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)

Walking in a straight line!

Hi,

In the past couple of weeks, something I wasn't aware of has been highlighted to me by two men in my life. For years, I have known that I have very little spatial awareness, a lack of balance and a feeling of disequilibrium. However, when out and about I always believed that, although I felt off kilter, I was walking in a straight line. WRONG!

My dad constantly tells me I'm wobbling about all over the place but as he is the only person to ever say that to me it went in one ear and out the other (kids eh?!). I have recently made a new friend and we went on a short Christmas shopping trip. I was bumping into both him and my surroundings.

Apparently he watched me walk away from him at one point and I was veering to the left and looked unstable. Because inside my head my whole body feels off balance ALL OF THE TIME I am not aware of when other people can see it!

I am just happy to be able to walk from A to B without any kind of walking aid. I am slightly amused that I have finally found the reason for my constant clumsiness! I have to do a daily bruise count after bumping into things on an all too frequent basis. It's a bit like when I used to go swimming. I could swim 30 lengths of an Olympic sized pool. Yay me! It didn't make me a good swimmer though. My brain couldn't cope with the process of doing a proper breaststroke (like a frog). I did a kind of 'pat my head/rub my stomach' scenario. I did breaststroke arms and kicked my legs. It wasn't the most aesthetically pleasing stroke or the fastest. But, I was very happy to get from one end to the other without any drama!

Love,

Sally xx

Post-Exertion Malaise ....shown in a picture!

Hello!

I am currently in Northern Ireland. While I am away doing some campaign awareness raising I asked Sally to write down exactly how her body feels after taking Patch for a 20 minute walk. Here goes....

Hi,

I am so used to just saying that I feel tired or can't feel my arms and legs properly I made a conscious effort to note down every symptom that I felt post-dog walk. So I sat in a chair and studied my own body from head to foot. I wrote it all down....in case I forgot how rubbish I felt! Please remember that I am a mild sufferer, Post-Exertion Malaise (PEM) is so much worse in people with worse M.E. than I have.

As you can see, P.E.M affects the whole body. As well as these symptoms, fatigue levels increase immensely and I experience a feeling of not being able to function.

PEM is the reason I have chosen Foggy Does Sport as the next campaign theme. It also seemed appropriate to highlight this element of M.E. as the Institute of Medicine have said M.E. should be renamed Systemic Exertion Intolerance Disease. The way our bodies react to exercise/movement are key to understanding the nature of the illness.

Love,

Sally (and Foggy)

Blatant Ignorance

*Foggy* Whoa....Sally has just got back from a short trip to the local shop and she is fuming! My tiny Foggy brain can't explain what has just happened so I'll let her explain! I can't wait to see you all again! I'll be back in January xx

Hello,

I am so angry and agitated. Perfect starting point for a blog post!

As you are all aware, I spent a whole year attempting to raise awareness of Myalgic Encephalomyelitis GLOBALLY. I was successful in educating a wide range of people. However, the people I encounter on a daily basis still don't have a clue.

I had just taken a break from working at home and taken a short walk to my local shop. On the way I bumped into an old family friend. Let's call her Lynn. She asked me how my new business was going and I said it was steadily building, but I need a part time job to be able to pay my bills. I told her that there don't seem to be many temp jobs around and that most temporary jobs at the moment are retail. I explained that I can't do retail as it involves standing for long periods of time or lifting/shifting stock, something I can't do. She said that at Christmas time there are lots of bar jobs available and why don't I just do that? I explained that I couldn't because of the standing for long periods of time. She told me to push through it. I said 'M.E. sufferers can't push through it, it's not how M.E. works'. Lynn replied, 'I've read up all about it, all they have to do is push through it and get

Me - educating

a positive attitude'. Apparently, if I 'put my mind to it' I can do any job. I was speechless. I could have pointed out to her that not only do I have M.E. but am a M.E. advocate and educate people on the true nature of M.E all the time. But I didn't. I didn't swear at her (I wanted to) or argue (I wanted to), I just let my very expressive facial features tell her what she could go and do!

Let me point out that 6 months ago Lynn didn't know what M.E was and said that she hadn't known there anything wrong with me. I think her idea of reading up on it was reading the Daily Mail's inaccurate reporting of the condition. I have spent 3 hours a day for the past 6 weeks looking for a small part time job to tide me over until I have built my multinational conglomerate. Unfortunately, I have been unable to find any work which suits my energy levels. I thought looking for a basic admin role with part time hours would be simple. I was so wrong. My willingness to work and frustration at not being able to find anything suitable completely contradicts the comments from Lynn. What is especially annoying is that she does not appreciate that I am currently working very hard setting up my business. I am not lazy.

I often give the impression that I don't encounter negativity regarding my health. I like to keep Foggy light, engaging and informative. Please don't be under the illusion that I don't have ignorance thrown in my direction on a regular basis. Ignorance from colleagues was a small factor in why I left my previous job. I constantly had 'the face' from a few members of staff. It was demoralising and made my working life extremely difficult. Maybe I should have worn a pretend plaster cast so people could see there was something wrong?

