Chatterbox

Hi,

I have always had a reputation for being a chatterbox. I have wiled away many driving hours chatting away to my passengers about complete irrelevant random-ness just to pass the time. That stopped when M.E. hit. I'm going to use this blog post to explain how much energy is required to use the power of speech.

I LOVE Car Karaoke. Singing in the car, on my own, used to be one of my favourite things. It was the only time that I could sing full belt without criticism...I am tone deaf and sing like a wounded cat. Singing along to vintage CD's use to be one of life's small pleasures. However, I now have to make a conscious decision to save energy and keep my mouth zipped shut. Driving uses a lot of cognitive energy to concentrate, make decisions and be alert. So, I have to cut down on any addition energy usage to make sure I get from A to B safely.  I have just driven home from a weekend away and had to reserve energy on the drive home. So, while Texas, Snow Patrol and The Verve were wafting out of my car speakers I had to virtually bite my lip to stop myself from squawking (singing) along. I couldn't quite stop myself from singing along in my head, though; even that uses brain energy...why oh why do I know ALL of the words?!

When I was first diagnosed with M.E, my support worker explained the different types of energy that

the body uses every day. Cognitive is just one of them. So, when M.E. sufferers say they have run out of energy they don't just mean physical energy. It means their brain has run out of petrol too. This affects speech, memory, concentration and causes brain fog. To do the act of speaking (or singing)

you need to use your brain to work out what you are going to say, how you are going to communicate internal thoughts, as well as physical energy to make your facial/mouth muscles work.

Family and friends can always tell when my symptoms have worsened because I go quiet. When I do speak my speech may be slurred because my tired facial muscles just don't want to work properly or what I say doesn't make any blooming sense! I get particularly frustrated when I can't get my words out properly, this frustration makes my speech even slower and this is usually when people have to fill in my sentences for me. I get exceptionally breathy, I am not a biology wizard (Click the link for info on speech mechanics) but assume it is because tired throat muscles aren't operating as they should and affect my voice box. I get a bad sore throat at the same time and swollen glands also affect the sound of my voice.

Being a chatterbox was part of my personality and it does make me sad that a part of me has been taken away. It is very difficult to communicate a bubbly outgoing personality silently. For now, my friends and family should be thanking M.E for giving their ears a rest!

Love
Sally xx
(and Foggy OBVIOUSLY)

Childhood ME

Hello,

I know I have spoken before about this being my second bout of M.E but I have not really elaborated on what my life was like during my teenage years and how M.E changed my life.

Let me clarify, I was never diagnosed with M.E. I underwent a wide range of tests during a 2 year period but doctors were baffled about the cause of my symptoms. It is only with hindsight, and the fact this (diagnosed) bout feels exactly the same that I know I had M.E as a teenager. Since starting my Foggy campaigning, I have discovered it is not unusual for someone to have M.E in childhood and again in later life.

My symptoms started at the age of 14. In the UK, we start making important schooling decisions around that time. What do you want to do in the future? What qualifications will help you to get there? My GCSE options years were extremely stressful as I am a worrier. I worried about absolutely everything and anything and I finally had something BIG to worry about!

Funnily enough, my memory of that time isn't great! I don't remember a specific trigger. I wasn't struck down with a virus as with this second bout. So, I believe stress was my trigger the first time around. I was away from school for at least a year in total (over a 2 year period) and studied at home where I could regulate my own energy levels. When I did venture in to school I could barely make it past lunch time before extreme exhaustion and dizziness struck. I built a fantastic relationship with the school nurse who would let me sit quietly whilst waiting for one of my parents to come and pick me up. 

My parents were exceptionally supportive and were concerned about what was happening to their little girl. It must have been an incredibly difficult time for them as the medical profession didn't have a clue what was going on. One particularly traumatic episode for my mum was when she had to take me to the STI clinic to be tested for STI's. Our GP wanted to rule out sexually transmitted diseases. Now, I realise that some 14 year olds have sex BUT I had been virtually housebound for over a year at this point! To say my mum was not impressed would be an understatement, she took it as a personal attack on my virtue.  

