M.E. Awareness Day #UndiesChallenge #MillionsMissing Plus Spoonie Survival Kit

It's that time of year again, when ME/CFS sufferers worldwide take to the internet to raise awareness and funds for this debilitating condition. So I thought I would take a second to tell you about the disease that has well and truly kicked my behind. 

It is usually triggered by a viral infection, from which the sufferer never seems to recover. For me, catching cold sores was the beginning of my decline over several years. When I was diagnosed, in 2008, the fatigue was relentless, but I ignored it as much as I could. I could use willpower to push through it and do things I wanted to do - like go to work, go clubbing, have a day out with friends or family. But each outing left me exhausted and weak the next day. I quickly learned that two days of activity in a row was almost impossible. Over the years my condition has worsened to the point that I had to give up the career that I loved, and I need to be pushed in a wheelchair in order to go anywhere that involves walking more than a short distance. 

No amount of rest will relieve the exhaustion I feel. Having a bath or shower and washing my hair is a monumental undertaking. My memory is atrocious - I constantly forget common words and get lost in a haze of brain fog. Thinking feels like wading through mashed potatoes. If I've been out of bed for longer than usual, my joints and muscles will ache the next day. Sometimes they ache when I haven't done anything. My balance is terrible - I often stumble into door frames or stagger like a drunkard. I was supposed to post this early this morning, but I slept all day today after going out yesterday.

ME sufferers are not looking for sympathy. We want to raise awareness and fund research into this disease, so that soon there may be an effective treatment or cure.

My first step to achieving this is to do the #UndiesChallenge!

That's right, I'm wearing my underwear on the outside like Superman, because I'm a superhero for ME/CFS! I'm donating £10 to the Open Medicine Foundation's END ME/CFS Project at bit.ly/UOTO1 and I nominate YOU to do the same! If you're reading this, you have 24 hours to post your #undieschallenge selfie on social media, donate £10 or whatever you can spare and nominate 3 friends to do the same!

My second step is sending my shoes to London for the #MillionsMissing virtual protest on May 25th! Millions of people, all over the world are 'missing' from the lives they would have lead without this disease. Missing out on their careers, hobbies, trips, relationships they simply do not have the energy or strength for. The London event is on 25th May outside the Department of Health, to protest the lack of funding for ME/CFS research. Of course, as most ME sufferers are too ill to attend, we are sending our shoes to represent us!

Image via In The Now, Youtube.

Here are the shoes I'm sending. Bye shoes!

Click here for information on how to send you shoes for the protest.

Another way to support the protest is to sign and share the petition demanding the US NIH adequately fund ME/CFS. What are you waiting for?

For step three of supporting ME Awareness Day I purchased a special Spoonie Survival Kit for ME Awareness Month, which is May. Spoonie Survival Kits are 'little bags of happiness that contain a range of items that will hopefully help those with long-term conditions to smile, and remind them that they are not alone.' Usually 75% of sales money goes to chronic illness charities, but this special kit has 100% of sales money going to the ME Association! 

Want to see what I got?

It comes in a blue organza bag, along with a leaflet from The ME Association. Inside the bag, everything is wrapped in blue tissue paper. It's like a present!

The first thing I got is this ME awareness wristband. It says 'It's real. It's physical. It's M.E.' This refers to the widespread belief in the medical community that the disease was 'all in the mind'. This has only begun to change in recent years with new research providing irrefutable evidence of a biological origin. 

The second thing I got is an M.E awareness ribbon from M.E. Support. I immediately put it on my backpack, which I have decorated with other brooches and badges. What do you think?

The third thing I got was this pretty elephant bracelet. It's supposed to act as a reminder to help with the memory problems that come with ME, because 'elephants never forget'!

The fourth thing I got was a spoon charm, referring to the Spoon Theory, and chronic illness sufferers as 'Spoonies'. I think I might put it on my necklace. I'm holding tight to it today, I used most of today's spoons on yesterdays trip out, and even though I was in my wheelchair 99% of the day my hips and thighs are killing me right now!

The next thing I got is this lavender heat bag for aching muscles! You just pop it in the microwave for 30-40 seconds and it soothes ouchies, smelling lovely all the while!

The last thing I got was this ME Association balloon. I love balloons!

What are you doing for ME Awareness Day?

Til Next Time,

Emma
xXx

M.E Awareness Day, The Princesses & M.E

I'm taking a break from beauty related posts to write about something more serious,  and a lot less fun. Today, 12th May, is ME Awareness Day. As an ME sufferer, I wanted to share with you my story, and what it's like to have this disease. 