Unfortunately, the only people who are paying attention to raising awareness of Myalgic Encephalomyelitis are the people who like to learn new stuff and treat fellow human beings equally and with respect. I could spend a morning giving a public awareness event and be well received, and then pop into my local shop on the way home and be confronted by ignorance.  Ignorant people have no inclination to learn and just stick to their own beliefs and misconceptions. Incredibly frustrating but that is the way of the world.

Love,

Sally xx

Unhelpful

Hi,

Like many other M.E. sufferers, I read an article in a national newspaper on 28th October that literally made me gasp out loud. This headline came from the Daily Mail, but the story was covered by most of the national papers. The ME Association discussed the coverage in the Daily Telegraph. See the

link below: 

ME Association response to media coverage of the PACE trial.

I am sick, sick of conflicting research and being made to feel like it is all in my head. The contrast between the Institute of Medicine's Systemic Exercise Intolerance Disease (SEID) research and this PACE trial is astounding. How can sufferers be both intolerant to, and helped by, exercise? The difference just doesn't compute in my tired and weary brain.

I'll admit, I steer clear from reading papers from the latest research. I am not a doctor and do not understand most of the medical terminology. However, I do keep track of any 'progress' made. Since starting Foggy, it has become clear to me that many sufferers read every scrap of news and research, in the hope that they can see light at the end of the tunnel. They also discuss findings as if they had undertaken 7+ years of medical training. Most of us haven't. I don't have the energy to pretend that I have an ounce of medical knowledge. I also don't have the cognitive strength to read report after report, desperately seeking out something positive to cling on to.

I have been sent the following links by a fellow sufferer. Now I know that the PACE research has links to health insurance companies, I don't think there is even a grain of reliability/truth or medical advancement in it. What about you? Trial by Error    No it isn't all in your head.

My own personal mantra, and something I tell fellow sufferers if they ask my advice (I stress that I am not a doctor but speak from my own personal experience), is to do the amount of exercise that is good for YOU, just to make sure your body doesn't go to sleep. That could range from simply getting out of bed or walking up a flight of stairs to taking your dog for a 10 minute walk. M.E. is very

individualistic and so no one can tell you how much exercise you can manage.

I have remained 'active' throughout the 7 years that I have had M.E. At times, during a kind of remission, I was able to do more activities before exhaustion hit. However, this does not take away the fact that exhaustion ALWAYS hit at some point during the day. At the present time walking Patch for 20 minutes is enough to make me feel exhausted by the time I get home. This morning I have done 10 minutes of housework, Pushing a hoover for 5 minutes and cleaning the kitchen floor exhausted me temporarily and I had to have a rest break. Like many other sufferers, gentle exercise has not reduced symptoms or 'cured' my M.E.

My biggest fear is that this PACE study, and the subsequent press coverage, will YET AGAIN negatively impact public perception. I feel the hard work I did last year to raise awareness has been set back. If M.E. sufferers can't get their heads around the latest research how can we expect Joe Public to ever understand?

Love,

Sally xxx (and Foggy doggy snogs)

Routine

Hello,

Foggy and Patch are in Patch's bed snoozing so while I have some peace and quiet I am commandeering Foggy's blog.

Today I am going explain how important having a routine is to a M.E. sufferer. I can't remember if I was taught this as part of PACING therapy or Cognitive Behavioural Therapy, but it was a tip given to me by a counsellor at the start of my life as a M.E. sufferer.

This subject is particularly appropriate at the moment because, since I left my old job to become self-employed my routine has gone out of the window! 3 days after I left my job, building work started in our house. Furniture is out of place, there is constant noise and time schedules are run by builders instead of us. All of these factors have left me feeling extremely tired and disconnected with everything.

My counsellor told me that I needed routine so that my body 'learns' when energy is needed. So, since 2008 my sleep routine is as follows: I go to sleep between 10-10.30 pm and set my alarm for 6.45 am. It has to be the same every day, even during weekends or holidays. Otherwise, my body doesn't know whether it is coming or going. Even if I don't feel sleepy I force myself to go to bed. Otherwise, I will have repercussions to deal with the following day. Symptoms will worsen and I will feel exceptionally tired and unwell. Usually, my eyelids are well on their way to be closed by 10.15 pm anyway! It is not easy for me to explain how it feels when your body is shutting down. As bedtime gets closer, I am unable to hold my head up and my insides feel like they are non-existent.

As part of my daily routine, I usually try to avoid napping in the afternoon no matter how tired I am. However, there are days when napping is unavoidable. Getting horizontal and sleeping is sometimes the only way to feel human - although it doesn't make me feel 'well'. If sufferers nap regularly the body gets used to napping in the afternoon and starts to tune into 'rest/nap' mode, whether your body needs to recharge or not. Since becoming self-employed, my body has felt like shutting down by 2 pm every day. I know this is because of the noisy and disruptive building works. I can't wait for life to get back into a routine!

Love

Sally x