Why ME? What makes me so different?

Hello,

One of my internal questions that has the ability to drive me to distraction is 'Why me?'. So many of my friends regularly catch bugs and infections and get back to their pre-illness lives within a short period of time. I have fabulous friends, many of whom are physically fit, driven professionals who work long

hours and burn the candle at both ends. So what made me different to them? How come Myalgic Encephalomyelitis (M.E) chose to mess around with my life and not theirs?
Let me stress - I would not wish M.E on my worst enemy let alone one of my wonderful friends.
I have lost count of the number of times I have told friends to not push themselves too hard or to not rush back to work too soon in case it causes further repercussions. In most instances, my advice is ignored and they just recover and move on. I think, perhaps, this is the reason many don't understand the nature of M.E. How can it be caused by a virus or injury that anyone around the world could have had? This is why research is needed. There is something in me, whether that is in my DNA, gut or other part of my body, that didn't recover post-virus. 

No tangible link has been established amongst sufferers and so, at the present time, I believe it could happen to anyone, anywhere. So, I will continue advising friends to take it easy and to be kind to themselves because it could happen to anyone.

Love

Sally x

The 'Others'

Hi,

From day one of Foggy's creation, I have ensured that his campaigns are positive to ensure maximum engagement with his Followers. My theory is that even people who know nothing about M.E, it's history and current internal politics, will love Foggy and learn whilst having fun. At the moment, there is a trend on social media to highlight the very real, negative points of M.E in the hope that, as with cancer, non-sufferers will see how dreadful the illness is and empathise/sympathise//understand/help create change. However, I strongly believe this is not the best way forward.

The 'Others' refers to people that have not been affected by M.E, whether as a sufferer, carer, relative or friend. I'm giving them that title because of the inclusive bubble we seem to have created around ourselves that excludes everyone else. I agree 100% that forums and networks are very important for sufferers and carers for support and information reasons. Unfortunately, these sites can be so inclusive they do not help to raise awareness externally. Seriously, do you think that someone who wants to learn about M.E will spend longer than 2 seconds reading the latest arguments and social media bickering about what M.E should be called or whether the latest research was a waste of time? Negativity does not lead to engagement.

If we are going to successfully progress forward in terms of awareness and subsequently research funding, We must make M.E as inclusive and accessible as possible. Stressing the basics rather than the intricacies of an already extremely complicated and multifaceted illness will help 'the Others' understand the phenomena that is Myalgic Encephalomyelitis. As a community, we are very good at supporting each other and offering a caring word when desperately needed. However, we seem to be alienating the very people that we need help from whether that is financial or emotional. Many of us can't work and are on benefits. It is a fact that most charitable fundraising projects come from sufferers, carers or our families. We need to widen that circle to end the constant struggle to raise research funding. 

It is bizarre to me that, in the main, the people with the least energy (sufferers) are having to do their own fundraising to pay for research into their illness! We need more of the 'Others' to understand and appreciate that it could happen to them. That M.E is so common, there is a kind of 6 degrees of separation, they WILL know someone who has been struck down with it. Whether that is a relative, friend, work colleague or someone they knew at school. The cause is not known so no preventative measures can be taken ie. diet, lifestyle, drugs. With that in mind, everyone should be concerned that the seriousness is not being addressed by many governments and health authorities. 17 million people worldwide is too big a number to be ignored and misunderstood.

At Foggy's launch back in July 2014, I was the only M.E sufferer in the room. The 'Others' were in the majority. Overall, I have encountered a willingness to learn and empathy.

They all wanted to learn about the illness, since then these lovely people have been immensely supportive and have helped with my fundraising. This is an example of my reasoning. Inclusion of everyone will only lead to progressing forward. Open up and let people in, yes there are doubters and negativity has to be endured from some quarters but on the whole support and a willingness to learn can be experienced too.

It has repeatedly been said to me that donations are low because sufferers don't have much spare cash. It is a fact that the 'Others' made up more than 80% of donations during the last campaign. This, again, stresses my point that these fabulous people should not be excluded from our cause. True, they do not understand 100% of the illness but then does anyone? All of us experience a wide range of different symptoms to varying levels. It is hard for us to understand them let alone someone who only sees the 'invisible illness'.

Love,

Sally xxx

Bungalow

Hi,

I have a thing about stairs. I just don't like them. I have had too many accidents involving falling up...or down...a set of stairs for it to be funny!  I have made it my life's ambition to live in a bungalow or at the very least a ground floor flat with the bare minimum of trip hazards! 