I first began suffering from Myalgic Encephalomyelitis, otherwise known as Chronic Fatigue Syndrome, in 2008. Onset is usually triggered by a viral infection - I caught cold sores that didn't heal for six months, accompanied by a constant feeling of being run down and worn out. After a plethora of tests and referrals, I was finally diagnosed with CFS/ME. In the early days of my illness, I ignored it as much as possible. I was functioning at about 60% of full health - throwing myself into my work and occasional social life, and sleeping or resting every spare minute I got. 

Then in late 2010, one week into a three week TV series shoot, I fell ill with suspected swine flu. The stress of the long hours, combined with the shock of a sudden death in the family, made me particularly susceptible. Since then, I fluctuate between 50% and 20% of normal functioning.

So what does it feel like to have CFS/ME? Think of a time when you've had a really bad flu or virus, and you're over the worst of it, but you aren't better yet. You're weak as a kitten, your muscles and joints ache, and simple tasks like getting out of your chair, washing your hair or preparing a meal take monumental effort. This is daily life with ME. 

'Hang on,' I hear you say, 'you can't be that ill, I saw you down Romford/ doing makeup/ up the pub' (delete as appropriate). Let me explain to you the concept of 'spoons'. 

Physically, I feel like lying down or sleeping 24/7. Mentally, I want, no I have to do stuff otherwise I'll go completely mad. 

So in order to do anything at all, I have to use willpower and determination to get myself moving, when really I feel like curling up in bed. But when I do any physical activity, I'll pay for it the next day. This is where 'spoons' come in. Imagine energy is measured in spoons (don't ask why, just go with it.) A healthy person has 10 or 15 spoons a day to spend on activities, until they run out and feel tired. With CFS/ME and some other illnesses, you might only get 5, or maybe 3 per day. 'Wait,' I cry,  'that's only enough for breakfast, showering and getting to the bus stop! What about the rest of my day?'  

'Shh,' says the devil on my shoulder, 'just push through it, borrow some spoons from tomorrow.' 

I try to go about my day, walking slowly, needing to sit down here and there. 

Then tomorrow comes and I feel even more like hell than usual. I spend the day in bed, I don't get up to eat, I barely manage to drag myself to the bathroom. This is known as spoon deficit, but doctory types like to call it post-exertional malaise.

It's not recommended to push yourself or overdo it, but what choice do I have? The other option is staying in bed every day, and that gets boring and lonely very fast. I have ambitions, I want a life. And so do the millions of other sufferers around the world. However, there are currently no biological treatments offered for ME. Because the disease is so poorly understood, sufferers are only offered therapy or counselling to help them cope, along with painkillers or antidepressants (because, let's face it, this disease sure sucks the fun outta life). Some doctors until recently even thought the disease was psychosomatic, or 'all in the mind', but research has proven there is a real biological cause. 

Lives are ruined by this disease. Most never recover, some are left bedridden, some even die from it. We need more research to find effective treatments, and maybe even a cure, for this debilitating illness. 

This is why I am joining The Princesses and ME, to try to raise money for ME Research UK.

It started when a group of friends with ME started comparing themselves to princesses. 

The similarities - (taken from Me, Myself and M.E)

"Sleeping for a very long time like Sleeping Beauty

Being really uncomfortable in our beds and the slightest things annoying our conditions like the Princess and the pea

Feeling like we've been locked away  in a tower like Rapunzel

Wanting legs that work like Ariel (find me Ursula now!)

Being out past midnight is way too late for us to stay out like Cinderella and just like her brainfog would probably mean we left something behind

We have a large propensity for hope

The bed head of Princess Anna from Frozen (anyone else love that moment and think hey she's just like me)

And we are in search of a fairytale"

In order to raise money for ME research, I will be dressing up as a princess! I did aim to do it today, but in true ME fashion, I felt too ill - I had a stinking cold to contend with, on top of everything! This is also why I am posting it at 11pm at night!

I tried to take a quick selfie, but I look as ill as I feel! So take this fancy princess pic of my teddy, Theodore, as an IOU, and watch this space for fabulous princess Emma!

It would mean such a lot to me if you could make a donation. It doesn't matter how small, every little helps! The charity I've chosen does not test on animals, and funds research working towards effective treatment or a cure for ME.

 

Thanks for reading,

Til next time,

Emma
xXx