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