I have always been clumsy, throughout my childhood years, I always had bruises and scrapes from falling over and bumping into things. But, in the past 10 years, a couple of years before M.E hit up to now I have broken a few

bones and given myself concussion from the evil that is a staircase!

From an M.E. point of view, stairs are absolutely not good for my health. Disequilibrium/feeling a bit giddy/low blood pressure and limited spatial awareness has lead to so many stumbles halfway up a flight of stairs. My brain not knowing where the last step is has caused so many issues! Don't even get me started on the

Mount Everest

energy required to put one foot in front of the other to climb stairs. Why do you think people have physio post stroke or after a major injury to be able to climb stairs independently. Stairs are tricky.

I have lost count (it's in the thousands) of how many times I have got halfway down a flight of stairs only to remember the thing I had forgotten to do upstairs. I know that happens to everybody. The act of forgetfulness isn't reserved purely for people with chronic illness. However, the sheer level of *ARGHHHH* that comes with the knowledge that A. you forgot something B. have to manoeuvre 360 degrees without falling over and C. that you need MORE energy to go back up or to think of a plan B(get someone else to do what you had planned on doing) is exhausting!

I live with my parents. This being the case, most of my possessions are in my bedroom, which is upstairs. EVERY DAY, when preparing to leave the house, I have to go upstairs to get something. Whether that be a pair of shoes, sunglasses, handbag and a lot of the time a combination of things. Do you think I remember everything in one trip? NO. So, by the time I do eventually leave the house, I have wasted at least 20% of my energy going up and down blooming stairs!

My energy has flat-lined a number of times midway up a flight of stairs. It's a bit scary when that happens but I find just resting for a minute gets me to the top. Sometimes a flight of stairs in a department store can be my own personal Mount Everest challenge! Muscle fatigue is also an issue linked to climbing stairs. Stair-climbing can turn my legs into slabs of concrete that are too heavy to lift. Not because I am unfit but because of the level of energy required to do something that everyone else takes for granted.

Love,

Sally xx

Back to Basics

Hi,

Real Madrid

Foggy is currently in Spain for the Real Madrid vs Sevilla football match

tonight. Going to this match means that, so far in this campaign, he will have done sport on two different continents. Next week he is heading to Cape Town.....Africa will be the third continent to be Foggy'd!

This blog post is going back to basics. Since ME Foggy Dog was created, I have written about the human side of M.E. Today's blog is literally going to tell you about M.E as a whole by using extracts from the M.E Association website (www.meassociation.org.uk). 

'All types of people at all ages are affected. Severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration are commonplace. In many cases, onset is linked to a viral infection. Other triggers may include an operation or an accident, although some people experience a slow, insidious onset'. 

'In some the effects may be minimal but in a large number, lives are changed drastically: in the young, schooling and higher education can be severely disrupted; in the working population, employment becomes impossible for many. For all, social life and family life become restricted and in some cases severely strained. People may be housebound or confined to bed for months or years'.

'Most people with ME/CFS fall into one of four groups:

• Those who manage to return to completely normal health, even though this may take a considerable period of time. The percentage falling into this category is fairly small.
• The majority, who tend to follow a fluctuating pattern with both good and bad periods of health. Relapses or exacerbations are often precipitated by infections, operations, temperature extremes or stressful events.
• A significant minority, who remain severely affected and may require a great deal of practical and social support.
• A few, who show continued deterioration, which is unusual in ME/CFS. When this occurs, a detailed medical assessment is advisable to rule out other possible diagnoses'.
• (Extracts from http://www.meassociation.org.uk/about/what-is-mecfs/)

This week, I created an online poll on Twitter. I wanted to know how much Foggy Followers felt they had learned from following Foggy. I have been pleasantly surprised by the poll results received so far. There are a number of people, however, who still do not 'get it'. This is completely understandable. M.E. is an incredibly complex illness to understand. With so many symptom combinations to get your head around it is like trying to hold a blob of jelly still. Constantly moving and changing. I hope that over time more people understand the nature of M.E and Team Foggy's mission of raising awareness will have been achieved.

Don't forget to sign up for Foggy's email newsletters! Weekly newsletters start today. Please sign up via mefoggydog.org.

Love,

Sally xxx

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