Sleepovers

M.E robbed me of what should have been the time in my life when I carved out my own identity. All of my friends were having sleepovers and movie nights out. They were in school gangs and had built strong relationships. Even now I find group nights out slightly alien, it's not something I grew up with. I had one best friend who kept in touch but that friendship soon faltered over time. It was an incredibly lonely time for me but I strongly believe it made me the person I am today. I can fight adversity against all odds and know I will come out the other side alive and kicking. 

M.E didn't beat me the first time around. I came away with 9 GCSE's above grade B and went on to college and later university (undergraduate and postgraduate). The fact that I have got over M.E once gives me hope that this second bout will end one day. The childhood bout ended overnight, almost as if it hadn't happened. I live in hope that one day I will wake up feeling.....refreshed!

Love 

Sally
(and Foggy OBVIOUSLY!)
 xxx

Candida Albicans

Hello,

In recent months there have been many articles about the link M.E has with gut health. As I have intolerances to many foods I started to pay attention. In my early twenties, I visited a Kinesiologist to help with various, non-M.E. related health issues. She immediately said I had Candida and put me on a very strict, short-term, diet to eradicate Candida from my body.She explained Candida Albicans to me as a sort of candy floss that spreads like wildfire within the body clogging up bodily systems and stopping the body from functioning correctly. Weight fell off very quickly and my health issues cleared up. I am a convert. However, such a strict diet is impossible to stick to at the best of times, let alone when I was a student with no money! Vitamins and probiotics are not good for those on a tight budget.

I have attached a link to the Candida diet information. Mine wasn't as strict as this but the concept is the same. http://www.thecandidadiet.com/

I had an endoscopy about 2 years ago, results were inconclusive but doctors said there was an

inflamed part of my colon that they couldn't explain. My decision to revamp my diet came about because my M.E. symptoms have been steadily worsening due to nearly a year of constant stress.

Candida Albicans

There is nothing I can do about the stress until my circumstances change and so I looked to gut health and diet to see if I can improve my symptoms.

I am not saying that a Candida diet will get rid of M.E. I am simply seeing for myself if improving my gut health reduces my symptoms. Any improvement would be welcome.

I stopped eating sugar initially. I had a horrific headache for the first 5 days. I was surprised because I don't eat a lot of processed food because of the intolerances I have and I don't drink tea/coffee with added sugar either. I also, like many sufferers, don't drink alcohol often. However, the sugar withdrawal made me feel dreadful. A bit of research showed me that this is 'normal' so I wasn't worried. Next I took a course of VSL3 - Uber strong probiotics for 10 days. My body was absolutely wiped out by this probiotic. I personally feel this is because it was causing changes in my body that my body needed energy to deal with. I started to feel slightly healthier by day 8.

At the end of the 10 days, I went onto Acidophilus probiotics and started the Candida diet I had been on years before. Candida 'die-off', when the Candida dies off and leaves toxins in your system, has made me feel rough for the past couple of weeks. I am planning on being on the diet for a while to see if my health improves. I feel I have to try SOMETHING.

Even if the diet doesn't help my M.E. I will be eating healthier by cutting my sugar intake and not eating processed food. I have already lost 8lbs in a fortnight. Less weight for my energy-lacking body to lug around! I am eating a lot before anyone says a strict diet means I am not getting energy/fuel from food. I simply eat seeds for snacks instead of chocolate and am eating veg by the bucket load. I think it may take about a month for my body to settle down into some kind of routine. I am hoping that my settled body will be slightly less frazzled and a bit healthier.

I wrote this blog to show that people with M.E. will try ANYTHING to see if symptoms improve. Healthcare providers don't help so we have to help ourselves.

Love,

Sally
(and Foggy OBVIOUSLY)
xxx

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)