having a sit-down job were crucial. I asked her to email me so I could give her a longer answer but received no email. So, I am taking this opportunity to send her an open letter.

This subject is particularly relevant for me at the moment as I am in the process of looking for a new job. Job hunting is monotonous, self-esteem destroying and difficult for most people. Add to that the additional factor of having M.E and it's not a great place to be. I long to be someone who can do ANY job just to get some cash. Before M.E hit I did all sorts of low-grade jobs to pay for holidays, car problems, huge phone bills. However, M.E has hit and I can no longer be so spontaneous and carefree about who I work for.

There are similarities between you and me. We are both postgraduates and both work/worked for universities and we are/were both struggling. Personally, I believe working in a direct customer facing role for the past 9 years did not help my M.E. I was stuck to a rigid timetable with no breathing room. So, if I was having a bad day I couldn't moderate my activities. For example, instead of being on my feet facing the public, in a perfect world I would have been out the back doing admin work. I would still have been working, just not physically moving about wearing myself down to the point of exhaustion. I left that place of employment in September 2015. Its unyielding nature was one (small) reason for my departure. I don't know what role you work in at your university but if it is customer facing I suggest you think twice about its suitability. I loved mingling with a wide variety of people on a daily basis. I am a very good communicator. Unfortunately, it takes a huge amount of energy to be a point of contact that involves hundreds of conversations, often complex, each and every day.

Because of my love for social media, creativity, and communication skills, I am now looking for associated roles. I know I can contribute 100% to any organisation I work for. The only thing I ask in return is flexibility. Rest breaks are crucial if I am to be a fully effective employee. In a perfect world, every hour I would have a 5-minute break just to go and sit somewhere quiet and recharge. This time could then be taken away from my lunchtime or added to my leaving time. Whether I get that ....who knows. I know what works best for my body. It is something an employer should consider if they want me to be as productive as they need me to be. Those employees who take regular breaks to have cigarettes? Consider M.E my cigarette.

I am sure that the longer my job search goes on the more I will be tempted to accept whatever job I am offered. I hope that does not happen as it won't be long before my body starts to protest. M.E is a fluctuating illness that is affected by lots of different factors. Stress and change of routine are two of my biggest triggers. Both of these triggers would come into play when I start a new job. I am hoping pacing and generally taking things slowly will get me through the transition period.

In answer to whether I felt like a burden to my employer, I would say that I did during my early M.E years. I am a people pleaser. I hate that, on some days, I am unable to give 100%. However, over time, I realised that no-one gives 100% every day of their working life. Other people have health issues too. They may also have childcare issues, external stress etc that could affect their productivity. Do not feel guilty for having a disability. Just because ours is invisible does not make it any less significant. Disabled people have the right to work too. My M.E does not define me, I am still a creative, skilled and intelligent person. It's just some days my brain likes to play games!

Love,

Sally xx
and Foggy (OBVIOUSLY)